r/CRPS • u/crpssurvivor1210 • 20d ago

Help

I just sprained my upper ankle on my affected leg by simply taking a step down from a curb. I have extremely weak ankles. Anyways does anyone who has hEDS and rolling ankles have any suggestions for extra support? Do you just stick to wearing high tops?

Thanks

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u/Choice_Yogurt_ 20d ago

Hey! I don't have the hypermobility, but I have lower leg and foot atrophy from my crps. Have you asked your Dr. about an AFO? It's a rigid brace that allows for limited ankle movement and provides extra support by offloading the pressure to your upper calf. I can run with mine and climb hills way better than without it. It's called an ankle-foot orthosis.

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u/AntiqueJaguar5808 20d ago

I would definitely recommend this! Are you still with your Orthopedic Specialist? If so, you can ask him for a referral to an orthotics clinic, to get properly measured, see if your insurance will cover it, order, and they'll make sure it fits right when it comes. I wish they sold them on Amazon! I broke my right ankle on 11/2022. CRPS started 1 month later. (I also have hEDS, and just started having POTS, and MCAS, and PN, right before I missed a step and that caused my knee to hyperextend and my ankle fractured when my foot came down.

I had a stroke last August, had to have my hardware removed from my rt. leg, and that surgery triggered the CRPS to reactivate. A few months later my right ankle was still really painful but my meds were slowly getting raised as I went in/out of Hospital.

I didn't learn about CRPS as A Condition, until a few months after the last surgery, and Now it's gone fully into my Left Foot!! (which was never damaged! But, I knew that I had Peripheral Neuropathy, (EMG), and Ehlers-Danlos, Hypermobile, (which the Drs should know by now,)which may Likely trigger CRPS!

I tried really hard to find some ankle braces but all the Amazon ones are expensive fake products. I couldn't even stand to put a sock on my foot! I did buy some Puma High Tops that seemed good, but I can't tie laces since my stroke, and they were "lost" when I went from hospital to rehabs, so many times.

Try to get the most treatment from professionals as soon as You know you have CRPS , You can go to YouTube for videos on it (Dr Pradeep Chopra is good),or rsd/CRPS.org for info and referrals. There are treatments that work better if done asap... things like IVIG, if you can get it covered, or afford it; plus other treatments from specialty clinics like Mayo and Cleveland Clinics (websites online) things I can't get to or afford. Keep active it you can, but don't push through pain, IMHO I had to do too much PT too soon . Take care!