I need help please!

This is a long story to tell. I’d be so grateful if anyone could read this and see if this is anything similar to what you are experiencing. I’d really appreciate knowing what has helped!
It is difficult to summarize how challenging and painful these past 19 months have been. Here are the important dates and procedures/doctors I’ve done. I’ve probably seen around 15 doctors in this time to try and heal. I’ve seen 4 neurologists, 1 neurosurgeon, 4 pain doctors, 1 rheumatologist, 2 urgent care, 1 emergency department, 1 podiatrist and 1primary care doctor, 1 nurse practitioner.
I’ve been blessed to live a healthy, active lifestyle: golfing, swimming, hiking, gardening, photography, etc. Spending time with our family, grandkids and friends and giving service is my greatest joy in life.
On July 4th, 2018 I strained my back getting golf clubs out of the trunk.
July 18th, 2018 had a HORRIBLE back injury from someone who said they were a chiropractor. Less than 2 days after this injury, my feet and shins started getting pins and needles. November 2018 my feet and shins started burning. My shins have burning/stabbing. The burning feet use to wake me up. This has happened 2 times 2 weeks ago. It felt like my feet are on fire. Gratefully, this doesn’t happen every night.
Saw 2 neurologists in the Fall of 2018 who didn’t believe me. The color changes hadn’t started until May 5th, 2019.
Had 3 MRI’s done in the Fall of 2018. I was told that the images didn’t show anything to be concerned about. Was referred to a pain clinic. Was given 5 series of epidural steroid injections from the Fall of 2018-April 24th, 2019. The last 3 injections were bilateral. The 1st bilateral injection one was at L-5. They went ahead and gave me 2 bilateral ESI at S-1 dates: March 29th and April 24th, 2019. Ten days after my last bilateral steroid injection I woke up with my left foot bright red and burning. This was May 5th, 2018. I called the office and sent pictures and was told that I had CRPS. On May 6th I went to my primary care doctor. My left foot was purplish at my appointment. On May 7th had an appointment with the doctor from the pain clinic. He told me I have CRPS and recommended that I have a spinal cord stimulator. I did not want to do this so I went to see my 3rd neurologist. The red has spread from my left foot to both feet and shins when I get up. This is very worrisome. My pain hasn’t been managed. The burning/stabbing pain can be a 10. Sitting or standing my left foot goes puplish/red. When I elevate my legs they go pale. He ran extensive blood work and tests on me over 6 months. All of my blood work, auto immune, arterial and venous ultrasounds, heavy metals came back normal/negative. He also tested me for the genetic/primary and secondary erythromelalgia. The results were negative. I have tired so many different medications. Nothing seems to help with the pain. I have to take medications at night to be able to sleep. My neurologist did 2 lidocaine infusions, I did IVIG for 3 days in November 2019, a bilateral lumbar sympathetic nerve block on January 9 th , 2020. Unfortunately none of these procedures have helped. My neurologist says I have idiopathic erythromelalgia.
Some of the medications doctors have had me try: nortripyline, lyrica, gabapentine, baclofen, memanine, mirapex,
naltrexone 4.5 mg, topimax, oxcarbazepine and mexiletine.

I’ve been on 2 support groups for CRPS and 1 support group for erthromelalgia. I’ve posted pictures of my feet/legs and
the people on the CRPS support group say it’s looks like their CRPS. Someone said to get a temperature gauge reader. I got
one and have noticed temperature changes between 5-10 degrees. Does anyone have temperature changes in their feet similar to this? The left foot always reads cooler than my right foot. I don’t seem to fit exactly into CRPS or erthromelalgia. I have color changes, skin changes, my feet don’t get red from going into a warm room or weather. I wake up and they start burning and have burning/stabbing in my shins and feet all day long. About 1 1/2 months ago I started noticing skin changes on the bottom of my toes.
I had an appointment with the pain management doctor on Feb. 17th , 2020. He does not know what I have. This is so worrisome to hear as a patient. If doctors don’t know what I have, how will I be able to get the correct treatment to heal? He wants me to do a 5 day hospital stay with a constant ketamine infusion. I had one ketamine IV at a Emergency Department the first part of Nov., 2019. It didn’t do anything for me and it was like an outer body experience. I did not like this. So my concerns are if one IV did this, what would 5 days of this do? I had an appointment with my podiatrist on Jan. 31st. He has helped me tremendously and strongly wants me to be seen at UCSF.
I saw another pain specialist doctor on Jan. 6th , 2020 and he said this was CRPS unspecified type 1. He ordered X-rays of my feet. Had this done at the end of January. The results came back normal. I’m usually pretty strong and brave. After fighting this burning pain since Nov. 2018, I’m past my breaking point. Does this sound like anyone out there?
Sincerely, Melinda

