Pain

Not much to say.. but i wanted to write this, the pain is getting worse mainly in my legs the back of the top of my legs, the back of the bottom of my legs. A little in the front of the top and bottom of my legs. The pain is getting so much worse and it feels so tight and excrutating more than i have ever felt before in my legs it. It is there day and night whether i stand or sit or lay down and makes me cry in pain. It started before the Gabapentin so it is not because of that.

I feel like i cant cope with it but i am trying my best to because there is no alternative i am taking my daily morphine morning and night as well as extra morphine as i am allowed to but it is not enough to take away the pain. I hope that this is not going to ruin my christmas to much :-(

I want to see my doctor but i dont think there is much they can do and i think they will blame the Gabapentin and take me off of it and i really want to see if it works i may just have to put up with this pain for the month and a half or so till the Gabapentin kicks in if my sanity can cope that long!

Trip to the doctors

The doctor put me on Gabapentin Yay at last! I have done some research on wikipedia

http://en.wikipedia.org/wiki/Gabapentin (In 2002, an indication was added for treating postherpetic neuralgia (neuropathic pain following shingles, other painful neuropathies, and nerve related pain).[4]

has been found to be effective in prevention of frequent migraine headaches,[5] neuropathic pain[6]) so it looks like as well as helping my muscle pain it may well help my migraines which i didnt realise which is really good!! of course there is a possiblity it may not work at all as every drug does not work with every person but i can be hopeful, If i could cross my fingers i would!! I will be on a relatively high dosage of 900mg which will start at 300mg and go up over 3weeks, the only slightly annoying thing is that i will have to take 1 tablet 3 times a day.

Also my doctor agreed to write a letter to our housing officer re the marking of a disabled parking space which is really good and she signed the free prescription letter the FP92A meaning i no longer have to pay for my prescriptions for the mean time.

So all in all it was a very good doctors visit.

So much happening.. so much pain

I have had the dreaded cold/flu bug like most people so have been quite sick, i ended up with a chest infection and it also effected most of my glands. The general cold sickness part of it seems to have gone now. However with fibro it seems to take alot longer to get over the general germ.

I have been sleeping alot more recently and noticing that doing the slightest thing has made me tired and that i am having to rest and sleep afterwards i dont know whether this is because of the cold i had or whether my fibromyalgia is worsening in this area.

I have also noticed that my memory is getting much worse i am struggling to remember the date, times, special occasions, my memory used to be something that i took for granted but now its getting much harder to remember things. I must admit this is scaring me alot probally because of how good it used to be.

My general condition seems to be going downhill i seem to be getting shakey and wobbley when i walk with my legs and my arms i find it more difficult to steady myself and i am falling more often but being proud i dont tell people unless i have to or unless they are there.

We have gotten a few things in motion in the past few days, we have been to a local shop and have bought a few items,special knife, fork, spoons, also a raising desk thingy, a grabber, and a few other items that will make things a little easier around the flat for me.

We have also contacted the local Occupational Therapist and they have arranged for some items to be sent out; a special seat for the bath, a perching stool, a surround for the toilet to help me stand up, some raisers for a chair i sit on in the lounge and a few other items. The Occupational Therapist will be coming out but there is a waiting list of about 4-6 months but the items should arrive just before or just after christmas.

I have also been in contact with the company which manage the block of flats as every person who has a flat here also has a allocated parking space, ours is right next to the front door. However no one seems to park in their correct space and we usually end up having to park quite far away from the front door which is quite unfair especially as i am on crutches and have walking difficulty. I spoke to them and advised them that i was now registered disabled, apparently if i can get a 'note' from my GP i can get a disabled logo put on our space.. why i need a note i am not sure.. as i sent them a copy of my DLA letter which shows i am disabled and can not walk far.. i just think they are making me just do more work. I am seeing my GP later today and will ask her if she will write a letter re it.

I have also looked into prescriptions and the FP92A and think that i will be valid for free prescriptions under the fact that i can not go anywhere without a carer ( http://www.silverdalemedicalcentre.nhs.uk/scripts/gp_cms/document_uploads/Certificates/FP92Amedical%20exemption.pdf ) shows the form

I have also recieved my disabled 'Blue Badge' which was amazingly fast via post only two days! and also a bus pass i dont know how often i will use this but it may come in handy.. and apparently my carer cinema pass will be with us shortly..

Also need to discuss with my GP about going on the new Gabapentin as i really am suffering at the moment with pain in my joints and muscles. The pain in my head is increasing as the amitriptaline is being reduced but something really needs to be done i dont want to be in this much pain over christmas i feel like the pain is driving me crazy and i am fed up being stuck in bed.

I have to keep switching between sitting up and laying down so being in bed is the only sensible idea when my fiance is at work.

The hydro pool is all sorted out again so was back at hydro but havent been for a few weeks due to the cold/flu/chest infection but hopefully will be back next week!! all these breaks.. will get my 6 sessions! i have two sessions left i think.

Feeling a little isolated at the moment havent been outside much due to being ill and being in pain and being so tired and sleepy

YaY

Yesterday i had a letter one i have been waiting for since june. I finally got DLA! (Disability Living Allowance) and they are backdating the payments to June. I have got the Higher rate of mobility which is about £47 a week and Lower rate care which about £18 a week. I dont know how often the payments are or when i will be getting the backdated money i will be calling them monday to sort everything out. But it is a big victory! I have been looking at a website http://www.enabledpeople.co.uk/ which has alot of information on what people on higher rate mobility are entitled to ( Eg mobility cars, carers passes at the cinema, bus passes, blue badges for car, train passes etc) so i will be making alot of phone calls monday!

The headaches have been getting bad but i have been trying to deal with them as much as possible, i have had to take a boosted dosage of 175mg of amitriptalyne every couple of days. I am about to go to 75mg and 100mg every other day slowly getting there! just wish the pain wasnt increasing!

Lots going on

I have recieved a letter from the other hospital which my GP wrote to saying that i have been accepted by the pain clinic there, however the appointment is not till the end of January 2009 which is a little while away yet.

I am continuing to reduce the Amitriptaline down but due to the pain i am having quite a few sleepless nights and i am becoming edgy in the day; the light is becoming more difficult to deal with and i am having to spend more time in bed and i am becoming more of a recluse. Simon is even having to record tv shows onto dvd (And wiping them after i have watched them) because i am too tired to watch them with him and also our main tv is to bright. So i am having to watch them on my laptop which i can reduce the brightness down quite a bit and also i can watch them in bed.

Once i have reduced the Amitriptaline i can start the Gabapentin and see if that helps my muscles. My GP said that i dont have to come off of the amitriptaline altogether but i would like to as it is one less drug in my system but it depends whether or not i can adapt/cope with the symptoms of the headpain; admittedly most of the symptoms are blocked by the Topiramate but we will have to see what happens

The Hydrotherapy pool is being resurfaced; i was told this was going to take two weeks at at the time we were told this was happening we arranged another appointment however it has now been 5 weeks since i had my last Hydro session. On the NHS you only get 6 sessions and i am pretty certain that after the 5 week break i have now had that the work we did in the previous 2 sessions has now gone and that any muscle tone will have to be worked back up again but i only have 4 sessions left! After the 4 sessions i have left i will be going back to physiotherapy.

My hands and legs are still hurting alot, Simon is still having to sleep in the spare bedroom quite a bit for fear of touching me the night or bumping into me. I need to contact the Occupational Therapist again to see if they can give advice about a few items around the home to help.I am still struggling with holding knives and forks but tend to use a spoon now as its easier to use one item rather than too. Luckily if we do go out to eat around friends/family etc they understand so it has become less embarrassing but i still find it a little so especially if i have to get Simon to cut up my food.

I have had a few falls over the last few weeks and i am having to use the crutches around the house more, i use the crutches all the time when i go out, but not all the time at home as i use the walls for support occasionally.

My GP when i saw her last week advised me she had completed the DLA form and sent it back along with reports from all my consultants, several days ago i called the DLA and they told me they had recieved it and were looking at my case so hopefully i should get a result soon. *Crosses Fingers*

So with having to spend more time in bed because of the pain and Simon having to sleep in a different room alot of the time i am feeling a little isolated but i suppose thats what happens with fibromyalgia. Our Cat Timmy gives me some comfort its amazing home comforting animals can be.

