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Vent of insecurity

May 21, 2019 2:57 PM

I can no longer leave the house without a mobility aid. I need crutches to move around because my knee is collapsing for so far unknown reasons - not meniscus, not arthritic, no total tear of a tendon - and I couldn’t aks the orthopedist for more insight because he wanted to send me straight to a psychiatrist.

Now going for a second opinion and in a month, to see a neurologist. GP said I am def hypermobile, he assumes hypermobility syndrome or EDS unless some other condition is diagnosed that explains it. But that does not explain the collapsing knee.

I will walk the first maybe 20 steps of the day fine. But then it gives out under me. I can catch it before falling generally. But I have taken more than one fall.

If it’s not linked to being bendy, I don’t care much. Either it goes away or I just use crutches, whatever. But my chronically painful other joints, if the collapsing knee is a sign of something that can happen to the rest of my joints too, where does this lead? I just want to know it’s not systemic. That is all I care for.

But I guess I have a long time to wait.

May 21, 2019 3:15 PM

Hi joshie I’m Shore nice to meet you Welcome 🙏🙏🌈🌈

May 21, 2019 4:33 PM

Hi Joshie, welcome to the community. I'm sorry you have chronic pain and the problem you're having with your knee. Is there a brace they can give you? I think a rheumatologist treats EDS. Maybe after you get your knee treated you can try going to one. They might be able answer your questions.

May 21, 2019 8:34 PM

Hi Anibsl lover how are you ? Up date on my ears. They are getting some more better .
Joshie I hope your knee feels better soon. Hug to all 🤗🤗🙏🙏🌈🌹 Have a nice night

May 24, 2019 11:43 AM

Welcome Joshie! I'm sorry you are having so much chronic pain & collapsing of your knee. But there are many EDS sufferers in the community, so you'll have lots of helpful info and suggestions. It takes getting use to needing mobility aid devices; I had to start using a cane, then a rollator, and motorized carts, beginning about 2009-2010 forward, for a long list of chronic pain conditions. Eventually I got use to ignoring the judgemental looks from others in public. And eventually those I see often in public stores realized I use what I need because I have to. Do your research and find a good doctor who is very familiar in treating EDS. You may have to go further but it's worth it for a good doctor. Hugs love & prayers you have a good weekend! 🙂❤🙏🌼

Jun 06, 2019 6:13 AM

Thank you all for your kindness!! I got diagnosed with hypothyroidism today, suspected to be Hashimoto’s. So I am getting meds for that. And I am sick of waiting for doctors to whine about how young I am so I am borrowing a walker until I can buy one.
My knee has turned nasty, by now we suspect a peripheral neuropathy And that my knee collapsing is actually a sign of partial paralysis.

I found out that I have been in full body pain for a long time without realizing. My myofascial pain is everywhere and intense.

Jun 06, 2019 8:50 AM

Wow, the hypothyroidism can make you feel bad too! It took me several years and being sent to an endocrinologist to find out I have it, because my thyroid gland is assymetrically damaged; I'm taking Synthroid (aka Levothyroxine) & Liothyronine for T3 & T4 replacement. It has really brought beneficial changes from head to toe. Don't feel bad about using a walker, no matter what others may say or looks you may get. It happens, and you have to do what's best for you. No one but you knows your body & pain better than you do! I have the neuropathy too and it can mess with your walking for sure. And the myofascial pain causes my knots to be awful painful. I purchased a roller for muscle knots (on Amazon) and it hurts some, but it's also what helps break down the knots quicker. You could use a rolling pin too, just do so with gentle pressure. Take it easy today and let your body rest up from yesterday's activity. Hugs love & prayers it's a good day for you! 🙂❤🙏🌼

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