how long were you all bedridden with cfs??

Discussion in 'Fibromyalgia Main Forum' started by healthywannabe, Apr 16, 2003.

  1. healthywannabe

    healthywannabe New Member

    Hello. They "Think" that I have cfs. I have been bedridden for almost three months and going down hill. is this normal? All they have done is basic tests. like cbc and thyroid and some others. are there any diseases that mimmik cfs that dont show on regular blood work? I have gone to a few doctors but i dont know if ive gone to the right ones.. what kind of doc. should i go to? i can hardly get up without feeling awful. is this normal? if not, what else could this be????? thanks....Zoe
    [This Message was Edited on 04/16/2003]
    [This Message was Edited on 04/16/2003]
  2. layinglow

    layinglow New Member

    I was bedridden at the initial onset of CFS and FMS for over 6 months, until I finally found a Specialist in CFS/FM, and we began treatment of the many downed systems....I use a Doctor of Osteopathy, who treats with prescription meds, vitamins, supps, and alternative treatments. He keeps atop the latest CFS and FM research, and has a large enough client base with these disorders that he has gained a vast amount of experience in treatment options.

    What you are experiencing is very normal---
    I felt the same way, but with treatment have relieved so many of the symptoms, and my quality of life has greatly improved. Have you looked at the Good Doctors List at this site? Go to the purple tab at the top of this page, and click on DR. REFERRAL....on the next page click on "Co Cures Good Dr. List".....and look for your state.
    Be prepared to drive a distance, it is a days drive for me to see my doc, and many others drive some distance, too.

    Best wishes, on your feeling better,
    LL
  3. intuit

    intuit New Member

    healthywannabe,
    I was bedridden for more than a year beginning in 1992. Antidepressants have made most of the difference in my energy level and cognition over the years.

    Try to find a doctor who specializes in CFS or has many patients with CFS. Call around and see if anyone does so where you live. I have primarily used doctors of internal medicine (M.D.'s) and a doctor of osteopathic medicine. I went to some endocrinologists as well, but they were so specialized that they seemed to have professional expertise in one or two parts of the endocrine system, and that was it. They weren't much use to me because the long-term effects of CFS and Fibromyalgia on the endocrine system seem to be very complex. It would be nice to have an endocrinologist who is very familiar with CFS/FM, however.

    Also, you may want to get tested for a virus such as the Epstein-Barr Virus (EBV). My CFS/FM started with a tiny bumper-bender (hit from behind), and I later tested positive for EBV. There are also many other reasons and conditions with which CFS/FM starts, depending on the person, but EBV is fairly common (and so is whiplash). EBV can cause mononucleosis, which does mimic CFS. If you are very, very, very, VERY lucky, that's all it is and you will get well within 6 months or so.

    Good luck to you!!!
  4. Shazzy

    Shazzy New Member

    Hi Zoe,

    Your not alone. I have been bed ridden for 6 months now. On top of fatigue i have anxiety and depression. I have another 6 months wait until i see a CFS specialist. Its hell and yes you do feel like your going down. If you want to email me and if your from uk we can chat on phone.

    shazzy
    [This Message was Edited on 04/18/2003]
  5. praisingHim

    praisingHim New Member

    You sound just like me! Last July I woke up REALLY sick. I could not get out of bed and just felt so sick and exhausted. Other symptoms that developed quickly were blurred vision (which I think come from being so tired), nausea, no appetite, etc. I went from doctor and doctor and they kept saying it may be post partum depression because I had a 5 month old, but I knew I was not depressed. After being bedridden for 3 months and losing 20 pounds, they put me in the hospital. I was testing for everything. They did CBC, Chem profiles (which tests liver and kidney functions), urinalysis, stool samples, etc. I had a MRI,CT scans, etc. After all test came back normal, I was still sick with no answers. Talk about scary and frustating!! I finally asked for an antibiotic and 4 days later and was some better (I was no longer bedridden but didn't feel well). Now it is going on 9 months and I have changed to an integrative physician. He has changed my thyroid medication and put me on some supplements. I am on CoEnzyme Q 10, NADH, calcium and magnesium, B vitamins and the End Fatigue Drink. He tested me for mycoplasma and it was positive, so I have been on antibiotics for about a month (he thinks this is why I got some better on antibiotics last year). He also checked my DHEA levels and they were that of a 50 year old, so he has started me on DHEA supplements (that you get at a health food store). My suggestion is get a very good checkup. After that have checked all posibilities, then start doing research on CFS. Get tested for mycoplamsa and the other things people refer to on this site. See a doctor who has treated CFS. Read the book From Fantigued to Fantastic by Jacob Teitlebaum (not sure if last name is spelled correctly). You can find it on Amazon's website. Good luck. If you have any questions, post a new thread to me so I will see it. Oh, don't forget to say your prayers. God is giving me the faith that I will get better. My energy has gotten better on some days, but I still have bouts of nausea and this sick feeling. Have a blessed day and keep the faith. I know how frustrated you must be. Also, if your tests keep coming up fine, don't get stuck on meeting the stick criteria of CFS. I do not meet all the criteria.