Hypermobility and treating a thumb that keeps falling out of place?

[marlunette]

My right thumb subluxed in my sleep two weeks ago. My PCP told me to wear a splint for 4- 6 weeks and if it doesn't improve we can look at surgery. It continues to kind of fall out of place if I don't wear a splint but over time it has become more stable though it's not perfect yet. I also ice it twice a day and go without the splint or ice for 30 min - 1 hour so my thumb doesn't wither too much.

My ME/CFS specialist has said I have hypermobility but I don't fit the criteria for hEDS. When I asked my PCP if he thought this was connected to hypermobility, he said no and that it was a common injury. My specialist is in another state so I can't go show them my thumb.

I'm wondering if there are any treatment protocols given the hypermobility? Am I just being paranoid?

I have never seen anyone that specializes in hypermobility or been treated for it. I went through a weird period early this year where I started developing symptoms similar to hEDS (my joints felt unstable, my hip fell out of place for a few days, my stomach wasn't digesting fiber, and my connective tissue felt too weak to support me) but it went away with other ME/CFS treatments.

I think I fall on the hypermobility spectrum because I had dislocations as a child. I was very flexible when I was younger and I'm still flexible for my age, though my hamstrings are tight. I scored three on the Beighton. I look young for my age and I have stretchy skin. I also have a bunch of MCAS symptoms though I need to get the test done, and it supposed to affect connective tissue as well.

 

[Judee]

Am I just being paranoid?

Please don't feel like that just because a PCP shrugged off your concerns.

I'm wondering if there are any treatment protocols given the hypermobility?

I don't know if this would help but kinesiology tape works pretty well without weakening the muscles like a splint or a brace per my chiropractor. You might be able to find some videos on youtube on how to use it for your situation although doing the taping yourself might be a bit tricky.

Hope you get some help and some confirmation of what is going on.

 

[Foxglove]

they make finger splints for people with EDS. a knowledgeable PT might be able to help fit one. Supposing anyone knows anything in your area and supposing you could get a referral.

They can also just be bought off the internet, atlhough I haven't tried this and don't know how it would work out. The joints I have the most trouble with are not so easy to splint.

There are utilitarian and decorative styles.

 

[Foxglove]

My ME/CFS specialist has said I have hypermobility but I don't fit the criteria for hEDS.

What criteria were they using, do you know?

Do they know about Hypermobility Spectrum Disorders? If your hypermobility is bothering you and you have stretchy skin and so on, you might fit into that. (Tbh, if you have stretchy skin you might fit a different type of EDS.)

 

[Moof]

As others have said, you can get a thumb splint to stop it being painful, which might be especially useful at night.

You may eventually end up with a fixed subluxation (I have these in both hands). This is where the thumb can return to its normal position, but you can also bend it into a weird shape at will. It's not unusual in bendy people; nor is it painful or problematic once established, as the joint has just set like that.

 

[marlunette]

Please don't feel like that just because a PCP shrugged off your concerns.



I don't know if this would help but kinesiology tape works pretty well without weakening the muscles like a splint or a brace per my chiropractor. You might be able to find some videos on youtube on how to use it for your situation although doing the taping yourself might be a bit tricky.

Hope you get some help and some confirmation of what is going on.

Thank you for your support! I will see if my husband thinks he can help with kinesiology tape! Based on the Youtube videos I don't think I'm going to be able to apply it with y left hand. I'm very right hand dominant, haha.

 

[marlunette]

What criteria were they using, do you know?

Do they know about Hypermobility Spectrum Disorders? If your hypermobility is bothering you and you have stretchy skin and so on, you might fit into that. (Tbh, if you have stretchy skin you might fit a different type of EDS.)

They ran through the Beighton 2017 criteria and I don't meet it. They think I have Hypermobility Spectrum Disorder. I am not sure if I can consider that an official diagnosis or if I have to see a different specialist before I can say I have HSD. I kind of ignored it because ME/CFS and MCAS were causing me way more symptoms.

 

[marlunette]

As others have said, you can get a thumb splint to stop it being painful, which might be especially useful at night.

You may eventually end up with a fixed subluxation (I have these in both hands). This is where the thumb can return to its normal position, but you can also bend it into a weird shape at will. It's not unusual in bendy people; nor is it painful or problematic once established, as the joint has just set like that.

