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CFS symptoms

Posted , 10 users are following.

david59662
david59662

Hi,

I just want to know from people who unfortunatelyhave had CFS/ME for a number of years. Have you had any MS like symptoms during this time, like minor umbness of hands and feet ? Have you been tested for MS and what happened ? There appears to be similarites but they are distinctly different ?  I'm 6 months into my PVF now CFS, just feel zombified on a daily basis, some days worse than others. Like i'm 34 and it feels as if my heart is barely beating. Thought i felt my right foot feel numb this morning. I am awaiting to see a neurologist, upto12 weeks. The NHS is great.

Thanks for reading.

0 likes, 88 replies

88 Replies

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  • jacquie14742
    jacquie14742 david59662

    Posted

    David i would do that private option, as once you see the neuro you may have to wait another 3 months for an MRI!!! 

    Havent seen that CFS test, might look into that!

    Wish my doc would test me for lyme...i think i may have to go private on this - can you go straight into having the Western Blot private? 

    • david59662
      david59662 jacquie14742

      Posted

      Hey Jacquie, thanks, the waiting is almost as bad as the illness right ?looking into private MRI, already made 2 enquiries.

      DEFINETELY the way to go and for about £250 well worth it, as SA34 said. Apparently lyme is under diagnosed and on the increase, many people suffer for years without knowing, many with conditions such as what we have CFS/ME. I'm just watching the circulation go all wonky in my hands. But for some reason at the same time i am starting to feel really alert. You know later stage lyme after 6 months becomes quite neuro, hence they call it neuro borreolosis. Anyway hope that helped. I've actually been on doxicycline for the past 2 weeks as a possible lyme treatment. As i said my GP's have been so great !

  • jacquie14742
    jacquie14742 david59662

    Posted

    David - i will look into that Lyme test - is it much better then to just bi pass the ELISA and do western blot? ii need it to just be gone from my brain as a possibility more than anything 
  • lisa35180
    lisa35180 david59662

    Posted

    Hi David,I too have CFS and weakly positive test for myasthenia gravis,I've had this for 7/8 years now.About 2 years ago I was getting numbness in my back between my shoulder blades,spoke to gp she said she wasn't sure,last summer my face went numb and over the last few months I've been numb in my head,face,feet,toes,legs and arms ,mostly the right side and tingling burning and the most annoying feeling like somebody is sticking Pins in me.seen my neurologist and waiting for results of MRI,I only waited 4 weeks to see neurologist and then 2 weeks later had MRI,so that sounds like a long time for you to wait.
    • david59662
      david59662 lisa35180

      Posted

      Thanks alot Lisa. Considering private MRI testing. Good luck. Please look into lyme disease and get tested preferably Western Blot method.
    • Gregh286
      Gregh286 lisa35180

      Posted

      Hi lisa

      You have suffered this for 7 years did you ever have a cfs screen test done?

      If so what was outcome.

      Thanks

    • lisa35180
      lisa35180 Gregh286

      Posted

      Hi greg,no I haven't had the screen test. I don't know what it is! I started with a virus ,after about 6 months or so I became really weak and still fatigued,after what seemed like a million tests the dr said it was CFS/me .i also tested weakly positive for myasthenia gravis too...there really isn't much help out there for us,I was basically told to go home and rest and get my children to do the house work!!!! As if!! I know now when I need to stop and rest...and you NEED to listen to your body,it's really hard because I still push myself to the limit but I'm getting better at resting...keep positive because people do recover from this.

      how long have you been ill ?

    • Gregh286
      Gregh286 lisa35180

      Posted

      hi lisa,

      there is 2 I know of.

      Mine started last sep/oct, no virus beforehand, Was really low unable to do anything physical until dec, in dec + jan + got a full reprieve. Mid Feb fatigue came back with a vengeance, until now.

      I have genova results coming in 2 weeks. 

      Funny thing, I get respites of 7-12 days, I think Im over it and then I just goto pieces again. Family think I'm mad.

