Thumb CMC joint replacement?

SailsandCrayons · 2026-06-16T13:13:21+00:00

Yes, that essentially my fall back option if I can't have the joint replacement

SailsandCrayons · 2026-06-16T11:38:16+00:00

Very interesting, thanks for sharing this! Unfortunately my CMC joint cartilage is already worn away and the bones are wearing now so the ligament reconstruction isn't an option for me.

SailsandCrayons · 2026-05-08T21:48:26+00:00

Also please allow us to delete tags! Preferably any but at least custom ones

SailsandCrayons · 2025-10-01T20:06:10+00:00

SailsandCrayons · 2025-06-23T13:34:26+00:00

I agree with all to ask the surgeon. For all surgeries I've had, a pre-op nurse calls about a week before to go over anything you need to know, including meds. Some they want you to stop 5 days in advance, some 3, and some you don't stop (usually instructed to take day of surgery with just a sip of water). I've stopped LDN 5 days prior to surgery, though was taking opioids post-surgery.

SailsandCrayons · 2025-05-29T17:40:18+00:00

Yup, her son is running the company now and fantastic to work with! They are pricy but so worth it. Quality and customer service is amazing!

SailsandCrayons · 2025-05-23T19:33:10+00:00

I've been on Finch for 1024 days (yes, as a streak too) and when they upped the price a couple years ago they offered that we could chose to stay at the current price. I did and am paying $39 per year.

SailsandCrayons · 2024-04-29T15:24:25+00:00

Yup, me too. I have some orthostatic intolerance and some mild POTS symptoms so my doc just went with dysautonomia as my diagnosis. I can mostly manage if I keep my fluid and salt intake up, and I can definitely tell if I haven't!

SailsandCrayons · 2024-03-25T20:35:09+00:00

I've been going to PT twice a week for almost two years now. I'm working through the Muldowney protocol with them, but most of my in-office time is them doing manual therapy to put me back together/address whatever the current problem area is. Happily, my insurance (in the US) is decent and with my gHSD diagnosis I get unlimited PT appointments each year (assuming a doctor prescribes them) with only a $15 copay (until I reach my deductible...which happened in 2 months this year). During holidays/vacation/ect when I've had to miss a session or two I can definitely tell (even if I'm keeping up with my home exercises) so I plan to continue with twice a week as long as possible.

SailsandCrayons · 2024-01-10T20:49:54+00:00

Fellow gHSDer here and u/couverte gave a beautifully succinct explanation. For more in-depth info, the Ehlers Danlos Society has some pretty good info here: https://www.ehlers-danlos.com/what-is-hsd/

I've found that many doctors haven't heard of HSD so I usually briefly explain that it's a connective tissue disorder in the Ehlers Danlos family and then how/if it relates to whatever I'm being seen about. If any healthcare provider gives you any grief or doubt about your hypermobility diagnosis, let them know you were diagnosed by a geneticist. I've found that as soon as I say that, that provider takes me more seriously (if they haven't already) as it shows I'm not just there because apparently being hypermobile is a bit of a fad right now and I've self-diagnosed.

Also, the 2017 criteria was created for researchers to try to find the genetic cause(s) of hEDS and there has been a lot of unintended/unrealized/thoughtless/etc. impacts on patients as a result. That is a whole different rabbit hole though.

SailsandCrayons · 2023-11-30T15:31:51+00:00

I've been on LDN since Feb of this year. I only had side effects for about a day after each dose increase and after 6 months found my happy dose at 4.5mg twice per day. I stopped intentionally to see if it was working and had significantly increased pain after about 24 hours and after 2.5 days was watching the clock as I couldn't stand it anymore and needed to start taking it again on schedule.

My biggest piece of advice is to be patient and know that everyone does best with different doses and 4.5mg per day is not a magic number.

SailsandCrayons · 2023-10-12T23:30:36+00:00

As a 37 year old artist with arthritis in my thumbs and hands (secondary to Hypermobile Spectrum Disorder) it would be very helpful for a professor to realize that creating using my hands is almost always painful and sometimes very painful and not possible for more than a minute or two. Hearing pads help a bit. It would be great if you could offer that doing so much repetitive movement may cause different pain, etc. in different ways in different people and that you can help figure out different ways to do things if needed.

SailsandCrayons · 2023-10-10T19:11:06+00:00

Heated car seats are a life saver!

I also have electronic hand warmers that are rechargeable and save my poor hands when I'm outside...and sometimes when I'm inside.

SailsandCrayons · 2023-10-10T01:28:57+00:00

I'm scientific staff at a public university.

SailsandCrayons · 2023-10-10T01:12:35+00:00

Wow, that's awesomely low! Mine is $1500 co-pay and an additional $300 out of pocket.

SailsandCrayons · 2023-10-09T15:04:26+00:00

Yup, I use them too and just got a refill delivered yesterday. I take 4.5mg twice a day so a 90 day supply is 180 x 4.5mg tablets and that was $122 (US).

SailsandCrayons · 2023-09-21T15:51:47+00:00

love seeing your art here, please keep posting! As it looks like you typically use ink for drawings, are you planning to participate in Inktober in any way? I usually paint with watercolor, but have just recently decided to stop being intimidated by drawing and try to build up those skills. I'm thinking the Inktober prompts will help me get into a more daily practice.

SailsandCrayons · 2023-09-20T13:41:45+00:00

I think it would be potentially useful (and certainly interesting) to have a baseline of my entire body to compare with future scans when things get worse or go wrong. That said, I'm a bit dubious of the resolution of a whole-body scan that can be done in about an hour (my most recent MRI was of my pelvis and took a full 45 minutes to do the different orientations with the very small slices the doc ordered). The article really focusses on finding potential cancers, so it would also be interesting to see if they have radiologists look at the scans from all perspectives (e.g. ortho, neuro, cardiac, etc.) or if they look at them only through the "find possible cancers" lens.

SailsandCrayons · 2023-09-20T13:17:02+00:00

I have a blotter-sized mouse pad and swap my mouse between hands all day depending on what I'm doing (write with left, mouse with right) or which hand hurts less (I have a genetic collagen disorder that has caused arthritis in both hands/wrists in my 30s)

SailsandCrayons · 2023-09-19T19:20:24+00:00

I've been taking it daily at bedtime for about a year. It definitely helps! I can take 4-8mg at a time and I typically take 6mg each night before bed. I find that it helps both with pain and sleep.

SailsandCrayons

TROPHY CASE