Unlike most (all?) here, I've primarily had symptoms in my knees. I may have slight symptoms in my feet on occasion, but the the issue that sent me to the doctor was my knees. They remain the only distinctly identifiable area of concern.
That may make this question difficult to answer, but perhaps there is some general applicability. For many months, it was uncomfortable to kneel. I've only recently been able to kneel again without discomfort. Thus, this is a newly discovered phenomenon. After a few minutes in a kneeling position, my knees will look awfully red. It looks like it would be painful, but it's not. It's not even warm. Sometimes it will get warm after, though it often just fades away.
Does this sound like anything you experience? I've attached a picture to help visualize what I mean. My knees look flared in the photo, but they're not. They were cool to touch when the photo was taken and the redness present simply faded away after 5-10 minutes.
Yes. With my knees and my hands. I have no idea why. Some times painful and warm other times just incomfortable. But the red it leaves is wild and never happened before. I can hold a cell phone and it will leave burnarks for a little bit. It’s crazy. My knees used to be very painful like you. Now it’s my fave mostly. I think it’s my autonomic system in hell. You leave a bandaid on my skin it will leave a burn mark when you take it off.
OK, but I am asking specifically about this phenomenon because it is NOT painful. If you look at my knees in that picture, it looks like it would be painful. However, there is no sensation accompanying that redness. It is not painful or uncomfortable. It is simply present.
I've attached a photo of what a recent flare looked like. It is less red than what occurs after I kneel.
I apologize. I get that redness when I cross my legs. On the top of the leg after crossed leg is removed. I’m sorry I didn’t read your post more closely.
CarterDK, I think it's pretty usual for most people that the skin over the knees (or elbows or other bony prominences) will redden with pressure. It is a normal physiological response and so long as the pressure is removed and the redness fades within 15 minutes or so there is no damage to the skin. It sounds like you've already differentiated it from your flares.
You also mention it was uncomfortable to kneel for a while, that might suggest inflammation within the knee itself particularly if it's accompanied by swelling and warmth (again distinct from your flares). If this re-occurs it's worth mentioning to your doc in case it needs further investigation.
Yeah, I get that pressure can leave a red mark, but this is a level of redness far exceeding anything I hitherto experienced. I used to kneel and not have said reaction.
I had 2 MRI's of my knee. It showed there was inflammation, specifically synovitis, but the bony erosions found in auto-immune arthritis were not present. It's not surprising inflammation was found, as the skin itself was inflamed. The question was where the inflammation was coming from.
This remains an enduring mystery of my condition -- initially I had joint pain. I had trouble bending my knees past 90 degrees, bearing weight in a flexed position, and kneeling. I also had a modest fever. Now all of that is gone and I only have the flaring, which itself is of diminished capacity from how it initially presented.
What you said brought back to me what happened to my shoulder a while ago. I have rheumatoid arthritis and I thought that it was that causing the problem. However, my rheumatologist sent me for an ultra sound and it was nothing to do with my joint. It was inflammation of a tendon. I have just looked up on the internet and found this and wonder if this is a possibility. Of course, it may be totally wrong but worth thinking about "
An injury that causes significant damage to the knee joint may cause bleeding into the joint spaces, known as haemarthrosis. This can happen if a cruciate ligament is torn or if there is a fracture to one of the bones of the knee.
Signs of haemarthrosis are swelling of the knee, warmth, stiffness and bruising. You should go to hospital immediately to have your knee treated if you have a badly swollen knee. Surgery may be required to repair the damage". So, it may well be worth getting medical advice just to rule it out if nothing else. The only thing is that sometimes you say knee and sometimes knees. If it's both knees then it might be unlikely that you have damaged to a ligament or tendon.
I initially presented to an orthopedic surgeon with what I thought was a knee injury, but they determined there was nothing structurally wrong with my knee. I had x-rays and an MRI. I was evaluated by 2 orthopedic surgeons. Both could ascertain there was nothing structurally wrong by a simple physical examination. Scans confirmed that. I have no ligament damage. 3 months after my initial "injury," I began to have a similar problem with the other knee. What the surgeons could see from the scans and how I felt never coincided. My knee felt much worse than what they seemed to be seeing on the scans.
I obviously have something that is not easily explained.
OK so it can't be what I thought was possible. As you will know from these forums most of us are going through just not getting anywhere with tests or doctors! That is the problem with rare things that not many doctors know about things like EM and why it's important that we try and get as much publicity about it as possible so that surely before long they might actually have at least heard of it which is a start.
I recently got www.patient.co.uk to agree to put this association on their website as there was nothing at all about EM on it. This is a website that doctors use and so hopefully more doctors in the UK might get to know about it.
I do get this. I have had several auto-immune and inflammatory conditions for many years, and kneeling or leaning will leave my skin red like this without pain. When I could still sit with my legs crossed, I had the same problem. I thought it was something about the fact that I had psoriasis and just had sensitive skin. This is nothing like the pain I get when my EM or CRPS flares - it looks the same, but it isn't hot or swollen, and there is no pain. I also bruise easily, and if my skin gets red like this, it can look bruised later. I don't know if this is helpful or not - I just thought I'd speak up since I've had this same condition since long before I had EM.
Thanks, coastal_spirit. Do you mind if I ask what auto-immune conditions you have? How did your doctors differentiate between EM and CRPS? Or are you not sure which you have?
