My Fibromyalgia pain is getting me down - painkillers not working, any suggestions?

[saltire]

I take Co-codamol 30/500mg, I currently take them 4 times a day. They make me feel really light headed and sickly and very sleepy.
If the pain is very bad (which it as at the minute) I take Syndol at night - thanks Greeny for that suggestion.
I also take 20mg Amitryptiline and 500mg Ibuoprofen

None of this seems to work, I am in the throes of a really bad flare up just now,which has been going on for almost 4 weeks, and am back to the Doctor on Friday. Has anyone had any luck with other prescription painkillers?

Have you tried or perservered with a tens machine ?
I use mine a lot for the pain i get all down my arm from a trapped nerve-not the same i know but i have an ulcer from so many brufen and had to think of alternatives.
Didnt do much at first but now ive learnt how to use it proporly its great.

I did try a tens for a while, but it didn't seem to do much good. I have foundthe Fibro has really flared up the past few weeks and the pain is really getting me down.
The problem is the pain isn't in one place, it's all over - feet, legs, hips, shoulders , neck, arms hands, fingers . I don't know if a tens would do much good if I tried it again

saltire - how did your doctor diagnose that you had Fibromyalgia? my doc says I have a very mild case of it but not prescribed drugs. My friend had it very severely and Im not sure my sypmtoms are anywhere near as close to what she had - she couldnt even unscrew a bottle top the pain was that bad xx

Wolfgirl - it took almost 9 years to get a dignosis. Fibromyalgia is a collection of different symptoms. I had painin my shins, and no where else for years, then four and a hlaf years ago the pain started everywhere, BUT, I could go weeks, months even without a flare up, then it would come back with a vengenance(sp).

I got referred to the rheumatologist. She did a basic test, pushing on various points on my body, which were bloody sore when she pushed on them. It affect people in different ways, my friend has it and is in a wheelchair because she can't walk, yet gets no pain whatsoever in her arms or hands, I often get headaches, forgetfulness, chronic fatigue and IBS with it, but again, not all the time. This is one of the longest flare ups I have ever had.

this website is good, and they have a very good forum as well. Also ask your GP to refer you to a Rheumatologist

Oh Saltire is it really bad again, mine is beginning to ease off after a bad flare, heat is the only thing that seems to ease mine, if I get the slightest bit cold, the pain statrs up again, I hve had a really bad shoulder (drove to Scotland in May think I overdid it) and the Dr is now going to give me a cortisone into it as it has got so bad.

Hi shosh, keep meaning to email you, but as I said, I get forgetful then remember at 2am!.

It has been really bad recently, the thing is because I'm not working I've got nothing to take my mind off the pain. When I was CM ing I did some pretty bad flare ups, but having the mindees distracted me, so don't know if it's actually got worse, or if its just because I'm not thinking of naything else.
I suppose being bored witless isn't helping!.

This flare up is bad though, it's even affecting my sleep!

I had taht a few weeks ago I was lucky to sleep from midnight til 4 went on for weeks, now I cant stay awake! as soon as the kids go thats it sofa here I caome, you are right tho, when the kids are here I just get on with it, always feel worse at weekends.

Hi Saltire, I don't have fibro but know of the condition and symptoms through a friend.
I suffer from chronic pain all the time and although am currently off medication have had some pain relief success in the past with Tramadol when taken in conjunction with Gabapentin for spasms and Amitriptylin at 50mg for sleep at night. I would try upping the Amitriptylin dose if your dr agrees and try tramadol. I hate co-codamol too.

To be honest (and please don't shoot me down in flames everyone) the best thing for me and the friend I have with fibro, has been using cannabis in the evening. I know the chemical type drugs seemed to exacerbate her fibro more.

I hope that your flare up calms down soon as constant pain is awful especially when you are trying to be a Mum too - you have my sympathy x

Ask your GP for a referral to the pain clinic at your local hospital. They can give advice on medication and on alternative techniques for coping with the pian.

Echo pretty much everything Wisteria has said. My dh probably has fibro (has never really had a firm diagnosis, because - to be quite honest - clinicians do not care about conditions they cannot treat). The best combo we ever had was tramadol and amitriptyline I think, and a hospital pharmacist took him off it as the combination (at the relevant dosages) can cause psychosis. Wisteria, you might want to double-check on that?

If at all possible, I would avoid moving to a heavier dose of painkillers. My dh is at the end of this particular road, having been on liquid morphine for well over a year and now rotating methadone and dihydrocodeine. You don't want to go there. It doesn't help, it's probably made things worse, and now we don't know what the hell to do, as any withdrawal makes the pain intolerable for dh.

I'm afraid that I'm bang alongside Wisteria in that the drug that helps best is cannabis. I don't really care if anyone wants to shoot me down and tell me that it's harmful. It's not more harmful than morphine, my friends. Drug trials are starting with a cannabis-like agent, but targeted at MS sufferers at present.

A referral to the pain clinic could be good, TENS is an excellent suggestion, have you tried acupuncture? this is a good book which I haven't read as much as I should have, but one of its major recommendations is for heat therapy, mainly hot water in the shower. Have you tried that at all?

Incidentally, I'm convinced dh doesn't really have fibro because he has no good days, no flare ups, it's just bad 24*7. I'd welcome views from diagnosed sufferers as to whether that's consistent with their symptoms.

Hi Trib, has your dh had major surgery at all? I had 2 back ops and so mine is a result of heavy scarring and intrusion plus the underlying condition. He sounds more similar to me in the no major flare ups but constant.

I came off meds for many reasons but mainly because I believe that when you have a chronic pain condition; like it or not you will be stuck with it for life and there are other ways of dealing with pain, Saltire I would second Trib's recommendation to the pain clinic, it helped me a lot and helped me out of a bit of a rut too (common side effect of chronic pain conditions). I was on tram and amitrip plus gabapentin for well over a year at a fairly high dose and had no ill effects. It was recommended by the pain clinic, consultant and gp. Can't say I'm aware of the psychosis link but then cannabis is supposed to induce that too and I have no symptoms!

My mum is on a new group for fibromyalgia which she seems to be finding really helpful - she's away this week, but I will get the link at the weekend.

The whole thing pretty much seems to be what helps one won't help another, so everyone is combining what they have tried, so you can work your way through the various things to find what eases it for you.

Thanks everyone.

Trib - I do know of people who have Fibro and have pain 24/7. That website I linked to has a good forum, some people on there can't get out of bed most days. Am I correct in thinking your DH has a wheelchair? There are Fibro sufferers out tehre who are in wheelchairs, I'm actually thinking of going to see the physio and ask for a stick because some days I do find it hard to walk. When I was childminding I had a buggy to hold onto, which was great.
I don't want to have to move to heavier painkillers, I just feel that the ones I'm on I'm taking for the sake of it. They really don't do any good. My old GP told me that I could increase my Amitryptiline does at nay time , so I might ring my new doc and tell him I'm upping it by another 20mg.
I had a great GP in Fife, he was really understanding of the condition, got me wrist splints for whne the pain is bad, got me referrals etc. The new doctor I have only seen twice, once for my new patient appointment, and once for my depo injection. I did try and discuss it with him, but he didn't seem bothered, although I am waiting for a referral to the pain clinic to come through, been wating 3 weeks.

I will try and get that book Trib, I have one called Living with Fibromyalgia by Christine Craggs Hamilton, its quite good.

I got the link from my mum here

Fakeblonde, you said you had a trapped nerve down your arm. I've had that for about 4 weeks now and the pain has been agonising. I'm now on Neurontin which is helping at long last. Have you tried that at all?