Has anyone had an initial diagnosis of fibromyalgia?

Hi, I am new to this site and only stumbled across this information re the connection of the thyroid gland not working properly and fibromyalgia in the early hours this morning and it had given me a light at the end of the tunnel.

My symptoms started when I was six months pregnant six years ago, and was finally diagnosed with fibromyalgia three and a half years ago. There is only about 4 or 5 of the symptoms listed that I do not have. I have been on various concoctions of medications and nothing has helped. I am currently, with the help of my pain consultant nurse weaning off medications as I am sure the side effects make me worse. I am sleeping less and less hours and have an active five year old daughter. I was forced to give up work a year ago because I was just not managing. The pain, fatigue, sleep deprivation, cognitive impairment and if I continue will list all my symptoms, were just too much for me to cope with.

I have a follow-up with my pain consultant nurse on 23rd February, and want to discuss this with her. Where do I start? What do I say? Are UK professional supportive? I am so fed up with having to pace my life (though not too successfully), choosing what I do and don't do, which at the moment is very little, it takes so much energy to just get up and get my daughter to school on time!

Karen

15 Replies

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  • Karen

    Have a look at the web site of Dr Lowe..... he connects fibromyalgia with low T3...

    Uk Professionals are mostly far from supportive, and generally ill informed....

    drlowe.com/

    Nel

  • i also was diagnosed with fibromyalgia a few years ago, and have been managing as best i can with problems similiar to yourself, no one ever connected my underactive thyroid as a cause for these symptom till i like you stumbled on this site, i went to a locum docter and i didnt fancy my chances convincing my normal gp and i just said "others have found it a great help to see this specialist, an endricrinologist in colchester, and if its not the case im sure he will send me away with a flea in my ear." "IT CANT HELP TO GIVE IT A TRY IS JUST ONE REFERRAL" i said several times, and it could make all the difference to my life style and to my whole family actually.

    Just read as much as you can, and put your case firmly i would have offered to pay and go private and its worth £200 to feel better as long as the medication is funded by the NHS. Dont be fobbed off, if they suggest other treatements, say ok, ill try those but if it doesnt help will you then refer me please.?

  • who is this endocrinologist in Colchester?

  • I forgot to say i have an underactive thyroid gland and take levothyroxine daily.

    good luck, di

  • Hi Karen

    Just a thought - have you had your B12 level checked?

    pernicious-anaemia-society....

  • Sorry I clicked submit before I'd added ....

    This might be of some help

    Kind regards

  • Hi Karen, I have been very ill since the birth of my daughter 3 years ago. The fatigue, joint pain, muscle pain and weakness has been unbearable and it has been very difficult just to do the most basic of tasks. After two years of seeing my GP, Rheumatologist and Endocrinologist I have now been diagnosed with reactive arthritis which is apparently very rare. It is caused by a virus (could be flu, strep throat, salmonella, etc). The virus caused my arthritis and also caused my thyroid to play up. For ages the doctors thought that it was my thyroid causing all the problems, when in fact the virus had caused the thyroid and the joint problems. I am still undergoing tests so do not have an outcome yet but the prognosis is good, there is a 4 out of 5 chance all the symptoms will go away completely when the virus has been identified and dealt with. Since my diagnosis I have spoken to other people who have had this, apparently viruses can cause all sorts of autoimmune diseases such as crohns, diabetes and thyroid. I had to push and push for more tests, I knew something was not quite adding up but at first no-one seemed interested to help me, they just kept saying when your thyroid levels at normal you will feel better, but I never did.

    I really empathise with you, it is terrible living with the tiredness and pain (I do not know which is worse out of the two!!!). I haven't been able to sleep for three years. I find it so difficult to get moving in the morning so I try and do a few exercises before I go to bed and in the morning to unlock the muscles. I always struggled with whether or not to be on the move or rest to feel better, but I do find that the more I can get on with things the better I feel. Apparently the muscles and ligaments around your joints "free" up with gentle exercise which helps relieve the pain - I find that this does work but it is SO hard when you are in so much pain in the first place. I'm not sure if this has helped very much, but good luck with the pain consultant I really hope they can help you so you can start enjoying time with your little girl. Nicky

  • In Dr. J. C. Lowe's massive book on the subject 'The Metabolic Treatment of Fibromyalgia' he concludes and verifies during extensive case studies that there is a strong between fibromyalgia and impaired cellular response to thyroid hormones. By this I mean that although you may not have a recognised thyroid problem or even if you have and are already on existing thyroid medication it is still possible for the cells to not be adequately resourced with thyroid hormone.

    His treatment method includes many things but in terms of thyroid hormone is mainly uses T3, which is the biologically active form of thyroid hormone. Only by 'carpet bombing' the cells with T3 can the impaired cellular response be overcome in some cases.

    Anyone with these symptoms should also have adrenal tests, serum ferritin, B12 and be on a good supplement program which includes B complex, vitamin C, selenium, calcium as a minimum.

    A decent adrenal test is the twenty-four hour urinary cortisol test.

  • A word to the wise here... I asked my GP for an adrenal function test and was promptly told that GP's cannot request these any longer. They have to be organised by an endo... apparently... I'm on the waiting list for an appointment, but this could take a couple of months yet! Oh, does the joy never end???

