Who can honestly say their CFS has improved

Discussion in 'Fibromyalgia Main Forum' started by sunflowergirl, Mar 6, 2006.

  1. sunflowergirl

    sunflowergirl Well-Known Member

    since beginning a new regime of foods/pills/exercise/etc.

    I'm going thru a really bad fatigue period and can't seem to get over it. I think I have controlled the pain somewhat with magnesium.

    How about all of you who are going to those special clinics for treating CFS? My family keeps pushing me to find someone to help but so far I have no one.
  2. LISALOO

    LISALOO New Member

    I know that only a small amount of people go into remission. But I also say that people who go into remission are out enjoying life, no longer on message boards.

    I go to FFC since August, can't say I've gotten any better. I've had more energy the last month, but I contribute it to accupuncture.
  3. Manwithfibro

    Manwithfibro New Member

    I guess my fatigue is a little better on DHEA and Guai but overall the pain level is the same if not worse. It appears my joints are starting to be affected by this now so the pain is worse than it was 5-10 years ago.

    Sorry TIM
  4. KelB

    KelB New Member

    I've had no miracle cure, but I'm loads better than I was this time last year.

    I had a course at a hospital Chronic Fatigue Unit which covered CBT, positive thinking, coping strategies, pacing everyday activities, assertiveness, sleep hygiene and general awareness of how my activities were affecting the illness.

    By following the guidelines I was given, I've pretty much done away with unexplained crashes. I now know what causes them for me (it's different for everyone) and I can either avoid that activity, do it differently to lessen its impact or just get on with it and plan for the consequences.

    I haven't had any meds but I am eating marginally better than I was (cutting down salt, sugar and processed foods). The clinic said to only exercise within our limits, so I haven't done more than climbing a couple of extra flights of stairs occasionally.

    I was lucky to have a "sensible" NHS clinic near me in the NHS. Most in the UK are dogmatic about CFS being a psychological condition, whereas my clinic was at pains to emphasise the potential (and currently unknown) physical causes.

    If you can find the right clinic, I'd say to give it a shot. However, make sure in advance that it has the right approach for you and don't be pressured into seeing people who sound like they're on the wrong track.

    I should add that I haven't had any pain to cope with, beyond what I was experiencing before I became ill. My main symptoms have been the fog and fatigue.[This Message was Edited on 03/06/2006]
  5. Rosiebud

    Rosiebud New Member

    where I'm not in bed most of the time, where I can get out a few times a week, not to do much but nevertheless an improvement on where I am now.

    I'm expecting to move on from this relapse real soon. Wishful thinking perhaps.

    love
    Rosie
  6. sunflowergirl

    sunflowergirl Well-Known Member

    I know I have to avoid stress, which seems to do a number on me. I'm also finding that I have a tendency to hyperventilate when under stress or excitement, which changes my breathing pattern and makes me lightheaded. I'm also wondering if this changes some chemicals in us that then contributes to the fatigue. Any thought?

    That is definitely something I need to work on. I wish good health for all of us, and a better understanding of how to cope with this state of health.....that never seems to leave us.
  7. spiritsky

    spiritsky Member

    I've improved greatly in the last 3 months. Going to an FFC and mostly as a result of hormone replacement and dealing with poor sleep. I'm still working on getting the perfect nights sleep but it's much improved and I'm able to go to work now. Working part time, but if I had to, I could work full time. My only real problem that remains is getting the sleep, but it's coming, and I feel with this kind of progress I'll be back 100% in the next few months.
  8. Mikie

    Mikie Moderator

    My progress has been very slow and I have setbacks from time to time. My treatment has paralleled what the FFC's are doing, including antibiotics, antivirals, Heparin, and transfer factors. If one opts out of one of these clinics, it takes a lot of research and trial and error to heal oneself. I was sick a long time and I figure it will take some time to feel well most of the time. My progress has been so slow that I have to look back several years to see how far I've come. I'm planning to try to work part time soon.

