fibromyalgia

helend

Hi everybody hope you are having a pain free day. I havent posted for a while but just came back from the hospital and feel really down doctor thinks I have fibromyalgia whatever that is. I have rheumatiod arthritis in my fingers,hands,wrists and arms including my shoulders It has been a year now tried all sorts of drugs .I inject myself each week with metx still pain every day, an ache that never goes away even when I am sleeping. Now she thinks I should try another drug to help me sleep and have apain free night. Has anyone else had been told this cant remember what the drug was called amytropite or something another drug to add to the long list sometimes I feel like just stopping all the drugs and see what happens maybe the drugs are causing all my problems. sorry for sounding off and moaning I know there are a lot worse off people than me maybe when I wake up tomorrow I wont feel like crying thanks for listening helend

chris7

Hi Helen

Not sure if you are still about but sorry you think you may have fibro to content with too and have had such a rotten day! I think you are looking for the word amitriptyline lovey, several people take it on here as I think it does help with pain relief and sleep amongst other things.
Am sure that people who can help better than I will post here when they see you but just wanted to send a gentle hugs and hope you are feeling less tearful soon. ((( )))
Hang in there
Chris

fudge

Hello helend, sorry to hear you are so down after the visit to the hospital and what you have been told, another ailment to deal with as if you hadn't enough. Quite a few people on here take the drug you mention - amitriptylene which I can't spell, and seem to get help from it, I am sure they will come on and tell you about it. I won't take it, but we are all different in how we manage the effects of drugs.
The drugs you are taking will be helping your body fight against the RA, you don't mention if you are taking pain relief or anti inflamitories, both of them can cause problems, often though the benefits outweigh these.

You seem totally fed up of it all, understandable, I just hope you don't lay awake all night worrying, sleep if you can manage to get some is a big help, it really could be worth trying the drug she suggested.

I hope come the morning you feel a bit better, have a restful day and can think more positively about how to get pain relief and sleep.

Sorry I have not been much help, others will be along that can be, it's good you came back on - get some support and understanding.

Sending you a gentle hug

fudge

barbara12

Hi Helend
Im so sorry you have this on top of the RA, I do think that all the aches and pain come out at night, because you cant move about the same.
If the med is amitriptyline, I take it at night, and it has been a huge help.
Hopefully whatever it is you will get some good quality sleep very soon.
Take care of yourself, and let us know how you are.

coco67

Hi Helen,

i hope you are feeling a bit better today. i have fibromyralgia as well as OA and poly something in me feet, it is a shock when your first told but its not the end of the world i promise. a lot of fibro sufferers take amotriptoline(cant spell) at night time and swear by it so it will be well worth you giving it a go. you are welcome to PM me if you want to, i look in most days, just remember your not alone, hugs to you.

dreamdaisy

Amytryp is a wonderful drug for quite a few on here - I cannot say I have had the pleasure myself as yet but no doubt that time will come. Take it early, say between 7 and 8pm, that way you will get a better night's sleep but, more importantly, be able to function properly in the morning: if you take it too late you wake as normal but spend the day feeling as though you are shrouded in cotton wool. I hope you find that it works for you - as we all know on here we all react differently.

Fibro is the next logical step when one has arthritis (I think another term for it is chronic pain syndrome) I think it tends to affect the muscles more than the joints. Like you I inject meth weekly (and humira fortnightly) and no, the pain doesn't go. Why would it? Those drugs suppress the immune system in a vain attempt to stop it firing up and thus attacking us. They ain't pain dullers - the pain you feel is probably as a result of the joint damage which the RA has already caused, the meth etc is supposed to slow further damage, is all.

Make sure that you have adequate pain relief now: fibro is painful and you may need to review your pain meds with your GP. I wish you well. DD

socoolnanny

Hi, I too have fibromyalgia, was diagnosed with it well before OA and reactive arthritis and sometimes find it difficult to say which is causing the pain, discomfort and fatigue. Suppose it doesn't matter really as pain is pain no matter what is causing it. Have tried amitriptyline but it was not for me. Waiting now for pain clinic appointment as managing pain seems to be the only option at the moment. I know you will get much support and virtual hugs from this site as I have just by reading it. There is always someone (unfortunately) in a worse position and this helps me empathise and also cope with my situation better. Struggling with my weight at moment, have about 3 stone to lose, am sure it will help but boy I am always so hungry about 2 hours after taking gabapentin.
Take care of yourself, be good to yourself, set yourself little targets each day such as making a list of only five things and cross off as they are done. If you only do 2 or 3 great, add only that amount for the next day and so on. My main target is always to have the kitchen cleared before bed (even if hubby does it), i hate getting up to a messy kitchen it depresses me straight off and find the rest of the day so much harder, weird eh:} Debra

minky67

Hi Helend, this must be a strange,worrying time for you. Any new diagnosis is.
Fibro affects the muscles,tendons & ligaments. The brain says theres pain were theres isnt pain. Everything hurts, your stiff & the fatigue can hit you like a brick.
Knowl;edge is a good start as then you can get to grips with this & manage the condition yourself. Pacing yourself is a great tip but it takes time to learn when to rest & not just carry on til your no good for anything.
Pregabalins are what im on for this,along with amptripyline & various painkillers.
First thing i think is visit your GP & have a talk about your meds.
Pregabalins or gabapentins are the main fibro meds & they help by blocking the pain signals to your brain & they do help.
Amptripyline help relax your muscles & aid sleep.
You may also benefit from seeing a pain clinic as they are brilliant at sorting meds, help you understand how this condition works & show you how manage it.
ive had trigger point injections recently in my neck,ankle & wrist & they have really helped calm things down for a bit. Ive also got OA so ive got joint pain plus all that Fibro throws in :roll:
I hope things settle for you soon & you feel better about things.
Anything you want to know just post & i'll try to get back to you ASAP.
take care now, debs

magenta

Hi Helend,

How are you today? Hope you're feeling ok?

