Moderators? Why was my previous post from an hour ago taken down? It was titled - Update: 100 days post-Moderna = Neuropathy + Inflammation + Mental Health + Being a woman is exhausting

[silky_pengu28]

Just a heads up: My first post was deleted, but the mods clarified in the comments that it was an error. I can’t edit the title now, so thanks for understanding.

Here is the text from the original post:

Hello everyone. Yesterday marked 100 days since my first (and only) Moderna dose, and I wanted to share an update. If you saw my earlier thread, you know I dealt with a variety of issues—mostly nerve and joint pain, intense anxiety, and terrible insomnia. Because of these symptoms, my physicians have all advised me against getting the second dose.

Latest Updates:

Neuropathy: After extensive testing, my neurologist believes I have small fiber neuropathy (SFN) triggered by the first shot. We are doing a few more tests to be certain, but the evidence is strong. SFN is essentially inflammation of the sensory nerves, leading to sensations like burning, tingling, or skin crawling. My doctor noted she has seen this in several female patients in their 20s to 40s. On the bright side, my large nerve fibers are healthy, and most SFN cases eventually clear up, though it can take months. Also, the frequency of my nerve pain and muscle spasms has noticeably decreased. It tends to flare up most during ovulation and my period (proving once again that being a woman is a lot to handle).

Clotting Concerns: I previously mentioned my genetic clotting disorder, which I’ve managed for nearly two decades. I’m on lifelong blood thinners. Having experienced a PE and DVT before, I can say this pain is totally different. Clots feel like a stabbing sensation, whereas this does not. My bloodwork is being watched closely and looks normal, and multiple scans have confirmed there are no clots.

Inflammation: I’m still struggling with some inflammation (CRP is fine, but my sed rate is high). Like the neuropathy, it peaks during my cycle. My hormones and TSH are within normal ranges, though TSH is on the low end. The inflammation usually manifests as neuropathy in my hands, and strangely, my armpits and breasts.

Mental Health: The stress of the past few months led me to seek professional help. I found a great psychiatrist, and we’ve been using CBT. It’s been very effective for managing anxiety and depression without medication. A healthy mindset is crucial when things get tough. Lowering my stress has helped my sleep slightly, and I’m looking forward to an upcoming sleep study.

Summary: I am slowly recovering. I have a good level of antibodies from the first shot, so I’m just monitoring things with my doctors. If a different option like Novavax becomes available later, I might consider it.

What’s helping: Acupuncture for nerve issues, Tylenol for headaches, focusing on sleep hygiene, and honestly, just letting time pass.

I really appreciate all the kind messages I’ve received. Your support means a lot. I wish everyone the best on their health journey!

[jolly_rabbit]

I believe we need to keep sharing this information. We still understand so little about the virus, let alone the vaccines that millions have taken while they are still in clinical trials. The more data we share, the better equipped everyone is to know what to look out for.

[jolly_rabbit]

I don’t want to hijack the thread, but I feel like this sub is getting way too restrictive about what can be posted. I tried to ask if anyone else was planning to skip the boosters and I was buried in downvotes immediately. Why suppress these questions? I’m just looking for perspectives to help me make an informed choice!

Sorry for the vent, but it feels like a lot of valid questions and info are being treated as anti-vax when they aren’t. (For the record, I’ve been fully vaccinated with Pfizer for a month!)

[driesmaecr2]

Wow. I’m a 43-year-old female, and your description of neuropathy matches mine almost perfectly. I don’t have a clear cause yet, but I just got a neuro referral yesterday for migraines, and this is the first thing I plan to bring up.

I’ve had minor ‘skin crawling’ sensations during my cycle before, but about two weeks after my second Moderna shot, I started getting these electric shock sensations. They are mostly on my scalp but sometimes in my limbs. Now, I feel itchy everywhere. The shocks are very painful but short, usually happening while I’m sleeping. It doesn’t seem like trigeminal neuralgia since it’s on my scalp and temples rather than my jaw. It’s incredibly frustrating to deal with constant zapping and itching.

Quick question for you, u/Competitive-Pea-339: Do you have a history of migraines? I’m curious if the vaccine might be triggering underlying neurological issues, but I haven’t seen much reported on it outside of this sub. My doctor just gives me the standard ‘you’re a woman over 40, lose weight and drink less’ brush-off.

I hope you find relief soon!

Edit: I checked my notes, and the head shocks started exactly 14 days after my second dose (April 7). The constant tingling and skin crawling followed shortly after. I’ve tried to track it with my cycle, but since I had a partial hysterectomy, it’s hard to be certain, though they don’t seem strictly tied to it.

[ready_ampere4]

The removal happened because your account is brand new. We have an automated system to stop people from dodging bans. A moderator has now manually checked and approved your post. You’d be surprised how often people try to get around bans with new accounts.

[happy_raven97]

Please keep sharing your story for those of us going through the same thing! Thank you for the update; it really gives me some hope.

[sneedreagi7]

I’ve also had a bad experience since my second Pfizer shot. I’m dealing with terrible inflammation and a flare-up of auto-immune problems. My doctors admitted they are seeing more cases like this now that they didn’t initially link to the vaccine. People with chronic issues really need to be aware of this.

[dreamy_ramen]

This post is so validating! I’ve been dealing with painful neuropathy in my feet—lots of burning and pins and needles—since my second Pfizer dose. I eventually noticed it got worse right before my period, so I suspected a hormonal link but couldn’t find any info on it. I started a regimen of anti-inflammatory supplements like ginger, garlic, and Nervala, and the nerve pain has almost completely vanished. It really confirms for me that inflammation was the root cause.

I’ve been feeling significantly better overall since starting those supplements, so I’d definitely recommend looking into them if you think inflammation is your main issue.

[jolly_huygens3]

26M here—I’m six weeks past my first Pfizer shot. I’ve got joint pain in my fingers, toes, and wrists that started three weeks in. It’s very painful. I’m taking Lyrica and Naproxen to manage the nerve pain and inflammation in my arms. It’s been a very difficult experience. I’m glad I’m vaccinated, but this has been a rough path.

I struggled to even type or play games because of the pain. Fortunately, it seems to be a peripheral issue rather than central nervous system. My neurologist said it’s benign and my PT thinks it’s a viral reaction. My doctor ran a battery of tests (RA panel, HIV, bone scans, etc.) and everything came back negative. People say side effects usually clear up by week 10, but I’m starting to lose my patience.

[misswibb]

I’m going through the exact same thing and I feel like I’m losing my mind. I have numbness and tingling in my limbs, plus joint pain and muscle twitches. I’m 5 weeks out from my only Pfizer shot. I’ve felt so isolated, especially with the electric shock sensations in my legs. I was terrified I had ALS. I have a physical in two weeks to check everything, but I’m so sick of people telling me it’s just psychological when it clearly isn’t.

[mellow_shannon3]

I’m already vaccinated, but I have a sincere question: if experts say mRNA is fragile and leaves the body within a few days, why are so many people experiencing side effects that last for weeks or months?