Hi I’m new here 😊

[Av41]

I’ve had fibromyalgia for two years now, feel low on bad day going to work hard. Does anyone on here have fibromyalgia and hypermobility?

[golly123]

Hi. Can you explain what hypermobility is? I would classify myself as not having great mobility at all due to an accident plus other bone related bad things. Sorry to ask. Thanks Golly x

[Av41 in reply to golly123]

Hypermobility is being double jointed, my legs hurt so much at night and so stiff I’m on medication for fibromyalgia and it doesn’t work. Thanks x

[golly123 in reply to Av41]

Hi. Thanks for your message. I think it's all trial an error with painkillers. I've just come off pregabalin (serious weight gain) and have just been swapped to tramadol. I'm under the Pain Clinic who have been brilliant. It's not just about painkillers but it's also the psychological impact too. I have 2 more appointments via zoom with the pain clinic. Apparently, the less stress we have, the less pain we feel. So I've been told that deep breathing can help. I haven't really tried this yet.

I think medication is never going to make the pain go away completely.

I'd also, as well as the pain clinic, meds that work as much as they can recommend CBT. CBT helped me manage my stress levels by teaching me to pace and space. I learnt just to conquer a country in a day not the world.

I've been in agony when I walk. What I've tried to do is focus on something I see visually.

To be honest this whole thing is a minefield. Things are made worse by lack of sleep too. I was taking half a zoplicone as in 15mg every three nights. I found if I slept better, things felt better. I look like I'm about 125 years old in the morning. Clinging on to the bedside cabinet to get out of bed.

I suppose it could be worse but it could also be better. I hope you have as much as a pain free day as you can. Best wishes Golly x

[Av41 in reply to golly123]

Thank you! I have pain clinic on 26th April so I’m crossing my fingers, I’m also on pregabalin and have weight gain. But have allergy to morphine so can’t go on strong painkillers. Hoping something works soon x

[Vontrap in reply to golly123]

hi I’m new. Can I just say like you I have terrible discomfort when in bed but I’m not double jointed.

[Cat00]

I have hypermobility and fibro, it's partly why my back and shoulders hurt at night. I do shoulder and back exercises to reduce the impact it makes. I have broken my ankle twice, broken my foot and wrist because they are very unstable due to hypermobility.

[SpikeDinosaur]

Hi, yes I have hypermobility and fibromyalgia. Of course lots of people who are hypermobile don't have any problems at all - are you diagnised with anything like JHS or EDS? When my fibro started I thought it might be JHS. And to be fair, although I have always had to look after my joints, it's not really been a problem in itself. It does take longer for joint injuries to heal, which means that since I've had fibro I've found it hurts more while it's healing. I fell off my bike a couple of weeks ago and my elbow feels like it has a knife stuck in it at the moment. I know it's a disproportionate amount of pain for the injury, so I'm focused on tuning it down in my brain. (Which isn't that successful, but helps a bit - and knowing that this is just what happens now is quite reassuring in a strange way).

Exercise is the only thing that consistently helps me. I make sure I do something even when I don't feel like it. I occasionally overdo it, but more often than not it helps. And if I haven't done anything for a couple of days I will be in agony.

As you'll read on lots of posts here, everyone has to find what works for them. For most people it's a combination of things, that are about management rather than cure.

Not sure if I have covered what you're asking about... so feel free to ask if this isn't it! 😀

[Av41 in reply to SpikeDinosaur]

No I haven’t been diagnosed personally it was picked up I have hypermobility when my daughter when to hospital it was passed down from me. Just didn’t know if the severe pain is fibromyalgia or something else.

[SpikeDinosaur in reply to Av41]

I know what you mean. I certainly was hoping it was as simple as my dodgy joints 😂 I even got a book about hypermobility and fibromyalgia. Certainly in my case I am getting my head around it being mostly fibro.I hope you find something that helps.

[Av41 in reply to SpikeDinosaur]

thank you hopefully 🤞🏻 x

[1whitestar]

Hi I have fibromyalgia and inflammatory arthritis.

[Vontrap in reply to 1whitestar]

hi. I’m new to this. I was given duloxetine up to 90mg. I don’t like taking lots of meds so after a few months I’ve cut down to 30mg. I’m really feeling it and did some gardening the other day which has made it worse. I don’t get anything for arthritis. I had a test for rheumatoid and it was clear. I was told I couldn’t have another test that was 6 years ago. What is inflammatory arthritis? I’ve got nodules stuff fingers hands pins and needles just thought it was osteo arthritis. How do you feel

[1whitestar in reply to Vontrap]

I started getting problems last April. It was tingling all over the body like pin pricking. Then my arm wrist legs anywhere would go stiff so painful I could not move in bed for 5 days. Had to have my partner help and still do to dress etc I have crutches for when I'm getting stiff on my legs. Parts of my body swell go red itch. I think the consultant said its rumertied as also fingers have inflamation and swell can not move. I am on duloxtine 60 mg naproxen omerzole sulfasalazine for arthritis. Iron and blood pressure tablets. I have to space everything out I can not do what I did a year ago. I've bean off sick for 6 months can not hold down a job as each day I do not know how I will be. I get very tired etc .

[Midori]

I have a minor amount in my knees, which have served me pretty well over the years, but they are getting painful now.

Cheers, Midori

[hbanana23]

I have fibromyalgia and hypermobility. Supposedly it's in my left side because I'm also hemiplegic and I think it mainly affects my pelvis, hips and surrounding joints. Hoping to find out more soon when I see a private rheumatologist.

I find when I'm having a fibromyalgia flare-up that it mainly targets all of the hyper mobile areas and makes them even worse. I'm trying to do low impact exercise on those days but it's not fun!

[Rabbitmummy]

Hi, I was diagnosed 4 years ago with Fibromyalgia after an anaphylactic crash due to allergies. My consultant described it as …when your body has a trauma, physical in my case my heart stopped, your brain goes on high alert, flight or fight mode. All my brain went into panic mode as my organs failed. Once switched on these receptors can’t be switched off, which is why there is currently no cure. It’s been a very steep learning curve! I joined a group called fibro active as there is a lot of false and confusing information on the net. I find Tai chi helps me as once I have learned the routine I can lose myself in gentle movements. It has also helped improve my joint stability. There is a form of Tai chi for arthritis and a lot of movements can be done seated if necessary. Spoon theory has helped me pace but even now sometimes I find myself overdoing it on good days and paying the price a couple days later lol. Acceptance takes time but chatting with others who “get it” is priceless. Medication wise intake amytriptaline to help sleep and pregabalin, but if you can find a positive support group in your area or one that offers zoom it could be a great help. 🙂