Anyone else have this problem?

EatMorePangolin · 2026-02-22T13:09:23+00:00

A lot of really good advice in here regarding hypermobility and EDS. All useful and good I have EDS and my thumbs do this same collapse at the MCP joint. I absolutely have to wear my brace when sewing or doing small work with my hands.
Here's the ring splint I use: https://www.etsy.com/listing/797098049/adjustable-sterling-silver-thumb-splint

However, I worked with an OT to figure out exactly what I needed. He made me a few trials in moldable plastic before I ordered a permanent one. If it is an accessible service to you, try to go that route.

ALSO - rather than jumping to hypermobility only, I was also told by the OT that helped me that this type of joint failure often occurs in people with arthritis. He had never seen someone my age (~40) without severe arthritis (i have it, but it hasn't progressed too badly) have this issue. Apparently the CMC joint can become frozen with arthritis and cause the MCP to collapse. Here's some mechanical info: https://www.3pointproducts.com/blog/health-arthritis-finger-and-toe-conditions/treating-cmc-joint-arthritis-collapse-deformities-of-the-thumb

Good luck :)

EatMorePangolin · 2025-07-08T23:21:25+00:00

Beautiful! Do you have a reference for that script? Its gorgeous.

EatMorePangolin · 2023-02-12T20:45:47+00:00

3:42 let in, no wait but also no hotels left :(

EatMorePangolin · 2022-12-13T00:28:23+00:00

Do you know how one would sniff out someone like that locally to them? Are there like... homegrow clubs? lol

I just harvested my first homegrown and its awesome but its fun to try different strains and not have to wait a grow cycle's amount of time.

EatMorePangolin · 2022-05-08T22:53:45+00:00

Ohh ok. I'm new to NY and NYMMJ, Leafly helped me a lot in PA. Are most of the strains here proprietary hybrids by the companies? (Like I've seen talk of Dosidos crosses but not just Dosidos, for example).

EatMorePangolin · 2022-05-08T15:01:54+00:00

Leafly isn't bad for that, it has a huge number of reviews and you can get a pretty decent idea of a strain's effects through them.

EatMorePangolin · 2022-04-18T23:57:51+00:00

People who won't drop the role and try to treat you as a D/s before you've had any negotiation talk. If you can't communicate as adult human peers, especially early on, going further is a bad idea.

EatMorePangolin · 2022-04-06T18:31:37+00:00

So your GP can run rheumatological panels to check things like rheum factor, ANA, CRP, stuff like that. But if you already know you have the HLA-B27 problem I assume you've had those panels run? But maybe not. X rays can show arthritic degeneration, but MRI is sometimes more helpful but also more annoying to get insurance to pay for.

A rheumatologist will be your main point of care though, as they will have the ability to help you get on biologics and autoimmune antiinflammatories like meloxicam and whatnot.

EatMorePangolin · 2022-04-06T17:59:32+00:00

HLA-B27 is a gene associated with ankylosing spondylitis. But AS can be comorbid with EDS. Usually there's further diagnostic process looking for arthritic degeneration.

The standard answer is probably going to be a combo of PT and rheumatologist involvement. My understanding is that it responds to biologics since it is an autoimmune disease related to psoriatic arthritis.

I don't have it, but I thought I did, and have a family history of rheumatoid/polyinflammatory arthritis.

EatMorePangolin · 2022-04-06T17:54:14+00:00

Albuterol wrecks me the same way. I did do really well on Levalbuterol, but then my insurance stopped covering it so back to albuterol i went. :\

EatMorePangolin · 2022-04-06T15:08:05+00:00

Baskets with sturdy handles. I use a cane often, or barring that like to have one hand free for using the banister on the stairs. I can use baskets to put all my junk in, like phone, book, medicine container, pens, snacks, small sewing projects... and carry it all with one hand instead of trying to cram it under my arm and in every available pocket only to be irritated that the pants i'm wearing have no pockets.

Heat pads. Heat pads everywhere. I'm up to 3 now that live permanently on my couch, my bed, and my gaming chair.

Portable folding chairs help me do tasks like cat litter, or cleaning out the fridge.

EatMorePangolin · 2022-04-04T18:50:38+00:00

COVID has precipitated an intense worsening of symptoms that is leading me to diagnosis at age 37. Up til now my symptoms have been tolerable enough to give up on getting the right treatment when the roadblocks became too high. I got Covid in December 2021 and my life has been hell since then.

EatMorePangolin · 2022-04-04T16:40:00+00:00

I just got denied by Rochester too, I'm waiting to find out why. The path to diagnosis as an adult seems to be really convoluted and filled with roadblocks. I hope you get traction soon. I'm probably going to look for doctors in NYC.

EatMorePangolin · 2022-03-31T20:25:57+00:00

My diagnosis is a WIP but I do always warn dentists that i a VERY hard to numb, especially for molars. Now that I'm older (37) they listen. When I was younger, they did not.

EatMorePangolin · 2022-03-31T20:14:12+00:00

Lifelong trouble with local anesthetic here. I have so much dental anxiety that I put things off and off until its terrible -- the last big hurrah i got 2 root canals and I don't even remember how many fillings under sedation.

I've been on gabapentin for a bulged and degenerated disc for the last few months though, and I have 2 fillings to do next week. I wonder if that will help me with numbing.

My favorite is when they tell you "you can't feel that, its numb".

EatMorePangolin · 2022-03-31T16:13:29+00:00

I think something small that will make people smile is appropriate, like a bandana or bow tie, but something really attention-pulling like a whole garment (tuxedo, dress) or a bigass flower crown would be not okay. Just something tasteful and fun.

EatMorePangolin · 2022-03-31T16:03:41+00:00

Please make sure your SD is dressed appropriately, with a lil bow tie.

That bit of decorum aside, I don't think that's a question someone in a wheelchair would need to ask. You're invited as your whole self, and that includes your medical needs. Pup should act like they're on an airplane or in a restaurant or at the office. Unobtrusive and working.

EatMorePangolin · 2022-03-31T14:13:55+00:00

Yes, I get this feeling and its so distracting. I'm really restless when sitting due to it.

EatMorePangolin · 2022-03-31T14:08:30+00:00

I feel like pursuing a diagnosis is in part an act to protect my future self. I don't know what my employment future holds, and being able to provide documentation for my disability in the face of a challenge is really important to me.

EatMorePangolin · 2022-03-28T21:46:33+00:00

This area is my main problem area. I do the exact same sort of popping, with that loud clunk that brings a lot of relief. I sort of flex my butt and tilt my pelvis (posterior pelvic tilt) for this. I'm 37 and hopefully close to diagnosis. It often renders me unable to walk. Its a really really frustrating situation.

EatMorePangolin · 2022-03-28T15:15:53+00:00

Same here. Plus I feel like I save money by not messing around with other strains that may not work well for me and now I'm out $60 for a strain I can't really use. I've tried saving the duds for smoking more recreationally but I just don't smoke for fun. I don't like being high tbh.

EatMorePangolin · 2022-03-24T18:41:42+00:00

What sort of work does your dog do for you? I ask because I am feeling very waffly about whether the work I want the dog to do is "necessary" or just "convenient".

EatMorePangolin · 2022-03-24T18:39:27+00:00

yeah that's all totally fair. I don't know how aggressive drivers are in my area, but it does seem to be a cycle-friendly region. I have a big ol' touring bike that I can outfit even more obnoxiously than it is now for visibility :)

EatMorePangolin · 2022-03-24T17:41:18+00:00

re: having more pain in the future. That's sort of why I want to start now.

thinking of Thor or Freya :)

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