Musings - Can I remember what "normal" is?

Discussion in 'Fibromyalgia Main Forum' started by jaltair, Nov 9, 2005.

  1. jaltair

    jaltair New Member

    This week has continued my downward physical spiral that has become reality for me. For the morning hours after I take my pain pills and the Cymbalta, I work without much thought of the pain that I continue to feel, somewhat anesthetized by the medication that I'm on. 2:00 P.M. continues to be the bewitching hour that pain returns to a noticeable state and the medications stop working; at least it seems that way. The pain level go up considerably, until by 5:00 P.M. I'm at a level "9" pain. I take my evening medications at 6:00 P.M. when I get home, and after two hours the feeling of numb returns. I can still feel the pain if I try, but the level is down to a 5, and that 5 feels wonderful! There would be no way that I could drive or work in this state.

    As someone told me, FMS and CFS affects people differently, and there is no "universal" face for FMS or CFS. These miserable problems are syndromes, a cluster of symptoms. That's why everything is supposed to get "ruled out" as a diagnosis before the diagnoses of FMS and CFS are given.

    Some doctors stop short of doing tests because they may lack expertise, may feel that the tests are not warranted, may feel the tests are unnecessary expenses, or there may be a myriad of other reasons that doctors won't or don't look further into why a person has certain symptoms. Those with FMS or CFS must push the doctors further to find reasons. I still believe that an underlying cause can be found for my FMS or CFS, and if there is an underlying cause, then it might be treatable.

    A "sleep study" I had at a local hospital was normal, and my doctor is now sending me to Stanford for further evaluation at the big sleep clinic. I'm not sure that Stanford will do much more than the hospital where I had the sleep study, and wonder if I should even go.

    I have had so many medical problems that I feel in some way have contributed to the FMS and CFS. This includes mono, Valley Fever, unknown viral infection that localized in my joints causing swelling, etc. and etc.

    Most people with FMS or CFS become "students" of these syndromes, and I'm no exception. My belief, least in my case, is there is an underlying immune disorder causing the symptoms. I say that because I have abnormal blood tests on the immune panels that have been done. At one point my rheumatologist was saying he thought I had Lupus. Now, he is just "watching" through lab work on a periodical basis. I do take one drug for Lupus.

    Doctors have told me that FMS and CFS can coexist with other diseases. My problem is that I have a hard time believing in FMS and CFS. I firmly believe that a underlying problem is to blame, and that the actual cause will be uncovered to explain all symptoms.

    I work full-time and have "talked" on the Support Group Message Board a lot about problems I have with working these days. I thoroughly appreciate having the Board there with everyone's comments, suggestions, and support. Problems I spoke of in the past on the Board have continued to get worse. Working is becoming more and more difficult. I absolutely love working, especially in my current position. What really bothers me at this point in time besides the fatigue and pain are the changes in my mental status causing problems with memory and focus.

    I'm now 59, but believe I've had FMS since my mid-twenties. In the 60's, 70's, and even 80's, it wasn't like I've been experiencing over these past three and one-half years. I would be doing well, then wham! Get "hit" and be down. I was always extremely tired, and jokingly, but truthfully, I can say I slept through my children's childhood on the living room sofa!

    All I know is that this blasted, miserable physical state is getting worse. I just want to feel "normal", whatever that is . . Or can I even remember what normal is?
  2. orachel

    orachel New Member

    ..I've only been sick 5 mos, but its been five mostly totally disabled 5 mos...now 30, need a cane, and can't drive anymore! Sheesh!

    I was talking to Lolliboo the other day, and she had I theory that I thought was so brilliant....Its too small!

    The problem is that the issues causing fm and cfs and mps are just too dang small for docs to know it...perhaps in some are of the brain and or brain stem (some very interesting theories on this I've been reading lately...plus I know a woman who's suffered with FM and CFS for 10 years. Now she pops up with a leak of spinal fluid into her body cavity. She's been in Thomas Jefferson Hospital for over a month....did brain surgery to correct it, and just managed to create more leaks!), but we still have sooo much to learn about the workings of the human brain. Explain why many patients evaluated with very new brain mapping procedure (can't remember what its called) are turning up with tiny pinprick holes in their brains?

    Something about that theory....Docs don't know what the heck is going on with us, not because there's nothing wrong, but simply because its' too small (as in to be seen, not as in insignificant) for them to see. Good way to illustrate this....many moons ago, epileptics were thougth to be possessed by demons, or insane....Docs just didn't know enough about the human body to see what's wrong. We're in exactly the same boat...I'm convinced of it.

    But you go on the INSISTING on testing.....Waaaayyyyy too many of us end up with strokes and other neurological problems that are very hardcore after docs have written off our severe neuro symptoms as "fog".

    What is this nonsense? Is it reasonable that all of us have horrible neurological symptoms, yet they're totally written off as being part of the FM, therefore untestable and benign. HELLO! People with FM are dying from neurological incidents! Sheesh!

    I DEMANDED a sleep study from my doc....2 mos later, after much insisting...he finally ordered it. Turns out my wacky brain is waking up 40 times every single hour that I'm asleep! (Ask if they tested your Alertness Factor during your sleep study...many of them don't, and this is my primary problem!). This is inhibiting both rem sleep (which controls memory, cognition, and mood) and deep sleep which is when the body rebuilds itself. A cpap machine, and possibly a surgery, and I'm hoping for signifigant improvement.

    I don't buy this whole neurotransmitter as a cause theory. Quite frankly, i think its more likely that the problem lies elsewhere in the brain, and that odd levels of neurotransmitters are simply another symptom...not the cause.

    Honestly, I don't even pray for normal, anymore. I haven't given up...I just know that until the medical community nails down what ails us, it is a babystep to recovery sort of an illness. 5 months ago I was a somewhat healthy, professional working woman and newlywed who was hoping to start a family soon.

    Now I can't work...i can barely walk and had to buy a cane at 30! Can't drive due to neuro symptoms and hardcore side effects from the myriad of pharmaceuticals md's keep shoving into me....to no avail. I'm usually still at an 8 or 9 on pain scale.

    Out of curiosity....have you ever considered FFC? If you've got some interesting blood work results, but they don't lead to any other die hard diagnosis, I'd STRONGLY suggest it....I'm hoping to begin soon. So many people have gotten clear diagnoses..;..ie: you're defective in this particular hormone....take this supplement. You're suffering from these dormant viruses...these Iv therapies will help...

    Based on what you describe, I'd say that's a good place to start! If you're not familiar with the FFC clinics..there's a ton of them...just do a search here for FFC and read away@! So many of our members have been put into almost complete remission with their treatment plans...all tailored to what YOU have...which is different from what I have, no doubt about it.

    I do believe there is a central CAUSE that binds us all together, but that we all manifest this DD so differently because of the other factors that affect us such as viruses in our system, predisposition to certain diseases, and weakened body systems.....

    That's just my theory, but I'm sticking to it! LOL

    Hugs,
    Rachel