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| Version | User | Scope of changes |
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| Jan 26 2007, 4:35 AM EST | daynauk | 32 words added |
| Jan 26 2007, 4:31 AM EST | daynauk | 100 words added |
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HELLO
My name is Dayna, I'm 24 and I will be 25 in April, although I feel more like 65...hahaha!Thanks for taking the time to read my story. I wanted to put my story into words based mainly on the need to share my experience of having Chronic Fatigue Syndrome/M.E, Fibromyalgia, Hypermobility Syndrome & TMJ with others. Not only to help others by showing them they are not alone. But also to help me express my feelings and writing my story is a way to help me to cope and accept it too.
It was March 2001 that I was officially diagnosed with Fibromyalgia (FMS) & Hypermobility Syndrome (HMS) which is also known as (EDS) Ehlers Danlos Syndrome type III (3). I also had M.E/CFS but wasnt officially diagnosed until just over a year after that. My sister had already been diagnosed with the FMS & HMS so it was not a complete shock, I had been putting off going to a specialist for months in fact almost a year, I had dismissed numerous pains especially in my neck shoulders, knees and hands & feet. I had problems with knees and ankles giving way all the time and my strength was weak and I got alot more tired more quicker than others. Little did I know that this was just minor and the start of it all. During this time my mum tried to get me to go to the doctors for a referral for ages, but i can be very stubborn especially when I was heavily in denial, even though deep down I knew something was wrong, although I still wasn't convinced it was fms. But back then I admit I didn't fully understand these conditions & could certainly not pronounce them, funny now they just roll of my tongue like an everyday word & after alot of research (thankyou internet!) I know more than most drs which has been proven on many occasions, and this fact does not fill me with great confidence in the medical profession.
Well at the specialist I had the usual blood work and examinations done, where he informed me I had FMS, after the trigger points test confimred this. And that I had HMS, which the beighton scale test prooved, although HMS meant nothing to me, I thought it just meant I had floppy joints, how wrong I was! Although at first he did suspect arthritis, something to do with my hands and feet, still dont really know what he meant by that. But thats Dr's for you!
We have both been told that the primary suspected cause is our Hypermobile Joints which we were born with which then went on to cause Hypermobility Syndrome, which then caused all our other problems and conditions. But as to specifically why there is no way of knowing. There are other possible factors, like we both had a tattoo, we both had diptheria and polio injections at similar times, or for me is it from having glangularfever and with my sister is it from her dislocaton. But this seems too much of a oincidence to be different things. So this is something we will probably never know for certain, which still leaves me curous, but now I realise it doesnt really matter.
Anyway I came away fromt he specialist (rheumatologist), actually I was dismissed away with "this is what you have there is no cure now go and have a nice life", well he didnt put it exactly like that, but he may as well have done. Then my GP put me on a pain clinic wating list, and as per usual this was a long wait and when I finally got an appointment through they said I had too much wrong with me in too many places to help me. Which as you can imagine didn't go down too well. Then I was put on yet another waiting list, this time for fibromyalgia physiotherapy classes. And in the mean time I was put on various medication. Amytriptaline was the first, then dothepin, voltorol, amongst others that I can't pronounce or even remember now. But needless to say they had no effect and I was popping pills for a while for absolutely nothing. I was getting considerably worse and was struggling working & by this time I couldnt drive my car very often. I had pain in my knees and they would jar especially when I used the clutch, when it came to driving the concentration thing was my worst problem and the left and right thing, for some reason I couldnt seem to turn in the right direction I wanted to go. I honeslty dont think it was safe for me to have driven for as long as I did. In the end I was having to get lifts to & from work and was forced to reduce my hours to part time, which meant passing up a big promotion to be supervisor. I was so exhausted it was overwhelming, my sleep pattern was heavily affected, so I could only work afternoons. I used to come home and go straight to bed at 6pm- and was almost in bed the whole time til 1.00pm the next day, ready for work at 1.30pm. It was torchure at work I couldnt stand it any longer, everyone was having to do jobs for me, I couldnt pick up the pole to shut up, I couldnt close the safe door, or hoover up, We had to re-arrange stock to lower shelfs, I could no longer do repairs on watches and Jewellery and I had to keep going to sit down in between shifts as I was almost collapsing from pain and exhaustion. I remember going to sit on the toilet just for a sit down and offering to stock take because I would sit on the floor to do it. Well by june 2001 I knew enough was enough. I stuck it for as long as possible, in a way Im proud of doing it for as long as I did, but then another part of me wishes I hadnt forced myself, because maybe that aided my deteriation.