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Melinda , you may benefit from ice packs. I’ve been using a tricyclic called imipramine . Also plain bayer aspirin gives some relief. Pain killers won’t work , unfortunately. Sorry about your troubles.

Ice packs, 10-20 minute soaks in cool cold water, be sure to put good lotion on your feet to keep them soft, elevate them, and consider having a fan blow on them. I keep my house at 67 year round which really helps. I have found no medicine that helps but hydrocodone helps make it tolerable. Best of luck to you. I’ve had it almost 20 years.

First, let me just say how terribly sorry I am that you’re suffering this way. It was heartbreaking to read your post. I hope you find some relief soon.

With regard to your diagnosis, temperature intolerance is virtually diagnostic of erythromelalgia. Heat is the primary trigger of the burning erythema seen in EM. One of the ways researchers have tested drug candidates in clinical trials on erythromelalgia patients is to have the individuals place the affected area in front of a heater. Because heat elicits symptoms and they can quickly and easily have participants give pain scores. That you say you don’t experience flaring from temperature changes makes EM extremely unlikely.

The doctors that have diagnosed you with CRPS are probably right.

WAIT.

I see others saying you should try ice packs or soaks. You should absolutely NOT try that if you have been given a diagnosis of CRPS. The application of ice can make CRPS worsen and/or spread. It can also accelerate a patient through the stages. A better way to trial for EM, since you’ve been given a diagnosis of CRPS, would be to apply heat. If heat worsens your symptoms, that would be diagnostic of EM.

DO NOT APPLY ICE OR USE ICE BATHS IF YOU’VE BEEN GIVEN A DIAGNOSIS OF CRPS.

I’m so sorry you are going through this difficult ordeal. If you are in California I recommend you see Dr. Nicholas Leeper at Stanford University hospital. He is wonderful and I think he can help you.

Thank you so very much for your message! I really appreciate your words and you helping! Thank you for being so kind.

Thank you so much for your helpful information about not doing ice or ice baths! I took a warm bath tonight with your suggestion of applying heat. It didn’t make my symptoms worse. I’m sharing this information with my neurologist. Much appreciated!!!

Thank you so much for suggesting Dr. Nicholas Leeper. I’ll give the office a call tomorrow. I really appreciate your kindness and help!

I’m am beyond sorry that you are going through this for way too long! I would not anyone to have this. Thank you for your input. I really appreciate you taking the time to reach out to me. I don’t seem to totally fit into the EM. It’s been so confusing getting a diagnosis. Gratefully heat doesn’t bring on my red/purplish feet. Although after walking I notice my feet burning. When I take off my socks, both feet are red. This doesn’t last long. When I elevate my feet, they turn a normal color almost immediately. Does this happen to you? I took a warm bath tonight to see if the heat would make things worse. Gratefully it didn’t. I’m letting my doctor know this information. Thank you again!

Thank you so very much for your really kind message! I got choked up from what you said. Very interesting about the temperature intolerance diagnosing EM. With you great suggestion this evening, I took a warm bath. It didn’t bother my feet by making things worse. I’ve never had what people say are flares. Although the one thing I notice is when I walk both feet feel like they are burning. It’s unreal that when I walk, it takes away the stabbing/burning sensations in my shins. After walking, both feet turn red and feel burning. When I elevate my feet/legs they turn pale almost instantly. I wake up with burning feet. After being up shortly afterwards, I’ll start get stabbing/burning sensations in my shins. As the day goes on the pain in my shins is almost unbearable. My neurologists and pain doctor say the I do NOT have CRPS. The pain doctor says I don’t have CRPS because I can wear shoes and socks. Gratefully I don’t have allodynia. I messaged with people on the CRPS support group and some people say that don’t have allodynia. Do you have temperature differences in your limbs? I have anywhere from 5-15 degree differences in my feet. One woman on the CRPS support site said that this is a definitive diagnosis of CRPS. Thank you from the bottom of my heart for reaching out to me and helping so much! I hope it’s okay to post some pictures of my feet/shins. It would help a lot if anyone has feet/shins/legs that look like these.