I am trying to keep my head up and not let it get me depressed i think it gets Simon down if he sees me low which in turn if i see him low makes me feel down. We try to do what we can to keep things as "normal" as we can he takes me for drives after dark so i can get fresh air and i go see my parents and my sisters and my niece and nephews. I have learnt not to let the fibromyalgia beat me. Before had fibro i was on antidepressants for various reasons and the amitriptaline although i use it for pain is an antidepressant, i am looking forward to coming off of it (or being greatly reduced) for the antidepressant factor.

After speaking to the DLA (Disability Living Allowance) people they said they have sent out several forms to both my GP and my consultant i have chased both of them and my doctor has finally responded to them so hopefully i should hear something soon. Whether it is good news or bad news i dont know but if i am refused i will appeal against the result. The claim has been going on since June now its ridiculous i shouldnt have had to chase this up so many times when i am sick and feeling this bad.

I am trying something new that someone at the Fibromyalgia group suggested to me. Growing Sprouts. It sounds really odd but basically you grow beans and seeds till they sprout and then eat them because at this stage they have alot of vitamin and minerals and can help medical conditions. I have tried the Brown and Green Lentils and i must admit that i am feeling like i have more energy. The link i am buying the Sprout products from is : https://www.livingfood.co.uk/ the first page also has the theory behind it all. I also spoke to my GP yesterday and she said that it can not do me any harm and to continue trying it.

I have not had any Hydro for three weeks now as the pool is being resurfaced, i feel like i am back where i started and i am sure that when i start back its going to hurt like hell afterwards like it did after the first session. I only have four sessions left and then i go back to the Physio Nick and see what happens from there.

When i saw the GP she advised me that she had a reply back from the pain clinic and that they could not help me because they did not have the means to help me. The GP seems to think that the hospital she refered me to are confused because of my first referal was by the psycharist and she is refering me to a different hospital.

Lots going on

Lots of things going on...

The amitriptilyne has been reduced to 150mg i was wrong before its weekily periods that its being changed for so it was 175mg and 150mg for a week and now i am 150mg for 1 week and then 150mg and 125mg for 1 week and then 125mg for one week etc. There doesnt seem to be any problems with the lowering of the amitriptilyne so far which is good. My headaches were getting a little bit worse before it was being reduced but Doctor Adams has put my Topiramate back up to 200mg as it was lowered to 150mg previously.

I have now had two hydrotherapy sessions and it seems to be going well, the first sessio was quite painful i suppose as my legs were not used to being moved and exercised with the hydro exercises. I was in quite alot of pain afterwards; aching but the therapist said that this is normal and will happen for the first few sesssions. The hydro is also making me more sleepy so i am needing to rest more in the week before and after the sessions. Luckily Simon is able to get time off of work to take me so he is able to help me undress and dress myself. The hydro department did offer someone to help me but i didnt really like this idea and as Simon was there to take me and pick me up as the sessions only last half an hour he was more than willing to help. The second session went okay, i was a little weaker as i had my last wisdom tooth out the day before.

The exercises seemed a little easier. I have been struggling a little to get in and out of the hydrotherapy pool as i am not allowed to use my crutches because the bottom has touched outside and would therefore be unhygienic so i have to walk the steps in and out holding onto a rail. Getting out of the pool is more difficult as i am slippery from the water and i have nearly fallen several times but i do not wish to use the hoist. The pool is now closed for two/three weeks to resurface part of the pool. I have four more sessions left as only six sessions are available on the NHS after that i will go back and see the Physiotherapist hopefully with more movement in my legs and knees.

One of the ladies that is in my hydrotherapy group also has fibromyalgia; she is the same age as me and has not met anyone before with the condition, i have also advised her of the website and local group.

I have called the DLA (Disability Living Allowance) people to see why i have not recieved any news of my claim, they said they have written to my Rhemotologist and not recieved a reply so they have now written to my GP and are waiting on her responce.

I have spoken Doctor Hepburns secretary and they say they have not recieved a letter from the DLA, they have however written to me stating a lot of information RE my illness which i have kept. IF i am refused DLA i will use this letter in my appeal.

I am a little worried about my GP writing to the DLA only because it was because of her letter previously that i was refused in January. Hopefully this time i will not be. Otherwise i will appeal. My doctor can be very funny; when i am there with Simon she seems to be fine when i am there alone she is different and very cold.

She also should have recieved a copy of the letter from Doctor Hepburn which should be useful when filling out the form i have called the surgery several times to see if she has gotten it but gave up after calling every day for two weeks it should be there by now!

The pain in my legs and my hands has increasingly been getting worse and i have been getting weaker it is slowly getting more and more difficult for me to do things. Several times whilst walking my legs have given way and i have tripped or fallen to the floor altogether. It is worrying me i am really pinning my hopes on the hydro and physio.

Tomorrow i have the fibromyalgia group in Worthing i am looking forward to that. Also i have made some friends via facebook with fibromyalgia.

Rhemotologist

Saw the Rhemotologist today as yesterdays post said i was going to. Unfortunately he didnt not put me on the new medication as he said that it would react; as we couldnt lower the Topiramate any more because it made my headpain very bad he told me he wanted me to come off of the Amitriptyline all together before i could go on the new medication.

I have been wanting to come off of Amitriptyline for some time as i have heard that very high dosages can effect the heart and i am on a very high dosage at the moment of 175mg per day. He told me to lower it slowly taking 150mg every other day and 175mg the other day for a fortnight and then 150mg for a fornight then 125mg every other day and 150mg the other day for a fortnight etc till i am off of it or on a very low dosage.

He asked me how i was, checked my joints and muscles but didnt say anything about them but suggested i take some supliments, omega 3 and 6, magnesium, vitamin B complex so we went to boots and bought them, two more tablets to take a day! but if they help it will be worth it. He also said that it is not worth me taking glucosamine as it will not help with fibromyalgia, he definetly knows his stuff.

No more appointments now for the rest of the week thank goodness feeling very tired and sore. Seeing my GP on monday will tell her all the changes to my medications both asthma medication and tablets oh the fun!

Havent been sleeping very well recently some days hardly sleeping at all its making me very tired and with the pain its making things very difficult.

Also we are slowly getting into a routine with rubbing the cream my GP gave me into my legs in the evening which seems to be helping as i am not waking as much in agony in the night as i was before. The cream is callled Algesal or Diethylamine Salicylate 10%

Physiotherapy...

I havent written for a while as not much has been going on with my fibromyalgia, my hands have slowly been getting worse but not much else really.

I have recently bought some adaptations from a website http://www.helptheagedshop.co.uk/ okay it looks bad but they have alot of things that can help you if you are disabled, the products arent for the elderly its just the money that goes towards the charity help the aged. I bought several items that should make life a little easier and recommend the website as they were much cheaper on the products but it is also a good cause.

I saw my Asthma nurse at my local hospital, okay it has nothing to do with fibromyalgia but they have adaptations to help with things too, i mentioned that with my hands getting worse that i was struggling pressing the inhalors she mentioned several options including inhalors that pumped themselves but after trying a few of the options i found something i liked called a "Haleraid" it is a handle device that goes over the inhalor and is like a handle that you press towards the inhalor and it pumps it. Which is much easier if you have problems with your hands.

After seeing the Rhemotologist in may and being refered to physiotherapy i finally had my first session today (well tuesday as its just gone midnight) for my knees only though at the moment. He asked lots of questions about how much pain i was in and asked what medication i was on (good job Simon was there) and said that i didnt have much muscle around my knees and that the problem with my legs was degenerative, which scared me as this may mean the possibility of a knee replacement or being in a wheelchair in the future.

He also said that as i am unable to move my legs much at the moment he would not be able to help me much at this time and he is refering my for hydrotherapy at the local hospital. I have to call to make an appointment in a few days once he has transferred my notes. After 6 or so sessions he will see me again and then we can start doing some physio too. He did give me some exercises to try and start some movement which i will start doing.

I have an appointment tomorrow (being wednesday) with my Rhemotologist hopefully he will put me on a new tablet to help with my muscle movement.However it is possible he may not as i was to try and reduce a tablet i was already on but i was unable to lower the dosage much as the tablet i was already on is a painkiller for my constant migraine and i was unable to withstand the pain when it was lowered much.

Will probally write again tomorrow after seeing the Rhemotologist.

