Having Intense Symptoms-Please Advise

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I've had .CFS/ME for several years. (I was diagnosed after about 3 months.) I had a relapse last September, which brought new symptoms: tingling in my feet and calves. As the months have gone by, these symptoms worsened, to tingling, some numbness, heaviness, occasional "shooting" pains, like electrical shocks, in my calves. More recently, these symptoms have gotten even worse, going into my legs, my hands, and arms. Two weeks ago, I developed real extreme post-exertional fatigue. I can barely talk on the phone without getting extremely fatigued. Then yesterday, I went to the eye doctor. Early this morning, I started getting tingling in my chest and face! I'm in the U.S., and our healthcare system is crap. The doctor I've been seeing for my CFS ordered a nerve conduction test that came back negative. He seems to be clueless on how to proceed. I've found a new doctor who only sees CFS patients and is hightly recommended. He has a 6-month wait (that tells you how many people suffer from this illness), and I'm scheduled to see him in late October. But in the meantime, because of the way these symptoms are progressing, I'm thinking I better see another doctor. It's very hard to find doctors who know what to do about CFS, but I could probably find someone who's had some experience with the illness. OR, should I see a neurologist for these symptoms? It would be very difficult to find a neurologist who's familiar with CFS. My fear in seeing a neurologist is that without a perspective on CFS, he might prescribe or do something very inappropriate vis-a-vis the CFS, and I could end up worse off. If you've managed to read to the end of this long post, I'd greatly appreciate any advice. I feel so alone in all this.

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  • Posted

    Hi Jackie , my husband had a relapse like you in September and in January we saw a CFS/m.e specialist .. She was excellent . But in treating him she said . To be aware that you can get other illnesses on top of CFS . And if u get new  symptoms don't just think CFS go to your gp and get tested for obvious illnesses as if you didn't have CFS. Well 6 weeks ago my husband got diagnosed with diabeties he was very ill with it and ignored his worsening fatigue thinking it was CFS when it was fatigue from high sugar levels on top of CFS. Then he just had his first home visit from an occupational therapist from the CFS clinic. She said CFS and diabeties overlap a lot. People with CFS can't exercise and therefore can become diabetic earlier in life than they would of. But the good thing is she says following her theraphy he should get back 70 percent of his energy that he used to have.. Not bad. And the treatment for diabeties is also similar to the treatment for CFS . Gi diet , keeping sugar levels balanced , no caffeine and regular sensible exercise (depends on level of CFS just getting up and down from your arm chair several times counts for some... Anyway I think imagine you don't have CFS and go to gp with new symptoms and see what he goes for.. Get checked for diabeties it can cause tingling in hands and feet , extreme fatigue and drinking more and going to loo more ,blurred vision cold hands and feet ... Hope that helps 
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    • Posted

      Thanks a lot for your response, Sally. Since this relapse, I've had all sorts of tests done--nerve conduction in addition to bloodwork. My first thought regarding the tingling was diabetes, so I got tested for that. My blood sugar levels are normal. In all the tests my doctor did, everything came back normal. You're right, it's important to make sure nothing else is going on.
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  • Posted

    Ive had all the symptoms you mention.. the nerve issues can be quite scary.. mine got so bad on my face hands feet and all over my body that i couldnt wear clthes without being in constant pain. Also had numbness in all the same areas and random other bits like lips and anus.. It tends to get worse before it gets better.. mine was really bad for about 8 months but now is alot better.. i went on ametryptiline which was a huge help.. settled everything down to a apoint where i can wear clothes and function again. The more you worry about it, the worse you will make all the symptoms.  Doctors at the end of the day can do nothing for us.... Ive had 4 bad relapses in 20 years the worse being last year which had me bed ridden for 3 months.. It takes time.. lots of rest and just comming to terms with the fact it does at times get bad... really bad... As for finding a good doctor.. that does help but at the end of the day there is little they can do for you.. as long as you have ruled out things by tests and all comes back clear.. im afarid its just get on with it as best as you can sad
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    • Posted

      I really appreciate your responses to my posts. It seems that we are in very similar circumstances. I'm working on my attitude--the "coming to terms" with the illness that you mention. I tend to have a knee-jerk response of fear when I get a new symptom. As I've said before here, CFS/ME is the gift that keeps on giving...
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    • Posted

      I know just how desperate you feel... i was the same last year... seriously i thought my life was over and couldnt see any light at the end of the tunnel.. just trying to get your head around it at times is a knighmare , when everyday seems to bring another wierd sensation.. another stabbing pain.. a body that does not respond normally to anything anymore.  The look on my doctors face when he told me he couldnt do anything else to help me... i kind of felt more sorry for him than i did for myself at that point smile  Loss of oneself i found was the hardest thing to come to terms with.  But if you had told me 12months ago that i would be getting on with life, playing with my grandson , doing my gardening.. walking into town to do my shopping... seriouly i would have laughed so hard as i couldnt in a million years believe i would ever get there. But i did... and i would say im much stronger for it all.  Hang in there... it will get better. smile
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  • Posted

    Hi Jackie, really pleased to hear about your recovery - did you do anything specific ie diet wise/exercise/healing before you recovered? x
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  • Posted

    Jackie, my apologies, I sent a reply to you which I had intended to go to liitleme69-doh! brain fog!. Hope things ease off for you, its a horrible illness hey xx
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