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FIBROMYALGIA AND SUICIDE - Carers UK Forum

FIBROMYALGIA AND SUICIDE

For issues related to specific conditions and disabilities.
My caree was diagnosed with Fibromyalgia in 2001 by a rheumatologist, my caree was prescribed Pregablin (Lyrica) to help with nerve pain and Amytriptolene to help with sleeping.
Since then very little has been done, not seen anyone in relation to Fibromyalgia.

There has been no support given, my caree is frequently in a lot of pain, which leads to not being able to sleep, tiredness and extreme fatigue.
This has led to agoraphobia and severe depression, my caree is frequently just not able to go out socially too tired or in too much pain.
My caree is locked in a cycle of pain, takes painkillers Tramadol but that does not get rid of the pain, dulls it but does not get rid of it.
The G.P. has done absolutely nothing referrals to any specialist, rheumatology or the pain clinic.
Despite a trip to A&E, 2 years ago where my caree freely admitted, they could not stand the pain and tiredness any longer and wanted to die.
My caree saw the crisis team, given a few leaflets, there was no follow up by mental health services.

A letter was written to the G.P. about this incident but nothing was done by the G.P. , fibromyalgia help and support, mental health help and support, just nothing.

I have looked and asked around just seems to be no local support group for Fibromyalgia, you are just to cope on your own.
2 years on I feel my caree is at the same stage Rock Bottom and I think one day something bad will happen-Suicide?
I am helping the best I can but there just seems to be no help and support, proper mental health support, any therapy is limited 6-8 sessions then again you are left with no help.
Fibromyalgia is a life long condition, there is no cure.
And it is a very misunderstood condition, some days you feel well, others you can barely get out of bed.
Support groups ?

May not be one locally but :

http://www.fmauk.org/contactsmenu/supportgroups

Regional Coordinators.

Our Regional Coordinators below can put you in touch with a group nearest to you.

Please fill out the form after selecting the RC for your area and someone will get back to you as soon as they can.

If looking for your nearest support group please include your post code.

Please remember that they are volunteers with fibromyalgia and may take a few days to get back to you.

If someone does not get back to you after a week, please contact the office.
Tried that there is a support group about 20 miles away but in a different county, West Yorkshire not North Yorkshire, so a different CCG Hospital etc.
I have heard there is more help in West Yorkshire but you have to live there to access the help, Postcode lottery.
My caree can barely get out of bed, having to travel to another county to get help, not possible.

The G.P. does nothing, Social Services don't care, it just shouldn't be like this.
I have Fibromyalgia also and my GP has been less than sympathetic. I get two codeine daily and otherwise Paracetamol and Ibuprofen. I was on Gabapentin but it made me balloon in weight, gave me heart problems and actually made things worse. Amitryptiline was a bad fit for me also. So I quit them both.

Things that do help for me are Epsom salt baths, voltarol, tiger balm, Codeine and CBD oil (but very expensive in the long term), diazepam (the doctor only occasionally gives me some). Other things that help are keeping hydrated, magnesium supplements, Kalms and spending a little more on things like mattress covers with extra cushioning and pregnancy pillows (they help when you need extra padding for pain in back, neck and legs).

I am the carer and sadly I've found its honestly very difficult to have any help. There are times I've wanted to scream and cry. Sometimes I've cried because the pain in awful. The worst part is knowing that other than those that love me, nobody outside cares. They see a young guy so I can't possibly be in any distress or have problems. Nobody helps when I'm clearly struggling outside. But it's not impossible to live with it. It does get better. I've found I function best by talking to my family about it. But don't let it beat you down. If your doctor is not helping or you're having no understanding from them... Change your GP. Get a referral to a pain specialist. Nobody will do this for you and you're beating your head against the wall otherwise. Even though it feels like you have nothing left, you have to fight for yourself. The NHS is pretty terrible with this and CFS. They keep giving the exercise and deep breathing exercise advice along with CBT. For me, it didn't work. At all. But if it does, try it. Everyone's different. I find blasting music in my ears helps when I'm angry. Using the anger to push through it helps. It is so hard... And the pain can be extreme. But you have to help yourself help yourself. If that means annoying the crap out of the health services until you get seen to, do it. I can't excuse the mental health response from them, but I'm not surprised. Depending on where you live, it may be worth getting in touch with a charity representing people with chronic pain issues and asking for their help.

And a word of advice is this... Don't get stuck in the mindset of the support groups as sadly they can be very self pitying and toxic. It's okay to have a moment where you appreciate how it gets you down and how much it hurts. Don't force yourself to feel anything you think you should feel, just roll with it. But don't get stuck in the victim mindset. You do have to fight for it. And just because some people don't understand, it doesn't matter. The pain is real, and their opinion doesn't matter in the end.

Sometimes I find writing down things and making lists helps. And I still try my best to learn where my limits are. Overdoing it is too easy. Whatever you think you can do, do two thirds of it and only continue if you're feeling you can. Because you can always increase what you do if you feel fine. Overdoing anything for even a little can last for days in pain. I hope that helps.

It doesn't go away. And there's no magic pill. But you have to do what's best to help your life go forward. Even if it means changing around doctors and a bit of hassle. Because at the end of it all, you're the one that feels it. They don't have to.