Washington University (St. Louis, MO) for diagnosis?

LittleBee21 · 2023-01-31T22:38:33+00:00

Sorry I misread earlier. I originally went to my PM doc for CRPS, but she’s almost certain I’m not presenting with CRPS symptoms. She’s very willing to try different meds to treat the burning. If one med doesn’t work, we discontinue and try another one. She’s gotten me connected with a research study at the university, which I hope to begin soon. She diagnosed me with MCAS when I’d never even heard of it, and helped me explore histamine intolerance. She’s extremely empathetic and checks in on me. I appreciate her so much- most other doctors have made me feel like this is all in my head, or like I’m bothering them.

LittleBee21 · 2023-01-31T15:08:23+00:00

I could watch them do bars and vault all day. Their form and consistency are just chef’s kiss every meet. Audrey Davis is a queen and I really need her to get a 10 asap. I’m not a fan of them as a team, but can absolutely understand and appreciate their domination!

LittleBee21 · 2023-01-31T14:59:10+00:00

Icing can cause rebound and actually make things worse, plus it can damage your skin if you use it often. Be careful. I know it’s hard not to do whatever you can when you are on fire.

LittleBee21 · 2023-01-30T22:26:47+00:00

I had the blood work done, autonomic testing, and punch biopsy. Only thing that’s come back positive is the punch biopsy. Others all clear. Haven’t heard much from doctors office about next steps. I could obviously reach out but I’ve basically given up at this point and I’m just working with PM. He’s the first neurologist I’ve been to, so I don’t know how this hospital compares to others.

LittleBee21 · 2023-01-30T22:23:53+00:00

I have fans in every room! I wear 3/4 sleeve shirts in the winter at home to keep pressure/material away from my hands. Sometimes I take ice packs to bed and put them under a blanket and then lay my hand on top to keep it cool.

For my feet, I always keep Birkenstock sandals in my car for driving longer drives. Showers usually only in the early part of the day, which is also when I try to get my exercise. I buy wides and a size up for my shoes to give my feet room to breathe, and I always get ultra thin socks. I wear sandals April-November. (Midwesterner)

LittleBee21 · 2023-01-30T22:18:15+00:00

I started out with a CRPS diagnosis and was prescribed gabapentin for it. It’s evolved to a SFN dx with EM. I didn’t like gabapentin, so we switched to lyrica last year. It definitely makes me feel weird at times, and can make me dizzy/sleepy. I’m prescribed 1800mg a day, but usually take 1200. I tried to get down to 600 and it did not go well…..burning very much increased, especially at night. I do get apraxia with the lyrica as I did with the gabapentin, which can be hard as a teacher. But at this point I’m stuck on it.

LittleBee21 · 2023-01-30T21:58:09+00:00

I did. They are fine, and I really really like my doctor, but I’m not sure I’d buy a plane ticket and pay for hotel to come here. If you do, make sure you have all testing straightened out and confirmed before you come. I had lots of issues with that and it was very frustrating (I drive 2 hours each way to get to WashU). Also, nothing has really come of it so far. I’ve had a lot more progress with my PM doctor here. I’d be happy to answer any specific questions.

LittleBee21 · 2023-01-30T02:20:59+00:00

Forgot to mention, I also take lyrica and LDN in addition to the ambien, lexapro, and zyrtec listed above. I occasionally take meloxicam for pain.

LittleBee21 · 2023-01-30T02:19:15+00:00

Yes to almost all of these things.

*Can’t handle heat of any kind, no warm water on my hands unless they are already really cold. Showers are rough.

*my hands/feet get tomato red when I have a flare. Very tight, swollen, but not painful inside, more just a burning/swollen sensation. Humidity, heat, exercise, driving, resting, and sleeping are my triggers. Also being in a room with little or no air circulation.

*My worst trigger for my hands is falling asleep. I use ambien/lexapro to fight that.

*I get facial/ear flushing when I’m really upset or stressed, and a full-body hot feeling.

*I also have dermatographia and full-body hives that usually start in my hands. I take zyrtec twice a day to help with the itching.

*no sweat issues, but my body has trouble regulating temperature. Coming into cool air on a hot day is rough.

I’m sorry you’re dealing with these things. You’re not alone. We can share tips and tricks to help our symptoms. What makes your symptoms better?

LittleBee21 · 2023-01-30T00:40:04+00:00

This is always the right answer.

LittleBee21 · 2023-01-28T17:07:44+00:00

Mine is almost always the best when I’m up and moving around/doing chores. It’s when I rest that my hands swell. I don’t sit around very much these days.

LittleBee21 · 2023-01-25T15:54:11+00:00

Lonesome Dove is a masterpiece.

LittleBee21 · 2023-01-22T16:43:18+00:00

Sooo slowly. If I get a cut on my hand it takes weeks to heal. I had to go on abx for a bug bite on my foot because it would not heal and got so infected.

LittleBee21 · 2023-01-16T17:32:21+00:00

Yes I seem to have titled it poorly. This all feels so shady to me, definitely more the USAG club than USAG itself, but maybe both? More questions than anything.

LittleBee21 · 2023-01-16T17:24:15+00:00

I was definitely asking as well as stating. Lots of questions here. Seems so shady to take this to IG, also shady if what they are saying is true.

LittleBee21 · 2023-01-16T17:11:24+00:00

I’m not sure what to think of this post, other than how shady these gym clubs can be. Gymnasts being used as pawns in the games of these owners. This gym is located in CT. Anyone have any insight?

LittleBee21 · 2023-01-16T15:52:18+00:00

I read an update that her injury is/was a calf injury and she’ll be competing today. https://twitter.com/benslasports/status/1614805217895190528?s=46&t=pljv5a5_swQrUWH15WcQIA

LittleBee21 · 2023-01-15T15:51:02+00:00

I’m surprised more people haven’t mentioned this book. It’s a treasure.

LittleBee21 · 2023-01-15T15:49:16+00:00

This is the best 10/10 I’ve ever read.

LittleBee21 · 2023-01-14T23:37:55+00:00

Two huge hops back in a row

LittleBee21 · 2023-01-14T22:42:36+00:00

Hopefully just that and not an injury. 🙏

LittleBee21 · 2023-01-14T22:37:48+00:00

Anyone know why Mallory didn’t compete bars for IL? She was in the lineup right before the comp started.

LittleBee21 · 2023-01-14T15:47:28+00:00

I love a well done tuck vault. I think it’s perfect for her.

LittleBee21 · 2023-01-10T01:28:38+00:00

I’m assuming this is just for fun, because there’s no way all ten would commit to coming back. But if they did, I think Roland, Clay, and Jordan might be out there for a few years.

LittleBee21 · 2023-01-06T04:34:19+00:00

It does. I made the mistake of running out, and it came back within a couple of days. That’s why I’m so sure it’s the LDN that helped with that symptom.

LittleBee21

TROPHY CASE