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Cfs information can anyone help

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angela85346
angela85346

Hi I've just found out last week while being in hospital that my vitamin d levels r very low so been put on vitamin d tablets has anyone had this my calucum levels were low but r ok now also decided to try acupuncture today she said it was my nervous system that is effected feel if someone has taken my brain away as not able to concentrate shake all the time upset also weakness in my head it's a nightmare would be interested of any feed back my balance is not good I'm really worried what is happening to me

1 like, 18 replies

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  • caitlin39841
    caitlin39841 angela85346

    Posted

    hi Angela. so sorry to hear how much is happening to u. it must be most challenging for u. if ur low in Vit D, it would be wise to have ur thyroxine & b12 levels checked too. often when one of these is low, the others may also be out of zinc. it's particularly prevalent in ppl who have had ME/CFS for some time. all the digestive problems and methylations is also often affected. when u have the Vit D corrected u'll feel better. if the others are low and addressed, this will lighten the symptom load considerably & make things more manageable for u.

    all good wishes to u

    Caitlin.

    • angela85346
      angela85346 caitlin39841

      Posted

      Hi Caitlin I've been on vitiam b12 for a couple of months now all the hospital said my ct scan was normal but vitiam d was low just cry every day feel so lost nothing feels right just don't no what to do never felt As bad can't sleep at night been given medicine in liquid for to help can't even sleep anytime during the day x
    • caitlin39841
      caitlin39841 angela85346

      Posted

      i'm so sorry to hear that Angela. it sounds horrible for u with no sign of light at the end of tunnell from where ur at presently.

      are u on b12 injections or oral medication? do u know what ur b12 levels were/are? also have u had ur T3, T4 & Thyroid Stimulating Hormone (TSH) levels tested? ur current acute symptoms indicate that there maybe something amiss in these areas?

      Caitlin

    • angela85346
      angela85346 caitlin39841

      Posted

      Hi gp always gives me vitiam b when I relapse don't always get it checked for the other ones u have mentioned don't no what they r he always does an m o t on me that's what he calls it when he does blood tests lol never had a problem with my thyroid it's always been fine my sugar level was a bit low on Monday it was 4 but he gave me a sugar drink can't believe this is all happening to me feel so sorry for my family they have never seen me cry so much when things have been bad in the past I've never acted like this and seem to get back to normal and enjoy my life but things have been so bad since January they keep telling me to think positive and I will get better but I just can't see this frightened I will be left feeling the way I feel x
    • caitlin39841
      caitlin39841 angela85346

      Posted

      hi again Angela. ur GP sounds helpful, so i'd ask him/her to check ur b12 levels & also ur Thyroid i.e. T3/T4 & ur TSH. these are frequently abnormal with CFS/ME. s/he may not know this. the ME/CFS experts always check these straignt away before going onto more complicated stuff.

      all the symptoms u outline are prevalent where b12 is low. the ME/CFS experts suggest that b12 levels should be kept high i.e. 2000 pg/ml or above with ME/CFS patients. i was all over the place until i had b12 therapy. almost all the mental health symptoms dissappeared once it started to work for me. my energy upped measurably too. have a look at the Pernicous Anaemia Society website and check out the b12 deficiency symptom list against your symptoms. i'm so sorry to know how ur sufffering Angela. i've been there. ME/CFS is an unforgiving illness, little understood and no satisfactory treatment regimes for it. just a trial & error approach which is sooooooo difficult when we can hardly keep our heads above water most of the time, never mind do all the reading/research necessary to help the Medics to help us.

      Caitlin

    • angela85346
      angela85346 caitlin39841

      Posted

      My g p doesn't no what else to do so I'm waiting to go to southern general again for neurology x
    • caitlin39841
      caitlin39841 angela85346

      Posted

      hi angela. i've just sent u some info. but the moderator has intercepted it. i included a link. anyhow, it suggested that u ask the GP to check ur b12 levels as he'll be pleased to be able to help. b12 is cheap, effective with no side effects.

      Caitlin

    • angela85346
      angela85346 caitlin39841

      Posted

      Going to try and get app tomorrow for him I take 3 vitiam b tablets a day high strength at the moment but will ask him anyway thank u for listening to me as you will have your own problems going on thanks Angela x
    • caitlin39841
      caitlin39841 angela85346

      Posted

      no worries. ppl come on here support & be supported, exchange info., signpost etc. etc. can i pm u the links? the GP might want references etc. do have a look at the PAS website & the symptom list. it's low levels of b12 & Folate that cause the greatest problems.

