Long time CFIDS sufferers

Discussion in 'Fibromyalgia Main Forum' started by xchocoholic, Feb 21, 2006.

  1. xchocoholic

    xchocoholic New Member

    I was wondering how many long time CFIDS sufferers we have here. I've been sick for 16 years, but wasn't diagnosed until 1992 by Dr. Lapp. I have noticed changes over the years. Like I no longer feel fluish all the time and I don't catch everything that goes around. In the beginning I was sick all the time with an upper respiratory infections. My fibro has toned down too. The fibro kicks back up if I overdo it, but not to the extent I had it in the beginning. But, I have learned over the years to rest when my body tells me to. Anyone else ?
    [This Message was Edited on 02/21/2006]
    [This Message was Edited on 02/21/2006]
  2. Pianowoman

    Pianowoman New Member

    I became ill in Dec. 1990 and was diagnosed in 1991. Looking back, I think I had symptoms off and on for years before that. I really didn't get appropriate treatment until the last few years but I am seeing signs of progress.

    Kathy.
  3. spiritsky

    spiritsky Member

    or so. Not exactly sure of when or why. I wasn't diagnosed until much later but then looking back I could see there was a problem for a long time. Alkaline diet really helped with the immune system. I don't get colds or flu's anymore (maybe just a touch here or there but nothing major), even when other have them around me. Used to have a sore throat every week. I'm now recovering well and back to work part time after starting hormone replacement 3 months ago...
  4. Rosiebud

    Rosiebud New Member

    but wasnt diagnosed til end 94. Became much worse then.

    I have learned to pace myself and rest too.

    love
    Rosie
  5. EgyptStarr

    EgyptStarr New Member

    I was just diagnosed about a year ago, but I have had these symptoms for just about as long as I can remember. When my first real flare hit me a year ago, that's when I got my dx, but I have always been the type of person who always seems "sick" somehow. I've just never really been very healthy.

    xchocoholic, I posted a reply to another thread that you also posted on, and I had a couple of questions, so could you check that out? I think the screen name of the person who started the thread was Bremmet, and he/she was asking for a list of tests to ask for when trying to rule out other illnesses. You replied to that post, and I replied to YOU on that post! lol


    Thanks!
    Hugs!
    Starr
  6. rockgor

    rockgor Well-Known Member

    Been depressed most of my life. CFS hit when I was 40. Intense depression for two years. Now it's under control w/ medication. Symptoms including sleep disturbance and lack of energy have been pretty much the same last 23 years; just a little less energy each year.
  7. harrysmom

    harrysmom Member

    Hi,
    I have had CFS for 10 years. I retired on medical disability after trying to work another year and a half after being diagnosed. Was a teacher - am now 58. Pushing myself to keep working was probably not a good idea, but no one pays my bills except me.

    First 5 or 6 years of this illness were basically hell on earth. Then I started to rise a bit to what I'd call Purgatory. Now every once in a while I get a glimpse of Heaven with a period of time I actually feel almost normal, though never like I used to prior to getting sick.

    Mostly I don't catch everything that's going around, but periodically get a touch of a respiratory flu type thing if it's going around. Worst is constant sinus problems and a couple of years ago I got Bell's Palsy and even though it's not real noticable my face on one side never did return to normal. Alway have sore and slightly swollen glands around my ears.Blood work shows Herpes Simplex 1 and 2 are present. Also, EBV titers are high. Most of the time antibiotics make me feel worse and fail to clear up sinus problems permenately.

    Things that have helped the most are Xanax for the anxiety and sleep, Darvocet for aching pain, not overdoing, avoiding stress of any kind, and eating sensibly. Biggest wish is that I could actually do some exercise so I wouldn't continue to feel like I'm deteriorating strength-wise. It's depressing to not have a full life, but I keep hoping things will improve and they'll find out more about this illness and be able to help some of us more.

    Hope this adds to your information.

    Harrysmom
  8. adberens

    adberens New Member

    I have had CFIDS for 10 years. The first three years literally nearly killed me. I was home bound and in more pain than I can even imagine now. I was depressed about losing my job and friends and my life as I knew it. Eventually I have learned to pace myself so I can do things as long as I get enough "down time". When I push the bucket, I pay for it.