    Love, Mikie
  9. 1sweetie

    1sweetie New Member

    I am so far from being able to function in a normal fashion. After 3 years, I finally sleep at night(most of the time). But I take several different medications to be able to do that. I still wake unrefreshed. On the disability scale I am between 20 to 30. I've learned different skills to help cope(like detox baths & supplements) but my life is very much dependent on others. I have found that the symptoms cycle. I had a sore throat &difficulty swallowing for 2 years & now that is better.My lymph nodes do not swell as often but it seems as if there is another symptom to take it's place. My headaches are better but the fatigue & the cognitive issues are unrelenting. I am going to take an online course to teach me to learn to live within my energy envelope. I rest & crash. I long to be normal but it seems that this is going to be my normal & I must learn to deal with it. If I do that I hope to improve and I am beginning to understand that it will be slowly. I've never liked slowly but my way has not worked great so far. Multitasking is history. Now I wish I could just do one thing at a time.
  10. jane32

    jane32 New Member

    not to the point where I can plan or work for someone else but I do feel better. I was at 35% or so in the summer and now I average around 50%.

    I am getting treated at the FFC. The biggest thing for me was finally getting a diagnosis!

    I plan on trying some water therapy next month plus accupuncture and some other things so hoepfully that will help.

    My body acts like it is fighting and infection or virus. I suffer from fatigue and fevers.
  11. sunflowergirl

    sunflowergirl Well-Known Member

    I also know someone locally who went to Dr. St.Amand and was on it for almost 6 months but did really improve from being able to get off the couch all day to going back to college.

    Do you have to see a doctor to take the guai or can you do it on your own? Do you personally still take the guai? She told me that within a week there was like crystals in her urine. Is that what happens?
  12. skierchik

    skierchik New Member

    Love that name by the way. Just 3 years ago I had a very bad setback from having 4 surgeries in 4 months for a ski accident.

    I've been fighting CFS for many, many years. It got really bad 9 years ago when I had a "suit" job and was under a great deal of pressure. My husband and I moved away and I quit my career. We had to simplify quite a bit(much smaller home, one car only, etc.) I was definitely diagnosed with CFS and so I wanted to reduce stress (juvenile diabetic & Hashi's too). I pretty much healed myself by completely changing my diet and taking supplements that support CFS. I was pretty sure I had gut problems and yeast, so I fixed those too. I read everything I could get my hands on. Spent alot of time at Barnes and Nobles and my library.

    It took only about one and a half years back then to get my health in decent shape. Then I had two car wrecks (in a month) which meant whiplash and closed head injury. Those were in 2001 and I still get acupuncture for those wrecks. I, once again started to have severe fatigue.

    I did more detoxing very slowly (used Metagenics Ultra Clear Plus)and raw juices, etc. Was skiing again and feeling good....then in Dec. of 2003 I had a really bad ski accident where I broke my leg in multiple places.

    To make a very, very long story short, the doc in Steamboat screwed up and it had to be rebroken 3 1/2 months later, so I ended up having 4 surgeries in 4 months and although they all thought it was a successful set of surgeries(took pics and all to use in class).....I was left extremely ill.

    I couldn't do anything...not walk the dog, couldn't work, couldn't sleep, couldn't function as a wife, a friend or as a human being. That's when I started to get FM at a severe level. On top of it, my diabetes and Hashi's was uncontrolleable. Most days I never got up. After about a year, I decided to "help myself" and started to read and re-read books. I started detoxing again, eating better, using supplements and started to feel better. I always exercised alot, but all I could do was walk some.

    In 2005, I continued to make good recovery, but in wintertime, I would fall back considerably. There would be bouts of really BAD sore throats, fevers, aches & pains, swollen glands, bronchitis, great fatigue over and over again. I would catch everything and pretty much would be sick all winter. And I guess, thinking back, the winters were always challenging, but never that bad until the last couple of winters.

    For my car wrecks, I had been seeing a chinese acupuncturist and she's helped me alot with my immune system!! She's the best! But it wasn't until last summer when I started detoxing again, that I started to get stronger. This winter has been a breeze compared to the last several winters. I've had one bad bout of the influenza.

    About a month ago, I started with a new doctor and he tested me for mercury and pesticides. He and his scientist friend are doing some pretty cutting edge stuff. And they are going around teaching other docs how to read labs and treat toxins. In a month's time, I am feeling soooo much better. I rode my bike both Sat. and Sunday and yet a short one again today to the store. I'm still foggy and forgetful, but doing better and feeling much less fatigue. I only have FM if I don't take enough Magnesium. I've been able to ski alot too.

