Anyone with fibromyalgia here please?

[PainPansy]

I’m currently being investigated for this after having a major exhaustion / extreme pain episode lasting now for almost a month

I’ve been unwell on and off for the last 2 years but it was always put down to long covid but this pain is new and I’m terrified

I’m in agony; nothing is touching it not even the Pregablin

How do people cope with this condition?

Not well, it has changed my life massively.
I spent years searching for some vitamin or mineral deficiency, it must be something else etc.
Unfortunately I've had to come to terms with the new me. I still get frustrated at all the things I can't do.

Where is your extreme pain?
There is a chronic pain board on here, you might find more answers there x

Extreme pain mainly in legs, like I’ve ran a marathon.
Lots of nerve pain also in legs, arms, feet and hands.

Im in agony

I was diagnosed 2 years ago, severe back pain and migraines. Pain down legs. Exhaustion. I use the techniques in the curable app and focus on meaningful rest. Enables me to live a semi normal life

Its always worse for me in winter. My pain levels always increase in autumn. The truth is once I have exhausted everything else to help with the pain, I end up with opiate pain relief. It's the only thing that helps with a major flare.

What else have you tried other than Pregabalin? Maybe ask your GP for referall to a pain clinic.

Do you all work with this?
Finding it impossible to work having so much time off all the time

I will have a look at those recommendations thank you

I was diagnosed with it about 30 years ago now. I've learned over the years that I manage it best through planning my weeks in minute detail rather than through medication. Look up the spoon explanation - it's cheesy but the best explanation I've come across.

I've also learned that you get peaks and troughs with it, which can last anything up to 6 years.

What works for me

1 painkillers. In my case naproxen and codeine

2 drugs for the nerve pain. If oregabalin isn't working for consider trying amytriptyline or duloxetine

3 heat helps me - hot bath, heated throw, hot water bottle

4 weighted blanket

5 distraction - TV, Audio books, cats,

6 eat regularly

I work from home and when I work with others, they're extremely understanding.

I have a bunch of other conditions as well, and generally tend to do what my body tells me, wherever possible. Though right now it is telling me to go to bed and I can't as I have another 4 hours to go of my shift.

Badly. Coping, sometimes just survival really.

I had to give up my career as I couldn't manage working and home requirements anymore. I'm very fortunate to be able to do some extremely flexible work from home now that I just do as and when I'm feeling up to it.

I haven't tried many medications for it. I've had chronic migraine for over 15yrs so always reluctant to try any other medications that could worsen the migraines. Good luck op.

Me but mine isn't continuous, I've not had a serious flare up in 12 years, minor one at the moment but it's stress related, stress that's time limited thankfully

I have had FM for over 20 years. I have had it so badly that have been able to get out of bed and barely been able to look after my children let alone do a job but I have learnt some techniques to live with it. I now have a full time job, and go out with mates and manage (to a messy point) the house work.
Some days are much worse than others but these things have helped me at various points in different ways. There is definitely no one solution and I suspect that everybody needs at least three or four things to make them manage.

I decided to stop all painkillers apart from when it was so extreme I couldn't sleep as they weren't touching the sides and I didn't want to be on them long term. Also it's now being shown that actually painkillers don't work for chronic pain.
These things have helped me ( in order of importance)

1. Moving about. I try and do as much exercise as I can. I do a whole range and nothing too often. So I do yoga, football, weights, lots of walking) sometimes starting off a session especially something like football or absolutely destroy me for the first 20 minutes but if I push on through after about half an hour can usually manage and then end up feeling brilliant. I avoided sport for a very long time because it hurts so much to start off with but it was well worth getting through that pain barrier.
2. Acupuncture fucking game changer. Need tl have quite a few sessions the first few will wipe you out a mav make you feel worse. Have a few sessions in a row weekly and then space them out. Go to a proper acupuncturist and not a physio and find an acupuncturist you really like.
3. Doing stuff that makes you feel good and distracts you from the pain and exhaustion. I sing in an amazing choir (I'm shite but enthusiastic), I go out with friends, I go to gigs.
4. CBD oil works for me (as do microdosing with edibles) but it's expensive and have to micro dose not get stoned!
5. Acceptance. Sound rubbish. But accepting that you will be in pain and then trying to distract from it rather than letting it overwhelm you and thinking about and talking about it all the time makes it less significant.

Most importantly keep trying stuff nothing will be a miracle care you'll need lots of different things to help but I genuinely thought I would never work again at one point and now I live a full if occasionally agonising life.

Sorry for the typos hope it makes sense

For me these things work to make the pain more bearable. However the single most wide spread change I made that has improved lots of symptoms is stop drinking cows milk. I'm not 100% on why, I don't use it for cooking/in cuppa but I don't actively look at labels.
After stopping drinking cows milke my overall day to day pain has reduced drastically.
Daily stretches/yoga help too. Only need to be 10/15min worth.

When I over do something though, or just having a bad day/week these help.

1. Warmth, via hot water bottle, blanket or similar.
2. Lots of sleep.
3. Ibuprofen
4. A warm shower, baths I don't find help.
5. Codeine.

Heated blankets
Hot baths
Sleep...as much as possible

Hi, yes, diagnosed about 25 years ago. Struggled for a long while and went part time until a few years ago. Am now back at full time, but work at home a lot. What works for me, and I'm completely dependent on it, is a small dose of amitryptiline- 30mg - at night. If I forget, I really feel it the next day. I've tried weaning myself off it, but the fog, fatigue and pain set back in pretty quickly. Yoga and doing a bit of movement, like walking the dog, also help. Plus massage as joints/muscles get really tight. And accepting when you need to just give into it and rest. Hope you find your way through this x

40 years of it this summer. Got glandular fever aged 12 and was left with fibro. Medically retired I. My mid thirties from a promising career but I couldn't continue struggling. I've been prescribed just about every combination of medication but what helped is opiates, oxycontin and oxynorm with lidocaine patches. It's had an extremely detrimental effect on my life, I'm fortunate that my parents never doubted me even in the early days when it was put down to growing pains, attention seeking, puberty, etc. I remember trying to describe it to my father when I was about 13 and the best I could think of was that it was like my blood hurt me because the pain was everywhere, I struck lucky again and married a wonderful man who is completely supportive and understanding. The very best thing to help me was a gp who was willing to go beyond the usual prescribing norms and doing a pain management course which taught me a pace myself. First step is finding a gp who is willing to try different approaches. Best of luck.