    In the past few years I have not been catching much beyond the common cold. I do get the flu shot.
  9. xchocoholic

    xchocoholic New Member

    Thanks so much for writing me back. I can relate to all of you. I have really good days and really bad days at this point, but I try to remain optomistic. I went through a long period of depression at the 7 year mark and swore I would never let myself do that again. It is definitely a struggle considering all we have given up and continue to lose out on. My daughter was 2 when I got sick and her father just couldn't deal with my illness. So I had no choice but to push myself to be there for her. She is 18 now and so I am finally getting the rest I need. Well, sorta, I did say she was 18.....

    Please stay in touch. It is so re-assuring to know I'm not alone. Hugs Marcia

  10. BootsyClay

    BootsyClay New Member

    I think I must be among the longest survivor. I was diagnose in 1975. I was 40 and I remember thinking often I can't be 40 and feel this bad. I had blood clots and hospitalized when I mentioned how I ached. What a blessing the dr for the clots called in a GREAT rheumatologist in Dayton, OH, Harley Ellman. When I first saw him he also took care of all your health needs besides his specialty. He was the Greatest. I didn't say much to anyone since I sounded like I was crazy saying how I ached. He assured me from the 1st I wasn't crazy. This was rare that many years ago. Little was known about it then. I too thought I would die and wished I could. I have been the gamut of meds to try. Nothing helped but pain meds and sleeping pills and such as Valium. I remember I had just come home from hosp. and I was so bad one night I had taken every thing they would give me one night at the hosp. At 12:30 I had my husband to call the local hosp. who told him I had already taken too much. After about half an hr he called my dr. He was great and said take another sleeping pill, I had already taken two. If that not work go to emer. room and have them to call him. That helped but only helped...at least I wasn't crying in pain. The next a.m. about 10:00 the phone rang and to my surprise it was my dr. He wanted to know how I was. This was only one of many times he was so caring. I too had all sorts of crazy illnesses and symptoms and was tested for all sorts of diseases. Once I had indentations all over my body and lost muscle. That was scary. I also had all sorts of stomach probs and still do. I had bronchitis often, and upper res. infections. In & out so often to emer. room. I am now in Fl and have a good rheumy maybe not like in Ohio but has great reputation. She keeps close watch. To complicate fibro I have a very rare lung infec. micobacterium avium Intracelulare so now have to take 3 dif. strong antibiotics every day. If I thot I was tired before I had no idea how bad you could feel. My rheumy now is not against pain meds so I take those and think with all the meds side effects I will take my chances with the pain meds. Also take Ambien and occasionally Valium. Then I have to take Phenergan because of the antibiotics. I also have Sjogren's. For that I take Evoxac prescipt med. OTC remedy I just found is really helpful called TheraSpray. It is getting worse as our my dry eyes. For them I use Restasis drops. Hope this helps someone out there. In spite of it all I am still plugging along. This is just a tip of my experience with fibro. I have a great husband. Though really sick himself he is a big help just by never complaining and after almost 51 years still tells me I'm cute and how much he loves me every day. Hope this helps someone out there. In spite of it all I am still plugging along.
    [This Message was Edited on 02/21/2006]
  11. Lolalee

    Lolalee New Member

    Please do not take offense, but do you think you can edit your post and put in some paragraph breaks.

    Many of us have difficult reading when a lot of words are written without any breaks.

    I'd love to read what you have to say, but I am not able to the way it is written now.

    Thanks and again, I mean this in the nicest way.

    Lolalee
  12. kholmes

    kholmes New Member

    But I was able to teach full-time and even climb mountains during much of that time. However, during that time I knew something was very wrong, a. I'm completely bedridden right now, but I'm hoping to recover somewhat. I don't mind if I never climb mountains again; I just want to be able to walk to the park down the street again!
    Just won SSDI on my first appeal, though, so I feel a bit vindicated in that department.
    Kholmes
  13. i was diagnosed in 1995,and i was told that the hospital had known i had this illness for many many years before 1995,,they just didnt choose to tell me because,,as they said...well you were,nt complaining of mobility problems back then.i was so angry with them for keeping it from me.


    love
    fran xx
  14. berrytired

    berrytired New Member

    Hello...new here. I believe I've had CFS for about 5 years or so...in reading some of the comments I don't think my case is that bad or that bad yet but its certainly bad enough...I've had terrible days but I do manage to work full time though I have a fairly stress free job. When my flare ups occur I sleep so deeply its hard to get out of bed. Brain Fog, dizziness and heart palvitations. I make myself exercise even if I feel lightheaded in which I'm careful. I make that my number one priority. I take alot of vitamins! well...my thoughts and prayers are with you all.
  15. pepper

    pepper New Member

    I got sick in Jan.'93 and was diagnosed in Feb.'93. (I have an amazing GP). I have noticed that the illness seems to have morphed over the years. I figure part of the reason is that, like you, I have adapted to life with these DD's and have adjusted my lifestyle and my expectations.