Sure! I have psoriasis (which is not active) and hypothyroidism. These were both diagnosed when I was 13, in 1967. In 1996, after a year of pain, I was diagnosed with psoriatic arthritis, and started treatment. Since then, I have been diagnosed with rheumatoid arthritis, fibromyalgia, dry eye syndrome, atrial fibrillation, asthma, obstructive sleep apnea, peripheral neuropathy, and now CRPS. (I realize that these are not all auto-immune, but they all are connected by inflammation. I have massive inflammation in my body, and I feel that if it could be brought under control, a lot of my symptoms would be relieved.) I have not been diagnosed with EM, but I feel that I have it, and several of my doctors consider it a good possibility, although no one is committing to it. My rheumatologist looked at my feet and felt strongly that I have CRPS. She ordered a test (bone scan) that did NOT confirm it, but she sent me to a group of pain specialists who feel that this is what I have. The pain specialist did say that it's a possibility that I also have EM, but that he's "not familiar with it", so he's hesitant to give me a diagnosis. To be truthful, whatever this is in my feet is the worst of all my conditions. I have been able, with my doctors' help, to bring all the other conditions (except for the neuropathy) under control. I had a very manageable life until the swelling and pain in my feet affected my mobility and quality of life.
Thanks again, coastal_spirit. You've got a lot going on there. What type of specialist did u see for the CRPS diagnosis? I've considered that for myself, but have not discussed it with a physician. I thought because my symptoms are bilateral it made CRPS less likely. You say you have "massive inflammation" in your body. How was that determined? What has been your highest c-reactive protein level and erythrocyte sedimentation rate?
My rheumatologist initially suspected CRPS, but the Pain Specialist (who is an anesthesiologist) is the one who actually made the diagnosis. My highest CRP was around 85 at one point. It's been about 45 for awhile now, but it is down to 20 because I've been on a prednisone taper. I don't know what my ESR is right now - they only check it once in awhile, and I can't remember what the highest one was. I have been told by my rheumatologist and neurologist that I have "massive inflammation" that needs to be brought down.
Most people with EM also have small-fiber neuropathy (as Mark Davis, MD et al at Mayo Clinic have published). If you want an objective diagnosis of EM, you may want to consider being tested to see if you have this condition (small fiber neuro.) by having a special type of biopsy of the skin on your feet done, called ENFD (epidermal nerve fiber density). Generally considered to be the most accurate method of diagnosing SFN, it's a simple (pretty much painless) 3 mm punch biopsy of skin, after an initial lidocaine injection to the area to numb it. Best to have done by Dr. & facility that does it with some regularity (ideally, a teaching hospital, etc.).
Other than genetic testing for inherited primary EM, it's the only objective test to indirectly diagnose EM (by diagnosing SFN, which in this case would be SFN manifesting as EM) that I'm aware of.
Anyway, just an idea :-)
-James
coastal_spirit said:
Sure! I have psoriasis (which is not active) and hypothyroidism. These were both diagnosed when I was 13, in 1967. In 1996, after a year of pain, I was diagnosed with psoriatic arthritis, and started treatment. Since then, I have been diagnosed with rheumatoid arthritis, fibromyalgia, dry eye syndrome, atrial fibrillation, asthma, obstructive sleep apnea, peripheral neuropathy, and now CRPS. (I realize that these are not all auto-immune, but they all are connected by inflammation. I have massive inflammation in my body, and I feel that if it could be brought under control, a lot of my symptoms would be relieved.) I have not been diagnosed with EM, but I feel that I have it, and several of my doctors consider it a good possibility, although no one is committing to it. My rheumatologist looked at my feet and felt strongly that I have CRPS. She ordered a test (bone scan) that did NOT confirm it, but she sent me to a group of pain specialists who feel that this is what I have. The pain specialist did say that it's a possibility that I also have EM, but that he's "not familiar with it", so he's hesitant to give me a diagnosis. To be truthful, whatever this is in my feet is the worst of all my conditions. I have been able, with my doctors' help, to bring all the other conditions (except for the neuropathy) under control. I had a very manageable life until the swelling and pain in my feet affected my mobility and quality of life.
Wow, that is high. My doctors monitored my CRP for the last 6 months and my highest reading was 0.7. It actually never changed. Every month it was 0.7 and my erythrocyte sedimentation rate was 2. This caused great confusion for my doctors, considering my knees had substantial, visual inflammation during that time.
Hi CarterDK - I don't experience EM flares of my knees, I have however had my knees look similar after kneeling (albeit kneeling for longer amounts of time than you describe). Like you, these don't hurt or cause pain - although they look very red and sore. The only thing that will cause pain is if I've bruise my knees from kneeling. Perhaps it's a kind of pressure related phenomenon - probably not quite the same as dermatographia, but maybe similar (dont know if I've spelled that correctly). I have mild dermatographia, where pressure will leave some redness (usually not just from pressing down on my arm - but say, from carrying around a bag with a shoulder strap against my skin for 20 - 30 mins will leave a reddish mark on my skin for then next 10 - 15 mins.
The picture I've attached was after doing a photographic shoot, kneeling on the ground / grass off and on for an hour and a half. It took about 40 mins - an hour to fade. No burning or EM type symptoms. I don't think this is an EM thing... but sorry I couldn't be more help.
