Hypermobile Spectrum Disorder / HEDS

[wordywitch]

Just wondering who else lives with this condition and how it impacts your life?

I’ve obviously always been hypermobile but it didn’t really cause problems until my pregnancies when I had severe SPD / pelvic girdle pain, and then became a daily pain in my late 30s. I’m now 45 and it has severely impacted my life to the point I had to change my career as I couldn’t be on my feet all day (NHS) and take daily painkillers. It’s affected my ability to do the exercise I loved (running and long distance hiking) and my ability to do more strenuous household chores. And that’s besides the fatigue and the mental health toll of living with chronic pain every day.

Just looking to connect with others who can relate.

Sorry to hear you are struggling.

I have a related CTD, I used to be hyper mobile but now have arthritis literally everywhere and am stiff and uncomfortable all the time & fatigued as a result. I've had joint replacements which helped a lot but the issues are so widespread it's just not possible to replace the lot!
I gave up work altogether at 50, managed my desk job until then but it was a struggle towards the end.
I do lots of water exercise but nothing outside the water & my DH does most of the housework.
I would say though that despite less than great health, I have a very nice life with plenty of enjoyment; giving up work has meant I have enough time and energy to do nice things and I love spending my time just as I please! Is there any possibility of cutting down your work in future? Or setting out a plan to do so?

Sorry to hear you’ve had similar pain struggles.

I worked in various jobs after leaving the NHS, mostly home based. I’m currently trying to give freelancing a go but it’s unpredictable and not substantial money. Looking at the possibility of getting a part time job in a shop to help supplement that income as I’m unable to work full time in any role, but I worry about how I’ll cope with shifts and being on my feet lots again. I’ll have to ensure it’s a job where there’s a mixture of standing/walking and sitting as doing either for too long is unbearable.

Do you have a partner who works? I often feel guilt that my DH works full time and I am barely doing 15 hours a week currently. Things are tight financially because of that.

Hello, I have hyper mobility and almost certainly EDS but as is typical I can’t get a rheumatologist appointment to actually formally diagnose.

mine affected my teeth, I’ve had gum recession since a teenager
my digestion, severe ibs with multiple diarrhoea trips a day
my pelvis, hips and spine and I’ve had two surgeries and expecting a third
my skin, I scar and heal badly from surgery which has resulted in infections and longer healing times
also exhausted and in pain constantly, my shoulders and arms are sore
ive never found any exercise I can do for more than a few weeks as my joints just don’t agree
I gave up one career 20 years ago and fear I’m going to lose another as I’m off sick with pain from a labral tear that has knocked me for six.
my legs sometimes don’t work, like all my ligaments lock and I can’t walk
my skin stretches and sags and look awful
my feet are knackered and I can only wear supportive shoes and my feet sound like popcorn when I walk.

im sure there is more but pain means brain fogs too!

My DH is retired. We luckily piled a lot into pensions at an early age and both had redundancies making giving up possible. Kids leaving home and mortgage being paid off was the turning point.
I've been doing aqua for about 4 years consistently, it definitely helps.
(Bowel issues here too just to add to it!)

I have hEDS and several of the usual comorbidities that go with it. It's the fatigue/pain cycle that's the worst for me really, one feeds the other and as I'm allergic to all opioids I am expected to exist on paracetamol and lidocaine.

@FurForksSake That is really tough, I’m sorry you have so many complications from it. It’s such a debilitating condition!

That’s awful, can they try you on different class of drugs besides opioids? Can you take NSAIDs or Cox-2 inhibitors?

I have hEDS. I’ve have the comorbidity of fibromyalgia, I’ve taken all the drugs, done the pacing, physio etc etc.

The best thing I’ve found for helping my symptoms is to strength train. It has genuinely been life changing for me my pain is so significantly reduced I no longer take any medication at all.

I do use a personal trainer to help me because I have extremely poor proprioception and could if I wish move beyond a normal range of motion. My PT helps to make sure I’m moving safely and has been superb in making exercise adaptations for me along the way. I suffer far less with fatigue and fibro flares. I was diagnosed 14 years ago at age 28 and I’m the healthiest I have been since pre-diagnosis.

I wish I’d known before the difference it would make to me. Hope this helps as something you could consider to help you.

@ChillyB that’s so positive! I hope once I’m mobile again I can find a hypermobile-friendly pt and strength train. My lack of muscle has probably resulted in my third hip labral tear.

I did strength training with a PT twice a week for 14 months and it did help some but never made me pain free or able to stop painkillers completely. I have let it slide though and only do it once a week, I’m going to try to get back in the habit of 2-3 times a week.,

I have hEDS and POTS. I’ve always been very hypermobile and had weird symptoms which in hindsight now make sense. Sister is the same. After multiple GP visits I was initially diagnosed with fibromyalgia 12 years ago. But after a really bad chronic flare up of symptoms since surgery 2 yrs ago, I’ve seen various consultants and finally got diagnosed with hEDS, then POTS. Before the surgery I had moderate flare ups not that regularly, as well as low level chronic ongoing symptoms. Since the surgery, it’s become much worse and awful. I mostly cope with pacing, I’m lucky I don’t work, but some days I can literally do nothing. Other days I can feel a lot better, my symptoms can fluctuate greatly. However I’ve recently got the Visible monitor and app. Bit like a Fitbit but geared for pacing for people with ME/CFS/hEDS/POTS/Long Covid/fibro. I’ve found it super helpful as I was boom or bust and kept having crashes. On good days I pushed myself too hard and was then ill the next day. Also a real eye opener what pushes my HR up and exhausts me. I would recommend it. From your HRV it can pick up irregularities with your autonomic nervous system which I really struggle with, and it’s pretty accurate. Gives you a daily rating between 1-5 and warns you if you’re not stable therefore avoiding overdoing it and crashes. Now looks like I’m having MCAS issues too as I’m getting a reaction to loads of foods and other things, seeing Dr next week. It’s so debilitating so I sympathise with others who have it. I use to be really active and fit.

Nope, can't take them either (one ibuprofen will give me gastritis). The joys of severe GORD.

I’ve just had a physio assessment, I have sciatic pain and almost certainly a hip tear. I’m in huge amounts of pain. I live with pain daily due to the hyper mobility and back issues and now the hip. She gave me a leaflet on “flipping pain”. I smiled and followed the link but I don’t know how to feel.

she told me my range of movement was good, well yes, I’m hyper mobile! I told her this at the outset. It doesn’t mean I’m not in pain when doing movements, I am very compliant and will do as I’m told and then come home and cry :( 😢