What helps?

One of my worst problems is muscle pain. With Hypermobile EDS, your collagen is compromised so the stuff that helps to hold your joints together isn't built right. Therefore, the muscles have to work too hard to hold things together.

One of my physical therpists explained to me that a strong muscle will not knot or spasm as easily as a weak muscle will. That made so much sense to me, as it was how I could lay on the sofa all week but still feel achy.

For me, the best way to deal with muscle spasms and knots are heat, or some sort of pressure held against the knot for 15-20 sec to release it. For that I have used the Backnobber, but found that I really have to be careful to not use too much pressure as sometimes it would cause a different muscle knot the next day.  Sometimes it can be just right for hard to reach places in the neck and shoulders.  I also use a ball that has a little give to it, like a tennis ball or small massage ball:

The Backnobber

Tennis Balls, for Myofascial Release

Massage Balls

Sometimes, I can't deal with standing in line, I get fidgety because my knees and ankles hyper-extend. These days, I'm doing better with being able to walk short distances, but sometimes I still feel like I need to conserve energy for whatever is I'm trying to get to, and use a wheelchair to get there. Airports are the main place where I use a wheelchair, I tried walking recently and ended up getting a bit woozy after it took a long time to get through security.

Some cool wheels

Sleep issues seem to be an issue for many of my Spoonie Buddies. My favorite thing is my memory foam mattress I bought 10 years ago. It has just enough give so I can sink into the mattress, but firm enough to have support. I bought it after I realized that I was going through mattress toppers every six months! I know some Spoonies that don't like memory foam because some contract heat and can add to night time sweating, but there are newer versions out now that incorporate cooling gel as a top layer. I haven't had a problem with that, as I sleep with a fan on in the background for white noise, and always have high quality jersey knit sheets on the bed. My favorite ones are from Lands End and I get some new ones whenever they have a good sale as they don't last forever, but they are so comfortable and help with temperature management (not too hot in the summer, not too cold in the winter)!

Memory foam mattress pads: At least 1 1/2" thick

Gel Memory Foam Mattress- AFW

Cotton Knit Sheets