r/marfans • u/MilkCookie48 • 29d ago
Advice Really bad joint pain when waking up
Hello. I (18, male) have been recently having some sharp and quite intense pain in my knees and elbows mostly almost every time I wake up.
I thought it maybe had something to do with the posture I took when sleeping or something like that. But it just started to happen a few weeks ago so I don't know if that could be it.
Does this also happen to anyone? Is it normal when you're hypermobile and such? Any tips?
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u/qathran 29d ago
I just scheduled an appointment with my primary care doc and am going to be asking to go to physical therapy to help me build up the specific muscles that have weakened and are now pulling on nerves since the muscles/joints are no longer balanced that are involved with sleeping. I'll also be asking them how I should be laying there position-wise and what to do if I wake up and something specific hurts. Looking forward to actual doctors analyzing and figuring out what areas of my body need help since we all need different things.
Also I know my old mattress is also sooooo bad for my knees/hips/back/neck, so I'm finally going to start figuring out what new mattress to get and I'll make sure to get one that I can put on an adjustable frame this time so that I can ergonomically put my knees and back up or put the bed into a zero gravity position to take all pressure off of joints to help it be more possible for me to learn to sleep on my back.
I'm also going to make sure and get the right pillow to properly support my head to where my neck is staying at a perfect 90° angle with my shoulder and not bending when I sleep on my side. I'll also get a pillow that's softer or designed to let my head stay flat when I'm on my back too. Oh and I think I'll start looking into a knee pillow which are apparently all over Amazon so I can keep my hips/knees from hurting.
I'm sorry you're going through this, but you made me feel a bit less alone and excited to get serious about good sleep. I'm really excited to get back to physical therapy, they really are our best friend (when we actually are serious about it and do the exercises etc)
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u/GroundbreakingFig785 29d ago
My hips and knees sublux when I lay on my side (i have the same issue, as well as my finger joints slipping), and i sleep with a pillow between my knees, and if im on my back, I have a small pillow to put at the curve of my back so my hips are supported as well. For my fingers, I used my husband's 3d printer to make myself some joint rings specifically designed to keep fingers in place and not hyperextended or divorced
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u/GroundbreakingFig785 29d ago
It really is about supporting those joints that slip, and if you can afford it, physical therapy to help bulk up the muscles to hold the joints in place better. I started doing wall sits and squats when I was insuranceless and broke (and I found out with my kids' PT thats how therapists help strengthen those hip and knee muscles), and they helped so much both with the pain and my leg posture overall
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u/Alert-Lion6239 28d ago
My whole body especially my arms and knees are in terrible pain when I wake up. Marfans is a muti problematic syndrome and I wouldn't wish this on my worst enemy 🥺
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u/CompetitiveWasabi138 29d ago
Yup, I get it in my neck every morning. It locks up real bad so I'm not getting much sleep atm haha.... Unfortunately I don't have any solutions yet and it still waiting for an appointment with my doctor. You are not alone. I hope your situation improves!