I need more advice on fms

[becka12]

Hi, I'm 22 and have been diagnosed with fms and rheumatism in my hands by a rheumatology consultant, i understand that the pain im in can vary but I was wondering if there is a reason as to why it lasts so long. Im in constant pain all over an there are days were i can not walk to the bathroom with out help and suffer with really bad headaches. Is it normal for me to feel like a burn spot sensation when the pain is really bad?, also i have to click all my joints as they lock and i can not move them until they click (i know that sounds disgusting.

I suffer with back pain but over the past week or two the pain has been that bad i can not move, walk, stand up or sit down on my own i need help :(. I have been put in 400mg of inbuprofen and 10mg amitryptiline but as they care not working my gp has higherd the dose to 20mg amitryptiline and put me 0n diclofenic, they worked for the first week bbut gradually stopped working and I was wondering if there is anything i else i can try?

I also have problems sleeping there are times were i feel tired but can't sleep due to the pain and days were i feel really tired and do not want to do anything

Thanks

Becka

[becka12]

thanks for your comment, i volunteer taking disabled children to school and picking them up, i knows its a couple of hours a day but ive been advised to do excersise and i can even be in pain bad doing that and tired, i found out i was aneamic when i first started my periods as i suffer really bad with them and recently ive read that fms could be part of that :/. I have days were i feel i cna do things like cleaning up etc but it takes me hours to do as i have to keep resting :(. I know im young and my gp said im too young to have fms but ive been diagnosed by a rheumatologist as they thought i has RA with the way my joints crack, if i dont crack my back at the top of the stairs then i have less sleep than i already do de to more pain :(, ive been back to the doctors and im looking at changing as they just keep giving me perscriptions and have negative blody language when speaking to me like they dont want to listen...

I have days were all i want to do is cry as i feel emotional for some unknown reason. I struggle some days just to wash my hair as my hands r swollen and certain parts of my legs swell up if ive done to much in that day.

thanks again for commenting Christine I just didnt know who turn to for advice as i dont get none from my gp xx

[vickymar]

I am lucky enough to have a brilliant GP who listens but I also have the support of the Chronic pain management clinic at my local hospital. I have a named nurse who i can phone at any time even if I just want to have a moan and the doctors there are great as well. They have access to many more types of help then the GP's and are always willing to try new things. So far I haven't been lucky enough to find anything that works but they keep reassuring me that there is plenty more to try so i'm not to give up hope!! Maybe you could get your GP to refer you to the pain clinic in your area? Just keep asking until they do. Good Luck and don't give up

[Pat16 in reply to vickymar]

Just to say that I asked about a pain clinic about 15 years ago and was told that there was about a 44 week waiting list. By the end of that time I wouldn,t have been able to get there and still couldn,t. I do keep asking my doctors if there is anything else I can try but I am told there is nothing else available. Like everybody else waiting for a cure. Best Wishes Keep smiling

[jahni]

i also have a good gp, and the amount of pain varies between us all,everyone pain is different so it is a trial and error until you get the right amount of meds to help, i am on 75mg of amytripine which i take at night also i have phengean to help with sleep, i cant take diofeic or imboin so i am on mexican, gapstpentin which is kinder on my stomach and works for now,try telling the gp how much it hurts, i was sent to a physrist with my previous gp ass he thought it was all in my head but in the end i changed gp and found one that was helpful to me, it is hard to have this fb because the effects are so different to each person,the whole thing brings you down which then makes it worse as stress make it worse, it takes a while to get meds just right so if it not working you must tell them as it is your body and the only person who knows it is you

[philippa47]

All I can say is get of the amitryptiline this can cause heart palpatations I am on gabapentin 100mg 3x a day but can have 300mg 3x a day if bad also steamrooms and suanas are great if you have one localy

[becka12]

Thanks christine it does take my focus off but when i rest i feel it more in my muscles it feels like my whole body is just aching all over, i am looking for another gp in my area and i get alot of support at home but by sister as my mum and dad are both ill so i try to help them as much as i can.

Vickymar i didnt know there was a pain clinic as i have not had advice from my gp just been given meds.

Jahni ive tried telling them how much it hurts but they just look at me as though im imagining it and its in my head which make me uncomfortable and i stop explaing, it makes me feel as though i am being judged because of it.

Philippa i have a slight heart murmur do you think the amitryptiline will affect it, its only a very slight one but before i had these meds it felt like my meart was thumping.

Thanks everyone for all your advice hope use are all okay.

[ginge]

i also dont like amatriplyn doesnt agree with me or gabapentine, i now on pregabaline, and i agree you need to change drs, my old one said it was all in my head and i was told that by a nurse and also pysio..i moved to cornwall and it was a whole diferent kettle of fish. i now have a young very good g.p. who has tryed everything in meds with me. i got the pain clinic also thats a good help..i will mention though when i was living up in stoke on trent i saw a nurse for another matter and she asked if i had anyother ilnesses, i said fibromyalgia and she said and whats that all about i never heard of it....charming...it does make you loose faith in medical profesion....its took me 7 yrs to trust them again........and my old g.p. was that fed up with me going to him with the pain side and loads of different things [ that i now know goes with fibro ] he sent me to a senior g.p. in the hospital.his first words to me was.........YOU DO NOT HAVE M.S.....my gp had told him in a leter that i had told him i did.......

[ShazzaN]

Hi Becca

Sleep problems are normal for FMS, ive just been on a chronic pain course and have followed a few things that have helped a little. Try not to sleep in the day, I know this sounds stupid when you are absolutely shattered but it does work. I also try and keep moving and try to do some exercise as the longer I sit or lay down the more it hurts and the less energy I seem to have. I also find my FMS is worse with stress too, it really is a horrible condition to have to live with on times. The things that most annoy me are the tingling in my arms, the twitching muscles and restless legs, tiredness and fibrofog.

Im currently in the last year of my degree which has been terrible on times due to lack of sleep and fibrofog, I find I suffer more in the winter than in the summer and with extremes of temperatures too. Your GP should be able to provide you with stronger medication. I take co-codamol 30/500 and Tramadol to go to bed. I didn't find the amytriptiline of any use as it made me feel thick headed during the day, some people are taking pregabalin/gabapentin.

Hope you can get something stronger sorted and that you feel better soon

Shazza N