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.
Monday, 27 October 2008
Wednesday, 8 October 2008
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%
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%
Tuesday, 7 October 2008
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 : (
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 : (
Subscribe to:
Posts (Atom)