u/holderofthebees

Seriously, I’m kind of scared that I won’t be a good candidate for recovery and they’ll stop trying to treat me. I’ve had chronic migraines since I was an infant and they’re still most days of the week. They’re mostly abdominal migraines so I can’t actually drink 2-3 liters of water any given day (at least yet 🥲 seeing a GI about the gastroparesis in late July) and I feel like I’m suffocating off and on from my sensitive nervous system. I’m especially triggered by the weather and there’s no getting away from that in Alabama.

Please share any similar experiences or knowledge you may have, I’m sure it’s partially this phase of the migraines but I’m feeling extraordinarily discouraged right now. I’m already having to get gloves and socks and such for swimming because I can’t use a rowing machine due to severe neuralgia and I can’t use a recumbent bike due to chronic sciatica.

ETA: I will say though, the abdominal binder they have me wearing definitely helps certain stages of abdominal migraines, so that gives me a bit of hope!

I should probably be doing it more than I am but right now I’m in the recovery period after a (surprisingly painful) lumbar epidural. I fucking hate sitting around and I’m just angy gumpy about it.

I wish the disabled life was as luxurious as ableists think it is.

End of rant.

Okay so I saw an autonomic specialist (after waiting literally a full 12 months) and I need to start exercising pronto. I was told to only do laying down workouts, like a recumbent bike, rowing machine, or swimming. I’m aiming for swimming since I have awful awful coat hanger pain and chronic sciatica in my left leg, but I’d like some more laying down exercises for my core and legs that I can do at home! I have EDS so nothing yoga related please. Pilates is a major yes as long as the equipment is affordable. I’ve been waiting for them to check into my messed up neck my pinched vagus nerve before starting PT since I have cervical instability and don’t want them to make it worse. Any help is so appreciated, TIA! I’m excited to get better!

I’ve never had quite an awful kick in the crotch. My rheumatologist said it has nothing to do with the Raynaud’s I started getting in January, but he also went on an unprompted rant about how fibromyalgia is a sleep disturbance and a disorder rather than a symptom set. So. Really minimal information there.

I’m dehydrated from abdominal migraines and I have to stop getting the IV fluids and vitamins that treat that.

Hi y’all. I’ve started getting fluids every week and banana bags every two weeks and I love it so far. Banana bags are the best thing on planet earth, I feel awesome for days after!! (Bad absorption, I promise I’m trying) But since my ADHD is untreated I’m not much of a “lay back and relax” kind of person. I find activities relaxing and I’d especially love some kind of activity that makes me feel healthier or generally better when I’m done.

So, anyone have tips for what to do? Considering reading but my mom always comes because she has to drive me and trying to focus isn’t relaxing even on my own. I have narsty neuralgia so nothing with red light therapy, I don’t know if I’d try one of those masks even if my eyes could take it but I’m not against activities that are beauty/skin treatments. Obviously it has to be sanitary enough to be around with my IV in. Anyway, TIA ❤️❤️❤️

The Norco they gave me is not cutting it. I have trigeminal and occipital neuralgia. I feel like my brain’s on fire. It’s searing my eye and gums. Please please help

Update 12 hours later: hey so I feel a lot better now and I think I might’ve had an allergic reaction to the cauterizing chemicals 😭 I think the irritation on the extremely sensitive inner lip nerves was a direct line to my whole trigeminal nerve pathway. My lip crater is nice and pink again and I’m doing alright!

They gave me Norco and it’s absolutely not cutting it. My eye and ear are searing.