Hi,
I would love to properly introduce myself before posting a question, but just can't right now and I would really love some insight. It's taxing to type right now, but I'm desperate.
I have been bed bound except for shuffling to the bathroom for almost four months now. Have been having burning/abraded type pain where I'm in contact with the surface I'm lying on. Started in the tops of my thighs really early on because I was overusing the muscles before I knew what was wrong with me, and I hadn't yet connected that I couldn't tolerate a laptop or food tray on my lap (so I was just bearing with the horrible pain without realizing what I was doing was causing it). At my worst, I couldn't even set extremely light things on my lap for a second - the pain was too bad. Then more recently one hip I lie on began to get the same sensation (along with a patch of little red dots - I was staying of this hip for a long time once that happened), then the other started up too, and now my butt as well. If I can stay off them, the pain fades down, but as soon as I lie on them for too long, it starts creeping up again and can get quite bad. Have been trying to shift position as much as possible, but I'm now getting to the point where there just isn't time for one body part to stop hurting before I have to cycle around and lie on it again. The pain is definitely related to pressure/weight on the body part, and seems to be only in my lower body so far (though if my cat lies on my arm for too long, I'll get a milder form of the same sensation).
We've been adding layer after layer of things to reduce pressure to my couch and bed (wool pads, foam padding, etc.) which helps a bit but it seems to still be getting worse and worse. I'm scared to take any hard core pain killers to stop the pain because if it is some sort of pressure injury or something related, I need to know when it's getting bad so that I can try to shift off of that area. Doctor just says to move around every half hour (I'm already needing to move before then and it's all still getting steadily worse). Seems very over her head with all the weird symptoms and tends to just lump them in as "CFS stuff" rather than looking any further for specific causes. Can't get into a specialist who knows what they're doing yet.
Can't tell if this pain is the beginnings of a pressure injury from being bed bound, or if it's a "normal" CFS/Fibro type thing. ...Or possibly related somehow to the multitude of other symptoms I'm having, of course (in particular, blood pooling, circulation issues or bleeding problems - have also had some capillaries bursting when I have massage, and when I stand my feet turn red with white blotches and itch like mad). Has anyone else had this type of pain that is only brought on by pressure? Did you figure out what it was?
Thank you so much for your help. I'm feeling so lost here already with everything else going on with me. Did not need this puzzle on top of it. And I'm so scared that I might make something worse...
I would love to properly introduce myself before posting a question, but just can't right now and I would really love some insight. It's taxing to type right now, but I'm desperate.
I have been bed bound except for shuffling to the bathroom for almost four months now. Have been having burning/abraded type pain where I'm in contact with the surface I'm lying on. Started in the tops of my thighs really early on because I was overusing the muscles before I knew what was wrong with me, and I hadn't yet connected that I couldn't tolerate a laptop or food tray on my lap (so I was just bearing with the horrible pain without realizing what I was doing was causing it). At my worst, I couldn't even set extremely light things on my lap for a second - the pain was too bad. Then more recently one hip I lie on began to get the same sensation (along with a patch of little red dots - I was staying of this hip for a long time once that happened), then the other started up too, and now my butt as well. If I can stay off them, the pain fades down, but as soon as I lie on them for too long, it starts creeping up again and can get quite bad. Have been trying to shift position as much as possible, but I'm now getting to the point where there just isn't time for one body part to stop hurting before I have to cycle around and lie on it again. The pain is definitely related to pressure/weight on the body part, and seems to be only in my lower body so far (though if my cat lies on my arm for too long, I'll get a milder form of the same sensation).
We've been adding layer after layer of things to reduce pressure to my couch and bed (wool pads, foam padding, etc.) which helps a bit but it seems to still be getting worse and worse. I'm scared to take any hard core pain killers to stop the pain because if it is some sort of pressure injury or something related, I need to know when it's getting bad so that I can try to shift off of that area. Doctor just says to move around every half hour (I'm already needing to move before then and it's all still getting steadily worse). Seems very over her head with all the weird symptoms and tends to just lump them in as "CFS stuff" rather than looking any further for specific causes. Can't get into a specialist who knows what they're doing yet.
Can't tell if this pain is the beginnings of a pressure injury from being bed bound, or if it's a "normal" CFS/Fibro type thing. ...Or possibly related somehow to the multitude of other symptoms I'm having, of course (in particular, blood pooling, circulation issues or bleeding problems - have also had some capillaries bursting when I have massage, and when I stand my feet turn red with white blotches and itch like mad). Has anyone else had this type of pain that is only brought on by pressure? Did you figure out what it was?
Thank you so much for your help. I'm feeling so lost here already with everything else going on with me. Did not need this puzzle on top of it. And I'm so scared that I might make something worse...