@larag I agree with you. I’ve had the same going on as well. I can’t sleep either and each day seems to be worse. I’m trying to remain hopeful with the stories of people feeling better after about 4-5 months. I’m going to keep you in my thoughts and prayers.
@dgingoglia Hi Donna. So sorry to hear that. Unfortunately, I can confirm. So far, week 4/5 have been the worst for me. I'm officially at week 6 as of today. I have my EMG soon and I have 2 different MRIs coming up apparently, but I haven't had them booked yet.
I visited the ER Wednesday night as the pain made a massive jump in severity and I could no longer put weight on my left leg. The ER doctor was kind but unfortunately she could give me no new information. I've now tried Gabapentin and Cymbalta and neither have done anything for my nerve pain. Hoping to know more soon, but feeling a bit defeated. 🙁 Also, a kind of interesting story... I told the nurse my symptoms as I was waiting for the doctor, and he wrote them down. Afterwards, he came close to me and said (paraphrasing a bit, of course): "I'm really not supposed to say this, but I've seen a few people come in with your symptoms after the vaccine now. The doctors aren't going to say it, either. But I hear you and believe you."
So that was kind of surreal. Felt like I was in a horror movie. Nice to have the validation, but frustrating about the doctors. However, I will say, my neurologist does think it's an adverse reaction so at least he's making that connection both in my formal notes and verbally to me.
@larag I'm so sorry. That's so hard. I'm feeling similarly low. Also trying to remember that many folks seem to feel relief around the 4-6 month mark. Some of us might take longer, some might be quicker. My neurologist said he believes this will pass in time and that it's not permanent. Please hold on to that hope. ❤️ I'm also always here if you want to vent or compare notes (can even give you my email). It's so tough to stay positive and I don't blame you for feeling awful, emotionally and physically. But I truly think we're all going to get through this eventually. I also relate to the regret. But we were going off the best information we had at the time, so we can't beat ourselves up too badly.
@larag Hello Lara, I really understand you, but I think it is clear that you also need psychological support and someone to listen / read you. It is evident that many of us have symptoms from the vaccine, some may not be from the vaccine, others will, and others will have symptoms from the vaccine but will be increased by their anxiety. And I think that's your case (and probably mine!). I am not saying that anxiety is the source of your symptoms. You are scared and that is probably making your symptoms worse. I want you to know that you have my full support and if you need to speak I am here. You are not alone and believe me if I tell you that at times I am fine and at times my symptoms and my fears are destroying me. I understand you and I am with you. Do not lose hope, these symptoms are neurological and usually take longer to subside than more "physical" symptoms. Much encouragement! And once again, I feel like my level of English is really bad. Today I am in a better mood and I just wanted to leave my message to try to help you. 😉
@larag I'm so sorry. That's so hard. I'm feeling similarly low. Also trying to remember that many folks seem to feel relief around the 4-6 month mark. Some of us might take longer, some might be quicker. My neurologist said he believes this will pass in time and that it's not permanent. Please hold on to that hope. ❤️ I'm also always here if you want to vent or compare notes (can even give you my email). It's so tough to stay positive and I don't blame you for feeling awful, emotionally and physically. But I truly think we're all going to get through this eventually. I also relate to the regret. But we were going off the best information we had at the time, so we can't beat ourselves up too badly.
I had 1st Pfizer shot May 27. As soon as the needle went in I had pins and needles, tingling, and numbness on my whole left side. ( Of course I never went back for the second ). It didn't go away completely for 9 weeks, but then the intense itching started. It's been going on for 4 weeks now. I feel like I'm dying. Anxiety is through the roof. I'm sorry I ever got this shot. It never should have been approved. I just hope it gets better and not worse. It does help to know I'm not alone.
@beeaydee does week 6 seem better? I’m hoping it peaks at some point. And then just keeps getting better even if slowly. I just am desperate for improvement as we all are.
interesting that the nurse said that to you. My neurologist has said he definitely thinks it’s from the vaccine —of course this is unless by blood work and MRI indicate something else. He thinks it’s temporary. I sure hope so and hope I can last. The lack of sleep is really tough.
Hi Peeps,
I thought I should share some positive news here.
I was experiencing almost most of the symptoms discussed in this forum just after the first dose.
I am happy to share that almost every symptom has gone away and haven't had bad symptoms for the last 2 days and hoping not to experience them in the future.
