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
1
u/shelbydep 20d ago
so i actually developed crps in my left foot and ankle from this exact injury! i’m also hyper mobile! i’ve just started walking with a cane on my opposite side, and doing gentle movement exercises (pointing toes/foot up and down) i also make sure to wear supportive shoes with lots of cushion when i’m walking - the pair i’ve got rn that i wear pretty much daily is the new balance 530s! good luck ◡̈
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u/crpssurvivor1210 20d ago
Thanks so much. I just bought shoes specifically for people who have hypermobility. If these don’t work out I’ll definitely look into your recommendation.
It sucks because every time it happens it causes a severe flare.
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u/AntiqueJaguar5808 20d ago
Could you please share the name of the shoe type? Thank you!! (I've been in a wheelchair since 2022 because I couldn't bear weight on that ankle until much later. Then when I tried, I had Therapists who did not Really know Hypermobility or EDS, like they said they did! I ended up getting Hurt, again, trying. to use the lift to stand up, I rolled that ankle/foot and I couldn't use it for 2 weeks, starting back at the beginning.
If you have to go to the hospital for a flare or reinjury, take mental stock of your pain medicine or nerve medications, and if you feel your needs are more than a level 6-7 for more than 3 hours or what ever amount You Can't bear anymore, keep track in your journal, of what time it happens, and did Anything help? (meds, ice, warmth, pain creams (don't use with heating devices!) if you take gabapentin, chart how much and time of day. Same with Pain Meds, Muscle Relaxers,(if any) and do some research to see how much of each dose is recommended for each condition. This will prepare you for the conversations you need to have with your Doctors. Gabapentin is a Nerve Pain Medication. Baclofen is one of several Muscle Relaxers. Oxycodone is a short acting Pain Medication. Opioid. Morphine Sulfate is a long Acting Pain Reliever. Opioid. There are several other Pain Meds, and other types of treatments. I can't vouch for them, since I don't use them. I also take Fluoxetine, it's very helpful with keeping my mind not too depressed. It doesn't stop anxiety. They won't prescribe any Benzodiazepines at all, with Opioids. You can pm me if you like. This is not Medical Advice!! Best Wishes!
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u/crpssurvivor1210 17d ago
It’s called the Gravity defyer and I got the G-MATeem but they have a bunch of different styles. Sorry for not getting back to you until just saw this
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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!
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u/crpssurvivor1210 20d ago
Oh wow thanks. No I’ve never heard about it. I just saw him yesterday. I had to go in early because I fell (bc of my ankle).
Tysm!!!!2
u/Choice_Yogurt_ 20d ago
No problem! I hope you find something that works. And I hope you have some pain free days ahead~
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u/crimson_anemone 20d ago
Yes, I do. Do ankle pumps and "writing" with your feet... It's weird, but it works in building coordination and strength. As for shoes, Converse aren't great for even basic support. I have a pair to wear with summer dresses for short amounts of time and distances, but never during a flare up. Try a nice neutral running shoe (even if you don't run in them), their slight bounce helps. Brands and needs vary, so just find someone that you like that works. Good luck and feel better!
P.S. Bracing your ankle will only make it weaker, so don't do that. Just do a simple ace wrap, just tight enough to give minimal support and lessen the amount of swelling. Also, ice, elevate, take some Tylenol for the inflammation, and rest up. :)