    The first couple of years I was seriously depressed and grieving the loss of my life as I knew it. I hated being on Disability - still do - but it is what I have to do right now.

    I used to catch everything going around and no longer do.

    I have been feeling overall better during the last year although I have had numerous setbacks. I think that I may have hit on a good combination of treatments that are actually helping. It's too early to say for sure.

    I think that we have to continue to search to find the right combination for each one of us.

    Pepper
  16. Roseblossom

    Roseblossom Member

    I only figured out what was wrong with me 4 years ago, but I've had the symptoms in varying severity for many years.

    I thought I felt so exhausted & ill all the time just because of depression and PTSD. Then I saw a list of the CFIDS markers and the light bulb went on.

    These are the things that have helped:

    *Accepting my life as it has to be now - quiet & low stress;

    *Taking steps to put my boundries in place and live my life the way I need to;

    *Experimenting with nutrition & environment improvement;

    *And last but not least - discovering others who understand & support. Yes, YOU GUYS are wonderful!

    Bless your little hearts,

    Roseblossom
    [This Message was Edited on 03/05/2006]
  17. kachotpink

    kachotpink New Member

    I have suffered since 1988. I wasn't really diagnosed until 1990. For the most part when I told my PCP my symptoms:sleep distrubance, sore throat, swollen lymph nodes, headaches, memeory loss, low grade fever, low blood pressure, nausea, & no immune system he told my mom I was just depressed. Of coarse I was depressed not knowing what was wrong with me at age 29.

    I saw a special on 20\20 about CFS in April 1990. Then I found a Dr. to help me. He eleminated other diseases it could be. When he did a blood work up my anti bodies or intigens were 5xs higher than a normal level. After the other test proved negitived then it was labled CFS with immune disfunction.

    One morning I couldn't remember driving to work. That is when I talk to my boss and ask for some time off. He was very understanding. I was completely bedridden for 9 mths. I still have alot of trouble with my immune system. Anything that is going around such resportory viruses & stomach bugs I get them and have a hard time getting rid of it.

    I have to work because I'm widowed and someone has to pay the bill so bing in public makes me a easy target for every kind of virus out there. Most people can't understand why I stay sick all time and talk about me alot but one day when something happens to them they'll know.

    I take soma for muscle aches, Clonazepam for sleep distrubance, wellbutrin for depression (since my husband and mom died of cancer recently), nexium for stomach problems, and a host of vitimans and herb. One thing I found that worked well for me was BEE ALIVE ROYAL JELLY. I can't afford it now but it really helped me when I was the sickest.

    Maybe some day we will find a cure for CFS and many other diseases that plege the world we live in. I have read a book by Kevin Trudeau called NATURAL CURES "they" don't want you to know about. It is definately a good book to read if you have any kind of illness.

    Hope this helps someone who needs info. I have also tried other thing if you are interested let me know.
  18. alaska3355

    alaska3355 New Member

    hasn't responded here, but she's had CFIDS for at least 34 years. Also, Dee50 has had it a long time.....
  19. xchocoholic

    xchocoholic New Member

    Since many of you are housebound, like me, you know how it feels to be missing out on living in the "real" world (work, social activities).

    I miss my job, but I miss the social aspect the most. Holidays make me sad. Of course, I pretend to be having a good time. But I am spending most of the time just waiting for it all to end, so I can rest. Do you think anyone notices ? : )

    I'm still adjusting to valuing myself for who I am and not what I do. After 16 years, you'd think I'd have that down.

    I'm grateful to have people who understand what this illness is "really" like in my life now. Take care HUGS
    Marcia
  20. angeljoe

    angeljoe New Member

    I know thats not long at all compared to you guys. It really does feel like forever to me. Its pretty crazy but I had never even heard of it before me getting it and Fibro. I can't even believe I didn't know about it before. Two years is nothing compared to 16 years living with a nightmare. May God bless and keep you!
    Angela