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I've had cfs for 25yrs looking for information

Posted , 9 users are following.

angela85346
angela85346

Hi  my name is Angela I've had cfs for 25yrs at the moment I'm having a very bad relapse i would  like to no if anyone has the weakness in your head my brain stem has been weakened so my nerves system is all over the place my. Body shakes inside pain deep in the back of my head been told that is coming from my brain stem have poor concentration and cry a lot it would be helpful if any one could enlighten me thanks 

1 like, 45 replies

45 Replies

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  • jasmininabox
    jasmininabox angela85346

    Posted

    For the upset stomach I found my personal diet that helps quite well ... (based on Montignac). 
  • caitlin39841
    caitlin39841 angela85346

    Posted

    hi Angela. so sorry to hear of your current symptoms. i had something similar last year with my cognitive symptoms becoming much more marked. i had my b12 checked. it was borderline low. i had this addressed and it made a marked positive difference all round, especially cognitively. i've read that ppl with ME/CFS need a much higher than average b12 level due to the body having to work so hard to maintain minimal levels of metabolism/activity.

    Caitlin

  • JulieBadger
    JulieBadger angela85346

    Posted

    Hi Angela, sorry to hear you are feeling like your symptoms are out of your control.  I saw my M.E. speacialist doctor last week and she confirmed it's my Autonomic Nervous System which has been disrupted by my M.E./cfs.  I too have had M.E./cfs and Fibrmyalgia for at least 23 years.  The last 3 years have been a downwards spiral for me in terms of symptoms.

    Your crying alot indicates to me that your antidepresants medication isn't high enough.  Maybe of a spell you need to have that higher.  I know I had dramatic emotional kickbacks when mine wasn't high enough.   

    I get constant pain in my neck upto the base of my scull down to my tail bone all the time.  The M.E./cfs pain eliments get people in different areas of their body. That is my constant one because of the Fibromyalgia condition.

    Poor Concentration I have been told is a typical M.E./cfs symptom.

    I believe it is not a "weakness" to your brain stem but a brain signaling defect which is connected to your brain stem.  It's got confusing signals of pain. It has not got weak it just has not true pain signals coming through.

    The "shakes" is not a description I have heard before.  However, if the pain signals are coming through wrong, yours might be sending a not true pains signal which feels like a shake?

    I personally would recommend increasing your antidepressants for a while.  Unfortuantely accepting that concentration problems is one of your syptoms (just like me).  Using a heat pack (the microwave wheat packs is what I use) at the back of your head during intense pain times (just like me).  Also taking the thought understanding that it's mistaken pain signals, not a 'weakened' brain stem which is at the route of this pain signals.  Not that you have a brain stem which is weakened and then thinking what comes next? Will the brain become weaker, forget how to talk, walk, eat?  You might not of been thinking like that but I would of. Gosh it's become weakened, what will happen next would of been me thinking (but maybe that's just me).

    Good Luck xx 

    • angela85346
      angela85346 JulieBadger

      Posted

      Hi Julie thank u for your information my GP says that I'm getting the wrong signals from the nerves in my brain stem and the pain but it is frightening this is happening to me and there is nothing i can take to help me my antidepressants r a high dose been on this dose for 6 weeks but this has not helped me at all got this on going 24/7 and just cant cope with it  don't no what else i can do have a grandaughter that i miss doing things with and that really upsets me terrible she is only 15months old so upsetting and cry every day 
    • angela85346
      angela85346

      Posted

      Hi Julie no I've not tried any of those I've never been this bad before and never cried so much in the past but this time it's been awful my family and friends have never seen me act like this so just don't no what is happening to me go about all day in a trance I've lost a stone in weight because of the pain in my head just could not eAt I've been managing to start eating little portions but what I would do normally I have a good appitite just feel lost and confused thank u for talking to me
    • JulieBadger
      JulieBadger angela85346

      Posted

      Maybe your doctor might advize a visit to the Neurologist for an MRI?  Such intense pain in the skull is unusual.  Good luck and keep talking xx
    • angela85346
      angela85346 JulieBadger

      Posted

      Hi I've had lots of ct and Mir scans but they all come back normal it's such a worry I suffer from high blood pressure for the length of time I've had cfs it also effects my breathing when I breath in and out the back of my head gets weak my go says it's all coming from the brain stem as that controls your nervous system
    • bronwyn97278
      bronwyn97278 angela85346

      Posted

      Hi Angela...perhaps the Increase in the Anti-depressant is actually causing the increased depression, which can happen.  I went through that path, but now that I take only ENDEP ( for pain and depression), I feel a lot better emotionally...yep I still get the teary days (expecially now that my jaw has gone, and find by the end of the day that it is worse from talking and trying to eat),  but ask GP/specialist for trial of other anti-depressant....??? If you read my input above re your Base of Skull issues, that is where my concern for you is....seems unusual....Bron
    • sylvia17461
      sylvia17461 angela85346

      Posted

      Angela I totally agree with bronwyne the deep pain in back of skull is worrying and tests and scans haven't picked any thing up . This pain sounds relentless and nothing helps to ease it? This of course may have absolutely nothing to do with your 25 year illness and seems it is a new symptom . Perhaps it is a trapped nerve  the pain from that is the worst and pain killers do nothing  to ease it but there are treatments for trapped nerves my daughter was similar to you In that she was in terrible pain in back of head and neck and told me later after she had treatment  and was pain free, she was convinced she had cancer, maybe you could go down that route. Sy
    • bronwyn97278
      bronwyn97278 angela85346

      Posted

      Angela hi;  just re-read your piece re pain in back of head, and note you have had MRIs, but when was your last one....after the onset of base skull pain, or prior?   If not recent, perhaps another may give some light (yep, I know they're horrible, and I have always asked for some IV nuerolept/valium, after trying to have my first)....would like to hear re this, as you are on my mind, and something's is not right????/   Bron
  • rose02814
    rose02814 angela85346

    Posted

    I have similar pain at the back of my skull which is painful. I also get the shakes, I thought at first I may be diabetic but tests came out clear. I wish you all the luck  and hope the symptoms subsides x
    • angela85346
      angela85346 rose02814

      Posted

      Hi rose what did they say about u having pain at the back of your skull my whole body shakes also think it's my nervous system I've been poorly since January and had no reprieve x
    • rose02814
      rose02814 angela85346

      Posted

      They didn't say anything. They just look at you as if you are mad. I'm trying to live with the symptoms as the pain is only occasional.  Try complimentary therapies such as accupuncture, it may help ease the pain x
    • angela85346
      angela85346 rose02814

      Posted

      Hi i have tried complimentary therapies but nothing helped i think there is something wrong with my nervous system  as i have the pain for 4 months my doc said it was the nerves that was causing the pain and burning sensation also yes they do think u r mad cause my scans r all clear take care x
    • bronwyn97278
      bronwyn97278 angela85346

      Posted

      Hi Angela; the only extra bit I can add, is that the "burning" sensation you talk about, tells me it has to be something related to your nerves.....for me that is the sensation I get in my muscles, and related to the Fibromyalgia...keep going and keep talking to anyone who will listen.  Ask your GP what he thinks re Amitriptilline??   Bron
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