After some advice

[Lizzog]

I'm 57 yo post menopausal woman with hypermobility and POTS (POTS only diagnosed in 40's after much pushing with medical profession). I take HRT and meds for POTS.

I'm suffering with a number of tendonitis issues and wonder if anyone has any advice about this? At the moment it's achilles tendonitis, and before that it was gluteal - both are slow to heal and are really getting me down as I had been doing some running (not far or fast, but still!), and love walking.

I've seen a physio who has given me some exercises for the achilles tendonitis, but most days it's too painful for me to do them.

Any advice?

[cyberbarn]

Just because we have EDS doesn't mean to say we can't have other things too. For instance achilles tendonitis can also be a sign of psoriatic arthritis.

I have hEDS, but felt something else was going on. Eventually a rheumatologist diagnosed me with psoriatic arthritis as I had other symptoms of that.

I am not saying you definitely have it, but I do think sometimes EDS can mask other conditions. For instance if you have Long Covid you can have MCAS, but if you have EDS suddenly they are adamant that MCAS doesn't exist, it is just your EDS!

[FredaN in reply to cyberbarn]

It really is frustrating, isn't it? The constant need for some consultants to tie your symptoms into an already existing condition, but if they don't, then you can't have it. Not all consultants obviously, otherwise no one would ever diagnosed.

I think I might have achilles tendonitis, which I think I read is also tied to lupus as well as the types of spondyloarthritis (psoriatic, inflammatory bowel diseases etc). I have psoriasis and had a positive ANA test (reported as negative, but I don't know why), yet somehow ended up with a diagnosis of Fibromyalgia, even though the pain is in my hands & feet, sometimes elbows & knees. Twice they've said I don't have EDS, which I'm not entirely sure about either, to be honest (elbows and knees are hypermobile, I think). I asked about MCAS and was laughed at. I have to take antihistamines everyday otherwise I break out in hives and sometimes find it hard to breathe. I keep meaning to try to test myself for POTS at home, as I've had some signs of that for probably about 20+ years.

So yes, Cyberbarn is right, it might be connected to something else entirely. I don't know much about running, as I don't do it myself, but could it be connected to footwear or gait? And I expect both can be connected back to the EDS, as I'm guessing you'd need more support in certain areas (like if ankles are a problem). I'm just thinking out loud there, so ignore me if I'm wrong!

[Lizzog in reply to FredaN]

I've had a gait analysis done when I bought my (very pricey!) trainers, and I don't think that helped ultimately as I've had nothing but issues since I started running with them. They are like wearing slippers and don't offer very much in the way of support. My feet and toes are all over the place! I've seen a msk podiatrist who has given me inserts, but even with them, I don't feel like I've got enough support. I'm waiting for a physio to get back to me to say if she thinks wearing an ankle support is a good idea as walking uphill or any incline, is painful at the moment.

[Lizzog in reply to cyberbarn]

|It's hard as I've never had a formal diagnosis of EDS, but I have with POTS and when they did the Beighton Score test I scored quite highly. I have periods when I feel like my body is much more prone to getting issues with tendinitis- and am definitely in one of those phases at the moment. I'm trying to find exercise based help with someone who is knowledgeable about hypermobility but am finding that hard!!