    You can heal from this DD!! It just takes alot of work finding the right combo of modalities and supplements. I think I could have gotten here w/o my doctor; it just would have taken me much longer. For me, detoxing and healing what was weak was the key for me. (Got to heal the gut)

    Anyway, don't lose faith and don't give up hope. Your cure is out there, you just have to keep at it.

    You can look up my posts on detox bathes, rebuilding intestinal mucosa and the honey-glutathione protocol also for detoxing (mercury & pesticides).

    Good luck to you!!

    skierchik
  13. xchocoholic

    xchocoholic New Member

    I can honestly say I have seen a slow, but steady improvement over the last couple of years.

    I posted a thread for other long time cfids sufferers to ask what their experiences were too.

    I'm chalking it up to finally getting enough rest. I knew all along that I felt better if I had a good nites sleep and paced myself, but I was too busy raising a child to get the rest I needed.

    At this point, I rest 16-20 hrs a day, but at least I am not always in a fog or exhausted. I'm hoping this new health kick I am on will help too.

    Good luck .. marcia
  14. skierchik

    skierchik New Member

    Very important topic.

  15. jane32

    jane32 New Member

    do you take it during the day or at night for pain?
  16. skierchik

    skierchik New Member


    Not sure who you were addressing, but I'll share with you what I take. My doc has me take Chelated Magnesium....I like Solgar brand. He has me take it throughout the day. So, in the morning when I take my Honey-Glutathione stuff, I will take 200mg of magnesium along with other supplements. At lunch which is usually around 2:00, I take 200mg more. Then in the evening, I will take about 900mg more.

    Jane, it sounds like (I've read your posts) you and I have alot of the same symptoms. I had and still get alot of fevers. I used to get sore throats non-stop, but not anymore. I don't get bronchitis anymore because of the supplements I'll take if I start getting the influenza.
    Didn't you say that you were exposed to pesticides too and have silver fillings??? Hmmmmm.

    Hugs,

    skierchik
  17. GwenGlo

    GwenGlo New Member

    ...there was a young lady who accompanied her husband as he was getting an IV.

    I was also getting an IV and we started chatting.

    She said she had been coming to FFC since May 2005 and could honestly say she was 100% better.

    It was really encouraging to hear that.

    Gwen
  18. Lolalee

    Lolalee New Member

    I can honestly say that I am in my worst flare ever. I've had CFIDS for 8 years. I've been housebound for weeks. Last year I went on a diet to rid my body of Candidiasis under the supervision of a Nutritionist who is also a Internist. I felt a little better for about a month.

    Then I had several life events that caused a lot of stress and WHAM!! I have not been able to recover.

    What I feel mostly is the unrelenting fatigue, awful malaise and of course, the intense pain. The best way for me to manage at this time is to rest and avoid sugar, processed foods and STRESS.

    Lolalee
  19. Jen102

    Jen102 New Member

    I am still very very ill, but much improved. Last summer I had accepted that I probably wouldn't make it to the end of the year. I was started on glutathione and magnesium IV's and have improved considerably. These have been the things that have helped the most of anything I have tried. Blessings to you. Jen102
  20. Juloo

    Juloo Member

    But I've been working at this on and off for about eight years, and I have tried a lot of different things. Some have helped long-term, some have helped short-term, some prepared me for something else that helped more, some led me to new and different therapies, and some plain didn't work at all.

    I started going to the Atlanta FFC in fall 2005. They were able to confirm some things that I already had a handle on (progesterone, DHEA, pregnenolone, adrenal deficiencies, and chronic EBV) and continue or change my treatments, test me for things that it turns out I need treatment for (Lyme, c.pneumoniae) and get me started on several things that have fallen through the cracks (testosterone deficiency, nystatin for chronic yeast, liver cleanse, thyroid, etc.). And, of course, I continue to need help with sleep. I know there's more...I'm doing this *without* getting up to look in my big basket'o'supplements-and-meds. I'm going to keep going, as I've tried so much else. I've lost over 25 lbs., too!

    I have good days and not-so-good, but this past week has seen several good-ish days, including yesterday and today, and for that, I'm very happy!