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Tingling & Numbness

Posted , 11 users are following.

Db86
Db86

Hi everyone.

I've just joined - apologies if thi shas been discussed elsewhere but I hope I can get some information from other sufferers.

I was told I had post viral fatigue in 1997 - in 2004 I was diagosed with Chronic Fatigue Syndrome. I had to give up on my career but made a new one, working part-time hours. I've been lucky enough to scrape by.

ThisJanuary however, I started to get symptos new to me. Walking and veering to the one side, tingling in my hands and feet and numbness too. Also a terrible stiffness that affects my walking and my ability to pick things up. The worst new thing is terrible problems swallowing.

I had to give up work completely - I just couldn't do it and I am back to sleeping 14 hours a day.

My GP sent me to a neurologist. After a 13 week wait in pain and discomfort I finally saw neuro 2 days ago.

Her attitude really pissed off. Chronic Fatigue was talked about the whole time. I couldnt feel pin pricks on my face, feet or hand. I had a positive reaction to the Babinski sign (I know about it as I have a friend who is a GP). She told me, it's not MS, it's CFS.

BUT, I am being sent for an MRI, to see a speech therapist for the swallowing problems, a physiotherapist for the stiff legs, a psychologist for my memory problems and I am being put on pregabalin painkillers. (The NHS is great once you are in the system).

What I would like to ask, after years of CFS, I didn't think numbness and tingling were part of CFS symptoms. 

How many of you have these types of symptoms?

Apologies for the long first post!

David B

0 likes, 44 replies

44 Replies

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  • jackie00198
    jackie00198 Db86

    Posted

    David B.

    I had almost the same exact experience as you. i'd had CFS for several years, when I started having numbness and tingling in my extremities. I also have a feeling of heaviness in my legs. After getting informed, and in large part thanks to this forum, I realize that these are symptoms of my CFS. By the way, I did have a nerve conduction test that came back negative. Apparently, nerve issues, or nerve "pain," in not that uncommon with CFS. Your NHS brochure mentions "nerve pain" as being a symptom of CFS. I'm waiting to see a CFS specialist. I decided not to go to a neurologist, because I feel that if any specialist isn't familiar with CFS, they're going to go off in a lot of inappropriate directions. For instance, the neurologist who did my nerve conduction test was focused on back problems as the cause of my symptoms, and wanted to do further testing. NO! I've had back problems, and know the difference between those symptoms and my new symptoms. I'm not sure about the symptom you have of difficulty in swallowing. When I did a Google search, I did get some "hits" as this being a possible problem with CFS.

    • Db86
      Db86 jackie00198

      Posted

      Thanks Jacki - in a weird way it is good to know that others have these problems, if you know what I mean. It just feels so real and it feels as if we are being dicounted sometimes by the term CFS
    • jackie00198
      jackie00198 Db86

      Posted

      David B.: I think a lot of us hate the term Chronic Fatigue Syndrome (CFS). It makes us sound like we're lying on a lounge eating bonbons (to me, at least). That's why the CFIDS Association in the U.S. now calls it CFS/ME (myalgic encephalomyelitis). In the U.S., in the past, it was called "the yuppie flue," which is really demeaning. From the many posts I've read over the years--yes, CFS is a diagnosis of exclusion. But, it seems to be a theme and variations. I see the same symptoms experienced and written about, over and over. One person, of course, doesn't have all the symptoms, but a subset. I agree with a theory of this illness that I read about once. That it attacks the brain and central nervous system, and the presenting symptoms depend on what part of the brain it attacks. Please keep posting. I'm very interested in what your doctors prescribe for the tingling and numbness. Especially since I don't get to see my doctor until late October.
    • Db86
      Db86 jackie00198

      Posted

      Jackie, the first thing I have been prescribed is Pregabalin. I was put on Gabapenting 4 years ago and I had to come off ot because it affected my memory so badly. I am willing to try this though as the pain in my legs is just too much at the moment.
    • bronwyn97278
      bronwyn97278 jackie00198

