Fibromialgia/cfs

[Garden987]

I stay in touch with the Fibromialgia site and have not read anything that actually helps other than pacing. Have had to cancel ,two appointments at the clinic in Bristol due to UTIs.My question is has anyone found anything that helps or would it be a waste of time.Have ET so know about pacing and feeling dreadful and having to,stay n bed. Some occasional pain but I get the impression you are all struggling but have just to go through it. Don't want to go so,far just to be told there is nothing that can be done. Am in bed right now feeling quite poorly - GP doesn't know what's wrong . Not making much sense am I? Your thoughts would be appreciated.Hope you are all as well as possible. Mary

[Dizzytwo Moderator]

Hi there, nice to meet you sorry your struggling at the moment. You are not alone I'm going through a rough patch myself to be honest I hope some of our very helpful members may be able to offer you some support and friendly advice shortly.

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Momo

[Golfer15]

Hi Garden987, sorry you aren't feeling very well. I was diagnosed with fibromyalgia about 4 years ago but I dont get too much pain so I dont know if it is more CFS. Anyway I dont really have much advice for you but using the right medication does help. I started on Duloxetine before Christmas and it is helping as I have more energy. I also take amitriptyline which helps me sleep and I have 3 monthly injections of vitamin B12. So make sure you get the right meds. It can be trial and error. Good luck.

Davi

[seren1970 in reply to Golfer15]

Hi golfer15 I hope you don’t mind me asking do you get b12 shots as your b12 is low x

[Golfer15 in reply to seren1970]

Yes my B12 is low, well it was borderline so I had to insist on getting the injections as the gp didn't want to give them to me. It does help me. Insist on getting a blood test then discuss the results with the doctor. Good luck x

[seren1970 in reply to Golfer15]

My are higher than normal I’ve heard you can get b12 shots done privately at 29 every three months I was wondering if it would help even if levels are good thanks for your reply x

[Midori in reply to seren1970]

Overdosing on the B vits can have side effects.

[seren1970 in reply to Midori]

Ok thank you 😊 xx

[seren1970]

Hi the only advice I have been given by doctors and specialists is to not over do things I hope you soon get some relief xx

[Jamie1965]

To be honest everyone deals with things in different ways everyone has different pain thresholds I have medication and was at pain management but nothing seems to help long term some people manage with excersize some off us struggle to walk you can only do as stated trail and error to see what suits you but always try to make appointments you never know they might be able to give you something that works for you

[Judithdalston]

I went down the route that some fibromyalgia is caused by undiagnosed or undertreated hypothyroidism, I was hypo but infact discovered I was undertreated and getting worse. To check for this you do need blood tests that are generally more comprehensive than doctors do : FT 4, FT3 , total thyroxin , TSH plus folate, ferritin, b12 and vit D done by Medichecks or Blue Horizon labs. If you get results put them on ‘sister’ healthunlocked site Thyroid U.K. I am much better following their advice as had lots of pain, stiffness, exhaustion, lack of strength before...not cured but have a more acceptable life than 24/7 on sofa that was winter 2017-8!

[Popppi]

Hi garden987, You said you known how to pace. Can you please tell me how, ive been trying but just can't manage it xx