MTRJ75 Posted May 8, 2021 Report Share Posted May 8, 2021 This is always one of those odd symptoms I feel I have difficulty describing to doctors or really anybody, but luckily haven't had, at least to this level, in quite a long time. I'm actually wondering if it's partially a vax effect. So I've still been getting these surge type feelings in my shoulders or coat hanger area, which are uncomfortable for a couple of hours and then seem to dissipate. It's like someone's gripping you, maybe a little bit like sunburn too and some pins and needles. Anyway, this is how I woke up today and tried to ignore it. Around mid-afternoon, it started to branch out on me until it enveloped my whole body. Heart rate normal, oxygen levels normal. The more I tried to ignore it and carry on, the worse it gets. Full body squeezing and pins and needles. Even my head and neck were buzzing so hard I felt I might actually drop. I tried to put everything down and relax and it got worse. I get up and go get a glass of water, it temporarily decreases while I'm moving. I strain or clench up and it relieves it a bit, but as soon as I try to relax again, the tension and burning comes back with a fury. I've actually ended up in the ER with this symptom a couple of times in the past, especially when it occurs when I'm trying to sleep. This was one of the rougher episodes now and I'm not sure if it's fully over or not. I thought it was done or calming a few times and surged back. My mother got the idea to check my blood pressure during this and it was consistently 145-150/90-95 (I'm normally close to 120/80) no matter how much I tried to relax. Down a bit now, but still somewhere in between that and my norm. I hope this is a temporary surge, but will have to keep checking for the next week now. So here's the vax part. First shot a week and a half ago. For four or five days I actively felt my nervous system a bit more heightened and uncomfortable than usual. But then this week, I felt I was back to my norm, if not better. Not feeling good or anything, but no serious concerns and I realized I even went a couple of days without PVCs. It's been cold and wet all day. Fine, that's part of it, but I'm wondering if the vax is keeping my nervous system, maybe not on high alert, but much more sensitive and easier to tip. Or maybe it's just some whacky part of my dysautonomia or neuropathy that wants to constantly remind me it can destroy me at any time and without notice. And for as long as I've been having these surges (years, before I even knew what dysautonomia was) I still don't know what's going on inside my body during them or what (if anything) sets them off. Quote Link to comment Share on other sites More sharing options...
Jyoti Posted May 9, 2021 Report Share Posted May 9, 2021 Sounds like something I call 'The Iron Maiden" @MTRJ75 ! It is always worst around the head neck and upper torso, but mine spreads too until I feel like I am literally inside a torture chamber. Quote Link to comment Share on other sites More sharing options...
MTRJ75 Posted May 9, 2021 Author Report Share Posted May 9, 2021 Yes, but only if the Maiden was on fire too. Seems to be something going on with lactic acid because the aftermath is similar to what I used to feel after workouts, especially weight lifting (back when I was able to). Quote Link to comment Share on other sites More sharing options...
Jyoti Posted May 9, 2021 Report Share Posted May 9, 2021 23 minutes ago, MTRJ75 said: Yes, but only if the Maiden was on fire too. I think they sometimes did that. Devilishly clever. Quote Link to comment Share on other sites More sharing options...
MTRJ75 Posted May 14, 2021 Author Report Share Posted May 14, 2021 So this is happening again today. I'm not sure what kind of neuropathy this is, but every muscle in my body is cramping and squeezing. I seemed to set it off by walking outside with the dog and standing in 70 degree sunshine for less than five minutes. Since coming in, every muscle in my body (arms, legs, chest, abdomen, neck, even head) has been in indescribable discomfort. Feels like it has something to do with lactic acid, but what is the mechanism here? Burning, nausea, bladder and bowel emptying, blurriness. Everything is going on right now. The exertions needed to set me off are becoming less and less too recently. I'm generally fine if I don't move from the couch, but d*** it, is this some kind of neuropathy that's gotten so bad that I can barely stand any stimulation at all now? Quote Link to comment Share on other sites More sharing options...
E pots Posted June 7, 2021 Report Share Posted June 7, 2021 Any answers? In same scenario. I used to be able to exercise to help now any exertion is too much...no relief. Quote Link to comment Share on other sites More sharing options...
MTRJ75 Posted June 7, 2021 Author Report Share Posted June 7, 2021 No. None at all. The surges have been more moderate the last few weeks (at least for me, though they would probably still send a normy to the ER), but I'm still struggling every day it's nothing I can figure out. Maybe the vaccine, maybe weather changes, but I seem to have some type of issue with every weather condition. Quote Link to comment Share on other sites More sharing options...
merkat30 Posted June 8, 2021 Report Share Posted June 8, 2021 On 5/14/2021 at 5:58 PM, MTRJ75 said: So this is happening again today. I'm not sure what kind of neuropathy this is, but every muscle in my body is cramping and squeezing. I seemed to set it off by walking outside with the dog and standing in 70 degree sunshine for less than five minutes. Since coming in, every muscle in my body (arms, legs, chest, abdomen, neck, even head) has been in indescribable discomfort. Feels like it has something to do with lactic acid, but what is the mechanism here? Burning, nausea, bladder and bowel emptying, blurriness. Everything is going on right now. The exertions needed to set me off are becoming less and less too recently. I'm generally fine if I don't move from the couch, but d*** it, is this some kind of neuropathy that's gotten so bad that I can barely stand any stimulation at all now? Sorry u feeling so horridous it scary also when dont no the cause. Do you get rash with weather changes ? Do you have mast cell probloms? This sounds soo much like me it just horrible isn't it hang in there x Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.