I wanted to know if any others suffer of sore joints in badly affected areas. I know in my case my knees are very badly affected by acrocyanosis in the winter, and erythermalgia in the summer, and the joints are increasingly stiff and sore. So much so, I can hardly bend down anymore.
I can't help thinking it must be linked to the acrocyanosis/erythermalgia. I also get very sore legs (knees to feet = areas affected by erythermalgia), like I've been running all day, and yet I haven't moved. They are particularly sore at night, though I do manage to sleep in spite of this. Does anyone else get these symptoms?
I don't get any acrocyanosis, but I do get hot flare ups of my legs and knees, aching shins, and I've got some joints that have seized up.
I get flare ups which are a lot like EM in my legs. The affected areas are the bit just above the knee, the knee itself and the shins. It only seems to affect the fronts of my legs.
Not totally sure if it is part of my EM, I suppose it must be. My knees get very hot, and flare ups can be 'put out' by putting cold water from the shower on them. They get hot enough that I can't think of anything else, so they are painful in that sense, but it's not the extreme burning pain I get when my feet flare.
The pain in my shins feels like shin splints, if you've ever had that.
I get blue hands and feet as well as levido reticularis all over my body in the winter and strangely in warmer times as well just not as often. I get the sore joints as well as muscle pain as if I was exercising too much when I have done almost nothing . I get the sore joints all over and the muscle pain only in my legs. I do get EM all over my body so I suppose there could be a correlation. My doctors believe I have a connective tissue disorder so this may be the cause for my joints and muscles. Then again it could still be the EM process too.. Long story long I don't know the cause but i just wanted you to know this happens to me too.
I am sorry this happens to you because the EM pain is enough to deal with without adding this to the mix.
Yes, what you describe is exactly what I get, only in my case it's only in the legs. The pain is highly variable, sometimes very sore, sometimes almost non existent. Thank you for your help. Take care as well!
Yes, what you describe is exactly what I get, only in my case it's only in the legs. The pain is highly variable, sometimes very sore, sometimes almost non existent. Thank you for your help. Take care as well!
Alina Delp said:
Hi lizzy.
I get blue hands and feet as well as levido reticularis all over my body in the winter and strangely in warmer times as well just not as often. I get the sore joints as well as muscle pain as if I was exercising too much when I have done almost nothing . I get the sore joints all over and the muscle pain only in my legs. I do get EM all over my body so I suppose there could be a correlation. My doctors believe I have a connective tissue disorder so this may be the cause for my joints and muscles. Then again it could still be the EM process too.. Long story long I don't know the cause but i just wanted you to know this happens to me too.
I am sorry this happens to you because the EM pain is enough to deal with without adding this to the mix.
I don't get any acrocyanosis, but I do get hot flare ups of my legs and knees, aching shins, and I've got some joints that have seized up.
I get flare ups which are a lot like EM in my legs. The affected areas are the bit just above the knee, the knee itself and the shins. It only seems to affect the fronts of my legs.
Not totally sure if it is part of my EM, I suppose it must be. My knees get very hot, and flare ups can be 'put out' by putting cold water from the shower on them. They get hot enough that I can't think of anything else, so they are painful in that sense, but it's not the extreme burning pain I get when my feet flare.
The pain in my shins feels like shin splints, if you've ever had that.
My legs occasionally get really sore. In the thighs, a deep ache that feels like it's coming from bones, very deep. So far, I haven't experienced it a lot, and only when I lie down to sleep. I wouldn't question it either if I'd been exercising but it happens at the end of a normal day. It keeps me awake until it goes away. Another inexplicable pain. I do get shooting pains as well in my legs (I've got one in my lower left leg now) but apparently that can be 'normal' if you have EM.
I do get very sore achy joints but for 40 plus years, far too long for it to be put down to EM. I have almost always had Raynauds and my numb hands ache with cold but again I have had that since I was young though it has got a lot worse since I have had EM.
Nighttime heat flares start in my feet and rapidly make it to the top of my legs and my feet will not stop flaring until my entire legs have been cooled which can take hours. i get the stabbing pains in my legs too. I have very obvious osteoarthritis in my hands. I also have severe arthritis in my knees and sore hips, one much more than the other in spite of being told that there is only moderate wear and tear in my hips
I saw a chiropractor recently who told me that my right femur doesn't sit properly in the hip socket which ties in with my daughter's new diagnosis of inherited Ehlers-Danlos. We have most of the same symptoms so clearly inherited from me. What a conundrum it all is. I have just about given up on trying to work it all out and instead concentrate on managing it.
Nel, do you think your EM is secondary to Ehlers-Danlos then? But if aspirin improves it maybe not, or maybe a combination of both. I'm suspected to have it as well. I've never seen E-D as a potential cause but other connective tissue diseases were listed. I read that figuring out the type of EM could help tailor the treatment; but I don't think E-D is treatable, so focusing on managing it like you do is probably the best option indeed.
lizzy and blue, I don't get soreness in legs but get some occasional stabbing pain. My problem is the opposite, joints are too mobile.
My son and daughter both have hypermobile joints. Mine have seized up with age! As for where the connection to EM is I have no clue and have been too busy to research it. The oddest thing is that my younger daughter is adopted and yet she too clearly has EDS along with two of her children with very pronounced symptoms, all hypermobile and with joint pains among other problems from early childhood. Sounds like such a coincidence but I remember a doctor at a myeloproliferative disorder clinic (I was being checked out but negative) telling me he had a husband and wife both started around the same time with Polycythaemia Vera so odder coincidences do happen.
I'm becoming less mobile too with age but still mobile enough for things to pop out place and require visits to physiotherapist/osteopath. Speaking of which, the physio/osteo struggles with my hypermobility and my partner's as well!