I have OA and Fibro. I've been on Amytriptilline for nearly 8yrs, now on 50mg. It's been a godsend for me. I'm also now on Pregabalin (Gabapentin made me like a zombie!). I definitely feel the Pregabalin is helping me with the fibro pain-just left with other aches and pains
If I can help in any way, you can PM me

Take care,
Magenta x

mariaqayum

Hi all, i was given amitripyline for fybro but no matter how early it took it the night before i was always zombified the next day, doctor changed it to gabapentin started on a low dose and built it up over a period of time and it was great for nerve pain along with fluoxatine and of course the arcoxia, i think its find something that suits you system, it took a long time to come up with a combination that worked for me im not totally pain free but a bit better then before, i find the fybro fog is getting more of a problem for me as its effecting my job now, i find myself phoning in sick more than i like to.

helend

hi thanks everybody for all your kind words.feel a bit ashamed for feeling so sorry for myself. :oops: i just dont understand the diagnosis does it mean the doctor thinks the pain is not real it feels real to me. I wonder what would happen if i stopped all the meds they are not working any way perhaps the meds are making it worse i am so confused at the moment. i need a break from the constant hospital and doctor appointments . i need to clear my mind and realise i am not that bad i can still work if putting up with a bit of pain is all i have to do i can do that. i need a good shake thanks for listening helend

rugbygirl

You are not imagining things. You know what you are feeling and its ok to feel sorry for yourself now and again. Its difficult when you dont really know whats wrong with you and why you are feeling like this but if you have a chat to the helpline team or people on here they will help you.

Dont push yourself too hard. It might be worth going to your doctor and asking him to explain it to you in simple terms. A good doctor will do that for you. You shouldnt stop taking the drugs without the advice of a doctor and if you look on the list of arthritis on the main page of this forum you will find fibromyalgia.

I have a book about arthritis that I was given and it recommends:
not drinking tea of coffee in the evening
relaxation classes
keeping active - swimming is very good.

It also states that it can be brought on by lack of or bad sleep, stress, and lack of movement can make things worse.

Take some time for yourself and try to put the worries of everything else behind you

dreamdaisy

I had to stop all the meds once, apart from sulph. I don't recommend it. We think they are not doing much but then we find out they are doing more than we realise. The trouble, I think, lies in the fact that what the drugs do manage to achieve is not enough. We live in an age where it is considered outrageous that any disease cannot be cured (and cures exist for conditions which are not diseases).

Doctors and rheumatologists do not know anywhere near enough about arthritis, its causes and how to stop it (or its related conditions either). It's not a glamorous disease, it lacks the drama of cancer, it's far too common for people to take seriously, it's impact on lives, however, is enormous, as you are finding out. We know about that side of it, believe you me. DD

julie47

morning helend

sorry to read that you are so down at the moment.

please don't stop your tablets, honestly they are helping you even though you don't feel they are.

I hope you feel a little better today.
Take care
juliepf x

wannabewriter

Hiya,

I'm in the process of being diagnosed with various aches and pains, but the consultant definitely thinks part of it is fibro (and OA in knees hips and wrist). As I'm still going through the tests for various other things, he wanted to keep any meds as low as possible. So I'm not on any painkillers (which I would NOT recommend - ouchy ouchy), but am on a low dose of amitryptiline and have to say it has made a WORLD of difference.
The other's are right - you have to take it early enough in the evening otherwise you won't feel right hte next day. Took me a few mornings of almost missing my train stop to get the timing right!

It's only a low dose, but has really helped.

Hope it works out for you!

bubbadog

Hi Helen, I suffer with Fibromyalgia, I have had it for 12years now and I can tell you it is real pain to your nerves! It is a serious illness and suffers can go through hell, I have been back and forth to hospital with the pain! had to have morphine and pethidine injections! It is a nasty illness, and can where you out!
Sorry if it sounds scary but wanted to tell you as it is! I have so many other health worries! as long as your arm! But don't want poor me label, hate it! their are alot of other people out there with worse of problems than me! Just keep smiling and fighting on! If you ever wanna chat about Fibro with me Helen just private message me and I will do my best to help you my fellow sufferer!Take care.Amanda, (bubbadog).xx

okidoki

hi, fibromialgia is not nice, it's not just one thing that gives you problems. it is a list of different things combined. i've had it for a while now. and there are days when it wins, big time, but take things at your pace. it will help you. if people have to wait on you let them. not everyone who has fibro are affected in the same way, we all differ with our ailments. the fibro fog is hard for me, even affects my speach.
my familly are great with me, and for what friends are left do wait for me.

have a nice evening.

countyfan

I am relieved to read all your comments on here. I have seen 2 different consultants at the local NHS hospital (1st was just a locum) She thought RA and gave steroid injection which helped to some extent but still had pain. When I went back to hospital 2 mths later the swelling in my knuckles had gone down and 2nd consultant thinks it's more likely to be Fibro. I seem to have some signs of both, as well as OA in C6C7 neck vertebrae! My RF was raised but no other tests pos for RA and as Fibro is usually diagnosed by elimination I don't know what to think. It seems from reading your posts that it is possible to have both and now it is about 4mths from my initial appt and the steroid effects have worn off I seem to have got swelling in my knuckles again.... :roll:
Just pleased to know that there are others who understand.