hypermobility pain

[Bbc23]

hello everyone I’m a 33 year old female who is diagnosed with joint hypermobility. I have been having this pain for 3 years. The constant pain is a burning worn down feeling in my scapulas and mid back. Also lower back pressure and.

I’ve tried all the physios I can find. I’ve finally found one who understands me. In terms of medication I’ve tried venlafaxine , amitriptlyne and nortryptline. Both have provided no relief. I’ve currently just started duloxotine. On my worst days I take co codomol. It varies how long the flares last and how painful they are. It’s rubbish and it gets me down so much as I’m sure you all understand. I do regular Pilates and the specific exercises my physio tells me too.

Can anyone else recommend any thing they have found helpful please? I’ll try anything! I just want to be able to continue working so I can pay my bills and enjoy my life with my partner and our dog. I just want some relief and happiness :(.

Thank you.

[Bevvy]

Have you tried swimming or even just exercises in a swimming pool? That can be beneficial due to the lack of weight baring. Even just walking in the pool can be helpful.

I hope you find success with duloxetine. Often it is a question of trying lots of different medications until one helps! Personally I have found duloxetine a real help. I noticed a positive when I first started on it and now am on maximum level and it helps! I also take Tramadol for breakthrough pain and doctors are ok with that because it’s not consistent.

[110201]

sorry to hear of your situation, I wonder if a tens machine may give you some relief, they have wireless/remote control options which would be practical for the back. Hope you find some relief very soon x

[cyberbarn]

There is a saying that doctors should take more notice of: Hickam's Dictum “Patients can have as many diseases as they damn well please”

It is tempting for doctors and others to dismiss people with hypermobility by assuming that all symptoms are due to the hypermobility and that they cannot have something else going on.

I struggled to get my GP to understand that yes, I have had pain on and off in my joints due to them being stretched beyond their normal range, but that now the pain was different. They dismissed me, but finally a physio referred me to orthopaedics and it turned out I had early onset osteoarthritis in my hands. This would have started in my 30-40s.

Roll on another 10 years and the pain changed again. I had to fight for referrals again, but eventually I was diagnosed with psoriatic arthritis. My symptoms resolved and I could walk again without feeling like I was walking through treacle! Then I had a reaction to the medication and had to go off it. All the pains started coming back again.

So please don't assume that everything that is wrong with you is due to HSD/EDS. We can have as many diseases as we damn well please!

[1vern0n]

I was told to concentrate more on core strength and strengthening supporting muscles.

[Bbc23 in reply to 1vern0n]

how have you managed to do this please? Nothing I do is working

[1vern0n]

I started a tai chi for arthritis class which is small controlled movements improving core strength and balance. There are taster sessions on the internet, the instructor is Dr. Paul Lam. The exercises I do at home are gentle stretching exercises and I got a free resistance band from Versus Arthritis. If you look at Versus Arthritis their exercises and advice are good.

As for pain meds, I personally have found taking a combination of Amitriptyline and Co-codamol at night helps me. It is tricky finding what works for you and I wish you well.

[MozieD]

Do you go for massages? My daughter suffers from chronic pain from HMS and she does physio and massage - and we are working on trying to find some pain med that could work for her. Taking magnesium is also suggested - along with magnesium rubs. They don't work for my daughter. I've read using a TENS machine could also be helpful. We are going to work on that for her.