Fibro/EDS

[picklemepopcorn]

Hi, is there a general chat/support thread for Fibro? I've seen them, but can't find them now.

I've been referred to rheumatology for Fibro and/or Ehlers Dahnlos.

Apparently not. Just me then...

Hello! I know there used to be one, but I’ve re registered since then so can’t find it.

I’ve also got a referral to rheumatology for eds/hypermobility/chronic pain after suffering for 8 or so years. Gps haven’t had a clue how to deal with it, apart from giving me 6 sessions of physio. Saw a consultant for a completely different problem, who realized I should have been referred years ago and has pushed the gps to do a referral. Finally!

I hope your journey has been a lot less complicated - is your gp fairly on the ball about it?

And and because it sucks!

Hellooo! It was feeling a bit lonely! Thanks for answering!

My GP would have diagnosed Fibro I think, but the hypermobility complicated things. I've been tired and low for years, thought thyroxine would fix it, then iron, then vit D, then HRT. Fixed those but still felt rough and started asking about hypermobility. However, kept coming across Fibro while I was looking at EDS and slowly began to realise that that fits as well.

I've just got used to everything hurting all the time. Thought it was just 'cos I was fat/old/lazy...

I've had a few mini traumas, Car crash, bereavement, caring role etc. I kept waiting to feel better after each of them. Gradually realised it wasn't going to happen.

I'm lucky, DH has insurance through work so I'm seeing someone this week.

What do you find helps?

I’m not much use to you about what helps because not much does at the moment! I do Pilates at home just to keep some muscle strength, but it leaves me in pain so I hate doing it. I reduced my hours at work and try to rest as much as possible otherwise the pain is overwhelming.

As you’ve had traumas, have you thought about CFS? Lately doctors think it can be triggered by stress so that might be another piece of the puzzle.

It is great though that you can see someone relatively quickly. My referral to rheumatology was put on 3 weeks ago, and my appointment is in September - I think that’ll make it a 4 month wait

Hope you appointment goes well and you get some good answers and good advice - if you don’t mind keeping me updated

Will do!
Sorry your wait is so long.

I've got very good at not doing much - which really helps with the aches and pains! So I don't feel too bad, just very tired. But if I do anything- a day out, an hour in the garden- it flares up and hurts so much.

Feeding back...

The consultant is more interested in Fibro than anything else- he sees the other issues as an over sensitivity issue. He described Fibro as being a lifestyle disease- but meant a modern life related sleep disorder. So sufferers feel jet lagged or hungover, sensitive to lights, noises, touch etc as a symptom of poor quality sleep.

My next appointment is about how to manage it, when the tests he has done come back. I'll be reminding him about the joint issues though, because they need protecting somehow! He said I have a few hypermobile areas, and was probably quite flexible when younger. I have loose knees, apparently (made me laugh- the only part of me that doesn't hurt!).

Hello! I was referred to a rheumatologist at the end of last year after a few years of blood tests, scans, etc. Specialist reckons I have fibro, and is testing me for antiphospholipid syndrome (history of recurrent miscarriages). I am currently taking hydroxychloroquine, which I discovered is not a med for fibro, so...yeah.

Feeling like crap at the moment, and don’t know whether it’s a ‘fibro flare’ or something else. I suspect I am still a bit in denial about it being fibro, as I keep expecting to feel better so I can get on with things. Or blaming the menopause.

When are you due back? Can you query the hydroxychloroquine ? Amitriptyline should the more usual one, I think.

They do a course in my area that I've been referred for. It's about how to manage the condition, from what I can tell.

I've been reading about the need to gently increase activity and exercise levels. I'm trying to be consistent about what i do at the moment, then to build up.

Next appointment is August. From what I can remember (must make notes at next appointment), the rheumy nurse said it was to dampen down my immune system a wee bit. I don’t know if the specialist suspects RA or connective tissue disorder (that was mentioned at one point) so that could be why.

It’s not made any difference so far, but I know it takes weeks or even months to kick in.

Rheumy nurse mentioned swimming (in a heated pool) or tai chi as forms of exercise when I mentioned I wanted to try to lose weight. And heat packs for muscle aches. That’s it, really.

I've started tai chi and swimming. They feel about right. Unlike the salsa dvd that knackered me!

At the moment, swimming sounds exhausting (I am not a fan at the best of times) but I can see how it would be helpful. Although at the moment, I am so full of aches and pains that a gentle swim in a very warm pool does sound good.

How are you finding tai chi? Do you attend a class or do it at home.

I do a tai chi for health class. It's good. Not energetic, but strengthening.

Swimming- I walk around the pool and do exercises against the edge (ones I learned at pregnancy aquafit years ago). I get one of those tube floats and bicycle my legs, or walk, dangling in the water. Swimming would hurt my neck too much, even if I had the energy. I only do about 20, 25 minutes, but it leaves me feeling like I've used my muscles which is good.