I've been having some very odd symptoms for the past seven months and have not been able to find out what's going on. I have typed up a list of things that I am taking to my next doctor visit to help track what's been happening, but before I go in I wanted to find out if this sounds familiar to anyone...any help is appreciated.
Noticed veins were becoming more visible and bulging. At first it was just veins on my arms, then spread to chest, then hands and feet and finally penis.
Hands started to get hot if below heart or in a very warm environment
Petite Female, Thirties, Caucasian, 5'5", 110 lbs., Moderate Activity (until sudden onset of symptoms, which has limited activites considerably)
My symptoms began a year ago, sudden onset, extreme vein engorgement in both arms from the elbow down. (FYI: At the time of onset, I was suffering from extreme tendinitis in both elbows) I've always been pale, so you could see light traces of veins beneath my skin. But when my veins in my arms become engorged, they are remarkably different - they're so swollen that if I do not relieve the pressure, I am eventually physically unable to make a fist. At the beginning, each occurrence was quite painful. (And sufficiently frightening, obviously.) Triggers seem to be mild exertion and temperatures over 70 degrees. When my veins are not reactive, you can not see them. Over the past year, the condition has worsened: it takes significantly less to trigger - bring the new cord-like dark blue veins out, and it has spread to my bicep, and temple area of my forehead. About six months after the symptoms first appeared, I started to have a severe pain and heat sensation in my thigh, which closely resembled the symptoms of DVT. After that, the vein engorgement began appearing in my feet. Just so we're clear: These are not subtle changes noticeable only to me. This is the kind of vein engorgement that caused my neighbor (who was not familiar with my body's new eccentric behavior) to exclaim "oh my god, what the hell is wrong with you?", as she insisted that I go to the ER immediately.
At present, the veins in both feet and arms are fully engorged when I am in lying in bed. Symptoms of vein engorgement in both forearms remains consistent, triggered by heat, activity, and prolonged bending of elbows. My circulation is changed significantly. Impeded somehow. If I walk at a moderate pace for 15 minutes, the moment I stand still, every little capillary I never knew I had becomes filled with blood, and looks like something out of a horror movie. If I resume walking, it goes away, until I come to rest again. It's a little painful, and awful to look at.
My medical conditions which may or may not be related:
Subclinical hypothyroidism (which docs remark upon and never prescribe anything for)
Narcolepsy (I've been on stimulant therapy for over 10 years)
Raynaud's (I live in a warm climate, so I haven't had to take meds for this... though I would like to try a biofeedback treatment that is supposed to work wonders!)
Most docs haven't a clue what to say to me, other than "I have no idea what this is, but please let me know when you find out!"
If anyone has any information on what could have caused this, I'd be thrilled. It's altering my lifestyle significantly.
I've noticed that a lot of people seemed to develop this condition suddenly in the spring of 2008. And many of them seem to be women in their 20's and early 30's. I'm curious as to whether that might be relevant. In my reading about Erythromelalgia, it said that there was an outbreak of the condition in Japan, (I'd have to review, I think it was Japan), which they traced it to a contaminated food. Perhaps this is something similar? Or it's simpler than that? Perhaps we all just lost a few pounds, and never anticipated that our reward would be ugly arms and legs that don't work as well as they used to?
One vascular surgeon has suggested Erythromelalgia, and said I'd have to go to the Mayo clinic or someplace in Denver if I wanted a doc who really knew anything about it. When I read up on it, I recognized the similarities, but felt that it didn't exactly describe my symptoms. (With Erythromelalgia, it seems to be severe burning pain and redness is the primary symptom, not engorgement of veins)
Another doc that I saw at the very beginning of this ordeal suggested that perhaps I had developed Chronic Exertional Compartment Syndrome in both forearms, due to a slight trauma which had occurred on the same day of the first appearance of symptoms. When I've mentioned that to other physicians since, most have not heard of it, and those that have still seem skeptical.
There are many causes of this including diabetes, hypothyroidism, chronic involvement of liver or kidney, chronic alcohol use etc. Vitamin B12 deficiency too should be looked into. Hypoparathyroidism too should be looked into apart from hypothyroidism and diabetes.
Peripheral vascular pathologies have to be ruled out either by angiograms or by dopplar studies. Neck strain, spondylotic changes in upper cervical vertebrae, bone disease or bad posture should be looked into.
Hope this helps. Please let me know if there is any thing else and do keep me posted. Take care!
I have also had the same symptoms, although mine started in my feet and now are in my hands. It is primarily on my left side, although it is on both sides of my body. My problems started in Spring of 2008 as well. My doctor diagnosed erythromelalgia. She recommended blood draws (phlebotomy) at first, and that helped a few times, but she's worried about anemia so has told me to stop. She is at a loss for what else to do.
Has anyone responded to you with answers? What kind of doctor are you seeing for this? I think I need more than my internist but she doesn't know who to refer me to?
Lyme Disease. I have it. I was diagnosed with erythromelalgia before the Lyme diagnosis. It does exist in all 50 states despite what you may hear from your doctor. Unless you have had this your whole life then it is considered a secondary condition caused by something else going on. The cause of mine is Lyme disease. Get tested. Watch the movie "Under Our Skin" it's very informative about Lyme disease and the current controversy in testing and treating Lyme.
Stephanie, I also thought I had subacute thyroiditis going on and that was the only thing I could come up with, but it did not fit like it should and the synthroid other than helping me sleep a bit better did nothing for me. You can also visit youtube and watch the videos of people with Lyme disease. Some of the videos are odd but you can find some that are not. The trailer for that movie is on there as well. Please get tested! This disease is disabling if it isn't treated properly. It has been pure misery for me the last 1 1/2 years.
Forgive the delay in reply to your helpful comment. It turned out that my symptoms were caused by the vascular type of Thoracic Outlet Syndrome. Many of the initial tests (like doppler) came back negative, but once I got a MRA (3D Angiogram/Venogram/Neurogram of the Brachial Plexus), it was easily diagnosed.
I've had bilateral partial rib resections and scalenectomies to correct the issue.
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