Still havent heard from the Disability Living Allowance people : (

Headpain

I was trying to slowly come of the Topiramate, one of the long term painkillers for my painkillers i was on 200mg originally. I got to 100mg and the headpain came back with vengance; i thought that the topiramate wasnt helping the headpain and i was mistaken i had forgotten how bad the headpain was. Unbearable to the point of screaming yet not wanting to scream for fear of making the headpain worse. So my fiance and i descided to up the dose to 150mg it took about 1 week or so to build up again in my system but in that time i had to suffer the agony of the headaches as well as the other fibromyalgia symptoms.

My Rhemologist said that i was to try and come off of the Topiramate to go onto a new tablet that could help the pain and relax my muscles will have to see what he says when i see him in october.

My Gp has also prescribed me some local anaesthetic cream to rub onto my joints several times a day it seems to be helping.

About a week ago i recieved a letter from the Disability Living Allowance people thanking me for being patient its been a number of months now i dont know whether to take the letter as a good sign or a bad sign...

Medication

The Fentantyl increase didnt seem to be helping much and i saw my GP on wednesday i was at the end of my tether. I have barely been sleeping because of the pain keeping me awake. Simon says i have been very ratty and arguementative; a sign he thinks that it isnt working too. My Gp didnt want to increase the dosage as so far its not doing anything and we are on 37mg patches.

So she suggested that we try something else as there are only two types of patches and the morphine ones gave me an allergic reaction and also the fentanyl ones not working she suggested trying tablets, So now i am taking Morphine Sulphate Tablets 10MG twice a day.

Shes also refered me to the Pain Clinic at the local hospital and also re-refered me to Physio. The Rhemotologist refered me several months ago and dont know what has happened so shes refered me again.

Still havent heard anything about the Disability Living Allowance its been just over two months now.

One less consultant..

Things have been a little crazy, the Fentanyl doesnt seem to be doing all that much as my normal Gp who knows all about "Me" and my "Fibro" is on holiday and none of the doctors at the local surgery want to do much. I been given morphine tablets to try and help the pain but they are turning me into a zombie and i feel like i am trapped in my own little world. Once again i am waking up in the nights crying and moaning from the pain that the Fibromyalgia is causing.

Simons been out most of the week helping run a holiday club, before i became ill this is something i used to do i went along on the first morning the "setting up morning" and couldnt do anything useful, i couldnt hold scissors, hold a pen to write, draw a picture or help decorate the hall i got rather depressed.

Eventually a doctor at the surgery put the Fentanyl patch a little but i have to wait till the 27th of August to see my own doctor, seems like a long holiday! although in reality its only about 4 weeks but thats along time when your in pain!

Saw my neurologist a few days ago about the medications i am on and how i am generally doing, she agreed that i should try to come off of the Topirate medication, we are not sure if it actually having any effect anyway. I am on 200mg at the moment if i come down to 0 by the beginning of October it will be in time to see Doctor Hepburn my Rhemotologist and he said that it would be a good idea to try me on Gavapentin or Pregablin both are medications that help muscle and joint pain, alot of people at the fibromyalgia support group are on one or the other of these so i am hopeful. The problem was Topiramate reacts with them so this problem will be solved.

Also the Neurologist said as we have a proper diagnosis now and also that i had to travel all the way to Southlands hospital (which is quite a distance) to go see her, that the diagnosis is not actually related to anything Neurological and she thought it would be a good idea to discharge me from the Neurology team. I was put under the Neurology team originally when i was admitted to Worthing Hospital when i presented with my very first symptoms which were severe headpain, vision problems etc.

So it looks like my Fibromyalgia care is now in the Rhemologist Doctor Hepburn's hands except for some other symptoms etc bladder problems, sleep issues etc which are in the appropriate department hands.

Morphine Problems

I have been getting very aggrovated recently; snapping at the smallest thing it didnt even occur to me that it could be that the morphine patch could not be working as well.

I have been in more pain recently, the stairs are taking a little longer to climb, small tasks i was able to do are taking at least twice as long but it hadnt clicked. Well not until Friday. Tuesdays are the day i put my Morphine 7 day patch onto my arm it sticks on my arm like a nicotine style patch giving morphine through the skin but this time it starting itching within a very short period of time. Then the itching started turning to a burning sensation.

Friday morning i took the patch off because it was such hot weather, underneath the patch was a very bad very red and sore looking burn that had started to blister and bubble under the skin and was turning a little yellow and was oozing. Obviously if this was happening to the skin then the morphine wasnt getting through leaving me in pain.

Very early friday after i called to make an appointment at the doctors and showed him my arm he said that i was badly allergic to the glue in the morphine patch and said that i would not be able to take the morphine patch but the prescribed me fentanyl 25 patches ( he told me the glue was different)told me to take these for 2 weeks and then contact him if these were not strong enough and to get some more after the 2 weeks if there were. So we got home and put the new patch on my arm.

I did not sleep very well that night and eventually fell asleep around 6am i suppose the Morphine had worn off but yet the Fentynl hadnt kicked in yet as that takes a while. Then i fell asleep right through to about 7pm the following eventually sleeping for 13 hours i am not sure how i feel now i know i am in less pain but i feel kinda floaty and not really here. We tried to secure the new fentanyl patch on ( which is a small stamp sized clear patch) with some plaster only to find that i had become allergic to the plaster too! not having a good time!

Hope i feel better soon its my birthday tomorrow.

Since the Move

Alot has been going recently on recently, my benefits went up some time again to £100 a week and the Incapacity people have said have said I don’t need to send in any proof for at least the next year which makes my life easier for the next year. Its nice to be believed after all this time.

Also I have now posted the Disability Living Allowance Form, I have received a letter back saying they have received it which is good. I am waiting for a few more letters and then eventually a letter which the result, I am hoping with how my fibromyalgia has been getting worse they will grant it to me this time, I really do think we deserve it.

A couple of months ago I was called to go to another Occupational Health meeting by my employer before I became sick to see one of their doctors to see how I was getting on with my Fibro, I took along a list of all my consultants; when I had seen them last and how the fibro was progressing. We talked for quite a long time and it was pretty obvious from both parties point of view that it would be some time before I would be return to work. I had always been in the hope of returning to work at some point probably part time but to be honest it was time I was honest with myself especially as the fibro is now badly effecting my hands.

So the Occupational Health Doctor wrote back to my employer and I was summoned to a meeting on the 19th of July, which I went to feeling rather icky as it was one of my worse days but I with held taking a morphine tablet because I wanted to be in a decent state of mind for the meeting. As I had been off sick from work for a year and the medical report from the doctor stated I had a disability my employer could not just “fire me” so It was desided that I would be “let go” under medical grounds a kind of “medical redundancy”. Also as it was not my fault I was ill I was being given a sum, which has not been totally worked out exactly but is just over £4000 GBP. They also told me I had the right to Appeal which I am not going to. They also told me I would be able to use them for references if I was able to work in the future. I feel greatly relieved to be honest and it is one thing hanging over my head

I have also been refered to the Occupational Therapist for a Shower board which is a board that goes across the bath so you can sit down and shower a s I was having problems standing whilst showering with my legs being so painful.We have also spoken to them about several other items in the home which will make things easier for myself to get around, and hopefully try and get on with some day to day tasks. We can also speak to them about other items if they are required.

I have been having a few problems with the flight of stairs going to our first floor flat and have agreed with myself that I will try to use them only when needed, I have also been trying to do as many chores as possible without hurting myself, however I have overdone it quite a few times since moving and have had to spend quite a few days in bed resting.

As of the 18th of July 2007 roughly I have had fibro badly one year although some symptoms eg sleep problems etc alot longer.

Moved Home

We moved out of our rented flat of 3 and a half years which was one bedroom into a dyso flat (40% owned 60% rented) two bedroom newly built flat on friday the fourth. Everything was rather chaotic my fiance had spend about a week packing up the old flat with a little help from myself, i did try to help as much as i could but found myself getting tired very easily, so most of the time he showed me items asking whether we wanted to throw them out or keep them before chucking them into the correct boxes!

The day of the move came fast; the first part of the day was choosing things for the new flat fridges, and washing machines etc to collect later in the day, this left me very tired, when the van arrived to us, i hopped to my sisters already having realised that i was absolutely useless during the actual moving stage and we already had several members of my family helping lug huge boxes of our worldly possessions up flights of stairs so i was as much use as a chocolate teapot filled with hot water as i was am on crutches.

They made good time and managed to have all the belongings into the property by the end of friday which was damn right impressive.

On saturday we spent many hours trawling around several large shops looking for finishing items for the flat inclucing rugs, curtains, blinds etc. Simon had also managed to unpack some of the boxes of our possessions, and we are finally starting to get things in order.

