CRPS - anyone suffering with complex regional pain syndrome

If you have the financial assets, the Spiro Clinic is the only place having su cess with a cure from crps. The don't accept insurance but might be offering more than your brother? She is from Germany and created her own program. Look it up. I sadly can't afford it but perhaps you can. I would go if I could. Website and fb page

I am hopping on this thread instead of starting a new one. Not sure if that is the best call, but here goes.

As with all of you, there are mysterious things happening in my body. If I am putting together all the pieces correctly, my body is an overachiever. My nerves are firing too often and too hard and my immune system really overuses inflammation. Unfortunately, this is not reflected in most medical tests. Outside of the MGUS related abnormalities in my blood test, mild neurological damage on an EMG/Nerve Conduction test, and MRI changes that do not directly impact the spinal cord, tests come back normal. Clinical exams show changes. We just don't know why. My doctor is moving away from a focus on Peripheral Neuropathy to CNS and we are experimenting with Baclofen to see if it helps. She has also talked to me about CRPS. She said I don't meet full criteria but "whatever is happening sure is mimicking that process". My pain levels are nowhere near what most of you describe. I have more trouble with swelling and balance with nerve pain that occasionally gets really bad. Most of the time, my pain levels are between 3-5, so not too bad.

For those of you who are veterans of CRPS, does any of this sound familiar? Most recently, it was my OB/GYN who told me to talk to my neurologist about nerves over-firing and muscle spasms. (Muscles throughout my body are ridiculously tight!)

I am hopping on this thread instead of starting a new one. Not sure if that is the best call, but here goes.

As with all of you, there are mysterious things happening in my body. If I am putting together all the pieces correctly, my body is an overachiever. My nerves are firing too often and too hard and my immune system really overuses inflammation. Unfortunately, this is not reflected in most medical tests. Outside of the MGUS related abnormalities in my blood test, mild neurological damage on an EMG/Nerve Conduction test, and MRI changes that do not directly impact the spinal cord, tests come back normal. Clinical exams show changes. We just don't know why. My doctor is moving away from a focus on Peripheral Neuropathy to CNS and we are experimenting with Baclofen to see if it helps. She has also talked to me about CRPS. She said I don't meet full criteria but "whatever is happening sure is mimicking that process". My pain levels are nowhere near what most of you describe. I have more trouble with swelling and balance with nerve pain that occasionally gets really bad. Most of the time, my pain levels are between 3-5, so not too bad.

For those of you who are veterans of CRPS, does any of this sound familiar? Most recently, it was my OB/GYN who told me to talk to my neurologist about nerves over-firing and muscle spasms. (Muscles throughout my body are ridiculously tight!)

From my perspective this doesn't sound like CRPS but remember there are three stages to it: acute, sub-acute, and chronic. Early on they thought I was full of ya know, and they were convinced I was a drug seeker. Some symptoms during acute for me were inflammation, uncontrollable pain, and this leads to your body countering physiologically naturally by trying to attack the problem through swelling, the nerve signals in the body, to the brain ,etc. Your description seems accurate of the way I remember the acute to sub-acute stage. Chronic is a whole other nightmare.

Anyways, it wasn't until I switched to Jackson Hole, WY that it was taken seriously. The MRI and X-rays didn't show much other than the initial injury, but when I was describing what was happening within my own body he didn't have a CRPS answer. It's when I went to The New York Hospital for Special Surgery that they called it almost immediately; classic symptoms and more tests were done. Mayo Clinic and Scripps Clinic confirmed with at least half a dozen other pain specialists, neurologists, surgeons, etc.

Have you sought a second opinion, and do you have access to doctors in your area that understand CRPS?

Thank you for your response. I'm not sure how long in a cute face would last or if it can happen chronically. Things first begin for me about 4 years ago. There has been a study progression of symptoms worsening but it is more like a cycle. I kind of think of it as having flare-ups. It was my physical therapist your first mentioned CRPS a few years ago. Then, about a year and a half ago, a podiatrist mentioned that he was afraid that was what was happening. Most recently, it has been my neurologist who has mentioned princess diagnosis. She seems quite familiar with the disorder. We know that there is some systemic mystery going on. But this left ankle needs to be following a different pattern than the rest of my body.

Good question. I had something that they called metataralsia. At least that's what doctors thought it was. I saw three different podiatrists. The first two just took x-rays and told me to take Ibuprofen. The third one took me a bit more seriously and did an MRI to rule out a planter plate tear. The MRI showed some muscle atrophy in the small muscles between my toes. But there was no other evidence of a planter plate tear. I have very high arches so, apparently, I have had minor injuries in my feet off and on for my entire life. Eventually, this doctor got me to Mayo clinic where I got tested and was diagnosed with some small and large fiber neuropathy. However, the neuropathy was not in line with the symptoms in that left ankle. I always have the neuropathy symptoms but the other types of odd swelling come and go. The temperature change is pretty much always there. The bottom part of my leg and ankle and foot are always colder on the left side than the right. This last flare at I am pretty sure was caused by my physical therapy evaluation. It started when I stood on my left foot for the balance test. Stupid balance test. 🙂

Good question. I had something that they called metataralsia. At least that's what doctors thought it was. I saw three different podiatrists. The first two just took x-rays and told me to take Ibuprofen. The third one took me a bit more seriously and did an MRI to rule out a planter plate tear. The MRI showed some muscle atrophy in the small muscles between my toes. But there was no other evidence of a planter plate tear. I have very high arches so, apparently, I have had minor injuries in my feet off and on for my entire life. Eventually, this doctor got me to Mayo clinic where I got tested and was diagnosed with some small and large fiber neuropathy. However, the neuropathy was not in line with the symptoms in that left ankle. I always have the neuropathy symptoms but the other types of odd swelling come and go. The temperature change is pretty much always there. The bottom part of my leg and ankle and foot are always colder on the left side than the right. This last flare at I am pretty sure was caused by my physical therapy evaluation. It started when I stood on my left foot for the balance test. Stupid balance test. 🙂