How many of you thought.....

Discussion in 'Fibromyalgia Main Forum' started by tandy, Nov 28, 2002.

  1. tandy

    tandy New Member

    For most of us it took a very long time to get a Dx of our illness.I know I thought during all the testing and dr visits...that something very serious was wrong with me.(possibly life threatening..)Which led to anxiety and insomnia,etc... Just thought I'd poke around to see if others thought this way too.(and sometimes still do...)
    All this pain.Are they missing something?
    Thanx!Hope everyone enjoyed there feast!
  2. tandy

    tandy New Member

    For most of us it took a very long time to get a Dx of our illness.I know I thought during all the testing and dr visits...that something very serious was wrong with me.(possibly life threatening..)Which led to anxiety and insomnia,etc... Just thought I'd poke around to see if others thought this way too.(and sometimes still do...)
    All this pain.Are they missing something?
    Thanx!Hope everyone enjoyed there feast!
  3. amymb74

    amymb74 New Member

    And sometimes still do. I thought for sure I was dying & the docs were missing something. For the 1st 5 or so years I didn't match the exact criteria for cfids but slowly, all the symptoms started coming. I still feel like I won't make it thru the day - like I'm going to just snap out of it & drop. I can't get used to felling lightheaded & in a fog all the time. I think a lot for me in the beginning was just plain denial - to myself & everyone else - I tried so hard to hide it. Now its just fear of what my life is going to be like, if I'll ever get better. I have an awful fear that the few people in my life won't be there forever & what would I do alone - I have 2 small children. This illness controls all my relationships & my entire thought process.
  4. nana42

    nana42 New Member

    I understand what you are saying. The fog bothers me the most. Today we had the entire family here - 3 adult children with spouses & 6 grandchildren. My husband did the turkey and gravy, and the kids brought the rest. About 1 hour into the festivity, I felt like I was on overload and my body shut down. It was so hard to communicate. My oldest daughter and her family had no idea what I've been going through as they don't live close. I ended up taking a nap after everyone left. I hope everyone has a supportive family. I am lucky and thankful for my.
  5. teach6

    teach6 New Member

    I agree with you. I also have CFIDS and I was getting ill over a period of many many years. By the time I was really ill I was quite worried about what could be wrong with me.

    I have FM too and I was to the point that I couldn't turn my head or lift anything and it was time for school to start. I let the kids help me with everything when it came to setting up my room and handing out books, etc.

    Finally getting a dx was a relief.

  6. CJR

    CJR New Member

    I really know what you mean about not knowing what is wrong with you. I am 53 and still after 30 years do not have a definitive diagnosis. My rheumatologist just mentioned FMS last week and I have been trying to learn more. I have suffered a long time and been given many different diagnosis. Many times doctors have disagreed with each other. I am so tired of it all. I used to have severe headaches and for ten years I was treated like I was a nut case. I got to the point that I decided that either the headaches would get worse or kill me and then they would believe me, or maybe they would go away and prove the doctors right. Maybe I was just a nut case. When I developed neurological problems I was diagnosed with multiple scrosis. After another 10 years of increasing neurological symptoms the doctors finally decided I had a birth defect causing pressure on my brain. I had surgery and the symptoms got better but I now have some neurological damage because it took 20 years to get a proper diagnosis. But, the diagnosis of MS took away 10 years of my life and 10 years of my time with my girls. Now one doctor treated me for Ulcertative Colitis for the last 1 1/2 years and another says I have IBS and do not have any colitis. My rheumatologist says I have some type of inflamatory arthritis and maybe fibro but he really isn't sure what it is. I just know I am so tired of hurting and not knowing why. And when you tell anyone you might have fibro the answer is "oh, your one of "those". Like you are not completely sane or something. BUT I HURT, and no one can tell me why. I see 5 different doctors and the only thing they can tell me for sure is my colosteral is too high. Sorry for all the "b"ing. I have tried to get into the chat rooms here to talk to some of you. I got in once and every one was so nice but for some reason it will not let me in again. Phooy, I'm going to bed. Hope I can sleep. Haven't been doing too much of that lately either. Good night all.
    [This Message was Edited on 11/28/2002]
  7. karen2002

    karen2002 New Member

    May I make a suggestion? I went through the same array of doctors you mentioned, with the same results. Finally after sheer frustration--and exhaustion, without any clearcut diagnosis, and most IMPORTANTLY treatment, I made an appointment to see a Doctor who specializes in Chronic Fatigue/ and Fibro. It has made all the difference in the world, CJR. I now am receiving treatment, feeling much better physically and emotionally---I have gone from hopelessness, pain, and exhaustion, to a new outlook, and improved health. My new doc is very knowledgeable, and can treat all the other health problems I have in addition to these disorders. He keeps the fibro/cfs in mind when we treat the others, so that we do not exasperbate symptoms. He treats the whole body, unlike the various specialist, that would not look at the complete picture. The Fibro/CFS specialist was the answer for me.
    Best wishes,
    [This Message was Edited on 11/28/2002]
  8. tandy

    tandy New Member

    I'm sure a specialist in our DD is the answer.One who works on CF/FM only~ Were you one of the lucky ones that found one nearby?I've searched the state of NY-where I live and the closest I can even find one listed is 7 hrs away!Not to mention my insurance is about the worst and not alot of drs even accept it.So where does one go in a situation like this??Like me-I take what treatment I can get...a local Rheumatologist.I feel i'm not getting anywhere....but I do get some pain relief,not much.Other than that I search the internet and try other alternatives(ones that I can afford)and hope that one day I just stumble onto something that helps.(fat chance?)
    You are right!One should seek out a specialist,but some of us don't have that option unfortunetly.
    Have a great day!
  9. karen2002

    karen2002 New Member

    Tandy---no unfortunately the Specialist I found wasn't nearby---no such luck :) My husband has to take an entire day off to drive me--to appointments. I have absolutely NO insurance---and have to scrimp and save, for appts. and treatments. I will sell off every stick of furniture or whatever , if I need to--to fund my treatment. I have improved greatly since finding someone who really understands these disorders (I was bedridden, before). Nothing we have accumulated is worth not having a life to live. Not only that but one can reason if they are able to make, let's say $25,000. a year in income when healthy and working, and are now unable to work, they are losing $25,000. yearly. So spending money to get well, can actually be a savings :)
    Not only that---but I threw tons of money away, exhausted myself further, and added to my stress---on disbelieving docs who got me no where, prior to finding a good one.
  10. New Member

