What do I do if my Dr thinks I have Fibromyalgia,but the CFS/ME clinic who were extremely rubbish just say that it's anxiety disorder - which it isn't

[Nicola]

Hi all. I am new to this site and have joined many others like it just for a little help. I have suffered with arthritis in my spine and knees since childhood (I am now 37) and have had a slipped disc in my lower spine since about 1995 which causes sciatica every now & then. The arthritis was a pain (literally) because every time I went to my Dr, he said it was growing pains, I was only a child of course, that I would grow out of it!!! I never did and my Mum continued to take me to see him with these agonising pains. Eventually, after an MRI scan at around 17 years old (it only took about 10 years for them to do something about it!!!), I was diagnosed with arthritis and was prescribed co-proxomal (which of course was later changed to co-codomal because of the many suicide attempts on the co-p). I was also diagnosed with an underactive thyroid when I was about 20 years old - so I kind of know about pain, feeling a bit blue blah, blah blah. I've just coped - is all I can say. You learn to live with the pain, to hide the pain, to ignore the pain etc etc. So school and work were dealt with by trying my best to stay positive and happy - despite the struggle in my head at wanting to scream all the time through the pain. No-one knew how bad I felt and that's just how I wanted it!

I have two wonderful children aged 12 & 10 who know I have arthritis and have helped me with certain things around the home since they could 'help mummy' and found it fun, but without ruining their childhood - they still find it fun to help me and still do help me a tremendous amount, but they DO NOT know about the latest addition to my problems, and I don't want to tell them incase they worry. For the last at least 15 years or so my (arthritis??) pain seems to have spread. I remember asking the Dr at the pain clinic many years ago if arthritis can spread - he laughed at me, told me not to be silly!!! I was told that I could have an operation on my back for my slipped disc, but that it might not be a success and I could be paralysed - GREAT, YEAH, I'LL GO FOR THAT!!! Obviously I didn't go through with it as I wanted to start a family, and have just suffered with the growing intensity of this pain taking painkillers ever since. About a year ago, I went to my Dr (now new through moving to a different County) and told him that my pain is extremely bad, My hip wouldn't move properly and I had to force it to 'click' into the right position before I could continue moving!!!! He put me on Lyrica (Pregabalin) and sent me on my way.....did it help, I don't think so. In July 2010, I went back to see him to explain the many symptoms that I was experiencing. I can't sleep (haven't for years), the blurry vision, spasms, brain fog, confusion, dropping things, being unstable on my feet, migraines, pain in my neck (even into my head where you imagine the stork of your spine ends in your head); shooting and stabbing pains all over; 6 stone weight gain (in 5 yrs) - although no appetite (an NHS health Nutritionist said I need to eat more because I've messed up my motabolism!! - Yeah, I've put 6 stone on hardly eating a thing - imagine what would happen if I did eat!!!) The list of symtoms is too long - including the fact that a lot of the time I just want to chop my legs off because they hurt soooo much!!!. He increased my dose of Lyrica and prescribed Amitryptaline (?) for the sleep problem (So it's been about a year on these now). I now sleep ok after eventually dropping off - I can also get back to sleep if I wake in the night through the pain, but the Lyrica just doesn't seem to have made a difference to the pain - which is so bad sometimes, I feel like I can't breathe and I want to chop my legs off (I think I may have mentioned that!!). I went back to the Dr and he told me that it sounded like 'Fibromyalgia' or Chronic Fatigue Syndrome/ME. So in October I was sent to the CFS/ME clinic - who were absolutely rubbish!! I was told to complete a questionnaire and after seeing me for 20 minutes they decided that I was suffering from severe anxiety!!!!! WHICH I AM NOT!!! They didn't even ask any of my symptoms, just were focussed on whether I could read a book without falling asleep and if I just drop off (to sleep) anywhere - well, of course I don't allow myself to just fall asleep wherever I am!!!! Imagine how much of my life I would waste if I did that - so despite the fact that I do feel like I could go to sleep at any moment - BUT I make myself stay awake - they decide I'm anxious!!!! I went back to my Dr, who has simply increased my dose of Lyrica and will do so until I start having side effects until I get to the 600mg - so far, I feel no better from the pain - every symtom is exactly the same. I asked him about his first thoughts on Fibromyalgia and he said that that was what the CFS/ME (Chronic Fatigue Syndrome/M.E) clinic were for - But they were rubbish, just said I needed counselling for anxiety!!! I have read a number of people's stories on other sites - every symptom of Fibromyalgia that they have relate to me and what I go through. Lots of people say that it took them years and years to get a diagnosis of FM - What do I do now???? Yes, I've suffered with the pain now for the last 20 odd years of my life, with the last 10-15 being extremely bad - the thing that made me go back to the Dr a while ago was because my eye was uncontrollably twitching non-stop and now I get sharp stabbing pains in it, like a bee has stung me in my eye ball and then it makes tears come out of it -(not because of a crying thing). If I listed all of my symptoms on here, I'd be here forever - but I know that it's not normal.....oh well, I'll just dope myself up to the eyeballs with these drugs because that's what the Dr has decided for me!!!!!!! He also suggested I see an optician for my eye problem - which I could only manage to get an appointment for in the middle of December!! Anyone got any suggestions???? Sorry it's a long post x

Updated on Dec 9 2010 9:49AM: Update: Dec 2010: Had my eye test at the opticians....my vision is 20-20, but I am suffering with 'dry eyes' for which I now have to take drops for. Apparently, it's all part of having arthritis and thyroid problems - christ - now wonder I'm not allowed to give blood - the amount of medication I take!!!

[shaws Administrator]

Dr John Lowe is an expert on Fibromyalgia and thyroid. He would be most sympathetic.

You have had a very long struggle but you know instinctively about your own body.

You can consult or you can emai him .I hope you find an answer.

This is one of his links re fibromyalgia.

thyroidscience.com/cases/lo...

[Nicola in reply to shaws]

Thanks Shaws,

Thanks for that link. I have read the report and have written to Dr Lowe in the hope that I get an answer.I also printed a copy of the TSH and weight Gain report. I may make another appointment with my Dr to show him. When I asked him about changing to the 'Armour' Thyroid treatment, he said that this was not available on the NHS and that there was not enough evidence to suggest it worked!!!!!! All I know is that I am almost 17st, hardly eating anything - and I don't eat meat - only fish & chicken - and that's only because a previous Dr said that my vegetarianism wasn't helping my bones, so at 21, I started to eat chicken and fish for the first time in 8 years!!! 6 years ago, I weighed 9st and was a lovely size 10/12 - now I'm huge in a size 24!!!!! My Dr just doesn't seem to think there's a problem!!! Urgggggggggggghhhhhhhhh!!!

Thanks again. Will update if I get any response.

[lins1975]

CaN I ask which clinic you went to? I have ME and I go to the optimum health clinic. You have to pay but they are great. My friend recommended them. She used to be in a wheelchair her ME was so bad and now she's almost completely at full health. Google the optimum health clinic. They are based in London but can also do phone apointments if you can't travel. They certainly wouldn't test if you keep falling asleep. That's nothing to do with ME! Good luck! In the mean time try magnesium for the muscle pain

[Muffy]

What are your thyroid test results (your need to include the ranges).