View attachment 34427

Thank you! It's reassuring to know that it's not painful or problematic eventually. I woke up with my left thumb subluxing, so it seems like this isn't going away any time soon, lol.

 

[Kmorfas]

My right thumb subluxed in my sleep two weeks ago. My PCP told me to wear a splint for 4- 6 weeks and if it doesn't improve we can look at surgery. It continues to kind of fall out of place if I don't wear a splint but over time it has become more stable though it's not perfect yet. I also ice it twice a day and go without the splint or ice for 30 min - 1 hour so my thumb doesn't wither too much.

My ME/CFS specialist has said I have hypermobility but I don't fit the criteria for hEDS. When I asked my PCP if he thought this was connected to hypermobility, he said no and that it was a common injury. My specialist is in another state so I can't go show them my thumb.

I'm wondering if there are any treatment protocols given the hypermobility? Am I just being paranoid?

I have never seen anyone that specializes in hypermobility or been treated for it. I went through a weird period early this year where I started developing symptoms similar to hEDS (my joints felt unstable, my hip fell out of place for a few days, my stomach wasn't digesting fiber, and my connective tissue felt too weak to support me) but it went away with other ME/CFS treatments.

I think I fall on the hypermobility spectrum because I had dislocations as a child. I was very flexible when I was younger and I'm still flexible for my age, though my hamstrings are tight. I scored three on the Beighton. I look young for my age and I have stretchy skin. I also have a bunch of MCAS symptoms though I need to get the test done, and it supposed to affect connective tissue as well.

Try coban tape it’s not as sticky a kt tape. Also prolotherapy can help alot

 

[marlunette]

Update on my thumb:

The splint helped but my thumb still hurt. I had to wear it throughout the day or it would fall out of place and it got harder to massage back into place. Then my left thumb started popping out of place while I was asleep and continued to do so while I was awake.

I started a new job three weeks ago and I was self conscious about the splint, especially since it was slowly down my typing and stopping me from writing or sketching. Somewhere I had read about the Cusack Protocol for hEDS so I decided to research potential supplements that might help my mild hypermobility issues.

The bottle of aloe vera pills was about the same price as a splint for my left hand so I decided to try it. After a couple of days my thumbs quit popping out of place and while they still hurt they felt stable when I used them. I continued to wear my splint on my right thumb at night just in case.

Two nights I had to go to a community meeting for work and got home late. I skipped all of my pills because I was so tired and went to bed. I woke up in the middle of the night with my left thumb out of place so I massaged it back into place and then switched my splint to my left thumb. I woke up a few hours later with my right thumb out of place.

Last night I took all of my pills and my left thumb stayed in place. I'm typing this comfortably without a splint right now. It's probably just a coincidence but I'm going to stick with the polysaccharides for another month or two.

 

[marlunette]

Update on my thumb:

The splint helped but my thumb still hurt. I had to wear it throughout the day or it would fall out of place and it got harder to massage back into place. Then my left thumb started popping out of place while I was asleep and continued to do so while I was awake.

I started a new job three weeks ago and I was self conscious about the splint, especially since it was slowly down my typing and stopping me from writing or sketching. Somewhere I had read about the Cusack Protocol for hEDS so I decided to research potential supplements that might help my mild hypermobility issues.

The bottle of aloe vera pills was about the same price as a splint for my left hand so I decided to try it. After a couple of days my thumbs quit popping out of place and while they still hurt they felt stable when I used them. I continued to wear my splint on my right thumb at night just in case.

Two nights I had to go to a community meeting for work and got home late. I skipped all of my pills because I was so tired and went to bed. I woke up in the middle of the night with my left thumb out of place so I massaged it back into place and then switched my splint to my left thumb. I woke up a few hours later with my right thumb out of place.

Last night I took all of my pills and my left thumb stayed in place. I'm typing this comfortably without a splint right now. It's probably just a coincidence but I'm going to stick with the polysaccharides for another month or two.

Another update: My left thumb starting falling out of place again so I got a splint for it too. My right thumb has been falling out of place every night in its splint, but my left thumb stays put. It seemed like the polysaccharides were no longer helping so I quit taking them. Other than wearing splints and having to massage my thumb back in place every morning, things are going okay so I guess this is my new normal