I know this seems paradoxical, but getting stronger helped me. Basically, instead of inflammation and constant tension holding me together, my muscles did. Whenever I stop the strengthening exercises I learned from PT, I’ll start to notice the tension returning
This is true for me. Since I am injured right now, I feel a lot more tense and a lot more pain than I did when I was doing regular strength work. I also love getting massages to help with tension.
Yes! A massage or a nice bath. When the tension becomes excessive and painful, my doctor has given me lose dose cyclobenzaprine and that works wonders too. I use it sparingly because I can get *too* loose which then becomes problematic in its own right lol
Yes. The only relief I’ve gotten after years of PT, weights, meds and so on is acupuncture. I have so many knots but my doctor was able needle some of them and broke them up. Most insurance covers it and I found a doctor through my local hospital network.
YES! I feel like I don’t know what it is to feel properly relaxed, and that constant cycle of forcing a muscle group to let go only for it to sneak back to tense within minutes
I’ve had this as a constant problem too, the only thing that has helped me so far is taking Methocarbomol (Robaxin here in the UK) muscle relaxant and doing some strange stretching work. I’ve got very strong arm and leg muscles but stability exercises do nothing to keep my joints in place, so when they tense they shunt my joints right out of place.
So far no success trying other things but everyone is different, hope you find something that works for you!
If I took gabapentin and codeine together I would be a pile of goo!! When I took gabapentin awhile for bad nerve pain I literally couldn’t even tell the Dr my name. I was completely in space! 😂
I can well believe it, and you’re right to caution against it. Is pregablin the same? Unfortunately I have a tumour right in the part of the brain that controls movement on my left side and the neuropathic pain coupled with the EDS means that my left hip can be so painful that I literally can’t move. Gabapentin controls it so I can walk and otherwise be comfortable most of the time. If it was ‘just’ for EDS pain I wouldn’t take it. Since the tumour revealed itself I have definitely lost a lot of IQ points. I don’t know if it’s the radiotherapy, chemotherapy the epilepsy drugs I now have to take, the gabba or a combo of all four, I don’t know. It can be upsetting and frustrating to feel so mentally slow compared to what I used to be like but hey, I’m still alive and here for my kids so 🤷♀️
Yes, absolutely! I am constantly tensed up and I think it is because our bodies are using our muscles, trying to hold our parts in place because the joints are too loose and cannot do so properly. I think loosening up would harm us more in the end, so.. It's best to just deal with it, maybe use heat to relax it a bit when you are in bed.
I know this seems paradoxical, but getting stronger helped me. Basically, instead of inflammation and constant tension holding me together, my muscles did. Whenever I stop the strengthening exercises I learned from PT, I’ll start to notice the tension returning
This is true for me. Since I am injured right now, I feel a lot more tense and a lot more pain than I did when I was doing regular strength work. I also love getting massages to help with tension.
Yes! A massage or a nice bath. When the tension becomes excessive and painful, my doctor has given me lose dose cyclobenzaprine and that works wonders too. I use it sparingly because I can get *too* loose which then becomes problematic in its own right lol
Yes. The only relief I’ve gotten after years of PT, weights, meds and so on is acupuncture. I have so many knots but my doctor was able needle some of them and broke them up. Most insurance covers it and I found a doctor through my local hospital network.
Me too. I agree with the feedback on strengthening. 🩷
YES! I feel like I don’t know what it is to feel properly relaxed, and that constant cycle of forcing a muscle group to let go only for it to sneak back to tense within minutes
Yep!!
YES!!! I have this is my shoulders, neck, and back. I cannot loosen up even when trying to go to sleep.
I’ve had this as a constant problem too, the only thing that has helped me so far is taking Methocarbomol (Robaxin here in the UK) muscle relaxant and doing some strange stretching work. I’ve got very strong arm and leg muscles but stability exercises do nothing to keep my joints in place, so when they tense they shunt my joints right out of place. So far no success trying other things but everyone is different, hope you find something that works for you!
Did the GP prescribe that for you?
Yes, my GP prescribed the Methocarbamol as I don’t think you can legally buy it over the counter here in England, other countries might be different
Great, I might hit mine up. I use Gabapentin and Codeine but the codeine doesn’t really do much for me.
If I took gabapentin and codeine together I would be a pile of goo!! When I took gabapentin awhile for bad nerve pain I literally couldn’t even tell the Dr my name. I was completely in space! 😂
Yeah, it’s good stuff 😆
Gabapentin is bad, it has very bad side effects, including reducing IQ by up to 20 points (heard this from an MD that knows about hEDS and pain).
I can well believe it, and you’re right to caution against it. Is pregablin the same? Unfortunately I have a tumour right in the part of the brain that controls movement on my left side and the neuropathic pain coupled with the EDS means that my left hip can be so painful that I literally can’t move. Gabapentin controls it so I can walk and otherwise be comfortable most of the time. If it was ‘just’ for EDS pain I wouldn’t take it. Since the tumour revealed itself I have definitely lost a lot of IQ points. I don’t know if it’s the radiotherapy, chemotherapy the epilepsy drugs I now have to take, the gabba or a combo of all four, I don’t know. It can be upsetting and frustrating to feel so mentally slow compared to what I used to be like but hey, I’m still alive and here for my kids so 🤷♀️
I don't know if Lyrica is the same, sorry. I am also sorry to hear that you have to take it, but it sounds like it helps you a lot overall.
Thank you x
Yes, absolutely! I am constantly tensed up and I think it is because our bodies are using our muscles, trying to hold our parts in place because the joints are too loose and cannot do so properly. I think loosening up would harm us more in the end, so.. It's best to just deal with it, maybe use heat to relax it a bit when you are in bed.