*Here are some pictures of my feet. The first 2 are when they first turned bright red on May 5th, 2019. The others are sitting, are walking or standing up. Do these look like anyone’s? I appreciate your help, kindness, caring and support more than you’ll ever know!

I think he will be able to give you a definitive diagnosis. That’s the first step to figuring out how to manage your symptoms. You’ve been through so much! Dr Leeper is very kind and very competent. Hang in there! :blush:

Please consider the possibility that you may have Lyme Disease and/or Coinfections. Even the initial back pain an or spinal issues and can be related and EM, advancing even to CRPS can be caused by these infectious diseases. Try to find a “Lyme literate” Dr, (not an infectious disease Dr), in your area for a diagnosis. Lyme can cause such a huge array of symptoms and secondary problems, the list is endless. When you have neurological lyme the results are often Em and Neuropathy amongst many other issues. You most likely have polyneuropathy. I have a myriad of medical problems including EM and polyneuropathy IC raynaud’s, and am disabled from chronic Neuro Lyme. It destroys the immune system, and in many cases the nervous system.

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CRPS and EM display similar symptoms. Erythema, increased skin temperature, swelling, and cyanosis are often found in both. The symptoms you’ve described thus far are ones common to both conditions.

One area where the conditions diverge substantially is on temperature tolerance. People with erythromelalgia can not tolerate warmth. Severe cases of erythromelalgia can be triggered simply by an ambient air temperature above 68 degrees. (68 degrees is the ambient temperature at which exposed skin will begin to lose body heat.) EM patients will commonly say they can not wear socks and shoes, take hot baths or showers, exercise, cover their feet with a blanket at night, or go outside in summer. EM patients often end up using extreme cooling techniques as temperature control can sometimes be the only thing that alleviates the pain. (Example: About a month after my EM started, I bought a freezer to place next to my bed. I stocked it with a dozen ice packs and would rotate the packs at night.)

Another major difference between CRPS and EM is that individuals with EM typically have no discomfort when the erythema is not present. This is why people with EM often resort to extreme cooling. With EM, if you eliminate the erythema you eliminate the discomfort. This is where the concept of “flares” come from. In contrast, people with CRPS tend to describe constant, unrelenting pain.

EM rarely affects the entire leg. I am unusual in that my EM occurs primarily at the knee with minimal to no foot involvement. Most with EM have it affect the most distal portion of an extremity (hands, feet, or ears, with feet most common). In my 5 years here, I can’t recall anyone else who had it affect such a wide portion of the leg, as shown in your pictures. I’ve not seen it involve the shin at all.

From the description of your symptoms, I still think it sounds more like CRPS than EM. It’s possible you have neither. I don’t know what, if any, other possibilities exist.

You say you have constant pain, even when the erythema is not present, correct?

Thank you so much for your incredible help! This was very informative. I just sent this to my neurologist. It doesn’t sound like I have EM. You are correct, I have constant pain even without erthyema. Have you ever heard of ketamine infusions helping? The pain doctor wants to do a 5 day ketamine infusion stay at the hospital.

Thank you for your kindness and help!

I think I may have found my symptoms buddy lol, this look familiar?

Anytime I stand or even have my legs down this is what happens to me, it’s incredibly painful. I have been diagnosed with EM as heat does trigger it, but I’m not quite sure that’s the whole story. Question, have you ever had symptoms of pots syndrome?

I’m glad you’ve found it helpful and hopefully you are on the road to recovery soon.

Unfortunately, I don’t know a lot about treatment options for CRPS. What I know of it comes from having it considered in my case and, since it was found I didn’t have it, I’ve never looked at treatment options closely. I do know ketamine infusions are sometimes given for CRPS and get the main idea of why it may work. Ketamine is a powerful tranquilizer and CRPS is believed to be caused by nerves firing excessively.

Thank you so much for your response. I appreciate you reaching out. I am SO sorry that you are going through many things! You sound really brave and strong.