Its finally starting to get into order, the lounge with kitchen looks perfect the bedroom looks okay except for the suitcases on the floor which contain all our clothes as the chest of drawers and two wardrobes are being put up tomorrow, the bedroom 2 on the other hand contains all the boxes and junk not really being in any kind of order.

Although i have Fibro i have being doing the best i can although at some times i have overdone it, its a case of trying to learn to not over do it. I have been phoning all the companies changing addresses as well as the laundry stuff and trying to do small tasks.

We dont have broadband back which i am really missing i have internet via my mobile connected as a modem to my laptop but its only 115kbs which is sooo slow but its only after 7pm and at weekends.. roll on broadband.

I still cant believe this home is ours its going to take some time to adjust physically, mentally and financially!

The increase in my morphine patches has been making me more and more tired recently and so i have been finding it more difficult to concentrate i dont know if this is because of the morphine or because of the fibromyalgia or because of the morphine.

The symptoms seem to be progressing and taking more of my life with it; taking more of what used to be my life and ruining what is left of me.

I have been struggling with my hands. to pick up and hold objects in my hands, yesterday i wrote a note to a friend on a piece of paper the note was ledgiable but looked like a 7 year old child had done it i had to hold the pen in my fist and steady my hand with the other hand due to the shaking it brought me to tears i hate being reduced to this.

On a good note the Incapacity people have written to me saying i dont have to send sick notes for a year and my benefits have gone up to £100 a week. I have just completed a Disability Living Allowance form and will post it when i move to ouw new house very soon. We are due to get the keys at the end of the week. As we have bought a share of the property we should be able to adapt the property to my needs, the only thing that worries me is that it is on the first floor; i am hoping that my legs dont get any worse.

My vision is getting more blurry i think i need some new glaases i dont know if this is due to the fibro, i seem to attribute everything to it but even with my glasses on i struggle to see past the blurriness.

GP's Visit

Its been two weeks since i saw the Rheumotologist and as i had hoped the diagnosis letter had reached my GP, finally my GP has information that i am diagnosised its only taken almost a year!

Shes decided for the moment not to play with any tablets as she does not want to mess up the balance of the medication, But recently i have been in more and more pain.

I have spent many nights waking up screaming in pain; my legs seem to have become very sensative to touch and pain. My nights are spent awake unable to sleep because of the pain in my head and my body and i dont like taking the morphine tablets as i end up more irratable and itchy and the amount of morphine tablets i have a month are limited to only 14 and i never know if a worse episode of pain is just around the corner and will warrent them more.

My GP has upped my Morphine patches to 20mg(over 7days) 20mcg ph from 10mcg ph which should help but it doesnt start for a week as she wants me to write a "pain diary" of how much pain i am in and what times and where etc... how are you suppost to write a pain diary when you are in constant pain!!

I have also had an occupational health meeting with a private doctor to do with the company that technically i still work for, although i dont think i will still be employed with them for much longer i dont think they can simply fire me as i have a long term disability, i am not sure what will happen to be honest will have to wait and see.

The date looms closer and closer to the exchange date of buying our new flat which seems to be causing alot of stress which really doesnt seem to be helping my fibro justt making me more frustrated and irritable and i am having problems sleeping due to this which is having a knock on effect with everything else. We will see if i live to survive the move.

Hopefully after we move now that my GP has my diagnosis and understands the situation we can go about claiming for Disablity Living Allowance which may bring in a little more money, maybe a blue badge, possibly a carer, and some discounts with travelling a few other things but we shall see.

Also after the move will have to see about seeing the Occupational Therapist, this month at the Fibro meeting they are having an OT visit so we should be able to find out lots of information from that and hopefully they will be able to adapt the flat somewhat when we move in to make things a little easier for me.

Hopefully Things can only get better surely things cant get much worse!

At last... i see a Rheumatologist

In Decemeber i saw a Neurologist who diagnosed me with Fibromyalgia and i have also seen the Neurologist nurse not so long ago.

My General Doctor (GP) has been writing to my Neurologist to get a copy of the Diagnosis but he refused to send a copy of it, maybe because technically he shouldnt had diagnosed me as Fibromyalgia is not his field i dont know.. But now my Neurologist has retired and i have passed onto another Neurologist.

Now my General Doctor has her hands tied and is limited on how much she can help me without seeing a copy of the diagnosis sheet also a specialist about fibromyalgia knows more about the medications and knows how to help me.

soooo she refered me to the Rheumatologist the appointment took about 6-8 weeks after she refered me to come through but it did come through and i saw him on Tuesday 3rd June.

He was very nice and started by asking what medicines i was on, then a list of conditions i had and what problems i had. Then i had to go sit on a couch whilst he prodded and poked me which was quite uncomfortable but i tried not to complain too much at the time as i knew he was only doing his job. He did my blood pressure and listed to my heart and wanted me to try and move my arms into certain positions. And then we went back into his office. He said it was defiently Fibromyalgia, which of course we knew already but i did have a little niggling feeling maybe it was something as i thought maybe the Neurologist before didnt know what he was talking about.

We talked about medications he could put me on but my Amitriptalyne would need to come down first. He is also going to refer me for Physio.

I am due to see him again in about 4 months but i left there feeling good hes going to write to my GP and i have an appointment to see her in 2 weeks by which time she should have recieved the letter. Hopefully after that i may be able to apply for Disablity Living Allowance.

Feels like i am getting somewhere now.

Also we are in the the middle of buying a house, the main reasons are because we are renting at the moment and we wanting to buy so that we can put in adaptations, this months Fibro Group meeting has a Occupational Health person coming to talk about adaptations so maybe we can get some numbers and help from it.

As i said... it feels like i am getting somewhere.

A Trip to London

A week or so ago i went to London on a day trip, i didnt realise how much my fibro would limit me but it did. I caught a train to Brighton didnt really have any problems well not really with my Fibro there was a few problems with the train which broke down but nothing which overly effected my illness.

I met up with some friends at Brighton, one of which who has Fibromyalgia but who is at a different stage and is able to walk usually with one walking stick and when we went to London had decided to take two which was a good idea.

We caught the train to London Victoria again no problems, i had taken my 11 year old sister with me too mainly as the reason we were going to London was to go to see the Doctor Who Exibition at Earls Court. My Sister although she is very young is very aware of things that cause problems with disabled people as her mother (my stepmum) has MS.

When we got to Victoria to get to Earls Court, i had planned a route that involved going on several trains and that would involve hardly any walking which of course would be good for myself and my friend with Fibro but the person who was leading us wanted to go via the underground and he believe the overground direct route to be unreliable.

So we set off on the underground. We went on several escalators which took a little bit of balancing to begin with with my crutches but i soon got the hang of it. Then we had to walk down many stairs, i find walking down stairs not too difficult but i am still rather slow because of pain in my legs and hips. My friend was very slow and seemed to be suffering alot too. Once we got down there an underground train came but it was packed and it waws obvious that there was not going to be any seats so we stayed on the platform and waited for the next one.

After the next underground train came we took it and several of us managed to get seats and we travelled stations. At the destination we got out off the train there wea a lift and we managed to get to the surface, to get to the front of Earls Court there was alot of walking and by the time we got there i was in a great deal of pain, i contemplated taking one of my morphine patches, i already had a morphine patch on. But didnt want to take a morphine tablet as this would make me drowsy and would make me not enjoy myself for the rest of the day.

We collected our tickets and people went to the bathroom i waited as i couldnt deal with anymore stairs and sat down on a chair to rest then we went for a walk to get some food. After which we went back to Earls Court for our walk around the Exibition.

We spoke to the guide who told us to get to the exhibition there was stairs we advised him there was a lift and he showed us too it and we started our walk around the. The Doctor Who Exhibition was amazing, although it was quite a walk, and i became very tired and overheated, i took many photos which was quite difficult whilst on two crutches but after slowing down and much resting we completed it.

After we had finished the Exhibition we tried to head back to the underground but i had hurt my knee more and the walking had tired me very much all my joints hurt. So we made a decision to take a taxi to the Doctor Who shop which was own by a friend of several members of the group. The taxi ride was good as we got to see alot of sights and have a good rest.

After the shop we headed back to the underground, throughout the trip i could not walk through the normal ticket barriers and had to walk through the disabled ones, some of the staff seemed lazy and unwilling to unlock them to let me through, My sister complained to them although she is only 11 years old!

We managed to get back to London Victoria and get some more food and head back home.

