Relapse..

Happy Christmas Guy. Hanf on in there, how long you had CFS and how did it start for you ?

Hi Guy, Really sorry to hear of your relapse, hang in there.  We are mightily amazing us M.E.ers.... we remain positive in the face of such horrors.   I find listening to a relaxation cd helps me loads....... and also listening to audiobooks that I get from the local library.  When I am lying there unable to do anything, symptom full I find that listening to a story takes me away for a wee while....  good luck and very happy Christmas to you.  Lily

I hope you get a bit better soon and good luck with the meds. I have just posted another discussion about the Amygdala re-training programme. It did help me up to a point one and a half years ago, but I was unable to carry on with it as was too busy sewing for my daughters wedding and then I was too scared to try again incase it didn't work the second time. But I am thinking of giving it another try.

It is a bad time just before Christmas to feel so wrotten, when nobody who does not suffer understands and most of them don't even try to understand and just choose not to and ignore it.

I am also positive as well, even though I have just had enough of it.

Happy Christmas to you as well. I will be glad when it is next Saturday.

Alison

You been tested for autoimmune disease I was told CFS just live with it a long story but 19 years later told definitely autoimmune hashimoto disease I have and had ! I started same as you a strange flu type illness , worth checking out if you have not been tested don't cha think. ? It took an ultrasound 19 years down the line to prove I have it . The symptoms are very much the same as CFS/ME .this may not be you guy but could help other sufferers on this site looking for answers , good luck hope you're well enough to enjoy Christmas when I t comes Sylvia 

 

Hi Guy,

Happy Christmas to you too!  I am sorry to hear you are having a full relapse, especially at this time of the year which is supposed to be joyful!  Please make sure you have enough meds to last through, plenty of water and some movies or tv shows to watch.  If you get a chance, do try to get the thyroid checked again.  you need to get T4, TSH and T3 checked - any good doc will do it for you.  The "normal" ranges in the UK are much bigger than in many other countries - unfortunately docs go by blood tests and not symptoms as they used to do. (Big phamaceutical again)  Also, try looking at the website for TPAUK which is a great site with lots of very informative and  sympathetic people. The forum is excellent.  One thing - at the moment the weather is absolutely foul so you aren't missing anything there!  Don't forget to take your vitamins too - magnesium, selenium, B12, BComplex and CoQ10 if you can afford it.  Hope you recover soon.

Linda  

Yes I had many thyroid blood tests over the years always came back normal I was told in no uncertain terms I had been tested for every illness connected to the thyroid plus others with similar symptoms this is why I was given the CFS 'diagnosis' . Just last month the endocrinologist I last saw in1997 sat me down and said he had looked up all my medical records and was shocked to see I had never been tested for autoimmune antibodies ,after testing for this plus an ultrasound he said I definitely have hashimoto disease and this is the reason I feel so ill!! Hashimotos apparently mask tsh results ! The tests you should ask for are thyroid peroxidase antibodies and (TPA) and thyroid antiglobulin . You could also ask for a thyroid scan as this seems to confirmit.  If I had known about hashimoto i might have saved my self years of suffering the most debilitating symptoms and what I can only describe as a nightmare struggle to try and live a normal family life and I presume this is the same for you David and guy . I am sorry if I have given false hope and it turns out this is not you but  I know over the years I have clutched at any straw that I thought could. Be  the answer to my illness . Thyroid disease seems to be one of the most misdiagnosed conditions and doctors go by blood tests not the patients symptoms . I am certainly not 100% well yet but I can live an almost normal life  I would say to you go to " I am hashimoto disease a letter" on your I pad or computer is this you??? Also Diane Holmes " tears behind closed doors" she was misdiagnosed for 23 years ended up in a wheel chair but now lives a happy and healthy life . good luck best wishes Sylvia 

 

David a long story trying to find a doctor who would treat the symptoms not the blood tests but I eventually did . He thought why should everyone be the same and go by a rigid set of numbers for underactive or overactive thyroid . He started me immediately on a very low dose of thyroxine and upped it over a few months , amazing !!! I was at least 50/60% better than I had been for years !!! He said when results are normal and doctors can't find an answer if the patient has chronic fatigue as a major symptom, a diagnosis is given of ME/CFS . This is what happened to me . I still had what you know only too well as crashes I still had some bad days but nothing like I had for so long . It is only recently that I have been diagnosed and proven that I have hashimoto disease and I am sorry to burst your bubble there is no cure only treatment , the treatment being would you believe, thyroid hormone such as thyroxine depending on your country. Obviously  this is why I became so much better after being prescribed it the difficulty I have learned is getting the correct dose of T3 and T4 some sufferers seem to do better on natural thyroid hormone such as armour . I am not 100% well but the relief I have after so many years of these awful debilitating symptoms and all it took was a couple of tiny white tablets taken every day !! I find it hard to believe that a disease discovered in the 1920 s is so overlooked. If you look up the site I mentioned previously you will read hundreds of comments from people after reading the" letter" who now know what disease they have and can act on it . This is rather a long note sorry but I hope it will help you to at least question your doctor . Doctors do make mistakes they did with me your life is worth more than just an existence . Best wishes  for the new year I hope it brings you good health