Fibromyalgia?

[Sumayah]

Hello there!

I’m Sumaya, 25 years old, new to the group, trying to understand this fibromyalgia, haven’t been diagnosed in the UK yet, but diagnosed in Turkey. The pain has been going since October 2020, last week I had a telephone consultation with a physiotherapist, after going through all my symptoms she said that all she could think of is fibromyalgia. I have not been examined, not seen by a specialist here neither. I had brain and spine MRI’s done and everything is fine.

At the beginning my GP prescribed me Amitriptyline 30g daily before sleep. I didn’t take it until the pain made it impossible to sleep or function normally, it helped with sleeping, however the pain levels did not decrease. I’m not on any medication at the moment.

I have pain in different parts of the body, it is pulsing, burning, pins and needles, numbness. I do have days where I’m not able to blink an eye.

When talking to the doctor I said I really hope it’s not fibromyalgia because I don’t know how to go through the rest of my life with this day to day pain. The response was that fibromyalgia sometimes can be reversed and that some people have it for a while and when managing it rights it may stop.

Any ideas? Suggestions?

Thank you

[Josie-Anne]

Hi sumayah

countingmyspoons.com/2018/0... this should help you understand a bit about fibromyalgia

[Sally444]

Hi Sumayah. I don't think it ever goes away but managing it can reduce the symptoms. There are tons of great tips and advice as well as some great support from people on this website who understand so hopefully you'll find what works for you. Wishing you the best of luck. 😊

[Sumayah in reply to Sally444]

Thank you

[Hopefulfb2019]

I would insist on a referral to a rheumatologist, they often run their own pain management clinics which I found helpful. I changed my diet to a plant based one and try to consume as little sugar as possible, it has definitely made a difference, when I drink too much wine my symptoms get much worse, I’m still a glutton for punishment at times though.

I hope this helps ..

[Sumayah in reply to Hopefulfb2019]

I am trying, I’ve already mentioned it 4 times to my GP but the answer is let’s see how you feel with this or how you feel with that, as far as I know it takes a lot of time to hey diagnosed and I’m concerned that it may be something else

[Blun01]

Hi Sumayah

I was prescribed amitryptiline to help me sleep, yes it does help a little with that but then I find the next day I can’t keep my eyes open so I’ve since stopped taking it.

I take 300m of pregablin a day and up to 8 zapain a day. I am like a walking zombie and I’ve fallen asleep at work few times which isn’t great as I work at a school.

It’s catch 22, you either take pain relief and the extra fatigue is awful or you suffer in pain. There’s no inbetween.

I suffer with my eyes on a daily basis too, it’s never ending. They are either so swollen that I can hardly open them or so sore and can’t stand being in daylight as it’s so painful. I end up wearing sunglasses indoors and curtains closed. To go outside when they are like this is just unbearable.

I really hope you are able to speak to specialist and get diagnosed here in Uk.

Thinking of you and hope you get some relief soon.

[Midori]

Hi Sumaya, Welcome to the world of Fibro.

When I was first diagnosed I was nearly prostrate with the pain and exhaustion, but over the years I have managed to sort out which is genuine pain and which is the body's nerves and Pain receptors turned up to the Maximum.

As time goes by you will be able to tell the difference between the Nerves and the real pains, and your body will dial it down.

I don't believe we ever get free of it; we learn to cope with it and listen to our bodies.

Cheers, Midori