After CFS

Discussion in 'Fibromyalgia Main Forum' started by Irwin, May 26, 2003.

  1. Irwin

    Irwin New Member


    I've had chronic fatigue syndrome since 1995 and am finally at the point where I don't have to nap everyday. I still need lots of sleep, 10 to 12 hrs a night but I don't have to nap regularly. Walking tires me out but I do it anyway at least 4 days a week for about a half hour, that's the limit of my endurance. I'm still on disability and can't see working until I feel much better.

    Besides still feeling tired I notice that my mind isn't as sharp as it used to be. It's depressing to me that I can't think as quickly as I did before CFS.

    I feel that I'm over the worst of it but what now? Do I stay where I am? Do I improve and get better, or what?

    I'd be interested in reading your comments.
  2. Irwin

    Irwin New Member

    Hi Spacee,

    I had a feeling that I might have hit a plateau but I really didn't want to think about it. As with other illnesses I've had, even the common cold, I've experienced just two ways to be, either sick when I'm infected or well when I'm not. Being somewhere in the middle, not sick enough to be in bed all day but not well enough to work or play sports for an extended period of time is an unaccustomed situation for me.

    It looks like there is nothing I can do about it except enjoy the good days and hope there aren't too many of the other kind. Thanks, I apreciate your response.

  3. lucky

    lucky New Member

    I am happy that you got much better since 1995, and I do not like to discourage you. Some things will change and you probably do not feel so fatigued anymore, but basically, and this is my own experience being ill for 20 yrs. at least (diagnosed 15 yrs. ago), I am still not functioning without meds. The cognitive/neurological problems with CFS are not going away most of the time, and the longer one is ill the more the symptoms become chronic, the same goes with the immune system.
    But...and here is the good part, one learns to live with the illness and changes the whole life around and will enjoy the many new things we discover in our new life. This is a very different challenge and can bring new joys which we did not experience before.
    Sincerely, Lucky
  4. Irwin

    Irwin New Member

    Thanks for your response.

    I wonder if you also are still bothered by leg cramps and feeling more tired after a nap than before. This whole illness is a mystery to me and my doctors.

    I have finally acccepted my condition after many years of being angry about not healing and returning to my life before CFS.

    Now, like most of us I assume, I've learned to just do as much as I can, without pushing myself and then crashing afterwards. I so much want to have my life back that on many occassions I've tried to do too much, only to feel exhausted for days afterwards. Hang in there.

  5. lucky

    lucky New Member

    and thanks for your e-mail. As all of us, the suffering we have to do is not really fair, but it does help to have a positive attitude and above all to accept our illnesses which takes time. And, a good and supportive doctor is very important part in dealing with the many problems we are facing.
    And, of course, the meds I am taking are and have been very helpful for survival. I am lucky that I tolerate some and that they also have made my life a lot easier. For example, without the Ritalin, my daily life would be spent a lot more in bed whereas with it, I can do things I enjoy doing (gardening, etc.) and do not have to rest every 5 minutes. Also it helps the memory problems quite a bit, it is amazing, the brain fog etc. is hardly noticeable with it.
    But, each one of us has to find their way to handle and cope with these illnesses, since we all have different symptoms. But, I guess the terrible fatigue in CFS fits 'one for all'.
    As a matter of fact, I am having some leg and heel problems as well lately and I am almost positive, that my antidepressant needs updating which really help with the fibropain.
    I wish you well, Lucky
    [This Message was Edited on 05/31/2003]
  6. Irwin

    Irwin New Member

    You are fortunate that you don't have side effects with the Ritalin. My energy boost was excellent from it, however, I began having nausea, and that was with taking only half the amount the doc recommended. I switched to Adderall and had terrible stomach cramps. Two possible remedies went by the way side, so for me it's back to the drawing board.

    I'm glad to see you're getting relief from the fatigue. It can have a way of dominating our existance. I hope you have continued success.

  7. lucky

    lucky New Member

    I am sorry that you could not take the Ritalin and had too many side effects with it. Did you ever try Modafinil?
    The Ritalin does not only lessen the fatigue but also has a big impact on the mental fatigue (brainfog) as well as memory problems. This has been the biggest help in my case.
    It is so difficult to find something which is helping and for many of us which above all we can tolerate.
    Do you have a good family physician who supports you?
    And are you on any antidepressants as well? Some of them also help the fatigue and also pain etc.
    Take care, Lucky
  8. Irwin

    Irwin New Member

    I've tried Modafinil and got horrible results, it put me to sleep. Yes, I am on antidepressants, which have really helped my mood swings. I find it difficult to believe that anyone who has had CFS for many years can live without them. If I'm typical of most of the people with CFS, the disease takes a toll on your disposition as well as your body.

