Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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A severe relapse with leg weakness, WTF?

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by Robin, Nov 9, 2009.

  1. Robin

    Robin Guest

    Hi! I've had textbook CFS for many years, had been gradually improving over time from a more severe case to a moderate case.

    From Fall 2007 to Spring 2009, my family underwent an ongoing crisis involving the fatal illness and death of another family member. There was a lot of physical work to do, which I did gladly until last winter when I started to feel strain. There was also a lot of emotional stress from both coping with the illness and dealing with caretaking issues. In January I got a cold, which happens a couple of times a year, no big deal. Well, as soon as I got over that, I got another one, and then bronchitis, and then another bug, then a sinus infection etc. until finally in June I got a full on three week flu-like hell virus.

    Finally at the end of July my health gave in. The family member had passed away, the physical exertion was over, the stress had subsided, a couple months passed but my health just vanished. At first it felt like a relapse but then every week or so it would get worse, until late August when I had a strange, near passing out episode that scared the sh&t out of me. I lost my appetite, lost 5 pounds in a week and a half, had severe bowel changes, fevers, and got this horrible, unrelenting weakness. I became bedridden and started sleeping most of the day. These were new symptoms to me, and I felt even worse than had I had years ago at onset.

    Since then most of the symptoms have improved, my appetite is not great but I can keep weight on, I sleep a lot less, no fevers, etc. The thing that hasn't changed is the weakness. Most days I'm in bed except for eating, a little time outside, some TV, but that's it. I can't go anywhere, I need help with laundry and cooking, I haven't taken a shower since July. I borrowed someone's laptop and stay in bed and read news stories or listen to audio books.

    There's a general weakness and a specific weakness in my legs -- mostly behind my knees and up my thighs. It's painful (I can squeeze my leg wear it hurts and make it hurt more), burning, and does not improve with rest. Some days are better than others.

    My Dr. is a nice person, diagnosed me with CFS all those years ago, but very conventional and not knowledgable about treatment. I told him what was going on and he took 8 vials of blood that day, and another four vials the next time, testing me for everything he could think of (lupus, pernicious anemia, muscle wasting disease, other autoimmune, adrenal insufficiency, more stuff I can't remember). Everything was normal except for a mild vitamin D insufficiency (not surprising as I've been in bed most of the summer instead of outside in the garden where I like to be) and borderline iron anemia. I've been taking supplements for those for a couple of months to no avail.

    I traveled to see a CFS doctor about five years ago, and she checked my blood volume (low) and gave me a brain SPECT (diffuse abnormal perfusion in the temporal and occipital lobe -- I haven't had a disability review since i submitted that, ha!), and told me to ask my doctor for saline IVs. (It didn't help).

    I'm sort of at a loss. My health was to the point where I was hoping to start working part time in a couple of years if it kept improving, my boyfriend and I were discussing engagement. I had adopted a large dog and walked him or exercised him outside every day. Now I'm wondering if I should sell my car and find another home for the dog. I'm not physically (or financially) able to go to another CFS doctor at this point.

    I've had a lot of bizarre symptoms come and go but the leg weakness takes the cake. Something really bad happened to me this summer and I don't even know if it's CFS -- I just feel so weird. Has anyone had this or anything like it?
  2. Lily

    Lily *Believe*

    I can relate to some of what you are saying.....

    but I always worry that once we are labled with CFS, then docs attribute everything to that and don't look much further. It seems reasonable that you would have a ROYAL crash after all you've been through with the stress of the family death, then obvious illness, but the leg weakness (not that it's unheard of in cfs), could also be something else I think warrants further referral to perhaps a neurologist. It's not like we don't get other auto-immune diseases just because we already have CFS.....and I wonder about MS. MS symptoms can really be all over the place like CFS, but neurologists kind of like to put them in a smaller box with more specifics - you speak of specific weakness and that can be tested and an MRI of the spine is a good place to start. Just a thought.

    I was diagnosed with MS about 5 months after being diagnosed with FM (which I'd had about 9 months prior to being diagnosed). Then after being diagnosed with MS, symptoms continued to progress and not in the usual ways of MS.....I eventually became a classic CFS with no progression really of MS, although there are 2 brain lesions, the frist of which came with symptoms that prompted the diagnosis.......a second lesion appeared 4 years later without symptoms. I am pretty much homebound, but not with MS - with CFS and all of this occurred since 2002. I don't mention CFS - so everyone attributes all my symptoms to MS, but continue to tell me that my symptoms are not typical MS......ha, so fun! I believe your doctor should be referring you for further workup rather than attributing everything to CFS. All the bloodwork in the world will not diagnose MS - only an MRI, lumbar puncture and visually evoked potentials - and even then it may only be a guess based on all three tests.
    Keep us informed of how you are doing. Hope you are feeling better soon. Best Regards....
    PS, I am an old registered nurse with lots of clinical experience and feel strongly that you deserve further evaluation.
  3. susan

    susan Senior Member

    Gold Coast Australia
    weak adrenals????

    I can relate to you entirely. That is how I operate.....all related to stresss even tho it is over and gone. Read up on Hans Selye, he discovered the stress stages we can go thru before we collapse.

    I think you have adrenal insufficiency...comes with CFS. The smallest things take me back to bed and the first thing that goes is my legs....weak and painful in the calves and thighs. Nothing helped me till I got help from Clymer Healing in the US, who are wonderful and do email consultations or phone.....Andrew Neville.... anon profit centre treating CFS for decades.

    They helped me a lot as I was imprisoned at home and I live in Australia. Gave me licorice root for low Bp and Isocort for the is from the adrenal cortex of an animal and works to regenerate the adrenal gland as they can get depleted thru stress. THIS TAKES TIME and you have to be patient.

    The raw adrenal glandulars that they use work like Hydrocortisone which is great for getting you up again. I cant take it unfortunately....burns my stomach. My Dr who has CFS takes 20 mg of Hydrocort every day or she said she could not work. However Drs are so scared to give it to you and they should not be....Read Safe uses of Cortisol by Dr.William Jeffers.

    Many of us have to take is not the bad guy like prednisone. Ordinary family DRs dont know much to help you....they just dont know about this. Saliva testing is the best way of helping measure the true levels of cortisol and treatment can go from there. Clymer can organise that for you so you dont have to leave your bed.Your thyroid might need looking at too altho blood tests are not very accurate in that regard.... Google Mary Shalom. or a site called Stop the Madness.

    Hope this might help you.


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