Hi!
So I'd been thinking today about what life could be for me in 20/30/40 years time as even in the last 5 years living with hypermobility syndrome has changed drastically for me. I know everyone's experience varies, but I wondered if anyone had any advice or things they wish they'd have done differently with it when they were younger? X
3rd time writing this. I asked the same question. All my consultants told me I would likely that I would have been much worse as a lack of muscle strength from not exercising would have probably made my condition worse and sooner
I am 58 now, and there are two things that I wish I had taken into consideration. One is that joint wear, tear and repair will be out of balance because of the lack of ability to make good collagen. I was very fit and active for most of my life and now I am paying for it. I ran at school (middle distance) but after surgery on my feet I just walked. I walked every where for very long distances. By my 30s my feet were painful when walking but I kept on going. At least 10 miles a day with the dogs, then spending a lot of time in a large garden with my son (he was home educated and we did a lot of stuff on the trampoline!).
Now I have had surgery on both my feet, twice on one, including a big toe joint replacement. I still have pain in both as the osteoarthritis is still there.
I had had some injuries in my wrist and at the bottom of my thumb, but I also worked as a builder for three years converting my own barn. I now have osteoarthritis in my hands that impacts on my daily life, including when trying to write.
So the first thing I would do differently is less exercise. You need just enough to stay healthy, make sure it isn't high impact and protect those joints. All this emphasis on getting more exercise that the government pushes on people isn't quite right. It is moving, staying active, not organised and artificial exercise. And keep the joints in the midline. If you want to know what kind of exercise here is a good video. youtube.com/watch?v=2LC-qUe...
The second thing is to do with the skin issues. Many people don't just have hypermobile joints, they have stretchy skin too, which is an indication of tissue fragility. This can lead to delayed wound healing. For many with hypermobility absorbable sutures will fall out before the wound has healed. I should have picked up on this after the sutures for my episiotomy fell out but I didn't and no one else did either. So when I had surgery on my foot they just treated me normally. The incision split open, got infected, was very painful and probably left more scar tissues than it should have. The second time I insisted on non-absorbable sutures but they didn't leave them in for long enough and I still had a problem. By the third surgery I was getting pretty confident; I printed out a peer reviewed paper that said to keep them in for twice as long (four weeks). We did, and I had much less problems with the recovery.
Not everyone with hypermobility will have this problem but even if people do they might not know about it until it is too late and the incision is open again.
Good question!
Wish i’d known same sort of things as the others, but luckily i did start learning more from 1998 onwards.
Also wish i’d know my mouth to a*s gastro issues are probably mainly due to hEDS...and that they’d be so progressively debilitating: am now in my second year on long term EEN (Elemental Enteral Nutrition (predigested amino acids) because i cannot digest food at all and am hyperreactive to food residue). Basically, i concentrate on how lucky i am not to be on parenteral nutrition (yet) and how well all my chronic gastro symptoms stay damped down on EEN (including pain) + immunology’s long term daily antibiotics + IVIG & my lupus meds (pred + myco + hydroxy + amitrip).
My medics all say that my 65 years of conscientious lifestyle management means my multisystem debilitation is less bad than it would’ve been. I just wish i’d understood more about hEDS & my other comorbidites from the beginning...but the science wasn’t as understood as it’s becoming now...
When the doctor said l will never grow taller, she said l may always wear high heels.. So l wore them for years and l often wear them now, with osteoarthrosis and pain just because people laugh at them who are smaller then they. I want to try for my ruined joints PRP or hyaluron acid injections - PLEASE WRITE IF YOU TRIED IT because l can't make a proper decision.
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Wow, just wow to all who have posted comments, it was suggested to me a few years ago that I have hypermobility and ya know I've never really thought much about it or how it effects me in general. I have no regrets for what I have done in the past. I used to be active in a different way than I am now, I can't walk that far now as I did then, my feet and legs ache, burn and become tired quickly, it takes time for them to re couperate.
All Dr's want you to remain active and to stay fit, to a degree we can just not how they want us to.
I never thought I'd end up in a wheelchair at the age of 50, never intended or thought I'd be like this at this age.
When I do walk my legs feel and become weak, I loose balance to.
I did all the things a younger person does, I walked hills, walked long distances, and now every hill I do climb is a challenge for me, I don't do this frequently either.
I have no regrets, live life to the full, there's nothing I could of wished I'd known or wished for accept to be able to work longer without the stress and wished there was something that I could of done to prevent this from happening to me, but there wasn't and isn't. If you know about things then you often worry to much about it or panic at trying to change how your future could be. Somethings you can change other things you just have to ride with them.
You can't change your dna, can't change what is inside your cells you was born with. So you just have to deal with it.
I wish id never over pushed my spine like i did, when i was doing gymnastics and dance, I over played my joints so much that the majority of them are now very painful. I have osteoarthrits in my hips shoulders and spine. When i wa younger i would force my body to almost breaking point to see if i could make it bend. I have hypermobility in 90% of my joints. Now my life is painful unbalanced and reclusive. I would do loads when i was a child dance gym to county level swimming riding horses and motorcycles, after several bad accidents ive learned that was i was doing was just ripping my joints andthe sponges inbewteen them. If only someone had known back that that being a contortionist was not going to end well. As they say hind sight is always 20/20 and we have to live with the consiquences. I just wish this phynominon was reaserched and financed better than it is. This could stop the next generation of those with this condition ending up the same way
I want to reply. Not able to right now, but later.
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