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[StarryNight]

Hi there
Im hypermobile and had a terrible time with SPD during my pregnancies. Now Im nearly 50 and Im really struggling with increasing joint laxity, particularly in my knees. Its not painful but I can hardly walk now, esp. as it has caused all the surrounding muscles (quads, calves, hamstrings) to chronically tighten. I went on HRT this summer but it hasnt helped yet (I wonder if the estrogen is making things worse....). Am researching everywhere to try and piece things together, have had physio, seen an osteopath, but nothing seems to help. Just wondering if anyone else has experienced similar, or has advice xx

[bombsh3ll]

It is likely to be the progestogenic component rather than the estrogen.

Additionally you would probably really benefit from androgen replacement which helps strengthen ligaments - men have far less problems with joint laxity.

You would have to say it was for libido to get it on the NHS.

[StarryNight]

Thanks for this. I have wondered if testosterone would help, esp. as the muscles around my knees need building up and get fatigued when I walk. However, my recent blood test came out with testosterone at 0.9 so I dont think it would be prescribed.

I do keep reading that progesterone makes laxity worse, but every time I add oestrogel, I feel it makes thing worse and when I stop (while continuing the progesterone), it gets a little better...its very puzzling.

[elle]

Hi there
Im hypermobile and had a terrible time with SPD during my pregnancies. Now Im nearly 50 and Im really struggling with increasing joint laxity, particularly in my knees. Its not painful but I can hardly walk now, esp. as it has caused all the surrounding muscles (quads, calves, hamstrings) to chronically tighten. I went on HRT this summer but it hasnt helped yet (I wonder if the estrogen is making things worse....). Am researching everywhere to try and piece things together, have had physio, seen an osteopath, but nothing seems to help. Just wondering if anyone else has experienced similar, or has advice xx

Hi StarryNight. I empathise! I've spent the last 4 years trying to find out the cause of severe musculoskeletal pain and multiple episodes of rib subluxation that came on during perimenopause . Also terrible during pregnancies. I've always been hypermobile and since perimenopause my bones and joints have become really loose and painful.GP has referred me to genetics for testing for Ehler Danlos. The last year there has been some improvement but I'm unsure as to whether it's down to things I'm doing/taking or just time, but I'll write a few down in case you want to look into anything. 

I'm currently on HRT- estrogel and utrogestan- looking to get testosterone. I initially thought it must be a decrease in Estrogen and Progesterone but wondering now whether it wasn't fluctuations and hormones spiking during peri rather than a simple decrease. 
I've had a ton of physio and I do low level circuits and strength training as well as daily slow running and walking to build up muscle. I go to the gym and fitness classes through my local leisure centre who run low intensity classes
ESWT on both ankles- available on NHS
I take whey protein powder and creatine to help build muscle strength, being hypermobile means our muscles get fatigued easily as they have to do the job of our faulty ligaments
I've also tried methylfolate - you can find interesting research on Tulane University and methylfolate for hypermobility, my GP was very interested in this
If you do get pain then the free joint pain clinic at Nuffield gyms might be an option. If you have them in your area you may want to ask your GP for a referral. They may even take self referrals
Facebook groups for hypermobility/Ehler Danlos Syndrome can sometimes be useful for consultants/info etc
Pain clinic- for pain management and pharma options as well as physio.Referral from GP or consultant 
Test/scans/bloods etc are always useful to rule out other conditions like RA.
Hokas- expensive but they are amazing to walk in and they always have sales. Every physio I meet recommends them and is usually wearing them
Something I didn't know with hypermobility/connective tissue disorders, it affects all the tissue in your body, so things like gut, veins, lymphatic system etc, not just joints, tendons, ligaments (explained a lot to me with other health issues) 


Jessica Eccles is one of the leading voices on hypermobility,  her work is fascinating. She has info on youtube and her insta account is dr bendy brain I think.Flippin Pain is another good website/youtube channel 

I've had good recommendations on the forum for alternatives to the progesterone I'm on as I suspect this is the rogue hormone making my laxity worse so you might want to play around with different ones. Let me know how you get on with testosterone if you do manage to get it!

I'm still on my journey with pain but I hope things settle for you soon and you get the support you need. Elle  

[StarryNight]

Thanks so much for your reply - this is really helpful. Some of these suggestions Im trying - creatine, methylfolate, resisrance training. And i was a participant in one of Dr. Eccles studies! I will look into Hokas.

I think testosterone might be key, and Im finding quite a bit of published research on its link with joint laxity. Im going to put all the research together in a dossier and take it to my GP. Im also looking into prolozone as an option. Have you considered that?

[elle]

I haven't heard of prolozone, a quick google shows that it might be promising but no robust evidence as of yet. I'd love to know if you hear any more about it or even try it for yourself, what your GP says etc.A couple of other areas I've been looking at are prolotherapy, Platelet Rich Plasma and trying to find out if specific injections would be beneficial. Please keep me updated if you find any avenues that help, like you I've got fingers crossed for testosterone, even if it just means being able to tick it off the list!