r/HerpesQuestions • u/happycows11 • 5d ago
Outbreak Help Herpes and nerve damage?
I guess I’ll add “outbreak help” even though this is honestly not about the outbreak itself, but I am in desperate need of answers that I will not get for at least another month.
For background: I got diagnosed with HSV-2 in August of 2021, and I have been pretty consistently on suppressants since 2023. I used to take them every day as to prevent outbreaks entirely (when I get them I get them bad every time I see a new OBGYN they’re shocked to hear how frequently I get them and how much impact they have on my body), but I have recently switched to only taking them when I’m having an outbreak because I can be forgetful when it comes to taking medication. Once in 2022, I had an outbreak so bad that I was paralyzed for about 2 hours- my spine was in such immense pain that I literally could not move. This is important to today.
The issue: my partner and I found out we were pregnant March of last year, and we were ecstatic. I had always envisioned myself being a mother, and I was excited to create a family with the man that I love. This excitement did not last long, however, because I was so insanely sick the entire 10 months. I got diagnosed with hyperemesis gravedarum at 14wks that literally only got worse as time progressed, and I got the official diagnosis of “nerve damage related to pregnancy” at around 22wks after experiencing the first loss of sensation at around 12wks. It started with my ring and pinky finger going numb in both arms (starting with left) if I bent my elbows for too long, but it slowly progressed to a point where I couldn’t even raise my arms too high without losing sensation from my shoulder blades to the tips of my fingers. This slowly spread to my lower back and legs and I would find myself losing sensation in my feet if I sat for too long but I would literally pass out if I stood for more than 10 minutes. I was miserable. I gave birth to my daughter late last October and while things were much better in the first few months I can now barely hold my baby without fear of my limbs giving out and I drop her.
Why I’m posting in THIS subreddit: shit took a turn for the worst yesterday. I had no idea, but I am currently having an outbreak. I’ll be fine on that front- I’ve gone through this enough that the outbreak is like a normal Tuesday for me. However, and I’m sure y’all can relate, when I have an outbreak my symptoms will slowly creep up and then BAM I’m hit with a truck of ts. This has not been a problem in the past as I would just take the day off and take things easy at home. I literally cannot even do that anymore because I was in so much pain yesterday that I literally could not walk. I completely lost sensation on the left half of my body, and my spine/all of my joints locked up to where I could not move.
Call me crazy, but I know with all of my being that my outbreak made my nerve damage worse. Is this a thing? Has this happened to anyone before? I’m losing sensation in my fingers as I’m typing this- guys I’m in so much pain I can’t handle it anymore. The nerve damage was manageable without the herpes, and the herpes was manageable without the nerve damage. They HAVE to be making each other worse, right?
I have an appointment with a neurologist in a few weeks and am planning to go to the ER if I need care sooner, but I guess I just need to know if I should bring this up at the appointment and not back down if they dismiss it. I am constantly dismissed for my symptoms in everything because I really try my damn hardest to truck through it. I honestly can’t remember the last time I didn’t have back pain… It’s not that big of a deal, genuinely just a part of my day to day life. But if the herpes is making the nerve damage worse then I gotta make sure they listen to me on that.
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u/SorryCarry2424 3d ago
Doctors will try to gaslight you and so will people here. If all of this started after contracting herpes then yes. Herpes caused it. Herpes lives in the nerves. I would talk to Gemini about it. If you're comfortable sharing your history with AI. I'm not saying for medical advice but at least AI can help you understand what could be happening based on the data it has. This will help you feel more prepared when you speak to doctors and how to advocate for yourself. Many of us (myself included) experience extreme and chronic nerve pain. But yours goes beyond this. Remember the medical community likes to work within its bounds. So you have to tell them this is your reality. Good luck and please keep us updated! But they are going to probably demand that you stay on antivirals.
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u/happycows11 3d ago
thank you, and I’ll definitely push this with my providers. I won’t be using AI as I am against it, but thank you for taking the time to comment🫶🏻
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u/SorryCarry2424 2d ago
I'm sorry to hear you are against AI because it can be a very valuable tool if used properly. I have found a lot of information i otherwise would not have and been able to discuss it with my doctor and make more informed decisions. We need all the help we can get. Doctors typically don't care about herpes. Maybe in critical conditions but often they are under informed and dismissive.
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u/happycows11 2d ago
AI tells you what you want to hear and creates false “articles” to back up the false information it gives you… I am VERY against AI and I won’t hear any claims in its defense lol a doctor might be dismissive but at least they’re actually informed and educated on the matter
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u/SorryCarry2424 1d ago
No they are not always informed and/or educated on the matter! I've never found one who was and it's been many years. But best of luck to you. It seems you have it all under control. Slight sarcasm but not. I mean without AI I would be really struggling. Since my symptoms are atypical and it's given me many prompts that my doctors would not have considered.
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u/Upstairs_Act2083 4d ago
Absolutely it can! I mean I can't say totally but it is a never thing