Heat Intolerance: Symptom of Neuropathy?

The first time I had a EMG test it came back normal, but the next time it came back I had Neuropathy. Didn't make sense. My symptoms started after I took the double dose Shingrix Vaccine in November 2019 and been messed up off and on since then. I had all kinds of xrays, scans, mri's EEG, EMG, and couldn't find anything, then they found neuropathy the second time around. Doesn't make sense, never did. I had only 1 doctor state it was vaccine related. So how do you "undo" a vaccine related injury?

Thank you all so much. You helped me. I been watching the group for awhile but, I never wrote. You know that feeling in your stomach when you have to try to explain it to people and they don't get it? I bring a fan in my purse...everywhere I go. I think I had to just do the holiday. My first one alone. But I made a turkey with all the trimmings. It was wonderful!! You know when you cook something so well, you're proud? I was. And I was happy I cooked so well. I haven't cooked since February. I just buy whatever. Anyway, I feel better. I just didn't know what to expect for being alone the holidays.

I go a few places sometimes. I loved this Italian restaurant, I went once a week. But, now that it's winter...even though it's still hot....I went recently several times. Now they don't have the ac running because it's not summer. So, that sucked. Believe it or not it is easier to live somewhere hot, even though I'm not crazy about extreme heat. Because in the summer, everywhere has good ac running. Because I thought about this years ago. I thought of moving somewhere cold. It's worse. If it's cold....then the heat is on everywhere. Like the grocery store, and restaurants. So, no way. Living somewhere where the heat was on.....no way. I went to Vail last year...OMG it was like 7 degrees. I LOVED IT. I was out in a tee shirt. I hope to write more. Well, look at that. I wrote a positive message. Maybe being able to talk to people helped too. You guys were my therapy...and still are. Send me the bill.

Have a good night you all. Attached is a pic of my Winnie. I love animals. I've had collies over 25 years. This is Winnie at a few months old. Thank you all. Please don't leave me. I get lonely. And just to talk to people who understand what a "small fiber neuropathy" is. No one believes it is even a thing...lol...people just look at me like...what? Enjoy this puppy picture of Winne.

Winnie looks adorable. Now, I don't have what you have. I'm just overweight and can't take the indoor heat. So just this Fall I started to wear my sleeveless shirts under my jacket. Some people look at me like I'm crazy but it works. I feel comfortable and if I get cold I just put on a very light sweater. Also I try to stick to cotton or rayon, polyester is way too warm...good luck !

If there was an undo option, there would definitely be a lot of happy campers in the world. The best you can do is find something that provides relief for the symptoms, hopefully something that doesn't require drugs (in my humble opinion).

Unfortunately, I don't think you can "undo" a vax-related injury.

After seeing doctors, including specialists in the Houston Medical Center, they have diagnosed me with Long COVID.

I have it. In 2014 I became severely heat intolerant. I just live in my house. I don't have a life. I burn up if there is no air moving in a room. I have trouble going to restaurants, no movies, no stores. No life at all and no hope of one.

Hey,

Last summer, from one minute to another, my scalp started itching and burning. Thought it was a flare up of my eczema, but after weeks it became very severe, started spreading towards my chest, back. I couldn't endure my clothes anymore or the pressure of heath. The sun was burning my clothes into my skin. After seeing multiple doctors (neurologists, dermatologist, ER, nutritionists) and getting antidepressants that didn't work. On MRI's was nothing to see. I completely lost it. I started drinking to numb the pain which worked for a short period of the day until it didn't anymore. I just wanted to die because I barely slept during the first 3-4 months since the pain began. I couldn't understand why my body was doing this to me. I only stayed inside during summer and barely could wash myself because the water hurt my skin. Begin october I started to use sleeping aid medication. As it began to getting colder the pain went away, just like that. Winter is pure wellness for me, I even enjoy warm showers in a cold environment, stove (from a distance) is pleasant, but last month I started to get anxious as spring and summer are getting closer again, so I started to look for a new neurologist. I found, finally!!!, a doctor who understands me and after hearing my story he immediately called the hospital where he works besides his private practice, to book me in for a biopsy to see if it is sfn. Can't avoid treatment then with stronger antidepressants. He is the first one that assures to me give me painkillers if the pain becomes extensive again during summer. The other doctors gave me codeine... He also wants me to go under a tanning bed when I'm ready (actually my idea) for a few minutes to see if something has changed over the past months and how I react to extreme heat now. I had covid just before getting the symptoms, so I hope it spontaneously went away just as it spontaneously began. I use trazodone too since 6 years, doctor said it could be a trigger too... As I read all you guys stories, I think the war isn't over to be honest, because apparently it never goes away if it is indeed sfn? I'm so sorry for your pain by the way, it isn't fair and I hope you have a few good days too so you can get outside. Temperature isn't something we need to think about, just adapt our clothes and protect our skin during extreme cold and heat. Never knew something like this existed. If you like, I want to place updates about possible treatments my doctor will start if it is indeed sfn or another sort of neuropathy. Which treatments did you undergo yet? My doctor is doctor Oedit from Belgium, extremely compassionate and very determined to help and comfort his patients. Even gave me his number to contact him via WhatsApp if necessary. Finding a compassionate and good doctor helps a lot. 9th of march I will get the biopsy. Hang in there! Love, Jen

Hello @jenny88, Welcome to Connect. It's great to hear you have a doctor who is listening to you and working with you. You might also be interested in a couple of other discussions:

--- Living with Neuropathy - Welcome to the group:
https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/
--- Member Neuropathy Journey Stories: What's Yours?:
https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/.
Can you give us an update after your upcoming biopsy?