What is wrong with me?!

This is a rare condition, but recently I heard of someone who was getting a workup for a condition called Erythromelalgia. It causes burning pain, can have sudden onset and cause purple color to hands and feet, if you might want to see if that sounds like what you’re experiencing.

Might be out of left field, but thought I’d mention it. Raynaud’s is more common and could be caused by a different vascular or rheumatological condition.

Hello, it is me that is being treated for Erythromelalgia right now! There is no test for this condition. It is diagnosed by symptoms, appearance (red skin), and warmth to the touch. However everybody presents differently. Right now I have no burning sensation yet but everything from my knees down are very swollen and red. I've had chronic swelling for years that comes and goes every summer and sever pain on tops of feet for a couple years.
Just thought I'd share my experience in case it rings any bells with you. oh, and it can affect Limbs (typically feet and/or hands but can affect entire limbs) and face as well I read.
Anyway I'm assuming you've been to a foot dr and have had MRI's?
Does your pain move all around your body? I have Fibro as well. Had chronic pain for 24 years. drs always blamed my spine. until JUST 2 weeks ago when I flared and the EM flared as well. I understand you frustration. There IS a blood test for Fibro. It's not covered by insurance though. You can ask your neurologist for it. I don't know if it's new or what but I was NEVER told of this test.
I hope maybe some of this helped! Good luck!

Thanks for sharing! I knew I had read it somewhere and I thought it was in a different online support group I’m part of.

I’m sorry it’s happening to you but glad you’re on a direction to get some answers.

Wow, my first thought was, “There’s no test for fibromyalgia…” and I googled it and you’re right—it’s new! I wonder if it’s being used and/or covered by insurance 🤔. It seems to have been introduced a few years ago. But I find it odd this didn’t come up at all in a Mayo evaluation I had in 2023 in a clinic that admittedly diagnoses a lot of fibromyalgia as a co-occurring condition. Weird. Thanks for sharing!

What was your experience going to the Mayo (Rochester?) for fibromyalgia?

Thanks for sharing! I knew I had read it somewhere and I thought it was in a different online support group I’m part of.

I’m sorry it’s happening to you but glad you’re on a direction to get some answers.

Wow, my first thought was, “There’s no test for fibromyalgia…” and I googled it and you’re right—it’s new! I wonder if it’s being used and/or covered by insurance 🤔. It seems to have been introduced a few years ago. But I find it odd this didn’t come up at all in a Mayo evaluation I had in 2023 in a clinic that admittedly diagnoses a lot of fibromyalgia as a co-occurring condition. Weird. Thanks for sharing!

I was actually diagnosed in Jacksonville in 2023, during an evaluation at the EDS Clinic. They assess everyone for fibromyalgia.

In Rochester, in 2017 (?), they diagnosed me with what was then called “chronic pain syndrome,” now known as central sensitization syndrome or nociplastic pain.

So I have experience being treated for fibromyalgia at Rochester specifically. But I can say that in my experience, both campuses view fibromyalgia and central sensitization as related or even two sides of the same coin. My JAX provider said, “Fibromyalgia is the pain component of central sensitivity.”

At least in my experience, they approach both the same way. I can’t say for certain, but I’d expect the approach to fibromyalgia in Rochester to be the same or very similar to what I experienced in Jacksonville, which was the same as what I experienced in Rochester, but for central sensitization.

I know others have had positive experiences, but the overall prevailing culture of the “Mayo approach” to chronic pain wasn’t a good fit for me. It’s not something I really recommend to others except for specific circumstances. I’ve written this elsewhere, but it feels too rigid and doesn’t seem to account well for different presentations of chronic pain and central sensitization. And the providers I interacted with did not seem to have an understanding of post-exertion malaise, which can be dangerous.

My experience in both places had a heavy emphasis on “self management and lifestyle changes.” They take a pain neuroscience approach, emphasizing that pain is a message the brain sends out on the basis of how it’s interpreting what’s going on in or around your body. We can change that pain experience by calming down a brain that’s on high alert. All of that is true, and self-management it’s important, but that approach felt very one-sided. The approach to pacing exercise frustrated me most; it was too aggressive for me and didn’t acknowledge different presentations of chronic pain or post-exertion symptoms, which can be dangerous. And I saw PTs who are supposed to be the experts.

I feel conflicted about it. Obviously, it works and many people have found success. I don’t want to sound so negative, but I also feel constructive criticism is fair and not every intervention is right for everyone. I don’t feel they’re very transparent about their approach and I wish I would have had someone to ask the question you just asked me, before I went, so I always try to answer when someone asks.

I could say more but my comment keeps exceeding the character limit! I’m too long-winded and out of energy to edit it all, so I cut a bunch of stuff out >_< . Feel free to let me know if you have other questions.

What was your experience going to the Mayo (Rochester?) for fibromyalgia?

I was actually diagnosed in Jacksonville in 2023, during an evaluation at the EDS Clinic. They assess everyone for fibromyalgia.

In Rochester, in 2017 (?), they diagnosed me with what was then called “chronic pain syndrome,” now known as central sensitization syndrome or nociplastic pain.

So I have experience being treated for fibromyalgia at Rochester specifically. But I can say that in my experience, both campuses view fibromyalgia and central sensitization as related or even two sides of the same coin. My JAX provider said, “Fibromyalgia is the pain component of central sensitivity.”

At least in my experience, they approach both the same way. I can’t say for certain, but I’d expect the approach to fibromyalgia in Rochester to be the same or very similar to what I experienced in Jacksonville, which was the same as what I experienced in Rochester, but for central sensitization.

I know others have had positive experiences, but the overall prevailing culture of the “Mayo approach” to chronic pain wasn’t a good fit for me. It’s not something I really recommend to others except for specific circumstances. I’ve written this elsewhere, but it feels too rigid and doesn’t seem to account well for different presentations of chronic pain and central sensitization. And the providers I interacted with did not seem to have an understanding of post-exertion malaise, which can be dangerous.

My experience in both places had a heavy emphasis on “self management and lifestyle changes.” They take a pain neuroscience approach, emphasizing that pain is a message the brain sends out on the basis of how it’s interpreting what’s going on in or around your body. We can change that pain experience by calming down a brain that’s on high alert. All of that is true, and self-management it’s important, but that approach felt very one-sided. The approach to pacing exercise frustrated me most; it was too aggressive for me and didn’t acknowledge different presentations of chronic pain or post-exertion symptoms, which can be dangerous. And I saw PTs who are supposed to be the experts.

I feel conflicted about it. Obviously, it works and many people have found success. I don’t want to sound so negative, but I also feel constructive criticism is fair and not every intervention is right for everyone. I don’t feel they’re very transparent about their approach and I wish I would have had someone to ask the question you just asked me, before I went, so I always try to answer when someone asks.

I could say more but my comment keeps exceeding the character limit! I’m too long-winded and out of energy to edit it all, so I cut a bunch of stuff out >_< . Feel free to let me know if you have other questions.