is anyone else fed up with nothing being done.

[dawny2187]

I have had fibro for 5 years . i have amitrypiline at night and thats about it. i have lost my job put on 6 stone had physio, acupuntcure, bowens therapy CBT seen by rhemotologist who saw me diagnoised me and then dischared me. And thats it im left to self manage wit occasional support from GP who is doing the best she can but has not come up with any more ideas for treating me. infact its me who goes along with ideas and she will support. Im just sick to death of this condition no where to go no one to see no therapies being offered by NHS nothing and im slowly getting worse and worse with no hopes for my future . It doesnt help to know its a non degenerative disorder because i am worse off now than when I was first diagnoised .is there nothing out there that is going to work for me

[PickledCookie]

I know how you feel and i'm so sorry that your suffering like this. It is useless. I have been off work for 2 years now and am starting to come to terms with that i may never return and i'm only 32 and haven't even had a family yet. It's hard but I have found trying to accept my life realistically has help. I hope you get help soon x x x

[wendyp]

i know what u mean dawn i have had it for near 20 years and i am the same as you have 60 grm of amatrip at night and that is it done all the other things like u now i just get on with it do mind over matter and do what i can when i can hope u will be better soon but when i read other post i think is that what it is i put weight down 2 giving up cigs and i struggle 2 take it of but eat healthy and get nowhere hope u be better soon chin up xx

[AriadneJones]

You are so right Dawny, I feel as if I've been fighting for years. I think I have seriously hacked off my doctor as I am on a bit of a crusade about my fibro. I've managed to get a referral to Professor Davies at Guys but it took an incredible amount of persuasion. I've stepped back a bit as I need to reenergise (ha ha) for a while.

We have to keep up the fight but for now I'm doing it from the sofa - it's a step up from the bed!!

[fairycazzie]

Hia Dawny, have you not been on or offered pregabalin (Lyrica) i take this and it takes an edge off but depends on how bad the nerves are talking to each other.

I had Amitryptiline but was a complete and utter zombie so doctors put me on Neurontin and was awful side effects made me ill had to lay down all the time. so Pregabalin has been the best option and can start low dose and build up. I take them with co-dydromol but originally took with codeine, codeine and lyrica did not mix! the sleep is awful insomnia. any slight noise awakes you or because legs arms or head awakes me or neck. Maybe it is something you can try, not everyone can take certain meds, but worth trying out xxxxx

[fairycazzie]

and ps yes am still going on and on for answers! Got Neurology on 12th April fed up of just passing from pillar to post and pain management say cannot give so many injections, YES they can!! i know customers of mine have in elbows, knees, shoulders, bottom.. why fob us off.. my neck, shoulders arms and left leg are a nightmare sometimes. drag and dead feeling and spasms. xx

[dawny2187]

thanks for the replys . it seems like you have to come up with answers yourself and that health professionals will only take you so far.I do self manage and well most of the time i just wish all gps would get together and have a set plan of tests and referrals as it is hit and miss if you get referred to neurologists pain clinics etc . it shouldnt be left to the sufferer to ask for things all the time after all if i had cancer there would be a treatment plan . im just sick of pretending that im okay with it all . bad day i guess

[shelleybabe in reply to dawny2187]

I can empathize with you, my doctors in the past have been so ignorant and dismissive. My reuhmatologist has dismist me also. I should of started a fibro support group today, but I could'nt get out of bed because I was so exhausted! Now I have to wait another month to join the group! I cant seem to win!

[circuitrunner]

Fed up is not the word - to the point I can hardly walk at all now. Have had to go to the extreme and make a private appointment with specialist - to my own disgust. Needs must. Have no intentions on being housebound due to lack of help. All I GOT THROWN IS DIFFERENT PRESCRIPTIONS. Told doc it would be healthier for me to go on cannabis - I was so angry. Thing is I know what has to be done - but as now it is all cost affective grrrrr. No I am not rich at all

[Betty67]

Been ill now for over 25 years but I refuse to give up hope: illness has taken so much but I think hope is the most important thing. When it is missing (quite often) i just curl up and cry and my dog comes over and gives me a cuddle. She puts both legs on my shoulders and trys to give me a 'french kiss'. We then share a biscuit and carry on. Definately my best friend.