I used to be on this site all the time back in 2007 before i got dx with fibro and mps i remember quin not sure that name right been a while.
Dont feel i have a right to be on this site really so sorry about this but have been on another fibro forum on another site for ages now and was ok but i am in a very bad way again like i was in 2007/2008 when i was posting on here.
i have serve muscle spasms all over i take baclofen i take 100 mg a day so cant go higher my dr tells me so she has me on diazaepam which i hate as it makes me depressed and cranky i asked for tazindine but she said my rheumy will have to give that but i only see him once a yr as he has writtian me off its like you have fibro so off you go and deal with it, i have nerve pain in my right hip going round the back of the thigh then back of calf then foot i take codein 30 mg forthat it helps if i keep still in bed but when waling it sets it off and is so painful,when laying on my back i cant lift the left leg off the bed not because it hurts i just cant i can with the right leg, my hubby says its just muscle weakness due to being bedridden 4 weeks i have been bedridden 4 months before and never had that happen, i still wonder about my dx but since it the drs wont do a single blood test and everything is to fibro, i was doing ok for a while collecting the kids from school driving light house work even a bit of ironing going out with family granted on my scooter but still out and about saw friends as drove and popped in walked with a stick but that was all. Then before christmas 2010 i started to decline flares got more days got worst lessgood days then the musclespasm started head to toe in my jaw arms like lead all the time not when just using then the diazapam sorted most out but the ones that stay are in my stomach upper mainly like i have done a thousand sit ups like i am holding my muscles in they fell rock hard and wont relax it makes it hard to breath and walk heat helps.
i am going into a private hospital that deals with fibro,m.s,cfs and other chronic pain disorders they do medical and holistic so am hoping they can help in for 12 daysgo on the 3 rd of may.
icame to this site as most of my fibro friends just dont experience this in there flares and i have not for a while 2 yrs i was without this the odd flare but controlled with the baclofen i am also on cymbalta which i hate a low dose want to come off and fentanalpatches 100an opiate change every 3 days, please excuse my bad spelling and lacking of pressing the space bar its killed me to write this as it is. ihope you can give me some advise.
You have right to be here. I am on a combination of Baclofen and Trileptal for nerve. I makes a big difference. I did not notice right away. It is not a hundred percent perfect but it helps a lot. I also use a hometics vibrating pad daily. It has made a big difference.
I don't know if that will help. I am sorryy you are having a tough time.
i suffer from nerve pain and weekness in my legs its horrible, i tkae baclofen and gabapentin and it helps a great deal.
im in the uk and have a good neuro and am being refered to an MS specialist by him.
push for a second opinion you have the choice to see who you want and where check with your GP
hope trhis helps
I'm sorry you've not seen any improvement since your time away. I remember the months you were bedridden. I thought then, as I do now that you were not getting the proper care.
I'll let a fresh set of eyes provide their thoughts - and my only encouragement at this point is to not stop taking the cymbalta because I know that depression has been with you throughout this journey. How could it not with all you have going on.
I'm glad you came back - only wish it can provided some comfort.
Thank you so much guys for the fresh eyes and old friends quix thats it brain at 36 not working.
I have had this fight with the nhs for 4 yrs really but since i had one scan clear 4 years ok i was discharged and as i recovered except for weakness in left leg and on off flares and a dx of fibro in 2008 and then a dx of mps which they say covers the nerve pain they refuse to redo anything i had a good dr who always thought it was not fibro and thought it was a rubbish dx but then i moved and in the uk you cant chose where you go you have to go to the drs in the area i only moved 4 miles!
I am counting the hrs to when i go into this holistic/medical hospital it is private but the nhs have paid for some and i am going to get a bursary for further treatments, the drs are private and trained in fibro,cfs and M.S and they will do bloods and send you off for mri xrays if they think needs too and i think the weakness and nerve pain in the leg is abnormal i was bedridden 4 months and that has never happened before it is not where the muscle has worn away asi was using it fine 4 weeks ago there has always been a weakness it has always been my bad side after i built up from the big flare in 2008 but i could walk about on it abit with a stick and used my scooter picked kids up from school etc then the decline starts but this leg weakness and nerve pain worries me plus other sx that just dont fit in, but unless these private drs pick it up and insist on on a mri as i have never had a neuro exam where i cant lift my leg off the bed at all.