The fibromyalgia physiotherapy appointment finally came through. I had been on the waiting list for ages. It was a 9 week course, with an initial first assessment. During the first assessment I cryed the entire time, I wasnt handling my pain too well, and I certainly wasnt handling losing my job and driving. And anytime I talked about my health or what had happened I burst into tears, I was an emotional wreak. Well during the 9 week course where there were 10 of us altogether, all who were over 40 and could do alot more than me. Which made me feel even more depressed along with useless and pathetic. The physio told me I had an arched back, flat feet and that I was at high risk of developing osteoarthritis, which I did already suspect as my sister had also been told that by a specialist. Anyway after a couple of week my physio informed me they had given me the wrong exercises, as they were making my hypermobile joints worse (they didnt have a clue what HMS was, although neither did I at the time) Well from then on they didnt care what exercises I did, and as there were 2 physios & 3 occupational therapists at the class, I was given a one to one with one of the physio's during rest of the time. And she basically told me time and time I need councelling. I was insulted, although now I do see she was probably right. However during the class it was the first time I had ever done relaxation, although at the time I could never get the hang of it.
Well after these classes I was still on a downward decent and I had taken the "Im going to cure myself " approach. I had decided herbal was the next thing to try. So i was on all kinds of vitamins and herbal tablets. I ook glucosamine, msm, cod liver oil, chondroitin, emu oil, arnica gel, the list goes on and on. Tried all this stuff for well over a year. Also during this time my symptoms had developed. The fatigue I was experiencng was overwhelming and my joints mainly my hands had started to lock up frozen, and I had noticed my knees jarring from side to side. Which worried me as I had seen my sisters painful knee disloaction which put her in a plasercast.
Then I went to a fibromyalgia support group to meet & chat to others, all of which seemed better than me and my sister, so it was quite disheartening.
I also went swimming in a hydropool. Which was good but was so exhausting fo me, I would literally be shaking from weakness when I got out & afterwards it put me in bed for a couple of days. It didnt seem worth it at all.
In the meantime I continued to research my conditions and found out everything I could about them, to find more treatments and I was desperately hoping that one of them would make me better. By this time i had been given crutches to use, which after using them for a couple of days I had badly strained ribs and my elbows would lock back even more and my hands would lock up more (a.k.a sublax). Plus the crutches would make me more exhausted. I was on and off crutches for a short while, people had mentioned a wheelchair to me for some time. At which I'd have an emotional outburst, which after shouting and arguing, usually ended with me crying. To say I wasn't coping was understating it
Well because of my progressed symptoms I went to my GP and requested to see another specialist, at which he refused and harshly siad "It doesnt matter what you have, theres still no cure". A few months later we moved house to a dorma bungalow with a downstairs bedroom for me as I could no longer manage stairs. At this time my sister was still managing stairs so she was upstairs. Because we had moved area too, this meant a new GP. When I told him what I had and my symptoms and how I had gotten worse, he did some blood tests which the results showed that my ESR & CRP (inflammatory markers) were very high. He mentioned something about polymyaglia, and that I should go and see another specialist, he even dictaphoned my symptoms and other info about me to send to him. But again this meant a waiting list.
My appointment came through quicker than I expected, the first appointment involved the usual, answering questions, more blood tests, and an examination. To which his conclusion was I have hypermobility syndrome and chronic fatigue syndrome. He said we will leave fibromyalgia on there but to me its a waste paper diagnosis. Which it is completely not. Different docs belive in different things and all these conditions are widely unrecognised. He sent me away and told me he would get in contact with me depending on the outcome of the blood tests, apparantly the ones I had do ne only at the GP didnt count for nothing. I remember during the entire appointment he made me feel like nothing was wrong with me and I was complaining about nothing, I remember he even mentioned something about walking to morrisons. Which was a joke being as I could barely walk around the house, let alone down the street. But again I knew what specialists were like from previous experience and my sister had seen over 10 of them. She was treated much worse than me, Im thinking because she was under the kids side, she went through alot with all the specialist she was made to go and see. Hers is yet another long story , but CLICK HERE to read about it in full.
Well after my appointment with that specialist all I was left with was an added diagnosis of CFS, but at the time I just thought this was a symptom of FMS, I didnt realise that CFS was a.k.a. M.E until a few months later.
Then out of the blue a couple of weeks later I had a letter from this same specialist advising that I go for a bone scan. I was completely shocked, and understandably worried, I was thinking whats showed up in my blood. So i phoned up again for my results of my blood as it had got me worried, the receptionist advised me of my results which were all relatively normal besides my ESR and CRP being high (46 & 20). So i went to the bone scan as of which I was so nervous about. I had to go first thing in the morning for an injection where they injected me with radiation. Then I came home and had to wait 4 hours and drink plenty of water to help circulate the radiation. I was feeling so exhausted and extremely worried. I find the waiting of these things are worser than actually having them. To say the least my IBS (irritable bowls syndrome) was highly affected too. The scan itself wasnt too bad, the worst thing was having to lay down and keep still, whilst this big machine goes around you. It lasted quite a while, they did everywhere besides my head. I remember in the room there was over 2 rows of computer monitors all along one wall. Each with different images and colours on them. I remember seeing reds and yellows on my feet, of ocurse I was trying to work out what the people looking at these screens were saying. I was convinced they looked worried, but i think at the time I was simply projecting my own worry. I was sent away again to wait for the results, that was a very long couple of weeks, I was a nervous wreak the entire time, but I had to wait to go back again to the speiclist to find them out.
