Numbness/tingling extremities & tongue after exercise?

Discussion in 'Fibromyalgia Main Forum' started by dvirmani, Aug 6, 2010.

  1. dvirmani

    dvirmani New Member

    Hi all

    Just have a question about some new symptoms I have never had before & I'm a 13 year CFS sufferer: after a period of sever over-exertion last week I knew I would get post-exertional malaise but wasn't prepared for how bad. The fatigue and all flu- like symptoms came on the next day but I had some new symptoms that I've not had before. I dot severe numbness & tingling which started in my fingers then into my hands, up my arms, then my face and my tongue then became affected. This was worsening by the day. My Neurologist has now ordered me IV steroids which I start today.

    Has anyone experienced these symptoms before with CFS?

    I would add that I am in the process of getting work-up for Multiple Sclerosis as MRI showed multiple white lesions on my brain so don't know if these new symptoms are more consistent with MS? Any advise/input appreciated.

    Thanks so much, Diane
  2. u&iraok

    u&iraok New Member

    I've gotten it in my hands and arm but it never worked its way up to my face. Mostly on the left side for some reason. It would often happen the day after I exercised.
  3. Kevin M

    Kevin M New Member

    I had a very similar issue a few years ago…the tingling turned into a burning sensation, almost like I was in a sand storm in certain areas of my body. It progressed from my legs and slowly made its way up through my trunk and eventually into my head. The only area of my body where it has not happened is in my lips/tongue.
    That’s really the reason I am out here; I was diagnosed with central sensitization syndrome (a subset of fibro) at the Cleveland Clinic 2 ½ years ago. The symptoms settled down with Cymbalta and Lyrica but we drove to Florida from Northern Indiana 4 weeks ago and everything has gone wild again. Driving on certain types of pavement gives me all kinds of pain…but so do things like typing right now. I have it in every finger.
    Have you been able to find any help anywhere else? This is my first time out here or at any ‘help group’ for that matter. I was hoping to find someone who had the same issues (but I wouldn’t wish it on anyone). Do you ever get feelings like hot needles poking into you as well?

    Sorry for the babbling e-mail… :)
  4. Kevin M

    Kevin M New Member

    When I had this, they gave me steroids as well (orally). It made everything worse. The Dr at Cleveland said it is like my nervous system is on hyper-drive; steroids may make it worse. But every case is not the same...just passing along info...
  5. dvirmani

    dvirmani New Member

    Hi thanks for your responses- this is a frustrating illness without a doubt. Kevin I have been on Cumbalta for over a year already and have experiencec pins and needles sensations only on my left side a few years back but this was attributed to severe anxiety but I have not had the feeling of hot needles poking me before. Maybe you can post a ne topic for that and see if anyone else has had this - people are very helpful on this Board:)

    I did the 3 day IV steroids and then had the steroid "crash" but which was bad for 2 days but now seems to be getting better. I have an a appointment with my Neuro. End of the month so I will ask him if this sensation can be caused by Me/CFS and reply.

    Hope you are doing OK and remember everyone is very helpful on these boards so stick around - glad you are here:)
  6. Kevin M

    Kevin M New Member

    Thanks for the encouraging words. I have to say I was a little overwhelmed (and still am) at the sheer number of messages that are out there. How in the world do you find what you are looking for? :)
    The one Doc I have been seeing told me to start reducing my Cymbalta because he thought it could possibly have been a side effect of the med. I think his heart may have been in the right place, but I reduced it to 30mg and things went crazy! Luckily I went to see my pain mgmt dr for a 6 month check up and he decided to up me to 90mg Cymbalta and 3-150 mg of Lyrica. I would have to say the pain has gotten a little better, but I am still not back to normal.
    The exhaustion is terrible too...I am beat by 6:00 every night with a splitting headache. My dr had me get a CT scan of my brain just to be sure everything was OK. I can't get an MRI because I have an implanted spinal stimulator in my back for another issue I have back there with nerve root clumping where I had a 3 vertebrae fusion 4 years ago.
    I don't know if they even know what I have...the guy in Cleveland said it was CFS/Fibro/Central Sensitization. The Cymbalta helped but as you know, things are never normal again. I feel bad that you are so young and affected by all of this; I don't know anything else about you, but I feel compelled to pray for you and your situation. God Bless!
  7. dvirmani

