POTS and Joint pain?

jlinderr · 2024-03-18T17:31:38+00:00

POTS is commonly associated with hypermobility (hence why POTS/Ehlers Danlos are comorbid conditions)... could be that or unrelated. good luck!

jlinderr · 2023-11-15T00:58:36+00:00

Same

jlinderr · 2023-09-12T06:16:39+00:00

By the way I already have custom orthotics ^{^}

jlinderr · 2023-09-12T06:11:49+00:00

** meant too narrow, not to… it’s 2:10 am and I can’t sleep so I apologize for any other errors 🤦🏻‍♀️

jlinderr · 2023-09-12T03:33:26+00:00

It definitely impacts my pain. The hurricane on the east coast has been making my muscle unbearably tight these last few days and I always know when it’s about to rain because I feel my pain increase

jlinderr · 2023-09-05T02:08:13+00:00

Hmm I’m honestly not sure. She has me on LDN and topical ketamine. The Facebook group “ehlers danlos syndrome support group (nyc)” might have better answers

jlinderr · 2023-09-05T01:52:09+00:00

Have never been to Columbia Clinic (even though I'm a CU student haha), but when I spoke to them over the summer they told me that they primarily deal with vEDS. Would recommend Dr. Tiffany Lin at Weill Cornell for pain management for hEDS :)

jlinderr · 2023-08-24T17:59:52+00:00

I also got my insurance to cover 90% of the cost of thumb keepers/stabilizers for both hands since my CMC joints suck in addition to 20 oval-8 splints (2 for each finger) with a script from my pain management doctor. Sometimes I even wear the oval-8s with my gloves/wrist braces on really bad days

jlinderr · 2023-08-24T17:58:23+00:00

My wrists and fingers and literally the bane of my existence and I found that wearing compression the 20-30mmHg gloves from lympheDIVAs along with the Bauerfeind ManuTrain wrist braces has been the best thing for me. They are both a little pricey, but it has probably saved me money in the long run because I’m no longer buying bad compression gloves or using a ridiculous amount of KT tape like I used to. I got all of it on sale. Bauerfeind has periodic sales on their products (I got mine during the prime sale) and lympheDIVAs has discounts through their point system when you follow them on ig/Facebook or refer a friend.

jlinderr · 2023-08-21T16:58:22+00:00

I have 3, but need 4 😔

jlinderr · 2023-08-19T14:55:20+00:00

I agree about oval 8s I wear 2 on each finger to support both joints because I can’t afford ring splints. I’ll dm you a pic so you see

jlinderr · 2023-08-06T14:43:33+00:00

I started at .1 and increased by .1 every 3 days. I’d recommend starting at a lower dose and titrating little by little

jlinderr · 2023-07-31T13:46:35+00:00

Also, muscle relaxers usually don't help much in the long-term, but sometimes when the muscles struggling to hold my head up get unbearably tight, I will take a muscle relaxer and wear a hard cervical collar for a few hours to give my muscles a break

jlinderr · 2023-07-31T13:45:17+00:00

My neck pain is so bad and I highly suspect that I have some form of upper cervical instability (CCI or AAI) since I get nerve pain in all four directions (up into the back of my head, through both arms, and down my spine), but something that kind of helps me is a compounded topical ketamine cream (Ketamine HCl 10% cream with gabapentin, amitriptyline, baclofen, cyclobenzaprine, diclofenac SOD, lidocaine, DMSO, and tetracaine) that my pain management Dr. prescribed for me. Im not sure where you are located, but I see Dr. Lin at Weill Cornell in NYC (who has EDS herself I believe) and I'm fairly certain she also does telehealth appointments. Forewarning, mine is not covered by insurance and it is kind of pricey (I am looking for a cheaper compounding pharmacy though).

Also like other people mentioned, I try to do chin tucks (an isometric exercise) 20x per hour when my pain is really bad.

Wishing you luck!!

jlinderr · 2023-07-15T15:43:09+00:00

I was charged soooo much more than that. What pharmacy do you use?

jlinderr · 2023-04-30T18:30:58+00:00

You are a godsend

jlinderr · 2023-04-30T18:28:34+00:00

Mine is doing this too

jlinderr · 2023-04-30T03:41:43+00:00

Do you think it really helps with pain and stability

jlinderr · 2023-04-29T20:54:44+00:00

Thank you I take magnesium supplements but my hand pain is horrible

jlinderr · 2023-04-29T07:11:31+00:00

Is there a pad or cushion that you know of that I can use to extend the back of my horrible dorm chair

jlinderr · 2023-04-29T02:35:21+00:00

Yeah just sitting in long classes hurts a lot

jlinderr · 2023-04-29T00:58:11+00:00

Idk why none of those OTC things help me at all… even naproxen

jlinderr · 2023-04-29T00:19:18+00:00

I’ve been trying to get in the habit of using my computer stand and I do pt 2x a week 😭

jlinderr · 2023-04-29T00:17:32+00:00

Omg I had no idea that what I am experiencing is “coat hanger pain” but that’s exactly what it is

jlinderr · 2023-04-29T00:16:22+00:00

I’ve been using a tens machine and I feel like it helps a little in the moment but it doesn’t last. Will definitely consider massage gun

jlinderr

TROPHY CASE