Fibromuscular dysplasia (FMD): Want to connect

Yes, pain rules my mind every waking hour. I tried doing some recommended exercises only to have my pain ramped up even worse. I can't even walk around our communty with my wife. A short walk of a couple hundred yards sends the bottom of my feet into severe burning mode. I am getting my old, non-functional spinal cord stimulator removed this coming Monday. Then, I will be able to finally get an MRI and, hopefully, find out what's going on with my back.

I’m curious where does your pain stem from? Back? Feet?

Originated in lower back and buttocks after a ski fall in 2016. Pain was well managed with meds and spinal cord stimulator until 2021 when all pain returned. Now pain radiates down the back of my legs and into ankles and feet.

Curious if you have ever had a nerve study done? I work for a PT that is a spine specialist and we have seen these studies to be helpful. Even if your Doctor tells you otherwise…. 🙂 maybe I could send you a book written by him that may have a few nuggets of good info..?

I believe that I had an emg study done back in 2017 by the neurologist who prescribed the cocktail of drugs that helped with my nerve pain. Who can remember back that far? I can barely remember what I did yesterday. I have been trying to hook up with a new neurologist here in our new city. Easier to get an audience with the pope.
Yes, the book might be helpful. You never know where nuggets may come from, besides McDonalds. lol. Thanks

Lower back, both buttock cheeks, now add hips, back of thighs to back of calves to ankles and feet. More recently it seems to be spreading upward between my shoulder blades. I am now on doxy for Lyme's since I tested positive (although I've had Lyme's before so it's hard to tell if it's an ongoing infection.

I was told the same thing. I have carotid artery FMD with no renal artery problems. I take a daily 81 mg aspirin to thin the blood to prevent stroke and have been told, after one annual checkup to make sure carotid arteries were stable, that 2 years would be my next follow up visit with the neurologist. I do have persistent ringing in my ears, neck pain sometimes, and lightening like headaches. No balance or dizziness though. The aspirin helps my headaches. Wishing you the best. Please keep us posted if you get any more information.

Mine is in the same place. And no renal artery issues. It’s so interesting to me that they tell you to be cautious and don’t manipulate the neck at all and yet it’s nothing serious enough to treat. Unfortunately I’m allergic to aspirin so I can’t take that. They put me on a BP medication but I don’t have high BP so that causes even more dizziness. Needless to say I stopped taking that. They tried to tell me the dizziness was silent migraine- but I find it hard to believe it’s a migraine that doesn’t ever go away. Chronic dizziness, ringing ears and neck pain right at the artery. It’s a very frustrating experience to say the least.
I’m seeking second opinions but I’m not hopeful the answers will change. Trying my best to get back into physical and emotional shape. Prayers for you and me! Trust me if I find any answers I will share.

Also curious if you have any additional issues when you attempt exercise?

That is so interesting-I just posted something about an EMG that my neurologist has scheduled. I've been dealing with neuropathy for several years-seen several doctors and she is the first one that has recommended that I have it done. I'm assuming that will give the information on maybe help with the relief? I would be very interested in reading what your spine specialist has to say.