Joint Hypermobility Syndrome - repeated buris... - Pain Concern

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Joint Hypermobility Syndrome - repeated buristis

MuscleMadam profile image

Hi All,

I have had my diagnosis for around 3 years I think, but joint pain for around 13 years. I have SI joint dysfunction, bilateral shoulder impingement, some clavicular wear and tear, L4/L5 bulges and a tear and bone damage to L5. I am female, 61kg, 164cm. Other minor issues - raynauds, lichen planus, low BP issues but nothing major.

The medial knowledge of HMS i find very limited, and i was met with much cynicism prior to obtaining my diagnosis with a doctor telling me there was no need to 'medicalize' things by giving them names. I think he thought if we didn't name it, it meant i didn't have the pain!! Following diagnosis I was advised that I should avoid running and weight lifting and just do 'light exercise'

After declining more and more and shoulders subluxing, I had bilaterial hydrocortisone to shoulders and set about a gym programme, predominantly weights, against the doctors advice.

I have to say, it is the best thing I have done and has reduced my pain by around 80%. My muscle mass has increased, my diet is healthier and I have more respect for my body than resentment when it does hurt. I feel so much stronger and in control of the illness now, but don't get me wrong, it still reminds me every now and then it is there.

My question is that I don't seem to be able to stop bursitis and I get this often in my shoulders and hips. I can't figure out which exercises are causing it and I don't feel any pain when performing exercise otherwise I would stop. I always ensure I am mindful of how my body feels, I research and obtain advice on correct form all the time and i think, get most things right. What knocks me off my feet is when out of the blue I just flare up again and then feel as thought I've caused it. Don't get me wrong my pain is far better than it was but I'd love to be able to overcome this and feel as though I'm winning. For my hips, I know the trigger and even though they say it must be a trauma or stress it really isn't- it can be sitting down/ driving for too long.

I think my shoulders are still a little unstable but I'm not sure which way to progress without hurting them. I've seen the integrated pain management/ physio team and they don't have any ideas other than to carry on doing what I'm doing and have hydro-cortisone if it happens- that's fine but I'm having my second out of the 3 permitted tomorrow so what then if i run out?

I really want to try and manage this myself and I do appreciate it is a chronic illness. I want to respect my body and nurture it not make it worse....

I'd love to hear form anyone that has similar issues and anything you can suggest to help.

Thank you so much in advance.

8 Replies

We're so similar - right down to the low BP (80/50 - 90/53). :)

I likewise visit the gym and practise strength-training to keep my ligaments strong and it works for me in that altho' I can repeatedly sublux, I never actually dislocate.

I have trouble sitting as it aggravates my hip and lower back.

I have recurrent bursitis that I can't prevent. I don't respond well to NSAIDs and the injections that I've had don't do much for me (tho' admittedly things are a little complicated by Psoriatic Arthritis and a genetic disorder that is a fellow traveller for the hypermobility).

Some people report that they manage to keep their pain levels within bounds because they can modify their overall inflammation levels through diet tho' I should think this varies enormously from one individual to another.

Something that I haven't done but would dearly like to try is a sauna several times a week. I know that I'd have to be careful with my joints afterwards because the ligaments would be relatively-relaxed from the heat but I've read lots of positive accounts of sauna for MSK issues and I adore the sound of it because I'm so rarely warm. :)

That's interesting and not something I would have thought about, thank you! Its always bittersweet to meet someone so similar; glad we can talk it out but sorry you have to feel this way! I know it is silly but i feel as though I'm failing in some way as I've pretty much convinced myself that I can almost cure myself of all symptoms and to keep getting bursitis is almost like a reminder that I haven't 'won'. All that said I massively respect my body and don't want to add any stress where it isn't needed and want to be considerate to its needs. I just don't know if further strength training is going to help or not :/ I might give the sauna a go though ;) Fair play for the strength training... I love it x

waylay profile image
waylay in reply to ITYFIALMCTT

I've been referred for hypermobility diagnosis (EDS, whatever), but my GP and two physios say I have it. Before I injured my back and got chronic pain I was really active. Yoga 3x per week, weight lifting 3x per week, dancing, biking, field work... I had some pain, 1 dislocation, a few subluxations, but didn't realise what was happening, and got them back in myself (except the dislocation - hospital for that one). Since my chronic pain began I've been unable to do anything but very light exercise for very short periods. Now I'm getting far more pain (nothing to do with my chronic pain), my shoulder subluxes randomly when I'm in bed, my hip keeps doing something very weird, which my physio said was likely a partial dislocation... Strong muscles and ligaments held me together.

This might not be relevant for you but I consistently test as "severe deficiency" in vitamin D levels.

Now, in respect of the joint pains it might seem odd that improving vitamin D levels might make a difference to you but it possibly can.

For various reasons, even with supplementation, I don't move out of the severely deficient category of blood levels - but, possibly because I can be what I think of as "very severely deficient", my joints can feel remarkably better if I manage to work up to "moderately severe deficiency". I'm still categorised as "severely deficient" by the blood test results but those few points can sometimes make a tremendous difference to me. Literally the difference between being able to move in the morning or not and having more than a few hours in the day when I can function properly.

It might not be the same difference for someone who is a bit more 'replete' than I am but that is my experience as someone who is "severely deficient" (I also have Psoriatic Arthritis).

I'll gladly take any advise so thank you for that. I might try it because if it is a simple fix then all the better! Thank you and I wish you good health ! :)

Hi 👋

Sorry to hear u have these problems but in a way it's refreshing to hear I'm not alone cos I'm in the same boat have been for 15 yrs since I was pregnant with my 4th son , some days the pain can be so bad I feel helpless other days I almost forget I have these issues, I'm going to be attending docs again soon to ask to see surgeon again due to l5 /s1 disc being so bad an my knee an ankle an right leg giving me so much trouble of late waking in nyt in tears hardly being able to walk say 5 out o 7 days it's getting to be a joke

An I do walk with my dogs to keep on move an clean my father in laws flats when people have stayed to push myself to no avail

I hope ur feeling better soon x

MuscleMadam profile image
MuscleMadam in reply to Mel03

Hi Mel, Really sorry to hear that you feel like this too!! Have the doctors said anything about a diagnosis, physio or rheumatologist? It would be good for you to have someone of a more permanent support. I struggled for 10 years before going because i felt I wouldn't be taken seriously in my 20's. They just wanted to medicate it at first and 15 years if diclofenac hasn't done me any favours to be fair. The underlying issues need to be sorted wherever possible but i guess it comes down to resources. :/ Hope you get the help you need x

Unfortunately I've never seen a rheumatologist I'm hoping that my new docs who I saw today who for the first time in 3 yrs I got futher on will send me to one I am going to ask

They are going to give me steroid injections on my knee to see if that will help every 4 weeks, he has said my right knee an ankle are knackered nearing time when I will have to get op , they had said 2 yrs ago I was too young for op but no choice now I fink because it's reached staged my left knee if going same way

Maybe at last I ll get somewhere

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