    Karen, can you tell any of us with what meds the Dr helped you. I still don't know what to ask my Dr to prescribe. He told me to keep asking the people on the net and he will then research what he can do for me. It is so strange, that we have to research our illness ourself's!Are you taking some alternative herbs or something stronger?
    He gave me ambien and trazadone, wich do a nice job helping me to get to sleep and I'm so thankful for that. I'm feeling much better in the morning because I had a really good rest. Hope that helps somebody else.
  11. dan0248

    dan0248 New Member

    I too, have had hard time getting this diganiosed correctly, and my doctor here has been giving me medication for arthritis. The new doctor in Kansas City gave a handfull of pills to take for this but he told me that he couldn't cure me. He only hope to control the problems with this Fibromylia. He has me on Tramadol for pain (but it keeps me awake all night) Cyclobenzaprine for the musles, and Allopurinol for the uric acid.
  12. tandy

    tandy New Member

    At one Drs office-(when I called to try to get into him)The secretary told me he did'nt accept my insurance,so i offered to pay cash...thats how badly I wanted help.I was told no b/c when I have an insurance,they could'nt overlook that and take cash!!(I swear to you-I was in total shock!!They would'nt take cash?)So ya see,like you,I too would pay even by srcimping&saving every dime.
    So maybe i'll call around and say I don't have any insurance&pay the $.
    I too would be very interested in what helped you.What has your dr recommended for you?
    I use melatonin to help me get to sleep,it does help me.(My dr had me on Elavil for sleep but I could'nt stand the after effects,totally wiped out the next day.Not to mention slight weight gain,which would have been more had I stayed on it!)I also take a good multivitamin.
    I get darvecet and or ultracet for pain,none helps much....but dulls the pain slightly.
    Let us know what has helped you,I realize what works for one sometimes does'nt do nothing for another.But its worth a shot~
    Best regards,
  13. abbuttercup

    abbuttercup New Member

    sometimes i still think that there's more wrong with me than fibro. it's very hard for me to realize that this illness can be this awful. i don't think the worse case senario, i think that maybe it's a bug that i caught and it will go away, of course it never does. i am frustrated because there's no cure and i want one, not just for myself, but for everyone else having to go through this. i believe that in the near future they will figure out what causes these illnesses and we will all be better :)
  14. 2girls

    2girls New Member

    I thought for sure if it wasn't my thyroid acting up as it once did, it must be some form of cancer because there are just too many symptoms. Reading the posts from others I was probably lucky to be diagnosed after 1 1/2 years. My dentist/TMJ specialist was the one who suggested I probably have FM. When I mentioned this to my doctor he said he wondered how long it would be before another doctor told me this. What kind of answer is this? He then sent me to one of his collegues, who officially diagnosed FM. I still think my doctor simply feels I am depressed and that antidepressants will cure all. I was never depressed, but anxiety built with each dr and er visit especially when no one was able to pinpoint what was going on. Obviously anxiety, insomnia, IBS etc are our basic symptoms but for me these symptoms were manifested as a result of not knowing what was going on. It is very frightening, but I have learned that stress/anxiety will exaggerate symptoms tenfold. I try not to focus too much on this illness and whether or not the drs missed something. I think I would be bedridden from pain/anxiety.

    have a great weekend,
  15. tandy

    tandy New Member

    You took the words otta my mouth!! I try not think of this DD being something else b/c the fear does lead to more anxiety,pain etc... It is hard to imagine something feeling this horrible ,and yet so many people out there don't even know what it is,or have never heard of it.(mind boggling!)I'd love to hear of more research being done on these DD.I'm pretty certain that my dx is 100%,I had 3 different Drs agree to FM.One of which has'nt totally ruled out RA at its start.????I think b/c of my fingers swelling and I get little knots on my knuckles that are red&very tender.Then a few days later they're gone.
    There are to many unanswered questions with CF/FM.
    Thanks for answering,
  16. tamara!

    tamara! New Member

    It took years for me to be dx with this dd. I always thought I was going to die from something that wasn't dx.
    When I was finally dx I fell apart on the way home because after all these years I wasn't crazy.

    I still feel like there is something else, especially when I feel exceptionally bad, but I really don't think there is.
    This disease is just so strange.
  17. mariac2000

    mariac2000 New Member

    It's hard to comprehend feeling as miseable as we do and know that there is nothing really bad happening(not that fibro isn't really bad). I still expect them to find something else because my gut tells me it has got to be something much more serious. There seem to be a lot of us out there that feel the same way, and we should take some comfort in it. Please don't loose sleep over it. You need your sleep.

    Good Luck,
  18. dlizard

    dlizard New Member

    it doesn't take a brain surgeon to figure out we are sick... but yes we all know they either don't want to know or don't know what the heck we REALLY have.... think about it. I've known people of and on for 20 yr with things that doctors can't/won't explain from being a nurse. Most of em can only recall a very little bit learned from their schooling which includes nothing about people like us LOL>>>> its actually very sad but one day God will want to know about the cover up!!!!!!! Good luck!