Hi everyone!

[Torti68]

Hi everyone! I hope you are as well as can be. After having covid for the 2nd time in June, I've now been diagnosed with Fibromyalgia. I already have CFS so this is a double whammy. I cannot seem to get the pain under control especially in my legs. I seem to live on painkillers but they don't seem to work though. Is this something we just have to live with?

[Hazel_Angelstar Administrator FMA UK Staff]

Hi and a warm welcome to the forums. You can find general information on fibromyalgia at our website fmauk.org and our patient information booklets at fmauk.org/publications

Medications do not work for everyone, and even when they do help often they only take the edge off and do not take the pain away

So unfortunately, yes, there is an element of having to learn to live with it. There are many ways you can try to manage your pain - and it may be worthwhile asking for a referral to a pain management programme

I use pacing, keeping active (lack of activity and stiffness increases pain), heat, cbd oil /teas /creams, mindfulness, meditation, distraction, holistic therapies, weighted blankets etc. Some things help better some days than others, and it can be a bit of trial and error to find what works for you

The pain toolkit is a good resource

[Cat00]

Painkillers don't work on my fibro pain and I have chronic migraines so I'm only allowed 8 days a month with painkillers anyway. I've come to see this as a good thing though as It means I have not become dependant on any painkillers and so don't suffer the myriad of side effects. Also I think doctors don't spend the entire time trying to take you off them too.

[Yassytina FMA UK Volunteer]

Morning and welcome, sorry to read you have had Covid twice, I had my 1st dose of it in July and felt horrid , I too have CFS with Fibro so I can understand some days how you must feel, I do have painkillers but I try pacing myself at home most days , when pain is worse I take quite a few mini breaks during the day and try and relax my body as best I can , even having drink looking at a a magazine, listen too the radio ,just trying too switch off , best time for me is after tea when I can stop completely ,having a warm soak, with it getting colder wheat pad or my hot water bottles I use . There are days when Cfs kicks in and I’m totally washed out and I have too rest and sleep , normally I kick again the next day, but with this 2 conditions it can be hard planning anything as I really do take it day too day. But always look forward too the better days which keep me positive, I agree with Hazel pacing is key, take care x

[Torti68 in reply to Yassytina]

Thank you! I feel a bit better knowing that someone else knows exactly what I'm going through x

[MEguy]

I think it is neurontin or gabapentin for pain in ME/CFS. Ask your GP