As per my experience, I can share what worked for me (only a guess :P)
I think my symptoms kind of shot up after I did a workout (crunches and push-ups). I guess for at least 1 month we should exerting pressure on our heart and system.
Although a walk is better than doing nothing in my experience.
In terms of food, I guess whatever causes inflammatory reactions are not good for this period.
Things which I feel should not be intake or avoided in this period are:
Tea, Coffee, Oily food, meat (not sure but better to avoid), overeating.
Also, try not to go to bed almost for at least 2-3 hours after dinner.
I did intake of (turmeric+ginger) boiled with water, juices and Omega-3 vitamins.
Also, in my experience, different symptoms will come and go.
Please let me know if I can be of any help.
Hope symptoms go for you too and you can live your life freely soon.
I have not taken my second dose yet and thinking of taking it after at least 2-3 weeks later and when I am confident I have no symptoms left to handle.
@dgingoglia Ugh, the lack of sleep is so awful, I feel for you. 🙁 Sorry, I wasn't doing the math right. I should have said weeks 4-6 so far have been the worst. (Since today marks 6 weeks.) I would say some days around week 4 seemed to be the peak in terms of pain, except that the last few days have also been brutal. So it's hard to say. I wish I could give you a bit more hope or a clearer timeline. I've reached out to a lot of people, and some say week 6 saw improvements, and some said weeks 8 or 10 or even 12. So it looks like there's quite the range. But I'll definitely keep you posted! I believe you can get through this, I do. ❤️ I've had a few days where I felt like things were finally slowing down and then it flares right back up. I've also read that's fairly "normal" too. Gah. Just wanting my life back so badly. Are you doing anything to distract yourself from the pain/other sensations?
@beeaydee during the day is much easier to distract myself. It’s the nighttime while sleeping that it’s the worse! I just want to sleep 😩. Please do keep me posted on your condition. We’ve all formed kind of a bond here with this.
@beeaydee thank you so much for reaching out. I feel so lonely in all this. My family think I'm crazy and dramatic I'm sure of it.
I'm on week 12 today and it's had times where I've been doing good but I seem to have gone way downhill again. Maybe me you and @Dgingoglia could share emails and have a little support group or something. This forum is the only comfort I get but I get confused sifting through all the messages sometimes that I fear I miss replying to people.
Xx
@larag I remember when I was at 3 months. I felt similar to what you're describing. At that time all I could think was "I am sick, and I'm not getting better." I totally know what you mean when you say, "This isn't living." At 3 months I was also struggling with sleep, which is one of the worst parts of this craziness. But I can definitely say that the symptoms have gotten better for me. My outlook has improved as well. I still have flare ups, and they can be discouraging, but they happen less frequently. My overall energy has improved dramatically. Right now I'm just over 5 months from my 2nd shot.
Not sure if you read the post by GGZ11 on page 17. It's very encouraging and what he says about the recovery process really resonates with me. This is what he said -
"Symptoms did not decline in a linear fashion. It's been cyclical with few days feeling better followed by a phase where symptoms are back. The good thing is that with every cycle, the intensity of symptoms has been getting better. I wanted to share this because I really struggles with the non linear way of improvement. I expect that when things are getting better, they should continue to. But, this recovery has been far from that."
This description nails it, at least it does in my case. Last Sunday night I had a serious flare up, but the rest of the week has been pretty good. Right now I'm about 75% better, definitely not 100%, but way way better than I was at 3 months. Hang in there and take care!!!
@stela I got my shot on the 19th of August. Nobody I know has any symptoms..which makes it hard to talk to people about it…it started with waking up with both my hands numbs, the anxiety was to much to handle. I couldn’t sleep. Then both my legs and feet started to get numb and tingly. Parts of my body feels weighed down and it comes in waves..today parts of my body started twitching… I’m so upset that I gave in and got the shot. I work in the medical field so I was getting emails saying if I didn’t get it and didn’t have an exemption then I would be fired. I feel your pain. I know exactly what your going through. 😞
@adenk yes! My hands are always cold! And I wake up every morning with both my hands numbs, like they are asleep. This whole experience has been a nightmare.😞
@jpgdubgmail-com thank you so much Jean. I really needed to hear/read that this morning. This forum will be my life saver that's a fact. Thank you. Fingers crossed for us all xx