    Do I have a good CFS doctor? Actually I've tried 8 different doctors and found them to be less than helpful. My shrink has been my best doc. She is the only one who has been somewhat successful. The passage of time has been my other great help. I'm much better today than I was 8 years ago.

    Be well,
  9. lucky

    lucky New Member

    and it is really interesting to read how other people cope and deal with these illnesses, since I have been ill now for soooo long (20 yrs. and longer) as well. And, as sad as it is, most of us are managing but are struggling along every day of the week. You are right, without antidepressants, this is almost impossible to handle and supplements will not compare.
    I have the feeling that the Ritalin is somehow not balanced anymore, since I am so irritable and cannot relax, in other words, the nervous system is on overload which drives me crazy. I am still experimenting with the Olive Leaf Extract and lately with Colostrum and suspect that either one of them may be the culprit. But the OLE is helping me with the allergies a lot which is great.
    I am sticking with my family physician, but have seen a lot of specialists over the years, to rule out other problems. It amazes me that there are so many people who are very ill with CFS/FMS and nobody takes care of them, if in the U.S. or here in Canada. My patience is getting thin and I know what my next goal will be.
    Thank you, Irwin - and take care and get well. Lucky

    P.S. Irwin, I just read your biography, and was surprised that the climate in Arizona does not make you feel a lot better. My doctor always tells me to spend the winter there.[This Message was Edited on 06/03/2003]
  10. Irwin

    Irwin New Member

    There is no place to run or hide if you're a person that is suceptible to allergies. I was told it takes about 2 years to develope new allergies once you move to a new location. That's about how it worked with me. True to form, I was fine for the first 2 years in AZ and then my asthma got worse.

    I'm also amazed at how little doctors know or cater to people with CFS. Even in a big city like Phoenix, there is minimal help. I found the prestiegous Mayo Clinic to be a waste of time.

    I'm sure we all have our own horror stories about what we've gone through in having this illness, so I wouldn't take up your time with mine but, it was bad. I was in total denial about it. I felt no one could be this tired after sleeping 10 hours a night. It definitely gave me a new appreciation of good health. Some pharmacuitical company is going to hit the jack pot when they find a cure.

    Well, guess I'll go out and run a marathon or two now. You're probably about to do the same thing.


  11. lucky

    lucky New Member

    and again, I learned something which makes sense to me in regards to our illness. No matter where I go, I find no relief of my allergy symptoms and have doubted that a different climate would be the answer.
    As you and most others with these illnesses, the help we are getting is NONE and if, the doctors are not committed and above all that interested because we take too much of their time. This I found out is one of the main reasons why GP's hate to treat us because we take too much of their time. I just experienced this again when I interviewed a new doctor in my area. However, I am trying to get more action because CFS is a recognized illness in Ontario.
    I also read on this messsage board some time ago, that even the Mayo Clinic is not the answer in treating people with CFS. Unbelievable, and therefore people still try other forms of what they believe is helping them and mostly these 'alternative' treatments are not beneficial at all, but cost a lot of money.
    Although I am not into many supplements, after reading the experiences with Olive Leaf Extract and taking it for almost 4 weeks, I have the feeling that it helps a lot with the allergies and I am positive that it also helped the walking pneumonia.
    I was too ill years ago to be in denial and since I was very fortunate being diagnosed very early, I could put my foot down with a lot of doctors, since I was diagnosed by at that time the most wellknown internist who was always in the public eye with her many TV interviews etc. (she had the illness herself).
    I am sure your weather is a lot better than the cold and rainy weather we are having at the moment.
    Enjoy the sunshine and be well, Lucky
  12. Irwin

    Irwin New Member

    I used to bitch and moan about how inadequate my doctors were until I came to the realization that they need a reaseacher who has found a cure before they can do anything useful for me. No sense in being angry at them. If a researcher has found the cure, and here in the states, it's got to be FDA approved, they'll use it. If there isn't strong evidence as to what causes the illness, they don't know where to begin. If it isn't listed in their "illness and cure book" their all flying blind. That's my take on it.

    I was hoping the Adderall, Retilin, or Provengil was going to be my temporary salvation but, my particular system just couldn't handle the side effects.

    To tell you the truth, I think we're all in a holding pattern, like a plane over O'Hare airport, trying to land. When a cure is found, en mass will all get our lives back.