About 2 weeks later I saw the specialist again. He told me that the bone scan was normal nothing to worry about, so a huge relief for me, but also all that stress was for nothing. But then he said he wanted to do more blood tests, and some more indepth ones, he mentioned a load of names that still I have no clue what they were. Well again a long wait and this time the results had showed a componant of Lupus (SLE). I was completely shocked and very un-nerved. I began doing more research on lupus and was worried as I had read it could infect inside the body like organs and such. I did have some of the symptoms of lupus too, but then agian alot of these type of conditions the symptoms do overlap. By this time my stress levels were at breaking point and a couple of days later I had a what can only been described as a nervous breakdown. I had sharp pains in my chest, I couldn't catch my breath, and I was shaking uncontrollably. I really thought I was having a heart attack. My parents rushed me to the hospital, which was less than 5 mins away. I remember sitting in the reception almost passing out, my mum said my lips had turned blue too. The nurse said it looks like Im hyperventalating and gave me a bag to blow into. Then I was put on a small type machine to monitor my heartbeat. I was taken to a ward, where I cant remember much as I was pretty out of it. I do remember lying on a hospital bed thinking I was dead and more weirder thoughts that I dont want to even think about let alone write down. But after a couple of hours of basically just trying to regulate my breathing, then waiting for the doctor to release me, I was released at just before 3am in the morning. I remember going home and still not breathing properly, its weird I was having to think about breathing, I just couldnt fully calm down, and was a complete state. I had to have my mum sleep in my bed with me and for months after this also, and I had to have music on every night, all night. For a while I was a complete nervous wreak, with frequent panic attacks every day. I couldnt be left alone and I found it so hard to even leave the house even when I was feeling up to it. I had lost all my confidence too and developed severe depression & anxiety.
On the next visit to the specialist which was a job and a half in itself just getting there, I told him I could no longer carry on with more tests, as I was so ill from stress and panics, he didnt seem worried and said that the lupus was only a componant which suggests it could just be something underlying, and with the ESR & CRP maybe I am just like that, but all these tests are just contributions to diagnosis's and do not stand alone as a diagnosis anyway. So he agreed to discharge me, but said I could come back to him anytime I wanted in the future.
So the next thing for me was medication to help control my panic attacks, I cant remember what the name was exactly, some kind of beta blocker, to stop the adrenealin whilst having a panic attack hoping to slow my heartbeat down. i took them for a little while, but wasn't really helping me and taking them just made me panic. I'd now got so bad I couldnt even take a tablet without worrying about it. Id worry I was going to die all the time and infact I was on the verge of wanting to die. Looking back now I relaise I was borderline suicidal, not that I would have done it, but there were times I was very close. The panic attacks were controling my life completely, I also started to binge eat out of depression which resulted in me piling on a few pounds. I began taking a herbal tablet called "Kalms" to help and I went through over 2 jars of those, and you get loads in one jar. Needless to say they werent helping me I just took them for the sake of it. I also tried sleeping tablets as my panics were adding to my already sleep problems. For some reason the sleep tablets didnt really work, only for about the first 2 nights then stopped working. They used to make me feel so bad the next day too, I felt so sick, dizzy and an almost hungover like feeling. Well I gave in taking them after a while again there became no point.
I then got sent to a pain councellor (I guess just another term for a shrink), so I figured she would also help me with my panics, etc. I only had one appointment she said I didnt need to see her again. Im not quite sure why this was but I was happy and no way was I questioning it. She did explain to me about panic attacks aswell as coping with pain. I did learn acouple of things but Im still not sure why she didnt want me. Either I had fooled her into thinking I was handling things or I had too much wrong for her to deal with. Althought she did give me her personal number if I ever needed to contact her, so maybe it wsa my fault, I was too proud and I hated the stigma that goes with seeing a shrink. I had real pain and fatigue, and yes my panics and depression were taking over but but my other stuff was still very real and debilitaiting. It had became that I had to go in a wheelchair some places, and I had found that my chronic fatigue was underestimated as to how bad it can be.
Well the next 2 years was spent trying very hard to get a handle on the panic attacks and depression. During this time I put my family through hell, but they were always so supportive, there are tons of stories about it but I really dont want to dwell on them any longer. So over this time my panic attacks begin to lessen and I had learned to manage them quite well through relaxation and a few breathing techiniques I had learned on the internet that really did help calm me down, also my mum was my rock throughout this.