I'm so sorry that you have had to go through all this and for so long.
I understand it's really difficult if you have a dx because they are so set in their ways, once it's that then it's as if nothing else can go wrong with you, they stop searching for other clues and give up.
I'm glad that you are going to get some expert help, what is the name of the hospital that you are going to stay at as I'd be interested to do some research and see if it might be suitable for me?
Good luck with everything - I hope that they will start again and do all the necessary tests to come to a dx before they offer treatments.
It would all be so much easier if the doctors would just listen fully and not pre-judge.
Thanks for replying, i am in the uk so i dont know if me giving you the hospital place will help but i will anyway and if your in the u.s then you can just ignore it.
Its burrswood christian hospital, its in in groombridge in kent about an hour away from where i live. Its set in amazing grounds and the staff are the nicest your ever meet, well the ones in the out patients are as i used to drive there when i was well and do hydrotherapy and then sit in the grounds afterwards. As its a listed building the grounds and cafe and bookshop and its amazing chapel are open to the public of course the the hospital is not and is in a separate part. They center on the whole person, they do counciling,hydrotherapy,physio,massage and then they have trianed consultants in areas of fibro,c.f.s,m.s and end of life care from terminal illnesses ( my mum went there for a short stay)as well as rehibilitation after accidents and stays for when you have been in hospital for surgery or an illness but not ready to go home yet they do packages for that as well, you do not not have to be christian and take part in any of the services but if you are they will stream them to your t.v in your room, but they except all faiths or people with none they are just there for the person, as i dont have private insurance i had to use a fund from the nhs but i can only get that once a year but they do do a bursary for people who have low incomes so i am hoping i can use that and come again, a normal package for anyone with a chronic pain condition or m.s is 3 weeks then follow up return visits at 2 weeks a time throughout the year and close contact with the dr, that is to get your drugs right and your mobility kept going of course i cant afford that and i have 3 girls and my husband could not keep taking time off like he has been doing to fit that in.
There was one lady there who had c.f.s and was bedridden and had been for 12 yrs she went in for 3 months and it completely turned her life around she could return to work etc of course i have 12 days lol so i wont be expecting too much.
I am so sorry to hear all of the trouble you have. I have read in other places that if a doctor thinks you have fibro, the just blame everything on it even if it doesn't fit. I am beginning to wonder if MS and fibro are somehow interlinked. I hope you get the help you need.
BTW- After reading the UK restrictions you list it scares the begeebies out of me to think that the US is going to go to socialized medicine.
thanks for the hospital info.
I live in Sussex in the UK so it's worth having new ideas.
It's amazing that there's this out there and yet no one tells you.
But then I guess they wouldn't want you to ask for NHS help for funding.
Good luck - it sounds like a brill place and help you get some answers x
I found the place because my mum was ill in the 90's and unfortunatly died in 1999 but stayed there for a short period.Then i discovered it as just a beautiful place to visit.
Then after getting ill and having hydro on the nhs which was awful and only give you 6 weeks, i researched private hydrotherapy places and burrswood came up and when i went the differences was amazing they were so centered on the person and knew so much about my condition it was a pleasure going, i just so hope the hospital staff will be the same.
My mum is 63 and been well, but over the last year she has experienced some pains in her arms and hands and seeing the GP, did some pysio of arms but it did not help.
However,she has had MRI/Nerve/Brain scans which showed OK, apart from nerve damage which is causing muscle waisting in her both arms and she is having problems lifting her arms and unable to eat, dress etc... We have seen Neurologist and now awaiting for spine test, to if this is connected to something else...
Is there any medication she can take in between these tests to relive her pain, her gP has not been much of a help so will be seeing them again in uk. Can this nerve damage be repaired and is any therapy treatments help?
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