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Is This Fibro Or Am I Alone???

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Old 11-05-2008, 10:24 AM   #1
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Is This Fibro Or Am I Alone???

Hi everyone,
I have posted on a few boards over time, in the hopes that there is someone else out there like me. To say I feel alone is an understatement.
I have been chronically ill for 7 yrs now and Im still getting the same old story, "not sure whats wrong with you" statement. "Have you seen a physciatrist", "are you stressed"....I could go on and on.
I have gone through the whole testing process, for various illnesses, yet I somwhow don't fit the exact criteria for certain ones, ie: MS, Lupus, Parkinson's, Lymes and so the list goes on.
At the moment I am seeing lupus consultant who is lovely, however he says he is not sure that I have Lupus, although I do have some sort of systemic inflammatory condition. He suggested I try Plaquenil to see if that helped. I did give it a try but the Diarrhea was unbearable as a side affect.
I originally had a lesion on my brainstem, and it was considered at the time to be MS. However, again I was told I didn't quite fit the whole MS thing. After a few more scans the lesion wasn't there and so I was told I therefore should be ok. I then had a spinal tap and it came back positive for Oligoclonal bands in my CSF, again I was told this was not a diagnosis for MS alone.
My neurologist suggested I seek the help of a physciatrist at this point as it was all in my head. He made me feel like a total hypochondriac, a waste of his time and a complete headcase.
To try and explain my symptoms is not an easy one, as every day can be different and im sure there will be those amongst us who will look at this and suggest maybe it is all in my head. However I can assure you my symptoms are very real and can be very painful.
After collapsing seven yrs ago, with what looked to be a stroke at the time, I have been chronically ill ever since. I didn't have a stroke, and thats where the idea of MS initially came in. I had problems walking, numness in my left side, nausea, muscle spasms, slurred speech off and on, ect ect.
After 7 yrs of symptoms coming and going I now find myself having what I call flares. My eyes become inflammed, I suffer from IBS and diarrhea, still get muscle spasms, stiff shoulders neck, my arms ache terribly, joint pain that migrates, but is always in my wrists forefinger and right knee. Brain fog, (hate that one), I lose my thought process, the tiredness is beyond belief and I f I don't sleep enough it makes me feel ALOT worse.
I get out ofr bed in the morning and I feel like an old woman, I am so stiff, I felt as though I havent slept a wink, and by the time I have managed to get down the stairs to make a cup of tea, Im so worn out I could easily sleep another 6 to 8 hours. The pain in my upper arms and wrists is at it worst at the moment.
If I walk for to long I get a brain fog and my legs just get weaker and weaker, I now have a wheelchair.
I have lost 3 stone in weight over the last 4 months, have undergone a gastrscopy, yet my stomach is fine, all blood tests are fine, I am soon to have a colonoscopy, but the consutlant thinks thats fine to and it could be stress.
I certainly DON'T enjoy going through all this, you would have to be mad to enjoy, Gastroscopy's, spinal taps and so on. I just feel like I want my life back and some help towards this constant pain, and overwhelming tiredness.
After my last flare I went down so badly that mentally I just gave up. I turned to my GP and said look I have fought this for 7 yrs and I don't think I can anymore, so can you help. He said I think you need anti depressants to bring you back up, so he gave me Prozac. I took the Prozac for 3 weeks, when suddenly I got up one morning and I just knew something wasn't right. As the day went on I became more anxious and paranoid, and had thoughts of wanting to hurt my partner. Through all these terrible thoughts there was still a rational part of me that knew this wasnt right. So I called my GP and he suggested I went to see him that instant. I got into my car and drove the short distance down to see him. On the way down I just went bang and encountered a full blown Pyscotic attack. I drove the car off the road and tried to kill myself. In the midst of all this my partner phoned my mobile phone and assertained where I was. I was soon picked up taken to the Gp and from there admitted on to a physciatric ward for 10 ten days. This was all due to the Prozac I had been given. They took me off it immediatly and said never to give me that again. Because of this event I since then suffered panic attacks and had nightmares about going through this very unfortunate event. I certainly didn't kneed this on top of everything.
I am 41 years of age and have the strength of a weed, the look of a very drawn person and I just don't recognise what is staring back at me in the mirror anymore. My symptoms are not just confined to what I have already stated there are more, and some come and some go.
I am starting to getting my life back mentally after my encouter with Mr Prozac, I was very unlucky in as much that 1 in 10,000 people get his severe reaction. With that behind me I would like to know if anyone else is suferring physical symptoms that are difficult to diagnose, that mimic other conditions and does this sound like I could have Fibromyalgia?....Thanks...

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Old 11-05-2008, 12:58 PM   #2
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Re: Is This Fibro Or Am I Alone???

hello topsy,
the first thing i can tell you is that you are NOT alone! we may not all share every one of your symptoms, but i can tell you that i share many of yours - the wrists, fingers, upper arms, neck pain, some degree of numbness in fingers and toes, burning sensations, stabbing pain, brain fog, etc etc. i also have symptoms that you haven't listed, and other people here on this board have some of your other symptoms! there is so much variation with fibro, i don't think you can really exclude anything from being part of this disease if you have that much widespread pain. you mentioned seeing a neuro. have you gotten a second opinion? for any doctor to tell you this is all in your head makes THEM crazy. we know this is real pain, and for anyone to minimize it or make you feel like it is all in your head is cruel and irresponsible. you don't want to be treated by someone like that. you need a doctor who will take you seriously and even if you never get a definitive diagnosis (i haven't yet either!), you need some meds for your pain management. obviously an anti-depressant isn't the way to go, and the plaquenil didn't agree with your system, so you move on to something else. this is about your quality of life, and you have to find a doctor who cares about that. you can always come here to vent, and you will always find someone who can relate to what you are going through! you definitely aren't alone!!! hang in there lily

Old 11-07-2008, 08:13 PM   #3
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Re: Is This Fibro Or Am I Alone???

I also have many of the symptoms you mentioned. I get shooting, sharp pains in joints and muscles, fatigue, depression, anxiety. I definitely get the aching arms and shoulders and the numb hands and painful wrists. I also get jaw pain and headaches and terrible back aches and pain like sciatica from my butt to my legs. The pain comes and goes, but there is always something hurting.

I have had emotional outbursts and bouts of crying. I isolate myself in my home. Except for my husband, my son (when he's home) and my dog, I don't want to see anyone. I go to the doctors, sometimes the library or to walk the dog for a short time if I'm up to it.

I have had doctors look at me like I'm crazy when I talk about my problems, even the specialists. What you have sounds a lot like fibro to me, but then who really knows. But you are definitely not alone.

Old 11-08-2008, 09:53 AM   #4
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Re: Is This Fibro Or Am I Alone???

Hugs and kisses xxxxoooo go your way. What a struggle you are having! You are not alone, a lot of the symptoms you are describing are typical of FMS. Have you told your doctor you think he should look into this syndrome? I had been going around the mulberry bush with my rheumy and finally I asked him if it could be FMS. After examining me with that in mind, he said that was what the problem was. Once I knew it was FMS, I began a search to find what would help my life improve.

What did the lesion look like on the MRI? A lot of FMS suffers seem to have white matter that shows up on xrays and such, which seems to be harmless. I'm not trying to negate what might have been something serious (I'm no doctor).

If you are able to focus on reading (I know this can be difficult), read "From Fatigued to Fantastic" by Teitlebaum and "What Your Doctor May Not Tell You About Fibromyalgia" by St. Amand. Both of these physicians treat FMS in different ways, but their recommendations might help you.

You poor thing! Keep searching and never give up.

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