I’m not entirely sure where to put this in terms of symptoms. Lately I’ve been experiencing an incredible amount of pressure in my legs; it doesn’t feel like the muscles, but rather maybe blood pooling (this is most noticeable when I’m horizontal, although I might just be paying more attention to my body when lying down). There is also some - but not a lot of -correlation btwn how much I walk and this sensation but it feels different than muscle weakness from PEM. While I’d never actually do this, the pressure is sometimes so intense that I imagine cutting open my leg if only to relieve the pressure. (Again won’t ever do that, just trying to describe the symptom). Maybe this is related to POTS? Unsure, but it feels different than most of my PEM or muscle weakness/aches and so I’m wondering if anyone else has any experience with something I’m describing and if so if you’ve ever found a way to relieve it.
hi @MikeK When you mention blood pooling that you notice mostly when you are horizontal, i wonder if you see your legs or most typically your feet and ankle more swollen? Because for blood pooling, it is for the most part gravity driven. So if you are horizontal then the blood pooling would go to the body part that is closer to the mattress. I have experienced blood pooling most when i did a tilt table test where the table moves from horizontal to almost vertical, without you moving at all. After a few minutes i could feel the blood shifting and gathering in my feet. When i was allowed to move at the end of the test i asked the dr to take a look because it felt like elephant legs, and indeed the feet and ankles were swollen and purple. It can also happen to your hands, by gravity. Would you be able to tell if it was similar to lactic acid, like when you have a tough work out? This is the sensation i get in my quads. It can happen at rest too, when i have worse days. Is the sensation all over your legs, any higher? Just a section? Muscles? Skin? Tendons? all your toes? Just a few? Both sides? Edit to add: I am not a doctor and not seeking to make a diagnosis on you, and it is definitely against the rules. But i am asking the questions to help you get more precise on how you feel. Sometimes it can be helpful in making a clear description when you visit your doctor about the problem and if it bothers you a lot i think you should do that.
I used to get a similar symptom. It was POTS-related blood pooling. Legs were not obviously swollen but I felt pressure in my legs as if they were full of fluid. I have found three things that helped me with it: 1. Lying with my feet up against a wall provided immediate relief. But this is not a long-term fix and is often not practical! 2. Taking POTS medication. Helped the most as improved circulation and reduced blood pooling. 3. Compression leggings (you can buy them from sports brands e.g. 2XU, Skins, or from a pharmacy). These help if I am going to be upright for a while e.g. going out of the house where I won't be able to put my feet up, as they can help reduce the blood pooling. However, fluid retention in the legs can be a sign of more serious heart problems so if you haven't had your heart checked recently or since the symptom started, it might be worth getting it checked (and being checked for POTS and/or orthostatic hypotension while you're at it, if you haven't already), just to rule out more serious heart problems and identify the most appropriate course of action. My doc did an ECG, ECHO, and active stand test before concluding that it was a POTS symptom for me rather than a more serious heart problem. Not intending to cause concern - I think the most likely scenario is probably OI - related blood pooling but since blood pooling is also a symptom of heart failure it's probably worth ruling that out and confirming with the doc that it is OI rather than anything else. EDTA: also not trying to diagnose you or offer medical advice. I am not a doctor either. Just sharing my experience in case it's helpful, but I would say probably best to get it checked by a doctor to try to confirm the cause.
( Compression stockings are available on prescription in the UK, although weirdly enough, since they come in a pack of two, it's one prescription charge per stocking )
Thanks for the thoughts @Milo and @MerryB - it's helped me think about how to describe this feeling esp. for when I meet with my doctor. To clarify, this sensation is always in my lower legs/calves. I do think it's likely POTS related, since I've recently been diagnosed with that and it continues to get worse. I'll talk to my doctor about it the next time we meet (especially since your description of similar symptoms and what helps seems similar to my experience, Merry).