    On the other hand, I have also recently found a multivitamin and mineral supplement which doesn't cost the earth at Sainsbury's. It's their own brand (N.B. not the over 50's stuff!)and contains just 25 mcg of Selenium that Rod recommended elsewhere in response to a question on the helpvine recently.

  • Hi, have you been tested for Coeliac Disease? Sadly it still takes 10 years on average for Drs to diagnoise it as it mimics many symptoms of other auto-immune problems. A simple blood test looking for enzymes and anti-bodies to gliadin (gluten) will show if you have it then your endo / gastro Dr can take further tests. It often goes hand in hand with Thyroid problems and is also linked to arthritis, lupus etc. Low B12, Vitamin D, Iron, Ferritin, unusual Liver Enzymes or pancreas problems are all signs of Coeliac Disease as is the most common symptom of fatigue (sleeping 12 hrs a day!), nausea and stomach bloating or dizziness and cramps due to the nutritional deficiencies. If you have any questions feel free to hop over to our GFG group we're happy to help and have members who also have Thyroid problems or who were mis-diagnosed with IBS, Fibro etc.

  • Hi

    I was told I had rheumatoid arthritis. I ached so much that some mornings I had to roll out of bed onto my knees, I just could not stand and when driving I could not turn my head to reverse. Finally I developed bad plantar fasciitis. I am lucky becausemire GP is brilliant and I responded to T4 only 200mcg NSAIDs.

    I too have a massive list of symptoms, all now improving, but my employer is refusing to recognise the changes needed to help my recovery despite medical guidance. So I am having to job hunt as well as everything else, my boss has actually told me to leave! So entering the world of Employment Tribunals. After 10 yrs of making lots of money for a 'blue chip' plc this is very disappointing, thyroiditis is so badly understood that I think they would know what to do if I were an alcoholic but are totally lost with something so personal and complex!

    Hope your pain lessens like mine has, exercise is very important but so difficult to motivate!

    Paul

  • PS

    I have had pernious anaemia and stomach/bowel trouble last year but these just went away. Checked for coeliac as apparently can cause poor uptake of levothyroxine - happily negative just took 5 months for T4 therapy to start to work.

    Paul

  • Hi all

    Thank you so much for all your help and advice. It is very helpful. I last had a blood test about a year ago and was told everything was 'ok'. Apart from I have a high level of something, I can not remember what, but my GP asked if I worked out at the gym every day, as this substance indicated that my muscles were in 'overdrive! "I wish" was my reply.

    I was test for Coeliac Disease after spending a week in hospital eight years ago after spending a week in hospital after being admitted with stomach pains so severe I could not move. First of all they thought it was my appendix but that was ok, then it was put down to the worst case of ibs they had seen. So my then GP tested me for Coeliac Disease and it came back negative. But I decided to go on a gluten free diet, and then was symptom free until I was pregnant. Something else that I have remember recently is that I was told at my 12 week antenatal visit that I need to eat bread etc so my baby wasn't deficient in vitamins, so I gingerly started eating it again - and then at about six months pregnant the pain started. So since Saturday I have decided to be gluten free again. I have an appointment with the gastro dept middle of march as constipation is chronic and further complicated by meds.

    I was originally told I had rheumatoid arthritis, and after six months kept badgering my GP as it just did not fit. Eventually I was re-referred for a second opinion and then told I had fibromyalgia.

    I don't know what my B12 levels, I will ask for them to be checked, as I don't know anything about pernicious anaemia - I will look at the link - thanks. But I do know that I get terrible pmt and seem to remember that it can be linked to low B vitamins.

    I am going to print out Dr Lowes info and take it with me on wednesday, I won't be able to remember it all :( And am also trying to get a copy of his book to read.

    Thank you all again for your help and advice, I will let you know how wednesday goes.

  • Hi do have a look at our recent post on gluten sensitivity. Current research is leaning towards many auto-immune diseases being triggered or made worse due to this. Obv as you're pregnant it's vital you get good medical advice. I'd recommend you get your B12, Vit D, Iron, Ferritin (iron store), blood pressure, and both Tissue transglutaminase antibody (shortened to tTGA) and

    Endomysial antibody (shortened to EMA) as sometimes they only test for 1 in Coeliac Disease and people can come up negative. Ref the bread ask your Doc / Dietitan for Advice. Most GF shop bought breads are high in fats, sugars and oddball preservatives. You could make your own GF bread and fortify with Linseeds/ nuts etc for extra vitamins. Going GF in pregnancy can be tricky as a GF diet isn't high in iron/ folic acid as so many GF grains and breakfast cereals don't include the extra vitamins. Do you have any family history of Coeliac Disease at all? If you are finding that traditional gluten foods are causing problems take good supplements and with advice from your health team (if you go gf), try rich gluten free natural items like Quinoa (actually a protein), Buckwheat (actually a fruit), eat brown rice (low G1 and helps sugar spikes).

    Good luck and do update.

  • HI I was diagnosed with M.e and now it looks like its my T4 not converting properly trailing combination of T3 and T4 at the momeny

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