Anyone with fibromyalgia around, need meds help please.

[perfumedlife]

I've been taking low dose Amatryptyline for two years for my fibro and it stopped working a few months back. I realised I was having chest pains within an hour of taking them at night, and still no sleep was forthcoming.

Saw the GP, who is lovely, but honest in her lack of expertise in this area. She basically said they've stopped working, it happens, but asked me what she should prescribe next.

I saw a Rheumatologist for the original diagnosis, privately, and do not want to see him again. He threatend me with court for non payment of his bill when he had been paid by Bupa, just had bad accounting practices and was chaotic. When I finally got it sorted, he was massively apologetic, but I want nothing to do with him now. The problem is, the gp said he will know the next med on the list when the amatrypyline stops working.

I think he said he would try Gabapanton or something like that. If I can't figure it out, I will ask for an NHS referral to a rhumy, just am feeling desperate. Have had no sleep for six days, palpitations are coming back.

Was wondering if anyone with fibro had any ideas? Thanks x

PS I know she should look it up, it's just that she gives me credit for knowing more about this condition than she does and I actually stopped researching it as the symptoms were freaking me out.

Bump. Anyone?

perfume its a matter of finding the right pain relief for you and sometimes that take time. gabapentin is good.

Thanks folks, that's what the gp thought, will give it a whirl.

Im on Lyrica (pregabalin which i understand to be similar to gabapentin). I love it for how it helps my fibro but loathe it as i'm 3 stone heavier than when i started it. I've decided to come off it to lose the weight and discuss a new pain management scheme with my consultant.

Seek advice from a pain managment specialist.

Good luck.

Thanks hardhatdonned. I read Dr Mark Pellegrino's recommendations on Lyrica and the weight gain was what put me off. It's hard enough to stop weight gain with the mobility issues, without the meds piling it on. I am torn, feel like going without for a month and re trying the amatryptyline to see if it starts working afresh. It did work great for two years, I think my body just acclimatised to it.

How will you manage to get the weight off out of interest? Apart from swimming , I find it hard to get real aerobic excercise.

I'd second asking for a pain management referral & possibly a pain management course, I found the advice I got there on drugs & how they work was fantastic, & you might get some help with free acupuncture, which I've found helpful & apparently studies showed it can help FM patients

I can't help with drug advice though, I just don't get on with them at all, Amytriptaline had me in bed for 3 weeks, so I have to stick with the old tried & tested ones, & take as I need.

I did have Mirapex (pramixapol?) prescribed by the Dr who is meant to be UKs top FM specialist at Guys Hospital & there is a lot of good study results with it, but side effects can be pretty scary & I'm prone to side effects so didn't try it, others I know have had good results though, so might be worth you researching - ask around on the FMA UK board, always a good place for personal experience advise on meds etc

hope you get sorted out soon - feel for you :(

This might be a bit left field but it has worked for me. Amatryptyline didn't work for me and the GP didn't have a 2nd med to offer, so I have had none.

On advice of a friend, and in desperation, I visited a Kinesiologist. Dont know how it works, it sounded mad. However... it has worked for me. She pokes me about once every few months, and has given me a pile of supplements to take. I think the Zambrosa is a key part of my recovery, its really recommended for fibromyalgia.

I have made changes at work, to make things easier, have school holiday hours, so regular breaks, plus the kinesiology, plus the supplements, and the fibro is at bay. After being in constant pain, past exhausted, and feeling like I was 100 years old, this is fab.

Suggest if you can afford it you give it a try in case it works for you. I can't recommend it enough, as I have got my life back.

I've tried Kinesiology and it's a bit of a con imo.

As for how am i going to get the weight off, i have no idea, i am wheat intolerent and when i go totally gluten free i can lose a stone quite rapidlly so i think i'll be happy to do that and tone the rest up then reassess my meds from there.

I've tried Kinesiology too, & again it did nothing for me, but I saw my friend who was fighting an aggressive breast cancer have nothing short of miraculous results with it, so I think it can work for some - sadly not for me - the alternative therapies I've found most helpful are MLD & acupuncture, & I use aromatherapy a lot too

Ah thanks, lovely of you all to help, lot's to think about there. Will do a bit of research tonight.

I was a member of the FMA site for a while but started to feel my panic attacks return as I read up more about my symptoms. The worst thing about this illness for me has been the palpitations/panic. Pain is awful, but doesn't frighten me the same as heart pumping.

I love accupuncture, must go back.

Hi...severe Fibromyalgia sufferer here along with other illnesses

I take Amitriptyline, what does were you taking?? It still works for me, however i had a 9 month break while i was pregnant and when i went back to it, it worked again, so maybe a break is good if there is no other option?

TBH my GP here is terribly crap at my fibro, and has the same thing where, when i needed better pain meds, he gave me Tramadol, which i wanted to try but at the same time said..unless you can think of anything else you want to try?!! Emmmm..I'm not a GP!!

I have acupuncture which is great for it too, and i was suggested Reflexology however i have plantar faciitis (sp) and did NOT want to try it

Hope you get some help xxx

Hi LisamumtoJake

I was on 25mg Amitriptyline. It worked a treat for two years, but these past few months I have had poor sleep, chest pains within an hour of taking it at night and the awful foggy hangover all day. That was new, and totally debilitating. In order to drive ds safely to school, I had to be up for two hours, bathed and consumed a full pot of coffee. I felt like I was wading through treacle.

I definately need a referral to a pain management clinic.

perfume have you had your pottasium levels checked??? -

I ask because mine kept coming up a bit low, nothing major, just mentioned a couple of times at hospital visits - I was put on a high BP drug, which had awful side effects for me - I ended up in A&E, they thought I was having a heart attack - turned out it was a panic attack far worse than I'd ever realised they were & I've a lot more sympathy now for sufferers :( -

anyway, they also brought up my pottasium level, it was lower still as the new BP drug leached pottasium from the body -

low pottasium causes anxiety & panic attacks - I'd nevr had a proper panick attack before that, but did used to get what I can best desribe as my body physically over reacting to any minor stresses or shocks - you know the sort of thing - car beeps its horn a bit to close & you go to jelly, whilst the voice in your head is going WTF I'm not scared of THAT

anyway long story short - they changed my BP drug to one that INCREASES pottasium & I've not felt that way at all since :)

might be worth you looking into :)

rockinhippy I think it's about the only think that's not been checked!

I have lost count of the amount of trips to A&E I had. Sinus Tachycardia. Panic, caused, as you say, by absolutely nothing major, like a door slamming.

I had the 24 hour tape on, saw a cardiologoist, had the echocardiogram, all normal, apart from the rapid heartbeat which he can find no cause for.

I'm seeing the GP on Tuesday, am going to ask her to check that. I take a low dose beta blocker for the palpitations/blood pressure, Bisoprolol. To be fair, it has been excellent at calming things down, it just seems to me that since coming off the Amatriptyline and not sleeping, things are getting worse.

Confusing or what!

Then there is the fact I had my thryoid partially removed, overactive, and I often worry it's started to work and be over active again, as that made my heart race.

Gawd

I need a co ordinator.Bamboozled.