I must admit there was alot more walking involved than i had thought there would be, aalso i would have thought the underground would have been more accessable for disabled people i struggled on crutches i dont know how people in wheelchairs would have copied.

The next day i was exhausted and found myself covered in bruises i dont know if this is part of my fibro or because of all the people passing by.. i do bruise easily normally.. i do think it will be a long time before i work up the energy to go to London again!

Bank holiday blues...and fibro

We travelled up to Blackpool last thursday night we descided it would be better as the friday traffic would be hectic also i still suffer badly from the headpain which is made worse from pain the sun so travelling at night was a good idea.

The trip went well with some cramp in my legs from being in the same position too long and i didnt think my fibro was going to play up. We couldnt get a room in the hotel we were due to stay in for the weekend so we stayed overnight in a bed and breakfast not more than 10 miles from the main hotel.

I managed to wander around somewhat on the friday and didnt think i was going to get any pain from the the travelling, however throughout the day i started to get more and more tired and in more and more pain. By late evening i was pretty much in agony and unable to leave my bed, there was no broadband in our room as promised so i had to make do with internet from my mobile phone using it as a modem.

I tried to wander around the room but without my crutches and fell hurting my ankle and putting myself in even more pain.

However to be honest i didnt really use the internet much and just watched a few dvds via my laptop. I was in so much pain i had to take the new morphine tablet the doctor had given me, i had worked out it was 2mg. The morphine patches give 2mcg (2 micrograms per hour) so technically the tablet is 20 times stronger) i took the tablet under my tongue as per directions, i was sitting up, within 15 minutes i started seeing double and thats the last i remember i must have passed out.

I woke up on the bed but in a few awkward position it felt like i dislocated my shoulder. I called Simon, looking at the clock it was about 4am, and was about 7 hours after i had taken the tablet, Simon checked me (as he is a nurse) and said i had probally sprained my shoulder. I spent the rest of the weekend feeling very weak and in alot of pain in bed : ( it does seem that travelling does seem to effect fibro (or at least my fibro), i have been resting since we got home on monday too today being thursday has been the first real day i have felt that i have had the energy to go out. But i have only been out several hours this afternoon around a friends house, only about 3 hours.

in preparation...

The past few days i have hardly done anything, i have been using my laptop to play games, but i have not left the house. We are going away for a long weekend from friday to monday. It isnt really a holiday of sorts we are going to some conferences with some close friends although it is doubtful that i will be able to attend many of them if any.

I have been resting, conserving energy for the events that are going to happen over the next few days, tomorrow i have a doctors appointment really early at about 0815 in the morning and then we are going via train to visit the Fibromyalgia Centre which is about 30 minutes away. After which we have to come home and pack to go away on friday.

Friday we are leaving very early in the morning, i dont know how long it is going to take me to get over the journey, its about 6-8 hours depending on traffic as it is bank holiday, its the first proper journey i will have been on since i became ill, we did go away in september 2007 but i did not have all these issues with my joints. It may take me the whole weekend to recover but i am hoping it doesnt.

We are staying in a hotel with Breakfast and dinner so at least we dont have to worry about that, i may spend most of the long weekend in the hotel room recovering from the journey or resting as i get extremely fatigued, i dont know whats going to happen yet. I am taking my laptop with me so i will have some form of entertainment and i believe we are going to have the internet in the room.

If i have enough energy to attend any of the conferences i will go, Simon bought a ticket to attend all of the conferences but i can buy a ticket to individual conferences as we didnt see the point in buying the same as Simons ticket if i was going to be be ill for the whole time.

I hope everything works out okay and if i am lucky and do have some energy we may be able to go out and see some of the local sights to where we are staying. If not at least it is going to be four different walls to look at than the four walls i look at ; at home.

Time goes by..

Not much has been happening; to be honest it probally has, but time has been going so fast that i feel that i have been taken out of time and that i am just watching it pass me by.

The Morphine patches do seem to be helping overall but the pain does seem to be getting more intense, when it does get bad i try to stand up if i am sitting down, or sit down if i am standing up and that does seem to help a little but not for very long.

My Gp has refered me to see the Rhemotology Dept, although i was originally diagnosed by the neurologist it wasnt technically his dept so i have to see a Rhemotolgist and Fibromyalgia is there department and i have to be diagnosed again and homefully things will move on a little bit more. The only thing that worries me after all of this is what if they dont think it is Fibromyalgia, i truely believe it is fibro it does seem to fit the pattern and seems to have all the symptoms but apparently some Rhemotologists dont believe that Fibromyalgia exists, so instead of taking several steps forward i could end taking a million steps back.

I have been suffering from Insomnia another common ailment of Fibro and now my sleep pattern is totally screwed up i want to sleep in the daytime and be awake in the night time, it has its advantages and distadvantages. I am still very restless at night time and it means that if i slept the same time as Simon then i would keep him awake at night time and his quality of sleep would not be good so he would be tired when he would have to go to work the next day.

I have also been sleeping alot generally i dont know if this is a mixture of my medications or the morphine or just the fibro generally but i think this one of the reasons i am feeling that life is passing me by so quickily.

The company that i work for came to my house several weeks ago to discuss my current work status as i have not worked since july 2007 they said i have to attend an Occupational Health meeting and that then i will have to attend a formal meeting to discuss whether i will be let go. However they had scheduled the Occ Health meeting for only two or three days time from the initial meeting and what with Simon working so many hours and unable to get time off work at such short notice and problems with my short term memory it wasnt possible to attend the Occ Health meeting, they played games with us a little but in the end they agreed to make the appointment for a different day. We got another date in a letter in the post however Simon has a course that day so he is going to have to give them a call and rearrange it.

Update

The doctor i saw today was quite helpful after i had gotten all my repeat prescriptions sorted i explained that i have been in alot of pain for some time with no relief from the tramadol, we discussed a few options and in the end she put me on morphine patches that give 10micrograms of morphine every hour or something, she said it would be pointless to put me on 5mcg and if the 10mcg didnt work to put two patches on and i would be on 20mcg. She gave me enough for a months supply on 10mcg or two weeks at 20mcg. I hope this works i am fed up of being in pain.

The doctor said that it didnt look like the letter from the Neurologist and the Neurologist nurse had been recieved, but if it had it would have been addressed to my usual doctor and that she wouldnt have had access to it, she emailed my usual doctor and then arranged an appointment with my usual doctor and said if i needed any more of the patches to just arrange an emergency appointment.

I feel like i got somewhere.. kinda almost like one step forward and two steps back.. although technically i dont know if the letters have or havent been recieved.

Hiding the Pain

Everyone around me seems to have long gotten over their coughs and colds but i am still suffering badly, i am feeling the cold so badly at the moment, i am constantly tired and aching, more than i usually am with my fibro. Its a struggle to get out of bed which is why i havent written anything sooner; i have my laptop in bed with me now its the only thing keeping me sane, that, my kitten and my fiance.

Simon keeps asking me about how much pain i am in he said he can tell i am in agony from the look upon my face, i am really struggling to hide it but i dont want him to see how much i am suffering. I am so tired, if it wasnt for the pain i feel like i could sleep forever but each time i start to drop off the pain rudely wakes me up.

I have been taking tramadol but it doesnt seem to be touching it, i dont know if this is because the pain is actually much worse than before, it feels like it is or whether i am building up a resistance to the tramadol. I just need something to stop the pain.

I have made an appointment to see my GP (Doctor) today, i did it purposely when Simon is at work cause i dont want him to be there when i tell her home much i am suffering. My neurologist nurse upped my Topiramate a few weeks ago but that doesnt seem to be touching the pain in my head. I feel like i have taken backward steps and i dont know what to do.

I am a little concerned about seeing my GP as i know she knows nothing about fibro, when i went last time and told her about the pain in my hands and knees she tried to tell me i had juvinile artrithis, but i suppose Gps cant know about every single medical condition that is about. I usually see a different Gp maybe this one will know something and be able to help me, or maybe she will be worse!! if thats possible!

I am hoping that the GPs have recieved the letters from the Neurologist and the Neurologist Nurse by now though so that i can be refered to the Rheumotologist and also to the Physiotherapist with my Fibro, and get the ball rolling forwards. I can but hope!

Although it sounds odd i am looking forward to going outside for a short time to go to the doctors i have barely left the house over the past few weeks as i have been feeling ill and i am starting to feel a little cabin feverish.