    Until then, lets just keep doing our daily 100 junping jacks, 75 one handed push ups, 150 squat jumps, and 200 sit ups.

    Weather in S. AZ is the usual mostly sunshine, anywhere from 100-110 degrees during the day. Send some of that rain our way.

  13. lucky

    lucky New Member

    I do enjoy reading your messages because I happen to share a lot of your ideas and wonder when this big 'question mark' and knowing what causes CFS/FMS is finally solved.
    I also have learned to be above the illness, however, my biggest frustration are the doctors who want no part of this illness. Not that they don't know what it is all about in many cases, but we are just complicating their life with too many problems and just do not want to take the time to listen and help. And you are absolutely right, if it is not in their 'blue book' and out of the ordinary, why bother. I periodically do get angry if I ran into a doctor who has no idea what this illness is all about, and I voice my strong opinion or have in the past which got me probably more respect because I knew what I was talking about, and they had no clue.
    Although I can handle the Ritalin, however, it seems that I am getting very hyper and irritable with it at times, and I just try to reduce the dosage a bit. But without it, I am lost, and I rather have some quality of life if possible as listening to one doctor who makes waves that our brains will be frying with SSRI's and Ritalin. I have been on the SSRI's for so long, that my brain must be really 'overfried'. I am luckily not a type who easily gets frightened and I am doing it my way, the best way to get through the day. Also, I do have a doctor who would not prescribe meds which would harm me.
    I wonder how the 100F heat would agree with me. I have been in Arizona and it was, but that was many years ago.
    Today we had a nice day, but not for long, rain again for tomorrow.
    I wish you a nice and enjoyable weekend, and take care, Lucky
    [This Message was Edited on 06/06/2003]
    [This Message was Edited on 06/06/2003]
  14. Irwin

    Irwin New Member

    Thanks for the compliment about enjoying my responses.

    There are a lot of doctors who want no part of this illness since there are no known causes and no known cures. Why see a doctor if there are no known cures? What is he/she going to do for me? At this point in time it is all guess work.

    In regards to our brains being "overfried" by SSRI's. I wish these docs would just experience our depression for only a long weekend. Then they could realize what it might feel like to endlessly live that way. Would they opt for no medication or, embrace the idea of using SSRI's to feel normal again?

    Most people who come to S. AZ get used to the heat. Those that can afford it, the snowbirds from up north, live 6 months in Canada and 6 months down here. We live here all the time.

  15. lucky

    lucky New Member

    Thanks again for your message. I am probably a little bit more 'pushy' if it comes to doctors and although they still don't know and hardly understand why we are so sick, I feel that by keeping up-to-date with the latest on research etc. myself, I at least can voice my opinion and get treated accordingly. I honestly can say, I would not get the treatments and even support if I probably just would have resigned to the fact that nobody can help me, and I am never going to give up easily.
    I am lucky most of the time that my GP has come a long way to get involved with this illness and that he tries to treat me accordingly with certain meds.
    However, my main problem has been my immune system which got worse over the years, and that's why I am also looking for a different place in the winter than Hilton Head Island. And since everybody always says how good the climate is in Arizona, it gave me some food for thought. But, my doctor always tries go convince me that the climate in San Diego is the best in the U.S. The trouble is, we are away for quite some time, and it is so far away, so is Arizona for that matter.
    I seem to be quite successful with the Olive Leaf Extract, and cannot believe the results, especially the allergies are so much more under control and I can be out in the garden for hours. Hope it continues like this, everything helps.
    I do hope that you have a relatively good doctor who is looking after you because some of our symptoms require treatments and updating of tests.
    What SSRI's are you on? And what else seems to help you?
    Well, nice hearing from you again and best wishes, Lucky

    [This Message was Edited on 06/07/2003]
  16. Irwin

    Irwin New Member

    I agree with you about keeping up to date with the latest research about our disease. That's why I read information weekly about it on the web.

    I agree with your doc that San Diego has the best climate in the U.S. Unfurtunately, we can't afford to live there.

    We enjoyed our visit to Hilton Head during my tennis playing days. I love the smell of the ocean air and watching the waves roll in.

    My immunity also went to pot a few years ago. I don't think you can heal it from your outside enviornment, it has to come from the inside out. I saw a doc who put me on, after giving me blood and urine tests, a whole bunch of vitamins and minerals that helped quite a bit.

    I am taking Welbutrin, Lexapro & Lithium. It took me four years to get a combanation that worked for me without too many side effects. Sorry to say, I have not found anything to help with the bad memory or tiredness. I continually have good days and not so good days.

