Rheumatoid & Secondary Fibromyalgia

[Widget]

I've just found out after a 2nd opinion last night that I also have secondary fibromyalgia. Can anyone advise me on this & how they deal with it. I'm still trying to take in last nights appointment & the information I was given.

Thanks

[allanah]

Oh W, that's so not fair!,

there are plenty on here I'm sure will post to you but just look at the websites, chat to nras and get as much info as you need. I hope they get it more controlled for you soon xA

[EmmaS-NRAS NRAS]

Hi Widget,

I'm definitely aware of people on our site who have both RA and Fibro so hopefully some of them will be able to help. In the meantime, you may find the following website useful:

A good place to start is the main NHS page: nhs.uk/Conditions/Fibromyal...

This includes links to the following Fibromylgia information sites and also to some pain related sites too.

fmauk.org/ - Fibromyalgia Association

ukfibromyalgia.com/ -

fibroaction.org/ - FibroAction also run a page on Health Unlocked which you can find here: healthunlocked.com/fibroaction

If you need any further information, do give the NRAS Helpline a call on 0800 298 7650

Best wishes

Emma - NRAS

[jaydeeh]

Sorry to hear that but I don't think it's very unusual. I was first diagnosed 5 years ago with Sjogrens, a year later RA and then about year after that with Fibromyalgia. I find it difficult to know which is causing problems between the RA and Fibro. I do find it very confusing. Amitriptylene was prescribed for the fibro but not sure it really helps the leg and foot pain at night. I do hope you get the right help.

[Bakinglover]

Hi there, I also have RA and have recently been diagnosed with secondary fibromyalgia. I'm still trying to get my head round having it and how to deal with it. I've started having hydrotherapy/physio and am seeing an Occupational Therapist too, both through the Rheumatology department. I'm finding them both helpful in learning how to manage fibromyalgia such as pacing and exercises I can do. I've also just started taking medication for it after talking to my GP. Have you been offered any support like this?

[Widget in reply to Bakinglover]

Me too, I'm also not working at the moment due to leaving a new job in December after it caused me a lot of stress & pain & now I have this too. I'm going to be prescribed amnitriptyline. I have a physio appt on Wednesday of next week, have to go private as my referral is going to take so long.

[eduk8]

Bakinglover, the beginning is the most painful and difficult time both physically and emotionally. Once on steady medication and some exercise (your hydrotherapy sounds great), your pain will ease. Keep moving. That is a key. If you are over weight, loose some. See if any foods trigger more pain. Almost everyone with RA and Fibro is affected by weather change. I hurt when the weather change is leaving and my kids (both have spondalitis, are in more pain in the beginning of a weather change. Rest ever day at some point. Mid day might be the best giving your body some recuperation. Stretch every morning and evening. A hot tub is a terrific aid and you (with a doctor's prescription) might be able to write it off on your taxes.

I have had this for 10 years now. This is what I have figured out for myself. Everyone is different. I went from a cane and barely able to walk to walking, line dancing, gardening, and almost no pain. It's not what you can't do..it's what you can. You will be able to discover what you can do with time.

Good luck to you.

[leflunomideifyoudont]

I have RA and Fibromyalgia too. I pushed my consultant to send me to a pain clinic. It was incredibly helpful. I learned to distinguish which pain was which. I saw a nurse prac who prescribed me pregabalin. It worked! It reduced my FM pain hugely. I am starting slow release dyhidrocodeine. I thought I was on top of it all, but now the leflunomide has failed, and I am due to start the next unpronounceable biologic medication. Good luck all.

[Bakinglover]

I hope the physio and the amnitriptyline help you Widget. I find it is helping my wellbeing just to know I'm trying something though it's frustrating that it's taking so long. I find professionals like physios and OTs have more time than doctors do to listen to how you're really finding it and get to know you as a person. No professional has mentioned a pain clinic yet to me, I might mention it to my GP when I see her next week. I hope you've got a helpful GP and/or Rheumatology department. How are you spending your time not working? I do a little bit of work from home but as that means I don't really see anyone (it's online) I do a little bit of voluntary work too, it just involves chatting to people and playing board games so it's not too taking on my body.