RecipeForDisaster

I use sequential compression devices on my whole legs in the evenings. They definitely help me feel better. It’s just that I have to be laying in bed and can’t move, even to the point where I can’t turn them on and off on my own. My BP is very low and I have blood pooling, so it kind of milks the blood up. Exercise is better, but I can’t exercise nonstop….

Thanks! It is wonderful to be able to freely share here. I kind of have a double life, but I’m used to it!

Me too. I’m very private about it, only sharing with a few select friends and almost no family just to avoid this same situation. It’s hard to hide, and I don’t get to vent or ask for support much (especially bad since I can’t travel to appts or tests alone), but it’s been worth it for me. It’s particularly challenging since I look mostly okay, and my illnesses are not well known or understood.

Oh yes, over the head is the worst. Even just holding my arm out for a while is intolerable, like if I’m holding something out to someone and they don’t take it immediately. I am careful not to let my doctors think my major complaint is fatigue. Not that fatigue isn’t horrible - I feel like I’m bleeding out, more than being fatigued. All of the symptoms of shock are with me every day.

Yes, I just say it makes me "sick". There are a lot of bad feelings in my body that I don’t have words for, and I doubt most people would ever understand that. There’s some kind of emptiness in my neck and chest, for one. I don’t do a lot of housework, and I do feel bad, but it’s just the way it is. Stuff that involves bending over, squatting, or making large motions with my arms - even stirring batter - are not very doable.

I have very good insurance that doesn’t give me a hard time about much. I doubt I even need the biopsy for them! I have every sign of neuropathy as well as autonomic problems… I feel like my feet are buzzing all the time, I get the burning numbness, pins and needles, etc. My nurse case manager sounded like she could get IVIG approved for me just because, but I think the neurologist treats me like any other patient with average insurance. I don’t blame him. I dread having that sort of relationship with IVIG, but I figure I can get a lot of hydration with it and be a step ahead. I have orders for that already.

I just saw my neurologist yesterday and he confirmed he is interested in IVIG - BUT I a have to have the right findings on my biopsy, even though I have an insanely high (and increasing) IGG abs FGFR3. I take 2-3 180mg extended release pyridostigmine tabs daily. I’ve never had side effects, and it didn’t take long to see mild effects from even 60mg 3 times daily.

Mestinon helps me about 15%. It’s worth taking it but not by a lot. At least acetyl L carnitine and alpha lipoic acid help my neuropathy. My neurologist confirmed yesterday that he is interested in trying IVIG if my biopsy comes out with eligible results. I did dread IVIG, but I dreaded iron infusions and did fine with them. Hopefully this would also go well.

I would love to follow you because you sound similar to me, and I’m so let down that these things didn’t help you. I haven’t gotten to try the autoimmune parts of your trial, because I am waiting on a biopsy to try to qualify for IVIG and I don’t have any of my 17 doctors working on the immune end very well. I thought steroids could help, but I may have too much cortisol already, because my eosinophils are persistently 0. I have very low BP and no POTS. I’ve read about things like Ubrelvy being used for CFS, and one doctor mentioned this to me (but I guess he lost interest in me when I couldn’t do the invasive CPET). You could also try different beta blockers - I don’t think I’d get ANY sleep if not for mine. DDAVP is somewhat helpful. IV fluids are the only thing that is super helpful for me. Adderall is good, but it’s a pain to get. It doesn’t help me sleep, and I badly need to do that… good luck and keep us posted!

Some of them, yes. I’m not sure I remember which!

Ugh, I’m super allergic to NSAIDs.

Been there, done that. Got slightly panicked after about 16 hours when it was clear I would not be able to fit 24 hours worth in there. Found a way to get another container!

Me too. My eyes tear for no reason, my nose runs often, yet I really don’t sweat. Ipratropium nasal spray helps the runny nose, at least.

Okay, that makes me feel better! I remember that you said that. I don’t have hyper POTS and didn’t even have out of range epinephrine/norepinephrine/dopamine. I just want to sleep! I feel like I’ve had lots of caffeine before bed.

That was the striking thing for me. No ability to tell temperature in my legs and feet. I didn’t know until the (4th) neurologist tested it recently. I am itchy randomly, like I have a tick on me, here, and then there, but I never connected it to neuropathy. I have horrible burning pain in my feet at night, though.

I’d love to try a little clonidine. I was up all night last night - relaxed and sleepy but heart so uncomfortable despite lots of beta blocker. No one will let me use clonidine and I don’t know why. My BP is low, but they give me other stuff that lowers it, and I’d be in bed.

Yeah, I have persistently positive ANAs as well (speckled and homogeneous). I’m not sure we have looked at GAD. Good luck! I'm going to look into Dr. Chemali, too. Thanks!

I’m booked for a biopsy in August, and I have very high IGG vs. FGFR3 which is connected to SFN. That’s part of the Washington University neuropathy panel, if you can get that. I have no reason to have it either. I assume it’s autoimmune with that antibody showing up, but no one really knows. Acetylcarnitine and alpha lipoic acid have helped my burning neuropathy symptoms, at least. But I now have trigeminal neuralgia as well, so I’m on carbamazepine and Lyrica. I don’t think those have helped the neuropathy.

I use ipratropium nasal spray for my nose - it runs when it’s cold outside, when I wear a mask, etc. it works well without side effects (other than bad taste). I have a stuffy nose in the evening, and haven’t figured out what helps it. It makes me unable to breathe through my CPAP mask, so it’s important.

I’m interested, too. I got this weighted, microwaveable wrap that can be put on the neck and shoulders, and it feels good for a while. TENS is helpful.

Partly controlled by my beta blockers, but still a problem!

Taurine helped my palpitations and PVCs. I keep getting worse, so it hasn’t kept up, but it definitely helped me.

I have very low BP and don’t have hyper POTS. I have dabbled in CBD without any effect. Fluids are the most helpful thing for sleep, but since I can’t have PICC or port, I have to use them as little as I can.

I’m in the same boat. No one seems think I need it, but I can’t sleep.

Yeah, that’s true. For me, I am restricted in which ones I can take because of my asthma and how low my BP is. The acebutolol and metoprolol make me feel very different, though.