    I do not have a good doctor for CFS. There just isn't one available in my area. My shrink has done more for me than any regular MD. A few years ago one doc had me buying about $800 a month worth of supplements out of his office that he said would help me. I think, until I caught on, I helped him to pay for a new wing on his house. Needless to say, I did not get any better.

    Keep on trucken.

  17. lucky

    lucky New Member

    My experiences at the beginning of the illness was very similar as yours, but it did not take me long to figure out how some of the alternative doctors tried to sell you stuff which my senses told me would not help. I woke up when I saw an allergist and showed him what a homeopath has treating me with for my allergies. But, I forgot the vial in his office and when I had my next appointment, the doctor told me that he had the fluid in the vial tested and it was all water nothing else. And....from then on, I was cured once and for all.
    I do not suffer from mental depression, however, I am sure that the Celexa is a great PLUS to cope with this illness.
    If you do see a 'shrink', do you suffer from major depression?
    Before the Celexa, I was on Welbrutin, but it did by far not help me as much as with the fatigue etc. than the Celexa does. It took me years to find the right SRRI which agreed with me. As I read there will be new ones out soon which will be even more helpful, i.e. Milnacipran which is in the 3rd stage of testing. Do you take the Lexapro and Welbrutin at the same time, or do you take it at different hours? I am taking Trazadone as well for sleep at night, but take the Celexa in the morning.
    It is unbelievable how most doctors avoid treating us with respect and understanding. Even my own GP told me once that I should be grateful that he is treating me, because all his other doctor friends are not touching people with CFS/FMS, they just take too much of their time. And this is the truth, until the government finally realizes that it is cheaper to train doctors specializing in CFS/FMS than paying disability.
    Well, I got married in La Jolla and have been in CA many times since my sister lived close to L.A. I would love to spend my winters down there, however, we are going for a long time and that's why Hilton Head is so easy to get to for us, however, I have a lot of problems there when the loblollies (southern pines) start blooming in mid-February. We love the place, although it has changed quite a bit from your tennis days, I am sure.
    Well, take care and best wishes, Lucky
    [This Message was Edited on 06/09/2003]
  18. Irwin

    Irwin New Member

    Yes, I am one of the lucky ones who has had the pleasure of major depression since I was a child. Fun, fun, fun. Those were the good old days before most antidepressants. Depression was just something you learned to live with. I used to think of it as some people wear glasses because of bad eyes, some kids had bad hearing, I had bad wiring in my brain which resulted in depression.

    I take the Lexapro, Welbutrin and lithium twice a day.

    I can understand doctors not wanting to treat a disease that doesn't have a cause or known cure. Why waste their time? It's easier to treat someone with a broken leg. What do you treat when someone is very tired all the time? Once you rule out all the usual possibilities with scans, xrays, blood and urine tests and come up with normal results, what next? Tired? Heck, after 40 everybody gets tired. When I was 45 I couldn't do half of the things physically I used to do at 20, and I worked out at a health club regularly. I have no argument with doctors. I do have a strong opinion about those doctors who say they can help me and then have me spend a fortune on "cures" they know to be a lie.

    I hope the new drug you spoke about comes through the pipeline sooner than later. I do not have Fybro. It spoke very little about eliminating the tiredness of CFS. I'll keep my fingers crossed.


    I'm not framiliar with the southern pines. Then again, I havn't spent time on the Southeastern coast.

  19. tulip922s

    tulip922s New Member

    Hi Irwin,

    I have no advice other than what I have read about the level you have achieved. I have had CFS for 2 years and still require a nap everyday as well as 10 hours of sleep at night. My total bed time per day is between 16 - 20 hours. My question to you is how did you get to the point where you are now? I would give anything to be at you activity level.

    Best of luck to you and thank you for your anticipated reply. Tulip
  20. Irwin

    Irwin New Member

    I've experience your incredible tiredness during the first 3 years of CFS.

    I hate to tell you this but, in all honesty, I just don't know. I've read articles where some people were able to resume going back to their normal lives after 4 or 5 years. I can't remember reading where people resumed their normal living after two years. Maybe you'll be one of the lucky ones. I've read elsewhere CFS patients experiencing the same awful symptoms that began their illness even 10 years later. It's a mystery.

    For me, I've seen 8 doctors and I don't think any of them helped me. What has helped me, in my opinion, is the passage of time.

    Everyone is different.

    Keep up your hope. There are finally researchers working to cure CFS as I'm writing this response. Eight years ago it wasn't even recognized by the federal government as a legitamate illness.

    All my best.