91. Hand Problems in EDS with Corinne McLees, OT and Hand Coach

[@mariondorvalBodyvoiceFlow]

Very helpful, as a writer I needed tips and infos. Your help me to help my body and my art ;) Thank you!

[@bendybodiespodcast]

I am so glad you found this helpful. Corinne is a wealth of information! Have you listened to any other episodes?

[@lisabreton9236]

Again, another discovery as to why my career as a dental hygienist, was harder for me with my hands, elbows, and neck, I wasn’t diagnosed until 59 1/2, and by that time had been disabled almost 10 years from that career, mostly due to a failed three disc cervical fusion. However, listening to this episode, it reminded me of when even in my 20s I was wearing very light comforting support on my hands and splints so often when I was sleeping. I was just thought it was the demanding career, but always was curious why other colleagues could work so many years without any problems with their hands at all. Now I’m sure it was all connected. Plus other tendon ligament problems in my feet and ankles, pain in knees and back. My rheumatologist saw that my knees bent backwards last year and recommend genetic testing for EDS. That was negative but she definitely found hypermobility. Again thank you Dr. Bluestein!

[@bendybodiespodcast]

Wow! It sounds like being a dental hygienist and being hypermobile and incompatible! I am so glad you found this episode helpful. What part resonated with you the most?

[@lisabreton9236]

@@bendybodiespodcast I would say all the facts relating to my history of carpal tunnel, arthritis, pain this last year above the wrist on my left hand, particularly that my rheumatologist thought it might be psoriatic arthritis. Now during the night I have tingling in both hands, so I need to invest in better splints than the ones I have, which I didn’t wear lately because I seem to be more uncomfortable with them during the night. Also, a history of on and off ulnar nerve problems. I’ve avoided all surgeries with yoga and splints up until now. I will be researching the splints and exercises that were shown in this episode. Thank you thank you!

[@bendybodiespodcast]

You are most welcome!

[@maryr7593]

If medical equipment" not cove under health insurance in US, you can keep all your expenses and receipts and put into the medical expenses deduction portion of your income tax return. Keep track of all co-insurance and the rx costs. All can be deducted through you itemized deductions. (You may just want to take the standard deduction...but others might be able to put it in the taxes. Another option is to try to bill the insurance directly using diagnosis codes the medical folks give.)

[@bendybodiespodcast]

Thank you!

[@vizinat2020]

Very helpful. Thank you.

[@bendybodiespodcast]

I am so glad you thought so. What part resonated with you the most?

[@vizinat2020]

The therapy exercise techniques & equipment suggestions were extremely helpful. I've gone through PT several times and inquired about hand help. I was told to get theraputty, but not really instructed on how it should be worked. Apparently I was squeezing the putty faster and harder than I should have been which caused more hyperextension in my finger joints. Slower definitely feels much better.@@bendybodiespodcast

[@bendybodiespodcast]

That is so great to hear and I agree. The devil is definitely in the details!

[@HildaEspinal-b7b]

looking for the links offered in session? where can I find them please?

[@bendybodiespodcast]

Check the show notes on the website under the specific episode. www.bendybodiespodcast.com/

[@mariethedicedragon5977]

Differences that I found at least with my experience with working with a PT & an OT: my PT tends to be very focused on the least mobility aids possible where my OT has always asked me from a what do you thin you need & why and lets go from there... Best example: i have issues with my hips & knees, but the worst part of my issues is nerve damage cause by a mix of an extra bone in the arch of each foot making it feel like im walking on legos even when sitting. When i said to my PT i was in so much pain i used my cane to push my office chair to the printer at work, i think i need a wheelchair, his response was "why dont we try a walker first?" ... My OT? Yeah that seems like a reasonable thing to look at, lets see pros & cons.

[@bendybodiespodcast]

Thank you for sharing that. I am glad you have multiple people involved in your care as it can help to get different perspectives.

[@lauralestrange8351]

Thank you so much for this. I have a silicone allergy, so a lot of things don’t work for me.

[@bendybodiespodcast]

That stinks and I hope you are able to find some thing(s) that help!

[@maryr7593]

I have a really hard time knowing what is within normal range of motion vs what is out of range? Drs always say...dont go out of range...but I never knew how it what is normal vs not. Has there been a video that an show this? With measurements and angles...so we can actually see what is normal in a non-hypermobile person. Every hypermobile person might have a different ranges but knowing what out of bounds and why it is bad to be out of range.

[@bendybodiespodcast]

That is an excellent suggestion and I will add it to my (ever growing) to do list. Have you listened to other podcast episodes? Although we may not cover this as specifically as you mentioned, there are definitely episodes that may be helpful.

[@findingcraigie]

How do you get diagnosed with tendonitis? Which dr diagnoses this and how do they diagnose it? I have had pain for 5+ years in various body parts, and they never tell me what it is. They just send me to pt, and I'm really tired of not knowing exact what it is.

