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.