More noticeable symptom recently is that kneecaps are very cold but legs either side ok temperature wise. Noticeable in past few months so perhaps weather related? Different from the " internal cold bones" general feeling as seems just to be knees. Joint pain is a background general symptom which ramps up in PEM and during period. " termites in joints" is a feeling that comes and goes. Anyone else have this?
I do occasionally get cold patches. I'm not sure if it was restricted to my knees though, but it may be that I just didn't notice until it spread. Or that I haven't remembered. I get cold thighs - from the knee to halfway up the thigh, sometimes the whole thigh. The leg above and below feel "normal" , but I am aware the affected part registers as feeling cold and when I touch it, or get IM to in case I'm imagining it, it feels cold to touch. It is a distinctly different feeling from the cold bones which actually hurts. I suffer from joint and muscle pain that is manageable for me with pacing. I'm not sure about the termites feeling in the joints.....is that itchy sore? My is more burning. I have no answers, unfortunately.
Termites have also been described as " bees buzzing" . I don't think it is sore ( though pain is very relative given other pain thresholds) It is a " fizzy" feeling in joints. Very weird.
No, I don't think I've experienced this in a specific joint, but occasionally in a hand or foot (not symmetrical), or soft tissue. It doesn't hurt, just a sensation. One of the issues I have with the buzz/vibration of my HR monitor alert is that it can feel very similar and I've ignored it assuming it's just that tingle/buzz/vibration that happens from time to time.
I don't know whether this is the same as what you are getting, but when I go out in my wheelchair in the winter my kneecaps can get very cold because sitting in the wheelchair they are sticking out, unlike when walking. They stay cold for hours after I get inside in the warm, unless I put a hot water bottle on them for a while. Maybe you could try a hot water bottle or heat pad on them? (But don't burn yourself like I did ).
Thanks @MerryB . The weird thing is that this is when indoors with legs under blankets. If it was simple circulation I would gave thought that lower legs would have been colder too . Hot water bottles are good. Its not sore, just very cold. Weird in a world of weirdness.
I get cold knees when in bed too. I tend to wear nighties, as I find pyjama trousers lead to too much bunched up material under my legs that my sensitive skin doesn't like. In cooler weather particularly, even if I'm otherwise warm in bed, my knees often feel cold. I find it helps to wear longer nighties and make sure they cover my knees. Sounds daft. Why my knees in particular? No idea. Maybe there's less blood supply there with the bony kneecap near the surface. I get cold feet too, but not necessarily at the same time. Aren't we odd creatures.
I've always had this too. I just put it down to the fact that my kneecaps protrude more than average. But even when lying in bed with the elctric blanket on, it still happens.
Yeah, that's what I thought too, which is why I got IM to check them too. Nope, warm either side of the cold patch.