Simon had to work all through when he had his cold, i really felt for him, he was quite poorly, but he had no choice but to work as he is still unable to get a permanant job and is working agency, if he takes time off work then he doesnt get paid, if he doesnt get paid, then there is no money for rent or bills or food.

There is a glimmer of hope for a job for him which is good but i am not going to get my hopes up too much as they might get shattered.

Floored.... By A Cold

Its the last thing i needed at the moment, but i didnt see it till it was already on top of me. I didnt notice the few few days worth of symptoms the aching muscles and stiffness i suppose i thought the symptoms were just normal fibro symptoms. Now i am stuck in bed with a runny nose, sore throat and no energy at all.

I suppose i am lucky really i managed to last the whole winter till this point without getting a cold. I have a nephew who is 2 years old who permantly seems to have a cold, the poor little mite.

I was just starting to get used to pacing myself; going slowly taking one day at a time, resting after doing things and not trying to do to much and then something comes along that changes the whole pattern. I hope it doesnt stick around too long i am fed up of the sore throat already. Had to turn all the automated air freshners off already as the scent was catching in my throat. Lets hope this doesnt go to my chest last thing i need is a chest infection and lots of asthma attacks.

Havent been sleeping too well of late, Insomnia is common in Fibromyalgia, the pain has been quite intense, have been taking the pain killers even though i dont like to. Been very irratable what with all my normal Fibro symptoms and what with the cold symptoms too; every noise bugs me, every touch irrates me i want to crawl into a hole until i am better.

My immune system isnt all that great, i could have picked this germy cold up from the hospital last week though. Last tuesday i went to the local hospital with a friend of mine as her four year old severly disabled daughter had a 2 hour fit and was kept in overnight, i went along to keep my friend company and give support to them both although i ended up very tired at the end of the day.

Went to the Fibromyalgia Support Group which was the same day as the hospital trip with my friend but i was in ALOT of pain and very tired after the long day at the hospital, i managed to stay till the halfway point and had to go home because i was so weak, i was struggling to concentrate and i was barely with it. It was nice to see my friends though and to get some support from the group even though i couldnt stay for the whole meeting.

Sometimes i get very depressed and wish things were how they were before i got ill; i wish that i had my old life back and the freedom i once had to do things i wanted to do. I miss all the small things like going camping (which i cant do because i need electric for my CPAP machine to keep me breathing at night, also sleeping on the floor would make my joints worse and getting up from the floor would be hard on crutches), eating what foods i want (IBS makes this difficult), go places without having to plan in advance (making sure its got disabled toilets so i can use catheters etc, making sure i have time to walk about and access because i am on crutches and also making sure i have enough painkillers and pills to cover the amount of time i am out.) etc

Although my blog is mainly about myself and my Fibromyalgia condition i know there are people out there much worse off than myself. My love goes out there right now to my Uncle who is very sick( Blog ) and my mum's husband who is poorly too.

Pain & Hospital Trips

Feeling pretty exhausted today but it has been kinda crazy, usually i sleep in the daytime as the light hurts my head more and also because i dont sleep well. Last night i had to sleep in the night as i needed to try and get into a normal sleep pattern for today and the days ahead, the pain was really bad and i kept waking up crying in pain; Simon soothed me off to sleep everytime and gave me hugs and painkillers when i was allowed them. Simon was very tired this morning as was i, because of the broken sleep; this is another reason i sleep in the daytime as Simon needs his sleep because he works. He did have the morning off work though to take me to the hospital.

We got to the hospital slightly early and booked into Outpatients and i was told that i had to go right to the other side of the hospital for my appointment, this wouldnt have been so much of a problem if i wasnt on crutches and hadnt had a very limited time to get over there. So we got there rather exhausted and was called in to see the Neurologist Nurse.

She seemed very nice, asked the usual questions about medications and such, asked how i was doing. The pain in my head had seemed to be getting somewhat better but in the last two weeks i have been getting more painful spikes and episodes and i told her this. She told me that i could increase the Topiramate i am on and wrote me a prescription to up it 125mg and then to 150mg if i need to, hopefully that will numb the pain more. She also advised me that my Neurologist Dr Clifford Jones is retiring, i was already aware of this information, but she said i would have to go see a Neurologist at Southlands Hospital in Shoreham which would probally just be a one off just to see her and so she can review me etc.

The Nurse is going to write a letter to my GP re everything we spoke about and also get Dr Clifford Jones to write about the headaches and the Fibromyalgia as my GP has been waiting for the letter from him since my last appointment with him in Decemeber and apparently needs this information before she can refer me to see a Physiotherapist or a Rhemotologist.

So hopefully the cogs regarding that will get moving shortly. The pain in my knees has eased ever so slightly but not that much, i keep forgetting to take the homeopathic medicine and need to get more into a routine.

Cant believe how fast this year has gone, i think when you are ill and have nothing to mark the days then time goes much faster, going out to my mums all day tomorrow i hope it doesnt leave me like it did last week when i went out all day, although i am not going to be doing much and just try and take it easy. Trying to learn to pace myself.. whether it works of course is a different matter.. when you spend your life doing things one way and then have to change its very hard..

Forgetting i am ill

Thursday i went to my friends house again, thought i would just be chilling but her computer was playing up. Before i got sick i used to fix alot of computers. So i tried to fix it. I still have it in me to do them, i managed to fix it; it just took me ten times longer and i ended up totally exhausted and very very sleepy by the end of it all. So i waited for Simon to and pick me up. He was late and he called me to tell me there was a huge traffic jam.

Ten minutes passed and i wondered where he was, he called and said a car had hit our car, our car had hardly any damage just a dented numberplate. I was so tired at this point i just wanted to rest. However by the time Simon got to me he was running late for his Clinic for 'Stop Smoking' that hes helping to run. He didnt have time to drop me home so i had to come along for two hours.

We finally got home, i was so tired we got some food watched a little tv and went to bed..

However i was so tired that i pretty much didnt leave the bed friday... saturday ... and sunday. I was totally drained and so weak that at times i could barely lift my head from the pillow. I used the laptop a little, but all plans had to be cancelled and i was so weak that i couldnt even take a birthday present over to my niece! I hope my family understand.

I am feeling a little better today but only a little i slept all night (from around 1am) till about 3pm i am obviously awake but i feel quite weak. I hate feeling like this i hate having Fibromyalgia and i wish i could have my old life back. I would do anything to be able to go back to work so that Simon doesnt have to work so much. I am feeling rather depressed : (

Learning the Boundaries

I try my best everyday to do what i can, everyday the goalposts seem to move. Sometimes i can do small things like take the washing from the washing machine and hang it on the airer other days i try to do to much and end up regretting it for days to come. I find it hard to learn boundaries i wish things were back how they used to be. I wish i was back to how i used to be.

Today i went to my friends house, i went via taxi, it wasn't a long distance but i knew i wouldn't be able to walk it on crutches, at my friends house i wasn't really able to do anything, she has a young daughter but i couldn't sit on the floor and play with her as it would have caused me too much pain in my knees, so i sat in a chair and talked and felt rather useless.

Later Simon picked me up and we went out for a meal there were no spaces close to the restaurant so we had to part far away it took me along time to walk to the restaurant and the car park was slopped and by the time we got into the restaurant i was in a lot of pain, but i did not want to take painkillers as we were out with 5 other members of Simon's family and i wanted to be with it and not sleepy like the painkillers make me.

The meal went okay but as it went on i got more and more tired, more and more sleepy and then the walk back down the slopped car park to the car. Then his family came around our house for an hour or two.

These things may not seem like much but i am going to regret it tomorrow i am going to be in pain in my legs and joints probably for 2 to 3 days, i am probably going to sleep for 18-20 hours for the next 2 to 3 days. I haven't done much; these small things i would have taken for granted before i became ill are such huge hurdles now. Its just so Frustrating.

I went to see my Doctor about the pain in my joints and as i can not take anti-inflammatories i am trying to take glucosamine and also homeopathic medication to see if that can help, i am at the point of trying anything to stop the amount of pain i am. I hate so much to take so much Tramadol and the zombie it makes me become.

Roughly up to date

The benefits meeting at the end of Febuary was to see if i was suitable to go back to work and lady that 'interviewed me' said that i am not going to be for the forseeable future. Had to fill in some more forms for the Incapacity benefit people listing what i can and cant do, why do the booklets have to be so long and complicated. I also had to see my GP to get a Med 4 form for the booklet stating that i have Fibro etc. Geez they like to run you through the mill, if this is what they do to sick people i would hate to see what they do to heathly people.

