Confused about "treatment"

[Artyrosie]

I've had FM for 18 years, stopping work six years ago when it became much worse. I was diagnosed by a Rheumatologist after some years of fruitless treatment for arthritis, but she then promptly discharged me as there was no treatment. I take Tramadol for pain from a kidney condition, but this doesn't seem to affect the FM pain, and I end up topping up (fairly ineffectively) with paracetomol. Because of the kidney problem I can't take anti-inflammatories. Unsurprisingly I also take anti-depressants! I've used crutches for some years, but have lately begun to use a wheelchair some of the time.

I'm find this site incredibly helpful, but am puzzled by all the references to "treatment" for FM. The only thing I've ever been offered was graded exercises with a physio, but after a few weeks of these my condition was so much worse I had to give it up. Now I discover that DWP will use my attendance at specialists/doctors (who??) and the "treatment" I receive to assess the severity of my symptoms. HELP. Somebody please explain what might be available and the best way to access .....

[purpleiris]

I spent 10 months last year backwards and forwards to my Gp's and the original doctor i was seeing grew complacient about my condition it was only when i had to see another doctor in an emergency due to the severity of my flare up that i finally got anywhere. He suggested the pain clinic and i began attending a hospital 40 miles away( rather than the local one) and the pain specialist recommended accupuncture. I had a treatment every week for 4 weeks then top up every 6 weeks. I am now back on my feet and able to carry out basic every day tasks and housework. I know it doesn't work for everyone but it did for me. I'm on tramadol slow release 2 times a day, and amitriptyline at night not for depression but because it helps block the pain signals so that i can sleep. I also have tramadol 50's to top up if needed for pain as i have a bad knee. I too have been down the physio route and not had any success until my doc recently sent me to a private clinic. the physio massages my bad knee and then exercises it, i then keep this going at home and go back weekly.I also think having a positive mind helps. I hope this information helps and wish you all the best, love & light Dawn x

[tiredandinpainmum2012]

I have had M.E for most of my adult life (I'm 41 now), after glandular fever. I also developed fibromyalgia after I had my daughter 8 years ago. After trying various treatments over the years, all mentioned in the posts above, but am now taking duloxetine, gabapentin, propranolol hydrochloride (for migraines) and Transtec transdermal pain patches. I have found a great GP, who has seen me on my worst days, an occupational therapist, who gave me adaptive equipment and been to a pain management clinic at my local hospital. My core support though, has been my parents who, although I don't live with them, are amazing carers. They, along with my beautiful daughter have kept me going through every dark period. Gentle hugs to you all xxx

[crissy]

I have had every therapy going! Pain clinic, and have just been referred again fir another pain clinic! Iv had acupuncture, drugs galore, iv now bern prescribed yet anothet one! I do find co-codamol 30/500 helpful, ov been diccharged from rhumotology! Why they do this is bejond me, surley they could let you have a follow say at least once a year! I have massage once a month, which i pay fir, i cannot afford any more! And dnt get me started on the benefit system!iv also found g,ps need to be more educated on fibro, i have not found one in my practice are bothered! I always feel like im bothering them and moaning! But i try hard, i work, and would like g.ps to realise how sick we feel! Ten years on and things are no better!

[jahni]

when i was told i had fb i was discharged and told learn to live with it, my gp deals with it with me and i done all the phiso,hydra and still i am in pain, it so hard to tell people who look at me and say there nothing wrong with me, just trying to explain is differcult, now i justlearn to cope some days are really bad and others are just bearable i wish there was something i could take that would help with the pain, how can anyone understand when each persons pain is different,i once had a hard time telling some one that my skin felt like it was on fire and i couldn't put anything near it, it sounds so odd to a non suffer

[Sarah-Jane in reply to jahni]

I really relate to your skin reaction. However I can also sit on something, like keys, and not know it for a while. Slowly, ever so slowly pain builds until I take a look and see whats wrong. Its usually my thigh so not direct pressure, but at night even a crease in the bedding or not using pyjama trousers sets this burning thing off. I hate trousers in bed.

I think being discharged like that is disgusting. FM is a recognised illness and not in your mind. Who would choose it. The failing is with them. They did not know how to treat you so gave up. Idiots. They could have at least referred you to the pain clinic.

Thank goodness for your doctor - but does he know what he is doing?

[kraftyk8]

I wholeheartedly agree with everything Lynn-FA says and would just add one thing. If it is available in your area, get on a pain management course. This should be through a referral from your Pain Management Consultant, so if you don't have one get a referral from your GP. In my case, it took a year's wait to happen due to a long waiting list. I have found it invaluable, There was input from a Psychologist to help think about things differently, to learn how & when to relax and how to pace activities effectively. A physiotherapist was there to teach exercises to try, so you can learn to work to a level that you can cope with and build on. Lastly, a Pain Specialist Nurse was there, to discuss all the conditions you have and advise your GP which medications to prescribe for your particular needs. The course was one day a week and lasted for ten weeks. Apart from all the useful things I learned, it was really good to meet other people who understood. I still go at projects like a mad thing from time to time, instead of pacing it, but the crappy next day I know I'm going to have, is written off as consequential pain and I use all the distraction and relaxation techniques to deal with it. I think of it as a pampering day.

[Artyrosie]

Thank you everyone - as soon as I can get to see my dud GP (am hoping to change shortly) I will ask for that referral. I understand that if he should refuse I must get him to record that in my notes?