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Fibromyalgia Action UK

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Hello to everyone in this wonderful community

fran-anne3 profile image
8 Replies

I have only very recently been diagnosed with Fibromyalgia but reckon I have had some of the symptoms for 4 years. i recently changed GPs and found a Dr who listens and cares. I think i am going through a bad flare up for the past 4 weeks and the pain, fatigue, sleeplessness and feet cramps are taking their toll. I would love to know if this will pass or is it going to mean more medication to ease these symptoms? As I already take opiates for my arthitic pain and I cannot have anti inflamatorys because of stomach issues I think this could be a difficult path. i was on Amytriptaline until recently but it  left me with a hangover. My GP tried Gabapentin but no change so now he has started me on a low dose of Pregabalin which is helping a little. What happens next?

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TheAuthor profile image
TheAuthor

Hi fran-anne3

Welcome to the forum and it is wonderful to make your acquaintance. I have pasted you a link below to our mother site, FMA UK which hosts loads of useful Fibro information: fmauk.org/

I am so genuinely sorry to read that you are experiencing a flare up, and usually it will pass but how quick is impossible to say! I genuinely hope that your Pregabalin helps you more and more as your dose increases.

One of the things that I use when my pain gets too much too put up with is a TENS Machine, and I find this very useful for pain management. I do not know what referrals your GP has given you but it may be beneficial to discuss physiotherapy and / or pain management with your doctor?

I want to genuinely and sincerely wish you all the best of luck, and please take care of yourself.

All my hopes and dreams for you

Ken

Sorebones profile image
Sorebones

If you have a crystal ball we'd all love to know the answer. Most of us have been where you are, and I can honestly say that it's a matter of trial and error with meds as we all react differently. It is a strange scenario in the medical world but I think that once they find out just what causes Fibro the treatment may be more uniform.

All you can do in the meantime is learn as much as you can about Fibro. 

Like you, I'm on opiates for arthritis and can't have the anti inflammatory drugs did to stomach issues. My GP prescribed me Ibugel Forte for painful joints, and it really helps me. It cleared up the old arthritis of Fibro problem for me as there isn't supposed to be joint swelling with Fibro. 

Please feel free to let us know if you have anything that helps your Fibro 🐸

peck profile image
peck

Hello and welcome to our forum.I am certain you will enjoy.I can't tell you what will come next...wish I could.I wish you the best and this flare ends soon.Be blessed.Peck

lynsu profile image
lynsu

Glad you found a gp who listens and understands and is trying to help you. l dont know how common it is but lve been getting foot and hand cramps, spasm at times over last few months. Last night in bed my right foot felt as if it was being crushed, going up the leg a bit also, do you get the pain in the top of the foot, l was half asleep and could hear myself, agh, oo, sat up feet on floor, trying whatever. l guess gels and heat patches dont help you, l find them quite good,  although with cramps its difficult due to suddeness of it.   l also found amitrip left hangover, now just take 5mg a few times a wk at night l hope the preglabin keeps settling it down a bit more, might stabilise it, till its more tolerable and you can sleep better.  good luck

lCllCl6 profile image
lCllCl6

Sorry to hear you are having a lot of pain. I found a foot cream at Walgreens that helps some with the nerve pain it's for diabetic nerve pain. I also found magnesium oil helps, I try a lot of home recipes because of all the bad side effects from meds the doctor gives you. I have had these problems and was diagnosed  with fibro for years, but  the doctors just tell me my pain and other  symptoms  are just because I am depressed. Most of the doctors  in Missouri  don't know much about fibro and all their symptoms so it is easier just to give you a antidepressants.   That is why this group is great with knowledge  and understanding to help each other through good days and bad. My prayers are with you always. 

Hi

This forum is great for support, I think you'll be pleased you joined.

I'm sorry to hear that you are a fellow sufferer.

I find that symptoms never go, but some days/weeks are bare able and like you said I then get a really bad patch. I've tried all the meds that I can so far and had reactions to all (allergic to opiates). I use Volterol gel and hemp tablets. The hemp tabs have chemicals in like marijuana and I think help me to relax, I take them in the evenings. As I don't get much sleep I listen to audio books, so I don't fret over things.

I am sorry to say there's no cure as of yet and we all seem to react differently to the meds were given. At the pain clinic I was told not to try to fight it and carry on as normal.... fight it another way, with relaxation and frequent rests. Seems like we're giving up, but it's a case of pacing yourself and doing what you can each day. Too much makes it worse and so does stress.

I know you'll get a lot of good suggestions from the lovely people on this sight, who are very helpful and caring.

Good luck and take care.

Best wishes.

Greenpeace profile image
Greenpeace

Hi fran-anne3  ,

sorry to read that you're having problems finding the right mix of drugs to manage your Fibro.

As some of the other replies say, it's a trial and error situation finding out what suits your particular situation.  At least you have a good Dr who is willing to work with you.

Amytriptyline when it suits is a very good med for Fibro.  I was wondering for how long you took it? The  dose has to be tailored to the individual. Also the time that you take it.  I started with 10mgs and I took it first at 8 o'clock and I had a great sleep but felt drunk the next day.  I changed to taking it at 6 p.m. and that worked a bit better.  I stuck at that for 4 weeks before the "hangover" effect began to get better.  

My GP said he wanted me to get up to 25mgs, and every time I increased the dose it took about 3 weeks to get used to it.  The thing that made me stick at it was I was getting a decent sleep on it, and that helped with the pain.

I gradually worked up to where I am just now, taking 50mgs and I take it at 10.30p.m. and I don't have a hangover the next day.  In fact I forget sometimes that I take it.  I've been on Amytriptyline for + - 5yrs now.

Everyone has different routines and home situations, and you have to try and work out something that suits your routine.....it isn't always easy though as we all live complex lives.

As Ken suggested a Tens machine works for some people, and heat pads, cold pads, rubs and gels.  Hydrotherapy, and Guided Meditation works for some people too.

The problem with Fibro is, it can't be cured, or fixed, only managed, and it is only by trying different mixes of things that we can hopefully find something that works for us.  Hopefully in time, you will work with your Dr. and find what works for you.

Good luck, and take care.

GP. 😊

Miswhip profile image
Miswhip

Hi im sorry to hear about your flare up but can assurevyou it will pass.ive only been recently diagnosed myself but have suffered for years aswell i suggest you go backmon amitrytiline as they are a painkiller and a sedative.if you take them 4 hours before sleep you will get use to it and stop the hangover i take gabepentin 3 x a day and i have a 50mcg fentanyl patch which help through flare ups. A for tiredneess do some research on high fibre foods like porridge bananas wholemeal bread n green veg will help i hope this advice has been usefull im about to try bioglan and will update u soon .

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