The Fibro meeting at the end of Febuary was good, wasnt able to pay full attension to what was being talked about as i wasnt quite with it but it was nice to meet up with people i have been in contact with via email/phone etc and there was also quite a few new members to the group so i made some new friends too.

Got my new crutches through, slowly getting the hang of them, my grip in my hands is getting worse, and is also making my hands shake so it would be quite difficult to hold normal crutches, the crutches i have are specialist arthritus style crutches so you dont need to grip much as they have support for your wrist and elbow which is good.

Also with the problem with my hands comes the problem that i am finding it more difficult to type on a computer/laptop, Fibro still seems to be turning all aspects of my life upside down, is it going to leave anything left of the original me from before i became sick?

The pain in my knees is getting worse, i have been trying to use one crutch where-ever possible so i dont become too reliant on two crutches, but on some occasions where i have to walk some distance, or where the ground is slippy or wet i am using two to help steady myself. At home i am gripping on to furniture to keep myself standing as its not really that easy to use crutches in a small flat.

Currently trying not to take to much pain killers, i am on Tramadol for my head and my knees but i only take it if i have to which is at night time to stop the pain long enough to sleep. During the day i try and put up with the pain as much as i can or take Tramadol only if i am on the verge of crying from the pain. I am also occasionally using a TENS machine for my knees but that seems to only help if the pain is mild to medium.

I was refused Disability Living Allowance but we applied in January before i got so ill that i had to use crutches to walk so we may leave it alittle while and try applying again.

In December we were looking at buying a flat but it fell through as i was sick, i am glad this happened now as the flat was the third floor up and there is no way i would have been able to navigate three/four odd flights of stairs and probally would have ended up a prisoner in my own home, thank goodness we live in a ground floor flat.

My memory is slowly getting worse, i am struggling at remembering anything short term, i am also struggling to do anything that needs me to concentrate, which takes away from me more things that i used to love doing, i cant play complicated computer games, crosswords, or even sudoku which i used to love doing so much : (

I try hard not to get depressed the only thought that keeps me going is that there are people out there much worse off than me and goodness knows how they cope and keep brave faces.

The pain in my head seems to be getting a little better, well i say it is getting a little better, it could be that or just the fact i am getting more used to it, i am now on 100mg of Topiramate and 175mg of Amitriptyline, i spoke to my gp on the 3rd of March and shes still unwilling to lower the dosage of Amitriptyline so i can try and help myself lose some weight. Even now on a diet i am not losing anything as the Amitriptyline stops weight loss and makes you put it on, more punishment!

My uncle is in my prayers at the moment he is very sick and in hospital
http://www.lifewithdialysis.blogspot.com/

Febuary

The pain in my head is starting to get a little better it is still there but is somewhat less sharp than what it was, it seems the Topiramate might be working alittle. After many months with the constant pain in my head its nice to get a little relief even if its only a tiny amount.

My knees are getting worse and worse, as are my other joints. My knees hurt the most though, at night time i have problems sleeping because of the pain i often have to take 100mg of Tramadol to knock me out to get some sleep. They also hurt alot when i am sitting down and also when i am walking. Whatever i seem to do they hurt : - ( We have had some discussion with the Fibromyalgia Association and a few other people and i am trying to take some vitamin type tablets to see if they help, i am also on special crutches at the moment to try and take some of the pressure off of my knees. Also trying to sleep with my knees on pillows at night time to see if that helps at all. The crutches are special as they have alot of support for the wrists as i dont have much grip in my hands because of the fibro. Overall i am pretty fed up.

I have a new laptop after my last one broke, i bought one with big keys on the keyboard so that i can type a little easier as my fingers are being effected alot to, also it has a big screen cause my vision has been somewhat blurry since i started getting ill.

On a good note, i have been granted Incapacity Benefit and they have backdated it to December which is good so at least some money is coming in, hopefully that will mean that maybe Simon can do maybe one less shift a week and i can see him a little more, hes been working about 45 hours or so a week to make ends meet.

I havent heard back about the Disability Living Allowance Benefit yet but i have a meeting on the 29^th so will see how that goes.

I am hoping that the crutches will make me a little more mobile around the house i got them on the 19^th but before that i tried to remain in bed as i was very fatigued and i kept falling over cause of my knees hurting so much. I am still sleeping alot, i am hoping that my GP will lower down the Amitriptyline i am on and it will make me less sleepy and make me lose some weight, its not a very good medication to be on from that point of view.

Got another Fibro Association Meeting in a few days, also before my laptop died i was trying to help out on the Fibro website doing some basic HTML etc, sitting/laying at home does get very tiresome, especially when you cant go outside in the daytime cause you are sensative to the light/sound.

January

I took the Topiramate as i was told for several weeks before making an appointment to see my GP, she was the one who had first mentioned Fibromyalgia to me several months before, i told her the diagnosis the Neurologist had given me she looked through my notes on her computer system and told me that it all made sense, how the headpain, the tiredness, bladder problems, vision problems, sleep apnea and mainy other symptoms all fitted into place with the diagnosis of Fibromyalgia like pieces of a complex jigsaw that someone had tried to put together without the picture. She asked me what medication the Neurologist put me on and looked through a medication book, asked me how the pain was and i told her it was still very bad and that i was still very much struggling to cope.

After the Neurologist had diagnosed me i had started searching the internet furiously trying to find information about what was wrong with me and to see what i could expect with this condition. Fibromyalgia covered such a large range of symptoms and areas of the body the research was endless. It was at this point i thought maybe research was not the correct way to go, maybe i would be better off talking to people who knew about fibro, people who had been through what i was going through and had suffered as i had suffered.

I typed the condition into my favourite search engine along with the county that i live in and pressed the enter key hoping that it would come up with something useful. There was a support group very close to me, i was very surprised and almost immediately emailed the founder to ask for more information about the group.

She responded fast and told me they held monthly meetings, I was amazed to be surrounded by so many people who knew what i am going through. With Fibro the symptoms can vary widely under the one diagnosis .

I enjoyed the meeting, i found them i great source of comfort, information and friendship. I also think Simon made a few new friends with the ‘carers’ of some of the other ‘fibro suffers’, I think people do not realise how muchimpact this condition has on the family and friends of someone with the condition, especially the main care giver, the partner; husband or wife.

At the end of January i saw my Doctor again, she increased the Topiramate again as it did not seem to be having much effect.

I have also applied for benefits as i have been unable to work since July and my SSP (Statutatory Sick Pay) ran out the beginning of December. Finances have been difficult especially as Simon has not got permanant work yet.

The pains in my joints seem to be increasing, especially in my knees and my hands, typing is becoming harder which is very sad as computers are my life.

My Laptop broke so am having to use Simon’s but his keys are quite smaller than mine and i am finding quite difficult to use.

December

In December, I saw my GP again she mentioned the condition ‘Fibromyalgia’ this was the first time I had considered this condition, I had this name before but briefly I believe it was on a poster at the chemist in the hospital but I had not paid much attention as my vision was quite bad.

My GP put me on Tramadol painkillers which seemed to help somewhat they took the edge off of the pain somewhat but I only took them if I really needed to I know they can be addictive and I don’t like relying on things.

Around the middle of December I received a letter from my work advising that I had used up all of my sick pay and that I was not entitled to any more, I really could have done without this so close to Christmas. I had done most of my Christmas shopping online.

It was just before christmas all the tests had been completed by the Urologist i went back to see her, she told me i had weak bladder tone but she was not sure of the reason behind this, i had to have training to teach myself how to do intermitant self catheterisation; its not pleasant and its all adding to the feeling that both emotionally and physically i am falling apart.

I have always enjoying using my laptop, you could say i have always been a bit of a whizz on computers. I am still able to use my laptop but only for short periods as I struggle with concentration, I have to use my dimmed glasses which are like sunglasses and have the laptop

screen dimmed. I am unable to watch TV for long periods of time and the brightness does hurt. I have been listening to audio books somewhat as I can’t read books as my vision has become quite blurry.

Christmas came and went in a crazy blur of pain i spent some time with family but spent as much time as i could in bed resting, the smallest amount of activity left me weak and unable to do anything. Somedays i was barely able to leave my head. The tiredness and fatigue started in the beginning in July but i never truely noticed it till Christmas i was going through too much with the pain to deal with anything else to be honest. Now i seemed to have pain everywhere it felt like i was an much older person a 70-80 year old, i am 26 yet some days i am unable to get out of bed unaided and walk to the bathroom this isn’t how its suppost to be.