      Caitlin

    • angela85346
      angela85346 caitlin39841

      Posted

      Thank u sorry was in bed just saw your text I'm on vitiam b12 tablets he is changing my antidepressants as been on one for 7 weeks but no change in me start the new one in 7 days have to be weaned of my other ones never slept all day yesterday and been up since 6 this morning nightmare x
    • caitlin39841
      caitlin39841 angela85346

      Posted

      hi Angela. i've just tried a number of ways of importning the signs & symptoms of low Vitamin b12 but my system won't allow it, probably coz my system's old. sorry it won't do it. anyhow if u google the Pernicous Anaemia Society web site the symptoms are clearly broken down by category i.e. Physical/Psychological/Neurological. it's very clear & accessible in large print. the reason why i'm stressing this, is coz ME/CFS symptoms all overlap with PA & a number of ppl have been misdiagnosed with ME/CFS coz Docs don't look out for b12 deficiency anymore. also a num,ber of ME/CFS sufferers have b12 deficiency alongside ME/CFS. docs. consider b12 deficiecny (PA etc.) a disease of the past. oral therapy with b12 is generally ineffective as only 1% of what's taken orally is absorbed so mega doses would need to be taken to bring levels up to the high requirements of ppl with ME/CFS. for me it was literally a life saver & has made living with ME/CFS manageable again. btw, i hadn't slept for 4 years. i know the nightmare of insomnia.

      Caitlin.

  • wknight
    wknight angela85346

    Posted

    Low Vit D is quite common due to the lack of sun in our climate and the amount of time we spend indoors.  I too have low Vit D and take tablets to correct the problem.
    • angela85346
      angela85346 wknight

      Posted

      Hi does any one have neurological problems that can give me some advice
  • sylvia17461
    sylvia17461 angela85346

    Posted

    GP s answer to patients weepy and a long list of symptoms is antidepressants. Of course you're depressed you have gone from being a normal full of life person to a complete wreck that feels they have been hit by a truck. !! That was me for years life was a nightmare it affected my husband daughter son grand daughters they could nt understand what had happened to me ! I have said this before , just because your thyroid results come back normal gp will insist there is nothing wrong connected to the thyroid! But this is often not the case and I know from experience .  All the symptoms you mention I had and more . My advice is ask or better still tell your doctor you would like a trial of thyroxine 25 mg s to start  All research tells you it will not harm you especially at such a low dose . autoimmune disease is the biggest cause of hypothyroidism and more often than not your TSH. T4 T3 come back from lab normal so you are left to suffer and as with me told you have ME/ CFS  . look up dr skinner he was asked to see patients diagnosed with ME/ CFS he found the symptoms were very similar to hypothyroidism so treat them as such . Because of this many many people were back to full health . Hey what have you got to lose a small tablet once a day and absolutely no need for antidepressants !!! Sy 
  • jinny23
    jinny23 angela85346

    Posted

    hi Angela

    I am in the early days of understanding ME.

    what you say brings back so many memories for me!

    about 4 years ago, I was under a specialist for all the reasons you give... and parathesia (excuse the spelling) pins and needles in my legs and toes. I also remember my groin giving me so much pain!!

    my consultant aid I was at the early stages of MS...

    I thought my world had ended for 2 years....

    I decided I couldn't live like that anymore so went to see a specialist privately to get a second ipinion.

    turned out, I didn't have MS, it was ME....

    I have referred myself to clinic and 18 months later, last month, I have started a programme to support me.

    I could write a book....there is just so much to tell.

    I am taking each day as it comes at the moment.

    not easy but you have to be strong and determined.

    good luck and if I can help in any way, Please ask.

    jinny23

    • angela85346
      angela85346 jinny23

      Posted

      Hi jinny I've had this problem for 25yrs got all the test including m s but all were clear at the moment I've got terrible pain in the back of my head was told it's the nerves from my brain stem wAs thinking of trying a tens machine as not done that before this time it's been since jan I've had the pain and at the end of my patients tried acupuncture yesterday x
    • jinny23
      jinny23 angela85346

      Posted

      hi again Angela,

      you sound as if you are at the end of your tether. it doesn't seem right that you have not got to the bottom of things in all those years but I do remember having a nagging groin pain for years and no one consultant ever getting to the bottom of it. I have even had several scans to see if anything can be found. Now that I have found out that I have ME, in some way it is a great relief.....

      like you, I have tried so many things....different pain killers, physio...and nothing has worked.

      I have now given myself permission to self medicate because I now understand the amount of energy I am using through the pain...and that's not good for anyone to live a normal life.

      when I went for my first ME support session, the worker asked me did I have any short term goals and I replied with "yes, to get back to work" .....she looked at me and said, " that would be a long term goal!"

      it was then I realised maybe I won't return to work...!!!!...and slowly I began to find acceptance so as to move on.

      I think I haven't been comfortable in my own skin for so long because it's been a battle I can't win. but, you know I still have that fight in me..to beat it....and that must be where you are at if you speak as you do..

      finding peace within yourself is a great healer....listening to relaxation clips helps me.

      I had forgotten how to relax too. I guess not going swimming didn't help but every little part of the process of going swimming became too much for me to cope with; just drying with a towel after swimming was a toil, sitting behind the wheel to drive to swimming was hard ...

      I am setting myself small goals daily now and I plan out each day....never thought I'd say that but it helps me to cope with life today and not to worry about yesterday or tomorrow.

      take good care if yourself Angela.

      best wishes

      jinny

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