Hello Ebero,

Sorry for the epic.

My problem used to be limited to the lower spine. Now I have issues with upper.

I’m no expert either. Were you recently diagnosed? I’m basically “new” to coming closer to a diagnosis but since 2021 I’ve been having problems, ones whose symptoms sound like ‘neuropathy’ (SFN).

However, I had a doctor tell me I need a biopsy to diagnose it. But my podiatrist said its neuropathy.

I’ve had diabetes I thought with decent control. For a time (a few months) numbers were high, but I was able to bring those blood sugar numbers down within 3 months to under 7. I was trying to avoid going on ozempic for specific reasons.

Symptoms started I’d say, with odd sensations. Before symptoms became worsened, they were mild. Mild meaning some numbness, a throbbing or twitchy type sensations with a burning sensation to bottoms of feet. I had sensitivity to touch.

The feet felt sun burned with sand paper rubbing the skin pain. When that developed, it stayed with me. Nothing relieves it. I could not put on tight/cotton socks or shoes.

The thing that does not seem to fit is all the spasms I have been getting. Bottoms of feet, calves, upper leg stiffness/pain, back…

Since early feb, had upper body involvement which prompted near future doctor appointments to figure out what this really is. Because as I’m feeling it, I thought it was just the feet, then legs and lower back. Now it’s involving upper body more and new things have crept in.

The nerve pains and muscle spasms are unbearable. There is no escaping it, Quality of life is reduced.

Some symptoms are 24/7 others come on unexpectedly without rhyme or reason and leave like they come on but I know they will always return, When it happens it’s agony then it stops like there wasn’t a problem, then happens again, rinse and repeat.

I am on lyrica (has just been doubled), baclofen, tylenol, advil ice packs, massager. I’ve started to wrap the lower leg up with it and vibrate away. I did that last night managed to sleep through the night.

Then I had what felt like a bee stings. When they first started it felt like sharp pricks. That started the progression, all with numbers under 7 (after which I had that high ‘blip’ of a - HBAIC number.

They progressed to ‘surface’ pains - felt like lightning pains that made me cry out. It lasts longer and more often, is unbearable until the lightning like pains. I contacted doctors. Long story short, ended up in pain management doctors office. So, I”m having an epidural next week.

I am scheduled to see my favorite neurologist. See what she says. I have not seen her in a while. Ive been to others. But the on call said it doesn’t sound like polyradiculopathy, so off I go.

I’m over due for a proper diagnosis. Neuropathy is one thing, this all is something else. I live in this body and feel everything. There is no denying I’m in a “flare” of some kind with worsening symptoms.

I hope I get answers.

This is just me. I doubt I’m the poster child for SNF, but it’s a place to start.

They need to look at differentials and not blanket me with a diagnosis of neuropathy when the spasms are just as bad.

The one thing I strongly suggest, is learn as much as you can, get answers, treatment and take care of yourself. Don’t suffer in silence. Seek medical advice when you have issues.

💜