      It brings me to tears when I bad, really, really poor physically when fatigues in town, have to lie down most of the day. When I have fatigue I have other symptons same time, headache, air hunger and low patience obviously. Its wicked.

      Last week I started TCM and a triple treatment of Q10, Ribose and Magnesium.

      since saturday I feel like a Million Dollar man, energy to the max.

      So, its either a brief respite that I have got in the past 5 or 6 times, or actually TCM is working or the triple Vitamin supp. I have had false dawns in the past so I m not getting excited yet.

      I will be really surprised if the Genova tests dont show up something with my energy cycles. I am certainly lacking in something. 

      Next few weeks are pretty important time for me now.

      All the best.

      Try the test, nought to lose.

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  • lisa35180
    lisa35180 david59662

    Posted

    Hi David,I have looked in to Lyme disease but I know exactly what happened to me .I woke one morning 31st October with the worst headache ever,I had a virus and never recovered.By the march I couldn't walk and after loads of tests and time I new it was c.f.s and myasthenia I've got a feeling that I might have m.s as I have most of the symptoms and having CFS for 7/8 years I know what's normal pain and symptons for me.These new symptons are different ! What's the western blot test for??
    • david59662
      david59662 lisa35180

      Posted

      Hi Lisa, lyme disease can cause all of these symptoms, like THAT is the root of what is causing it, whether it be myastenia or MS. These are just labels, the doctors tell us they don't know what causes these things. The Western Blot is a test for lyme. Lyme is called the great imitator beacause it mimicks so many other conditions like MS/ME etc The more i research it for my CFS/ME the more it looks so likely it is what i have being super fit outdoors guy now i struggle to leave the home. So i have to go with testing for lyme and hope i don't get any worse.
    • jackie00198
      jackie00198 lisa35180

      Posted

      Lisa: I just wanted to mention that I had CFS for many years--then with a relapse got new symptoms. So it's good if you're checking for MS, but it could still be the CFS. Have you been diagnosed with CFS (a diagnosis of exclusion) and myasthenia? 
    • lisa35180
      lisa35180 jackie00198

      Posted

      Hi jackie,yes I've had CFS/me for almost 8 years and myasthenia gravis too. I've never really recovered from it ...I get good days and mostly bad ones!! Yes the new symptoms have been on and off for about a year or so...numbness,tingling ,burning sensations,loss of use especially in my right side...as you may well no the mixing up of words and slurred speech is really bad at the moment...and my memory isn't the best since being ill...but oh my god it's awful now ,it's just a whole load of new symptoms as well as the CFS ones...as if were not ill enough!!! I'm just waiting to see my neurologist now for the results.did your dr tell you it's part of CFS? 
    • jackie00198
      jackie00198 lisa35180

      Posted

      My doctor doesn't seem to know what's causing my new symptoms (tingling, numbness, shooting pains, heaviness in legs). After reading this forum and doing some researching on the Internet, I'm convinced my symptoms are CFS related. Also, I got these symptoms after a trip, and my general fatigue is worse. So it seems all of a piece. On one hand, it's always good to check that something else isn't going on. On the other hand, CFS can cause an amazing variety of symptoms.
  • lisa35180
    lisa35180 david59662

    Posted

    Oh I see now,I thought that because I had a virus obviously your immune system kicks in and it still thinks it's fighting the virus...who knows eh?? I just know and it sounds like you too that I won't let it get me!! Don't get me wrong it does get me most day's !!im my own worst enemy too because you don't know from one day to the next how you will be....I make the most of good day's and live for the moment...if I can do it  I will..if I can't then wait till I'm good then do it. Just don't ever give up hope because then what have you got....and David I know it's really hard but it could be worse...when I was first I'll it was the same time jade goody off big brother got diagnosed with cancer....and I thought omg that could be me...so yes it's hard to live this life now but chin up!!keep positive xxxx
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