[@bendybodiespodcast]

Sports medicine or PM&R (Physical Medicine and Rehabilitation) are what I would consider to be non surgical musculoskeletal experts. I hope that helps.

[@carolyndinsmore8077]

I’ve never been diagnosed with joint hypermobility, but in the last 3 years, I had a trepeziectomy, and later 4 corner surgery on my right hand. I’ve always been flexible and may have other hypermobility characteristics. Should I pursue a diagnosis for EDS, and if so, what type of specialist should I contact for help?

[@bendybodiespodcast]

Have you listened to the episode, "Pursuing a Diagnosis with Linda Bluestein, MD?" I think this might be helpful. www.bendybodiespodcast.com/42-pursuing-a-diagnosis-with-linda-bluestein-md/

[@louiseyoung1231]

Thanks. I have hypermobility & thumb arthritis. I also have Raynaulds & some sort of dysphagia. Could those be from hypermobility?

[@bendybodiespodcast]

Thumb arthritis is very common but does seem to happen more in those with hypermobility. Have you watched other episodes? Making a diagnosis of a connective tissue or hypermobility disorder requires a full history and physical examination. I hope you find the other episodes helpful.

[@louiseyoung1231]

@bendybodiespodcast I have listened to quite a few episodes. I've never been diagnosed but been told by physical therapists that I am hypermobile. I mention it to my doctors but they never suggested going for a diagnosis. Maybe I need to seek one. Thank you 💗

[@bendybodiespodcast]

That is so ironic@@louiseyoung1231 ! I just interviewed two PTs today and was telling them about how I found out I was hypermobile. It was my PT who pointed out ~2011 that I had many joints with excessive range of motion. There is a podcast episode on getting a diagnosis but I need to address this topic again because it is so important. I hope you find that episode helpful!🎙🧬

[@louiseyoung1231]

@@bendybodiespodcast wow! I always knew I was "double jointed" but had no idea how bad it was until physical therapy. Thank you. I will check out that episode. Thanks for what you do. It's super helpful to us Bendy bodies 💗

[@bendybodiespodcast]

You are most welcome and thank you for the kind words,@@louiseyoung1231 !

[@charlottestandage2765]

Thank you for this. I am having pain in my CMC joint especially whilst writing. And im looking for options to help decrease the pain. I have hEDS and both thumbs are hypermobile. I just got the metagrip brace for my right hand...and have contacted silver ring splint by Zomile in the UK. Thank you for so much for this talk. Xxx

[@bendybodiespodcast]

You are most welcome and I am so glad you found some tips. Have you listened or watched any other episodes?

[@theprairierose4613]

Would we be able to order the ring splints covered by HSA or FSA.

[@bendybodiespodcast]

I think Corinne may have mentioned that in the episode but definitely check with your own plan details.

[@marsy1480]

Cutting harder vegetables sometimes makes my thumb feel like it's going to snap right out

[@bendybodiespodcast]

Me too! The PushMeta Grip definitely helps!

[@marsy1480]

@@bendybodiespodcast oooh, thank you! I was thinking that it looked rather fabulous! It will be on my list when I next have some spare money!

[@bendybodiespodcast]

@@marsy1480 💜

[@marsy1480]

I have hands like that too and my feet are the same!

[@bendybodiespodcast]

Can you elaborate?

[@marsy1480]

@@bendybodiespodcast long slender fingers and hands like Corinne. My feet are also long and narrow. I'm in the UK and take a shoe Uk size 9 (sometimes 10) and had to get AA width shoes which I had to get from a specialist shop when I was a teen. Now that I'm not as young I get really tired and have to rest a lot as my back gets so tight. I'm definitely not meant to be vertical 😁

[@marsy1480]

Forgot to say that I’m only 5ft 4 1/2” (that half an inch matters when you are not so tall) 😆

[@bendybodiespodcast]

@@marsy1480 🤯🦓

[@marsy1480]

@@bendybodiespodcast I think I’d better get tested then…your programme has been invaluable. I’m going to find Corinne and watch all I can. When you are ‘your’ normal, how are you supposed to know what is and isn’t normal range of motion 🤔 Thank you once again!

[@marsy1480]

I had no idea I was hyperextending when writing 😮.

[@bendybodiespodcast]

Interesting! 🤔 Did you pick up some useful tips?

[@marsy1480]

@@bendybodiespodcast loads thank you! And my son is also bendy in parts, which I found out more bits today after showing him the pen holding! Both been tested for Marfans but both clear for that. Not gone down the EDS testing route yet.

[@bendybodiespodcast]

@@marsy1480 has he watched too?

[@marsy1480]

@@bendybodiespodcast only the bit about holding the pen. He gets bored quickly if it's a topic he isnt into as has ADHD (was diagnosed as ADD/HD 15 years or so ago).

[@bendybodiespodcast]

@@marsy1480 makes sense.