      Posted

      Thankyou:  you are just confirming an isue that I was starting to become concerned about.  In the past few months, I have been finding that after lying down for a rest/sleep, My lower limbs start to become numb, with tingling sensations. It was confusing me, as having spent 30 years being a Registered Nurse, and not understanding why these symptoms were only appearing when lying down, and only in muscles, I knew it was not related to any other medical condition, However, I had not read re same symptoms in any other site on CFS/ME: now I am reassured;  what I do to stop the numbness/tingling (enabling me to rest/sleep) is wear some TubyGrip on legs and for some reason this assissts the muscles, and assists my sleep/rest.  (I also realize now that it is not just Restless Legs Syndrome, as some people thinl)..  Thankyou. Also in replying too Jacki...I also feel/agree that the cause could be related to the Herpes (chicken pox virus), as I had a very severe case of same in my teens, and have been exposed to the virus MANY times in my life, and do get Shingles when stressed...all related to same virus..and as they are feeling with research in the U.S (so I have read)...that they think the brain matter may being affected by this virus, causing CFS or ME, as name suggests..
  • lisa35180
    lisa35180 Db86

    Posted

    Hi David ,I've had CFS/  me and myasthenia gravis for almost 8 years,I also had to give up work and re trained ,I started doing 1 morning a week that's all I can manage at the moment sad .Ive also started with these new symptoms...numbness,tingling,burning sensations,my memory is really poor ,balance is terrible,I've been back to the neurologist  and waiting for results of MRI .

    i was convinced I had MS but reading this forum it seems that just as you think you know illness it throws a whole few more problems in for good measure! As if were not putting up with enough!! I too sleep for days n days....I think it's a good idea to get checked out,but there seems to be a few people on here the same as us...good luck x

    • Db86
      Db86 lisa35180

      Posted

      Hi Lisa, sorry to hear that you are so bad. It is good for me to hear that tingling and numbness is a CFS symptom though - I did not know that.

      I guess I just have to keep trying to get on with it!

  • jackie00198
    jackie00198 Db86

    Posted

    Whoops, David! In my last post, make that "the Yuppie flu," not flue! Just another symptom of my malfunctioning brain.
    • Db86
      Db86 jackie00198

      Posted

      Don't worry - Have you seen my typo's and bad spellings? I am so fed - up with my fingers not working that I don't even bother correcting any more!
  • Stolz
    Stolz Db86

    Edited

    Hi David,

    I often wake up with numb hands, and have problems with no feeling in parts of my hands and feet when I have my "cold-to-my-bones" days.  I saw an (in my opinion lazy and biased) Endocrinologist who passed this off as a mental problem!

    Interested to hear about your memory problems. I have always been sharp as a tack with a memory for tiny details and even things from years ago in my childhood.  In the past few months, I am experiencing constant and annoying lapses of memory, in particular going to the other end of the house and forgetting what I went there to do; remembering people's names; and I have noticed that mental arithmetic has suddenly become very difficult for me.

    • jackie00198
      jackie00198 Stolz

      Posted

      Well, that endocrinologist is the one with mental problems, mainly, being closed minded. Long-term and short-term memory are handled by different parts of the brain, I think. I have very good long-term memory, but my short-term memory is pretty bad, which is very common if you have CFS/ME. I was a technical editor before onset of this illness. Now, I get words and letters switched around, have trouble remembering peole's names and even, somtimes, other words. Like the other morning, I couldn't immediately recall "kiwi" fruit! Very scary for a person who made her living through words. 
    • Stolz
      Stolz jackie00198

      Posted

      Yes!  Totally know what you mean!  I couldn't remember the word "definition" when I was studying with some friends, and have trouble recalling famous celebrity names. My part-time typing jobs take me forever because I seem to have trouble touch typing, after doing it for over 20 years.  I wasn't always like this, I know something has changed and it is scary :o(
    • Db86
      Db86 Stolz

      Posted

      Hi Stolz

      The memory thing really upsets me. I say that I used to be sharp as a tac and now I am sharp is a tennis ball !

