I really hate chronic pain lol, obviously. Today’s been hard though. Last week I met with a new neuromuscular neurologist and she told me bad news. She disagrees with my previous neurologist on the CIDP diagnoses and thinks that I have an extreme case of small fiber neuropathy.

I can’t stand in one spot for more than a few minutes without my legs starting to shake or walk up or down hills. Eventually they’ll give out and just tremor. She doesn’t think I’ll get em normal again. She said I could get some functionality back but that’s it. That’s also with nonstop water therapy and normal physical therapy.

Same with pain. She thinks I’ll be on pain meds forever. Not only that, but the nerve pain in my legs and low spine pain hasn’t gone away since the blood patch 4 months ago. I got 500mg methylprednisolone infusions for 3 days a month ago and that helped a lot and I was hoping it would go away but it didn’t. Still can’t have my legs in certain positions. I got acupuncture today and she did cupping on my back and did it on my hips and lumbar spine and that general area and it made it flare up. Had nerve pain in my legs the entire time. I just got a lumbar pillow and can’t even use it because it makes my low spine hurt and nerve pain in my legs.

I got wheelchair assistance for the flight home for Thanksgiving and that was really tough to do mentally. The flight home also caused a lot of pain. Not only that, but I got into a huge fight with my mom and brother because they can’t seem to comprehend the fact that I’m not gonna be in a jolly mood when I’m in a lot of pain.

What the new neurologist told me sucked. It has a lot of implications. Been a mentally rough week and a half. I try not to think about my future but I have been. Idk if I’ll ever be able to get into a relationship with how my life is currently. I’m just exhausted. All of this is just too much. I wish I’d wake up one day and it would all be gone and I could live the life I had a year and a half ago

  • netburnr@lemmy.world
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    11 months ago

    I hope that you are able to find the right medical help, keep asking no matter if it’s embarrassing. You are your strongest cheerleader to getting help.

    Also remember if your are exhausted take the time to simple rest, and dont be shamed if you miss events.

  • AFK BRB Chocolate@lemmy.world
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    11 months ago

    The pain with no end in sight is really soul crushing, and I’m sorry you’re having to deal with that. It seems that things that help your mood heal you deal with pain, and you might discuss that aspect with your doctor. Hang in there ñ

  • sweetcuppincakes@sh.itjust.works
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    11 months ago

    I hope things start working out better for you! Sorry about the pain and mobility issues! Hopefully, you’ll find treatments that work for you soon.

  • BD1sHappyFeet@lemm.ee
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    11 months ago

    I really hate that you’re dealing with this. Having to fight to get doctors to listen to you is fucking exhausting. Having to prioritize a list of problems that all suck because you only have the energy to deal with one or maybe two is fucking exhausting. It just doesn’t stop. 🤬