On Decemember 28^th i had my appointment with the Neurologist i took along a friend as my memory had been getting worse and i knew i was not really with it and would not remember most of the convocation and would probally forget to mention something. I told him the symptoms and he did a few tests, he told me my headaches were called ‘Chronic Chemical Headpain’ but that with the other symptoms that the condition was known as Fibromyalgia. The name at this time didn’t mean much. I made a follow up appointment and thanked him, after all this time i had a name and i could research and maybe find some information about what was wrong with me. He also put me on a medication called Topiramate.

November 2007

I am becoming more and more of a hermit I leave the house once a week if I am lucky and occasionally to go to the hospital, I have seen seeing a urologist as I have been having allot of problems with my bladder. I am also getting allot of pain in my joints and especially my knees, I am not quite sure for the reasoning behind this but I could do without more pain I am in enough already.

My fiancé is working so much I barely see him I feel for him I really do, I miss him so much. He doesn’t have a permant job yet, if he becomes ill we have no income. We have bought a kitten to keep me company when my fiancé works and to keep me active or at least try to. Christmas is approaching, I don’t really feel like celebrating, I don’t think I am ever going to get better I feel so ill, money is really tight at the moment I feel like giving up.

I went to Casualty one night crying because of the pain, it was a last resort and I was at the end of my tether, a doctor came along she didn’t even look at me, didn’t look at my notes she didn’t seem to care within 30 seconds told me nothing was wrong with me that I was wasting her time and to go home. I felt distraught and even began to question myself and wondering if she was right

When I was discharged from hospital I had only one follow-up appointment it wasn’t with the neurologist it was with the Psychiatric Liaison Specialist, In all honesty I thought they were going to section me I saw the ‘Psychiatric’ part and freaked out a little. Apparently they help people who have been in pain for long periods of time; it is common for people who have been in pain for a long time to feel low and depressed and to be considering suicide.

I had an appointment with her; she saw I was a state I was barely able to concentrate on what she was saying as I was in so much pain. She couldn’t believe I had been discharged with no help, and she found it hard to believe that I had been told not to take any painkillers. She disappeared for a short period of time and came back with some painkillers, codeine and ibuprofen and told me to take them, I took the codeine but not the ibuprofen as it plays havoc with my asthma. She had also arranged an appointment for me to see the Neurologist.

I can’t believe that one person had done so much and changed things so much someone had opened a door from my small world of pain and had tried to help me. I have seen the Psychiatric Liaison Specialist a few more times and I am still seeing her now.

October 2007

I need some painkillers I have given up on the Codeine the hospital gave me they are not working and it seems pointless taking them, I am fed up of feeling this way I want to get on with my life. It is a Saturday and our GP Surgery is closed so we have gone to the ‘Doctors Surgery’ which is based at the local hospital. This is a different hospital to the one I was at before, the GP admits me.

They seem to listen to me a little more from the start; I am put into a side room so I can be away from light and sound which still bothers me. I am moved to a different ward and again placed into a side room. They do several tests, with no clear results, they try to say ‘Migraines’ again but I refuse to listen. Then they say that is the pain killers I have been taking that caused the headaches; I try to tell them that I haven’t been taking that many painkillers and that the headaches started way before I started taking any painkillers but they seem to ignore me.

They slowly reduce the painkillers and put me on high doses of a drug called Amitriptyline; I am unhappy with this as it is making me put allot of weight on. I am crying pretty much constantly in pain but they don’t seem to listen. After two weeks of being in hospital I have run out tears and I am sent home, the pain is still there... it hurts so much but the doctors are convinced their methods has worked even though I try to tell them it hasn’t.

Obviously at this time they havent diagnosed me with Fibromyalgia they still thing it is headaches and migraines.

September 2007

We have been saving up for quite a few months to go on holiday, it’s not much, just a holiday in the UK, and I barely leave the accommodation barely leaving the bed. It’s too bright outside the sun it taunts me it calls me outside but I know it will hurt me more. I can hear children playing outside and it hurts my ears and my mind as I know what I am missing out on. On the day before we go home, we leave in the middle of the night so that we don’t travel in the daytime to spare me the pain.

I don’t know how more I can handle, surely Migraines don’t last this long, they aren’t suppose to be this constant or cause this much pain, I have become a recluse I barely go outside, I have no social life and hardly see any of my friends. I am a shell of what I once was. My wages from work have been cut because I have been ill for so long, another worry to add onto the pile of fears. I don’t know what to do anymore.

I end up crying most days from the pain, I can’t take much more. My fiancé can’t handle seeing me like this. He is a nurse a Health Care Professional, he feels he should help me with the pain but he can’t his hands are tied. I feel like I have lost control and I am seriously stuck with no treatment, suicide has become a serious option, I have never felt this way before.

People who know me are starting to frown they dont believe someone can be ill this long and in so much pain, if it was something more physical with more obvious symptoms then it would be easier for them to see and understand.

August 2007

Several weeks later, I have barely left the house the pain is driving me further into madness I don’t know how much more I can cope. I am admitted again and told again its Migraines, they don’t listen to me, they don’t seem to care what I am going through so after a couple of days of paracetamol and no relief I discharge myself. If they are doing nothing I might as well lay in my own bed. I try to deal with the pain the best I can, I have become quite restless at night from the pain.

I have taken to sleeping in the day time because that is when the sun is out; even through the curtains which are thick the pain hurts so much. Also my fiancé needs to sleep at night, if I sleep at night with him, he barely sleeps through my constant tossing and turning, he needs his sleep he is working to provide for both of us, yet he is in final month of university studying nursing I am worried how much pressured this is putting on him.

I am trying to get on with on with my life but its hard, i feel so ill at times i can barely move for the pain. People, friends and family look at me passing glances; they dont think i am ill because i dont look ill.

August is suppost to be a month of celebrations, its my birthday and my sisters wedding, i try my best , i show my face enough so people are happy; but the sound and the lights are unbearable my face has become a mask of smiles so people cant see what i am going through inside.

In the beginning

Greetings, My name is Kelly. I am 26 years old, although i was 25 when this journey first began, i want to take you through a journey of illness; of what i have been through. Of what i am going through. Fibromyalgia effects many aspects of the body and mind and can turn your whole world upside down in a short space of time. If my blog helps one fellow sufferer feel that they are not alone then this is worth it.


I will start at the beginning....


If someone had asked me before July 2007 what ‘Fibromyalgia is?’ my response would have probably have been like most people I would have probably shrugged and I wouldn’t have had a clue. It did not affect me; therefore I did not know about it.

My life was pretty normal; I had a normal 9 till 5 job which paid the bills, I enjoyed socialising, spending time outside, and going to the cinema and I would not have expected my life to have turned upside down a couple of months later.

I had my fair share of problems am an asthmatic, I had been diagnosed a couple of months earlier with Sleep Apnea which I assumed I had due to being heredity and had to sleep with a Cpap (Continuous Positive Airway Pressure machine). Okay life had dealt me one or two nasty cards but doesn’t it do that to everyone?

July 2007

Members of my family had a virus, I tried to avoid them like the plague I could do without being ill, do without it messing up my routine and making me feel sick. Except I caught it, I expected to be ill three maybe four days. I had all the symptoms but they seemed worse than everyone else’s except I had really bad pain in my head, I could barely get out of bed. I saw my GP, ‘Migraines’ I shrugged off the diagnosis, took the tablets and prepared to continue life as it was.

Except the pain didn’t go away, it got worse. I could barely function. My eyes couldn’t deal with light I cowered in my bedroom with the curtains closed like some kind of hermit. Every sound I heard amplified a hundred times over. I started getting concerned I could hardly move. So I called the GP out; she came called the hospital and off I went for a barrage of tests.

The pain in my head is so sharp like a thousand knives, it is there all day, it is there when I sleep and when I wake, it makes me feel like I am losing my mind like I have lost control, like I would do almost anything to stop the constant pain.

I stayed inside for what seemed like forever, every trolley rolling along the floor sounded like nails on a chalk board inside my head, every light-bulb as strong as the sun itself. CAT scans, X-rays, Lumbar Punctures, all clear, the Neurologist comes ‘Migraines’ he diagnoses.

They discharged me again; I am no closer than I was before, more tablets. I am getting so tired, I don’t know if it is the illness or the tablets or the pain keeping me awake, if the pain wasn’t there I am sure I could sleep forever.