      If I am watching a quiz, I know that I know the answer but it takes a while for the answer to form in my mind. It is almost as if I have to rummage around in my brain for it.

      THer eis no way I could do the job I use to do. It upsets me. :-(  I also worry that it will continue to get worse.

    • Stolz
      Stolz Db86

      Posted

      Me too.  I think the reason sufferers of CFS and hypothyroidism and the like, seem to have a huge long list of symptoms is simply because we have small annoying changes in life and odd symptoms that seem unrelated to anything else happening over a period of time.  Nothing we would go to the doctor about for that one thing.  So by the time we feel really terrible and seek help, it's a myriad of things.  It is just a general feeling of our body not working to its full potential and not having sufficient energy to function.  When you look at all the amazing chain reactions in the human body and the amount of "key and lock" substances like magnesium and calcium, you can see how one thing being out of whack has such a bad effect on everything else from that point on!
    • Db86
      Db86 Stolz

      Posted

      Yes, I think you are right.

      I have a host of things I don't go to my GP with as it seems like an unbelievable list . 

      I did take a list to the neuro last week and I really think she thought I just copied it off the internet!

    • Stolz
      Stolz Db86

      Posted

      Yeah, I printed off a list of hypothyroidism symptoms from the net because I had so many of them, and I ticked all the ones that applied, thinking this would be really helpful to the specialist I was seeing, to save them having to ask a bunch of questions.  Unfortunately the specialist I saw wouldn't even look at it, he hated that I had been looking on the internet myself for answers in the first place.

      The cost of going to the doctor prevents many people from going, I think, to the point where people are just so unhappy and exhausted from trying to "get on with it" that they break down and are misdiagnosed as having chronic depression.

      I have changed my view on depression in this past year.  I now view depression as largely a symptom of something out of balance in the body.  It has been a hard road for depression to be recognised as a condition in itself, but it may be harder still, for the medical industry to take on board that it is not a condition in itself or a cause, but merely an effect.

    • Db86
      Db86 Stolz

      Posted

      I am fed up with GPs and Consultants going on about depression. I AM NOT DEPRESSED! I hve family who sufferfrom depression and it is horrible, but I am not currently suffereing from it.

      I am also not stressed as they all keep suggesting - I am FRUSTRATED!!!

    • jackie00198
      jackie00198 Db86

      Posted

      Yep. Dealing with doctors will do that--cause frustration! On top of the frustration caused by dealing with this illness.
    • jackie00198
      jackie00198 Stolz

      Posted

      Unfortunately, doctors can be so arrogant. Especially when it comes to patients doing their own research. Many doctors don't seem to realize that with the Internet, some very good information is available to all. 
    • bronwyn97278
      bronwyn97278 Stolz

      Posted

      Thankyou:  you are just confirming an isue that I was starting to become concerned about.  In the past few months, I have been finding that after lying down for a rest/sleep, My lower limbs start to become numb, with tingling sensations. It was confusing me, as having spent 30 years being a Registered Nurse, and not understanding why these symptoms were only appearing when lying down, and only in muscles, I knew it was not related to any other medical condition, However, I had not read re same symptoms in any other site on CFS/ME: now I am reassured;  what I do to stop the numbness/tingling (enabling me to rest/sleep) is wear some TubyGrip on legs and for some reason this assissts the muscles, and assists my sleep/rest.  (I also realize now that it is not just Restless Legs Syndrome, as some people thinl)..  Thankyou. Yes, as to the Mental Arthrimetic...I too could always do these in my head (my children always asked me the answers, as they knew I could do same in head)...but not so sure now (recheck on paper)....and yes all other things, like spelling/typing, memory loss...we are all in this together...lets get a cure...that's what I'D like instead of just Popping Pills...
    • bronwyn97278
      bronwyn97278 Db86

      Posted

      Yes....that's why I ended up at a psychiatrist...too many symptoms...must need help as over-stressed....one other doctor told me to "go and play a game of squash...as I needed some outlet rom my busy schedule"...hell, I could hardly walk, let alone play squash!!!!!
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