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?