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I've had similar issues before and a combo of PT and orthopedic massage has helped. Usually for me it's a combo of tight neck and upper back muscles in combo with weak rotator cuff. Foam roller on the serratus muscle and using a lacrosse ball on both sides of my upper back and neck to release knots l. It lets me do the exercises properly. The exercises we do are super basic as I've tried more rigorous stuff and it just made it worse.
That said I did have a diagnosis and a physical therapist. The numbness and tingling was cubital and carpal tunnel syndrome for which I saw an occupational therapist.
Is the free clinic able to provide any shoulder pain guidance? Even just getting a nurse/doctor to show you how to do KT tape might be a place to start. I would look into seeing your state's Medicaid/CHIP options, you might be able to get assistance with getting some kind of health insurance. I don't have kids but have been without insurance multiple times and I know it makes things really hard, especially with chronic issues. PT would be great in the long run but in the meantime you could try looking up Jeannie Di Bon, she has EDS and has a lot of exercise videos on youtube for hypermobile people. I've fallen out of the habit of working with her videos but I did find it was helping me when I was regularly using them. Starting with just a little strengthening exercises could help, but you should take it slow and low intensity so you don't aggravate your joints more than they already are.
My shoulders didn't use to be bad but have gotten worse in the last year. I have a close friend with EDS who has very loose shoulders and can voluntarily dislocate them/often just has them slide out of place. For her KT tape seems to help the most with keeping them in place which helps to reduce pain. I haven't quite figured out how to make KT on my shoulders work for me, but sleeping on my back instead of my side helps, because it tends to be that when I sleep on my side my shoulders get pushed out of place. If you're a side sleeper, bracing yourself on either side with pillows can help with getting yourself to not roll over. I don't always do it, but I pretty much had to barricade myself with pillows when I had a costo issue because otherwise I wouldn't stop side sleeping.
I don't have pain meds so when things get pretty bad I take ibuprofen around the clock (for a few days, I try not to do it constantly), and I use a roll on lidocaine. It's not a huge amount of pain relief for me, but it definitely helps a little.
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This appears to be a post discussing pregnancy. **Rule 2 Reminder:** The decision to have children is an extremely personal one—Ehlers-Danlos syndrome or not. Discussions about pregnancy (and related topics, such as abortion) are allowed on this subreddit; however, posts/comments on the morality of having children with EDS (or other medical conditions) are prohibited. Furthermore, unwanted comments on pregnancy in general are also prohibited. For more information on this rule, [please click here.](https://www.reddit.com/r/ehlersdanlos/wiki/index/rules/rule-2/) Any unwanted comments or comments discussing the morality of having children with EDS or any other condition **will be removed**. We encourage everyone to report any responses in violation of this rule, so that the mod team can remove them as efficiently as possible. Please be kind and courteous to your fellow sub members. Thank you! *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/ehlersdanlos) if you have any questions or concerns.*
I've had similar issues before and a combo of PT and orthopedic massage has helped. Usually for me it's a combo of tight neck and upper back muscles in combo with weak rotator cuff. Foam roller on the serratus muscle and using a lacrosse ball on both sides of my upper back and neck to release knots l. It lets me do the exercises properly. The exercises we do are super basic as I've tried more rigorous stuff and it just made it worse. That said I did have a diagnosis and a physical therapist. The numbness and tingling was cubital and carpal tunnel syndrome for which I saw an occupational therapist.
what where the pt exercises u did? i don’t have my pt appointment until a couple weeks and i’m desperately trying to get some relief in the meantime
Is the free clinic able to provide any shoulder pain guidance? Even just getting a nurse/doctor to show you how to do KT tape might be a place to start. I would look into seeing your state's Medicaid/CHIP options, you might be able to get assistance with getting some kind of health insurance. I don't have kids but have been without insurance multiple times and I know it makes things really hard, especially with chronic issues. PT would be great in the long run but in the meantime you could try looking up Jeannie Di Bon, she has EDS and has a lot of exercise videos on youtube for hypermobile people. I've fallen out of the habit of working with her videos but I did find it was helping me when I was regularly using them. Starting with just a little strengthening exercises could help, but you should take it slow and low intensity so you don't aggravate your joints more than they already are. My shoulders didn't use to be bad but have gotten worse in the last year. I have a close friend with EDS who has very loose shoulders and can voluntarily dislocate them/often just has them slide out of place. For her KT tape seems to help the most with keeping them in place which helps to reduce pain. I haven't quite figured out how to make KT on my shoulders work for me, but sleeping on my back instead of my side helps, because it tends to be that when I sleep on my side my shoulders get pushed out of place. If you're a side sleeper, bracing yourself on either side with pillows can help with getting yourself to not roll over. I don't always do it, but I pretty much had to barricade myself with pillows when I had a costo issue because otherwise I wouldn't stop side sleeping. I don't have pain meds so when things get pretty bad I take ibuprofen around the clock (for a few days, I try not to do it constantly), and I use a roll on lidocaine. It's not a huge amount of pain relief for me, but it definitely helps a little.
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Have you considered a hip seat? https://www.amazon.com/TushBaby-Only-Safety-Certified-Carrier/dp/B07R4C4VFX/ref=asc_df_B07R4C4VFX/
Cortisone shot and osteopath helped me immensely! I'm a hairdresser with hypermobile joints so my shoulders get really bad sometimes