I say my affliction is like EM, doctor says CRPS (RSD) what do you think?

General
1

I have had this affliction for seven months. When lowered, my foot (right only) gets red, blotchy, hot, and painful. When raised to chest level, it quickly goes to normal color, less painful. Vascular test showed normal blood flow. Neurology test showed Peripheral neuropathy. Anything warm increases pain. I also have sharp shooting pains in various parts of the foot- very painful. I used to have periods of low pain between flares, but now have had flare for three weeks.. Too painful to get out of bed. I hope this level isn't the new norm!

My pain doctor has had many patients with CRPS, never heard of EM. I showed her prints of EM info, but she still thinks I have CRPS. My research online indicates CRPS makes foot cold, wants warm. Vessels are constricted. CRPS usually follows an injury. I did not have injury prior to onset. Pain doctor says some CRPS patients have warm feet.

What is different about my case is that my foot loves cool swimming pool at 80degrees. Colder water increases pain. Warmer water increases pain. My foot likes mild compression socks (vessels seem dilated). Yet I have to keep foot out of the covers at night.

Have tried Lyrica, Galise (gabapectin) Tylenol, with no effect on pain, but did not stay on any of them very long. Maybe it takes weeks to take effect?

I would appreciate any comments on the above. And I feel deep compassion for all who have to live with EM and CRPS.

2

If we're voting, I vote CRPS.

  1. EM is typically bilateral.
  2. Cold water does not increase pain in EM.

Have you had a Three-Phase Bone Scintigraphy (TPBS)? That's a diagnostic tool my doctor used when considering CRPS.

Good luck!

3

Thanks for your input! I just had a bone scan, and am awaiting results.

CarterDK said:

If we’re voting, I vote CRPS.

  1. EM is typically bilateral.
  2. Cold water does not increase pain in EM.

Have you had a Three-Phase Bone Scintigraphy (TPBS)? That's a diagnostic tool my doctor used when considering CRPS.

Good luck!

4

Whatever you have, I hope you start to feel better soon. I know it's difficult not knowing. The silver lining of having something that's not well understood is that there's still a chance it could just disappear. Since no one knows why these things happen, no one can say it won't just go away. Keep the faith.

5

Thanks… At this point, I don’t think it matters which diagnosis. Treatments (such s they are) are about the same. I developed a blood clot in the right leg, my foot got cold. I thought it was CRPS and let it go. The toes began to die, and a vascular Dr. had to do an amputation at lower leg. I was concerned this invasion might spread the disease. Insead, the pain diminished to a low level, and I got a prosthesis. I could walk again with minor pain, and lived a normal life for several months. Then I needed biopsies on several facial moles. The next day, the pain was back in full force, and has been so for several weeks. Back to the wheel chair and crutches! My attitude is always positive, and I do not let the body’s problems impact my peace of mind, and happiness. I am fully in love with the world, and its creator, and I find ways to be creative and helpful to others. Going on 89, and still loving it! If only others could gain this power of perfect acceptance, and stop suffering. We may be in pain, but we don’t have to suffer!
Love to all! Sammy

6

I had RSD. What I can say about that experience is I had surgery on my wrist. That triggered it. It was a mottled purple coloring on my hand. My opposite hand was normal looking. It had pain. The other hand didn’t. It would look normal then look purple. It was hard to bend and scar tissue multiplied to fast. I was diagnosed with RSD and treated it with Neurontin and nerve blocks in the neck. Not fun.

I have EM. This is different. It is both hands and both feet. My veins bulge as soon as I hit outside up to the arm pit. I’ve notice my belly too. My feet too and up my leg. Episodes of hot hot red red hands feet. Actually I use my hands as a hot pack for my husbands shoulders.

They are similar and in my mind I think they can run hand in hand. But they should be able to determine which is which. I hope this helps a little. I hope you find your answers, even if treatment is the same, I feel when we have answers, we feel there are more options.

7

I wanted to update this thread and say that I spoke to a couple of people who have RSD and one said he had burning foot syndrome symptoms for 1 year and then it resolved. The other said they had RSD or CRPS type 1 which is the new technical name for it. But he used the older term of RSD. And when I mentioned that a lot of people with CRPS/RSD say they may have burning feet for a year, he said he’s had burning feet and RSD symptoms for 8 years. This second person I talked with who had RSD had the onset after surgery and the removal of a nerve in his spine.

So it seems that according to some that I have chatted with and obviously posts here, that a person can have burning foot syndrome like symptoms from CRPS/RSD. As there are many kind of nerve damage that can cause EM or burning feet flares, one can have it as a part of another disease and that may change the way you deal with the symptoms. With RSD according to one video on youtube by a doctor who has treated it, advanced treatments for some cases of CRPS may treat glial cell over-activity.

That may be different than treatments that help other EM suffering patients deal with the pain.

Generally speaking the more rare and perhaps “pure” forms of EM are responsive to cold water immersion or chilling of the feet in some way. And they will almost always get worse symptoms when the feet are being warmed up. And it’s usually something that happens on both sides in the case of EM and happens to both limbs at the same time during onset. With CRPS the problem may start on one side, that is injured, and then be mirrored to the other side, and symptoms can move all over. Also mobility is often effected. I can’t speak for all the other EM suffering patients and the EM symptoms could be secondary or related to other types of damage. But in my mom’s case her EM didn’t affect her ability to walk or use her feet, in other words her nerves were not causing her feet to move in such a way that she lost control or function, it was pain that stops her from walking. As she doesn’t walk as much to avoid pain, natural lack of endurance and weakness result, but it’s not an attack on the sympathetic nerves causing her feet to turn in or something that we might see in a bad case of RSD. Her ability to walk or move or use her feet was hampered from lack of use, but not the signals being sent as far as we can tell.

More recently in her case, but this should be a subject to a different post, some medications may have helped hamper her ability to walk and have balance. Maybe she has some CRPS like symptoms mixed with her disease, but her case like many others here is strange and perhaps very unique. These were likely side effects of treatments, and could be other declines in her health.

With RSD the decline of the ability or flexibility of the feet to move may happen if the RSD is affecting your feet for example. You may not only see pain, but lack of functioning, which is a sign it’s something more than a “pure” EM issue. This leads me to speculate with others that the EM you’re experiencing or burning symptoms is secondary to some kind of CRPS like issue.

As many could have more than one disease and more that one type of nerve damage, it’s difficult to give a full explanation and it’s easy to see that most posts are limited by our own experiences. And doctors can be baffled of course by these rare diseases.

It sounds more like a burning foot like symptom from CRPS to me as well. But this is just a guess from a caretaker of someone who has EM, not a medical opinion.