    dvirmani New Member

    Thanks for your response and prayers; they are very much appreciated. I got the diagnosis of CFS from the Fibro & Fatigue clinic in 2006 after searching since 1997 to fin out what was going on with me - the fatigue can get really bad when you are in a CFS flare up so I know how you feel. They usually come to the diagnosis of CFS after everything else has been ruled out -I don't recommend this clinic though as they are into making money firstly. I have ordered a supplement off this site called Mitochondria Ignite which helps with the fatigue so you may want to try that. I also take NADH 10mg daily for energy which helps. You may want to give these a try but it takes a few months for them to work. I know it's really frustrating I also have chronic Epsteinn Barr virus which adds to the problem. Don't over exert yourself as that makes things worse and so does stress. I will keep you in my prayers also - stick around this board as it's really a blessing! Chat again soon, Diane.
  8. matieofleaves803

    matieofleaves803 New Member

    I 've had the tingling in my hands, fingers, feet, face and tongue, too, and also the feeling of water droplets on my legs.
    The latest thing is bladder "squeezing", I would say. Not the tiny bladder women are neutroias (sp!) for having, but it's like my bladder is fighting me and the feeling of EXTREME tingling (I guess) is everywhere. Feet, hands, everywhere. I tighten every muscle I have and say "up, up, up", like a manuel mantra and sometimes I win and sometimes my bladder wins! :[
    Are we having fun yet?
  9. Kevin M

    Kevin M New Member

    How does Esptein-Barr affect you Diane? If you don't mind me asking, how old are you? 13 years is a long time to battle CFS. Do you work? Epstein Barr is one thing I haven’t been diagnosed with. I had one rheumatologist tell me I had Lupus and then two other ones tell me he was nuts.
    So you don’t ever get over CFS?? I have always required a lot of sleep but this exhaustion I have been experiencing is just crazy. My pain Dr put me on Ritalin to stay awake so I sleep better at night…I was actually falling asleep at my desk…not good if you want to stay employed! It’s too bad it hasn’t helped my Undiagnosed ADD! haha
    Does Mitochondria Ignite help? My ‘alternative medicine’ Dr put me on a gluten free diet and it really helped the inflammation until recently. He also suggested Adrenotone because he thinks my adrenal glands are wiped out and need ‘refreshed’. I went back on Oxaprozin (anti-inflammatory) a few days ago and I could tell a difference this morning. Plus my wife said I wasn’t jumping around in my sleep like I have been. Who the heck knows…I feel like a science fair experiment most days, I am sure I am not alone in that feeling!
  10. Kevin M

    Kevin M New Member

    I have had the feeling of water running down my legs too...has anyone ever told you what that is?? I am not following you with the bladder situation tho...what happens there? Some times I get a stabbing pain in my bladder area, but that's all. I have had it in other areas too.
    what have you been diagnosed with??
  11. matieofleaves803

    matieofleaves803 New Member

    I assume the water thing is nuerological. I don't think I can describe the bladder thing any better than I have. (note how "easily" the words flow ---oops! No pun intended! I was just commenting on my lazy wording.)
    I have CFS, and I've had it since childhood. I'm 68, now, so we're old friends. Not everybody has it forever. It's hereditary in my family. My aunt, my grandson and I.
    I have a bunch of other things going on, too, which seems to be pretty common in people who have one outstanding problem. Diabetes, COPD, conjestive heart failure, anemia, probable hypo-tyroidism. Some other things, I think, too. Can't remember right now. I don't pay a lot of attention to any of them. It's been so long, it's just become part of me, now. I just enjoy what I can enjoy and go on.
    Hearing this, don't think it's your story. Some people do get over it.
  12. Kevin M

    Kevin M New Member

    what sets off your CFS? are some days worse than others (dumb question, I know)? I haven't figured out what set me off again. I went from as good as I have felt in 3 years (still no where near normal) to feeling like crud. Just seeing if you have any good suggestions on what to avoid. I keep hearing stress is bad (hard to avoid since I am out in the job market because my position will likely be gone to Chicago in 18 to 24 months) and overexertion. I have taken it easy but it didn't help.
    Any suggestions...anyone?
  13. hugs4evry1

    hugs4evry1 New Member

    I had very similar symptoms a few years ago although I can't remember exactly what brought on these symptoms....and after finally telling my doctor it turned out to be a blood sugar problem.

