Diagnosed with Fibromyalgia today

[Bakinglover]

Hi I have had RA for about 8 years now. Having struggled with extreme fatigue for the last 9 months, I saw my consultant today who diagnosed me with fibromyalgia. I just wondered if anyone else with RA and Fibromyalgia could give me some advice on this condition and what can be helpful for it? I've not been given any additional treatment as yet.

[Beverley-NRAS]

hi Bakinglover,

Sorry to hear that you have been struggling. I have puts some links below for you about fatigue and fibromyalgia:

arthritisresearchuk.org/sho...

UK Fibromyalgia:

ukfibromyalgia.com/

01202 259155

arthritisresearchuk.org/sho...

I hope these help you

Best wishes

Beverley (NRAS Helpline)

[Bakinglover in reply to Beverley-NRAS]

Thank you Beverley, that's really helpful. I've ordered the Fibromyalgia booklet from Arthritis Research.

[Beverley-NRAS in reply to Bakinglover]

Glad you found them useful

[dillie]

hello there, sorry to read that you have been diagnosed with FM. i was diagnosed with it in sept this year…it is very debilitating, i fully sympathise! sometimes it is hard to know if the RA or Fm is causing the symptoms and that can be hard to deal with.

when i was diagnosed, i felt that the RA consultant was telling me it wasn't within his remit to oversee the FM and was left with a choice of 3 drugs (amyltryptaline, gabapentin, and pregabalin, the usual 3) and left to get on with my own devices. I decided that i would need to take control of the FM myself, sooo i joined FibroAction on Healthunlocked and they have been really useful and very kind. I have a referral to the local pain clinic ( in march, 6 month waiting list!) but I have been pacing, trying to stay positive, not catatrophise, eat well etc. My physio told me to try not to get too hung up on the fact that I have 2 conditions, but to try and focus on looking after myself, and rest whenever i felt like it, and to try not to dwell negatively on the pain and fatigue ( hard!! somedays i feel i have been steamrollered and am EXHAUSTED!)

I've done some reading on managing pain and a lot of writing, very small goal setting and that seems to have helped me, rather than just ruminating on how damn awful it all it all is! i try and go for a small walk everyday, and that too seems to have helped.

As for the meds, I had a terrible reaction to Amyltriptaline, am on Gabapentin but my gums are so swollen and sore sure to side effects and I feel so drowsy! So I might ask to try Pregabalin if nhs funds permit.

Perhaps you could ask your GP for advice on the meds and a referral to the pain clinic?

I hope this helps somewhat, let me know if I can share my experience with anything else - I'm so new to this double whammy so I am not sure how much I can help, but my thoughts are with you!

[Bakinglover in reply to dillie]

Thanks for your message. Only one drug (amyltryptaline) was mentioned to me and as I already take an anti-depressant I don't think I can take it. I'm currently having hydrotherapy so my consultant suggested I see how that helps first. How does your FM affect you in your day to day life? I'm finding life pretty limited, in a different way to when my RA has been bad in the past, as I am struggling more with tiredness in my body and my head. It's kind of good to now know why I feel like I do but still a bit of a shock to take on board another condition.

[hatshepsut]

Hi, just to say that being on an antidepressant doesn't necessarily rule out amitriptylin, I'm on both, as are several people I know. It is not being used that way, but for pain relief, and relaxing muscles. M x

[Bakinglover]

Oh I see, that's really helpful to know, thank you. I'll talk to my GP about it in the New Year. x

[janni51]

I am so sorry about your recent diagnosis.I've had Fibromyalgia for 15 yrs now and have tried more or less everything! My GP is very sympathetic and wishes he could do more.I've been to the pain clinic etc.etc,but I just wanted to warn you about how addictive these drugs are.Lyrica (pregabelin) ,and Amitryptaline are both very uncomfortable to stop after about 6-8 weeks.You just have to weigh up the odds,and do what's best for you.3 or 4 of the drugs I'm on are highly addictive,but quite honestly I'm past caring now.God Bless you, Janni.

[leflunomideifyoudont]

It took years before the terrible pain I was experiencing was diagnosed as FM. The pain that no painkillers could reach. This was diagnosed by a registrar. The diagnosis didn't help. It took another year of this pain before I begged rheumatology dept to send me to a pain clinic. I was told that I wasn't the right candidate for a pain clinic. I began to ugly cry....you know the kind ( years of pain and no self respect left) and asked what I was supposed to do? A reluctant referral was given. I am now on pregabalin. Although the pain has not gone, it has halved. I see a fantastic pain nurse/prac who is now putting me on slow release dihydrocodeine. I had 4 hour long sessions with a psychologist to talk about my pain. I am now able to distinguish between the different types of pain, FM, muscular, and the RA, which before had become one tangled angry and persistent monster. I am better equiped to know what I have to do for myself. I found everyone at the pain clinic to be supportive and kind.

Its terrible that at our most vulnerable, when we are in the most amount of pain that we need the most fight. Fight to go to a pain clinic to see specialists for pain. As much as I respect rheumatologists for their work, in my experience they have had little patience or time to deal with the complexity of pain issues.

Best of wellbeing to you.

[Bakinglover]

Thank you for your comments, sorry I've only just seen them. I went to my GP and she said my Consultant had recommended Pregabalin so she has put me on that. Looking at your posts I feel quite fortunate that it was relatively straightforward for me. I'm on quite a low dose of it at the moment but it is helping with the stabbing pain. I'm having hydrotherapy but to be honest the session leaves me in pain for 2 days afterwards so I'm not sure if it's helping. I've also been seeing an OT who explained pacing to me really well so I've started giving that a try. It's very frustrating resting so much in between tasks but it seems to be helping a little bit. I think it's just the psychological impact that I'm finding hard, this has made life much harder than RA ever has.