Fibromyalgia Action UK


Hi all

Do hope you all are not having to bad a day . I was given the news that I had fibromyalgia in October and given a booklet.

The end of November I got into see my doctor ,I was in a state, and had a meltdown which l do not have as l am not that tipe. Just seems that 10minutes was not enough time to talk .Went about my bladder and tried to get a longer time slot .My doctor did not no that I had fibromyalgia as the hospital had not let him know yet . He was very patient with me and gave me a appointment for the 20th of this month .

This morning I had a copy of a letter sent to my doctor saying that a scan done on my hands show fibromyalic tender points .The Rheumatologist has cancelled my april appointment say that their is no need to see me again as I do not have inflammatory arthritis .Is this the normal way it works ?.

Also they would like me to start taking Dothiepin 50gmail nocte ,dose anyone no what this is ?As I cannot find in my health a-z . .

So sorry to go on but not having a good day and this letter has had me worried as hoping the meds are for pain not antidepressants .

Thank you for reading .

11 Replies

Oh dear. Shows it is a postcode lottery with health services. I had been seeing my Rheumatologist for years and it was was him who said I had Fibro and gave me injections and exercises that helped.

from Wikipedia

Dosulepin (INN, BAN) formerly known as dothiepin . Dosulepin is used for the treatment of major depressive disorder and neuropathic pain.


Betty67 thank you for getting back to me .

If it was not for this group l would be none the wiser about fibromyalgia. I do know that not everyone I has the same problem s with it ,but would have thought that the rheumatoid clinic would have been more helpful. Will see what my doctor has to say when I go to see him . Thanks for letting me know what Dothiepin is used for .Need to find out about it before I go to see him .

Thanks again .


Hi I was diagnosed with Fibromyalgia by GP in March 2014 and was sent to Rheumy to confirm this and if they didnt do a scan on my hands wouldnt have known I also have inflammatory disease as it never shows on my bloods. I have found fibro very to get my head around and come to terms with as no 2 days are the same and I have just lost my job through this. I find meds hard to take as I am quite sensitive to side effects with most meds so I asked my GP to refer me to pain clinic which he did and I have found the mindfulness part of pain clinic a little helpful and most of the people there had the same condition so I felt someone understood what I am going through. GP also sent me to sleep clinic where they found i have sleep apnea. I dont sleep well anyway as I usually wake with pain but now I have to struggle with a CPAP machine while I do sleep (this is a machine that pumps air through a mask which you wear whilst asleep). I hope you find something which eases your pain. I have found this site invaluable. Take care. Gentle hugs Joolz.x


Hi there, it was same when i was diagnosed about 7 years ago. Told by rheumatologist i had fibro, no more appointments with them, not even a booklet !


Yep! Same here! Given diagnosis, pain relief by GP, then no more appointments! I also have psoriatic arthritis and osteoarthritis, but it seems we just have to take our pain relief and get on with it, BUT , that's fine, there are so many people worse off aren,t there? At least we get good days in between the bad. It,s so good to talk here, hope you all have a good Xmas,and a very happy new year. Keep smiling guys! Xx


I am so sorry to read that you are suffering in this way, and I genuinely hope that you can find some resolution and relief to these issues. Most prescription medications for Fibro will contain an antidepressant as they are also used as a neural inhibitor which is supposed to help alleviate pain. It is supposed to work as a preventative, whereby proper pain killers i.e Ibuprofen work as a reliever drug. I hope that this helps you?

I want to wish you all the best of luck and I sincerely hope that you can find the answers that you are looking for.

All my hopes and dreams for you

Ken x

1 like

It seems to be normal to be dismissed after diagnosis. My rheumatologist said you've got it and there's nothing more we can do. Charming.


Mine was a Neurologist. His words as he showed me to the door were.`yes it is Fybromyalgia, you will have good days and bad days.`

When i went to my doctor i found that he had not even been informed by the hospital.


I got the I can do nothing for you from my GP and no referral! Make sure you get thyroid levels checked, and if they are OK, get thyroid antibody levels checked. Thyroid issues are a huge factor in many FMS sufferers but it does not often show until it gets to the hypothyroid state.

I take codeine phosphate for my pain as and when I need it but I realise some folk's pain is unbearable most of the time. Relaxation, pacing exercise and a proper diet with any top up vits or minerals you might need.

Sugar and fast foods are a huge enemy.

Good luck x


My rheumatologist prescribed Amitryptiline and I saw her twice, the second visit she hadn't even bothered to look at my blood test results. I was just told to do gentle exercise every day. I did try to explain that some days the pain is too bad, just getting out of bed is enough. It was suggested I go back to the GP if things get worse, and that was it! Hope things improve for you. MariLiz


Thank you all for your kind replays to my post . As I said I have the doctors on Saturday and will try to hold things together .I have been making notes of things I need to know . You have no doubt all been their so you will understand just seems that things goes from bad to worse .

Thank you all again . Hoping you all a very restful night.


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