    It began exactly as you described, fingers first then up my arms and finally to my face....


  14. Tizz

    Tizz New Member

    Numb and tingling extremities -- I was THINKING it sounded like peripheral neuropathy to me!

    I've had PN for over 7 years now, but not the diabetic kind. In fact, I guess I'll never really know the reason for my peripheral neuropathy; mine is "idiopathic". (That means the doc is an idiot who can't figure out why it's happening!)

    PN is one of the many things that can get mixed up in this foul stew of fibro, CFS, hypothyroid, hypoglycemia,cramping, arthritis, cystitis, incontinence, IBS, etc etc - but it's not actually part of fibro, at least not that I ever heard about.

    [This Message was Edited on 08/13/2010]
  15. matieofleaves803

    matieofleaves803 New Member

    Actually, anything sets it off. Any mental or physical activity, any emotion, anything (or nothing, for that matter.)
    That's why, when I can do something I enjoy, I do, even tho' I know I'll probably pay for it. This is easier for me, because I already have my disability and I'm not trying to convince anybody that what I'm feeling is real.
    Yes, some days are better than others. the only thing I can say for certain is that activity will set it off.
    Mine didn't get to the disability stage till '90. Before that, I wondered why I seemed to have one good day followed by a bad day, or why I couldn't ever work full time; why one person could climb straight up the hill, and I had to take it in stages; why, after being engulphed in wonderful music, I was exhausted and could only lie on the couch. Or, why I made 1/2 the bed, and then Had to lie down on it!
    It's come and it's gone over the years. In my late 20s, I couldn't walk, think and breathe all at the same time, and my legs were on fire. Then I wasn't that bad. Then I was bad in a slightly different way. And on and on.
    I went without sleep for 5 years. No more. I concentrate my meds on sleep and I also meditate. I meditate when I first go to bed and after every time I wake up.
    Read some of the other posts about other meds. A lot of people use naturapathic meds, as well as conventional ones, and most people get some relief from symtoms that way.
    Good luck and don't hesitate to write again. This is a good board and you're not alone here.
  16. I have had CFS for 12 years and pins & needles for about the past 3. Bladder pain is also a big issue and food intolerances are so bad I only eat two foods now. Boy have I gotten slim as a model! Too bad I look so sick.

    I recently stumbled on a lot of case histories of people with pins & needles, bladder pain (I also have this), CFS, FM and MS lesions who have been cured or have become much better after treating pathogens such as chlamydia pneumonia, Lyme disease bacteria, and others with antibiotics. is the best place to start learning about this, but there are also some articles at ProHealth.

    These symptoms have also been associated with chronic viral infections, and there is a small amount of research indicating that a relatively new antiviral, Valcyte, can completely cure some cases of CFS that are caused by chronic Epstein-Barr and/or HHV-6.

    I am looking for an infectious disease specialist in the Chicago area to see if my problems could be due to some of these pathogens. My first attempt was not a success, but maybe another doctor would be more helpful. Please anyone, if you know a good doctor I would be so grateful to hear about him or her . . .
  17. Nanie46

    Nanie46 Moderator


    You may have success if you find a Lyme literate MD through your local Lyme disease support group or go to on flash discussion.....sign up for on "Seeking a Doctor" Board and create a post asking for a LLMD in your state.

    ID Dr's usually do not understand chronic lyme and coinfections and usually will not prescribe antibiotics long enough or in high enough doses.

    ID Dr's also usually rely on lyme testing to rule out lyme which is totally wrong.

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