@dreamer92 please come back and share your results I’m seeing a functional medicine doctor as well I have hearing sensitivity and eye issues mainly on the left that are now getting worse since a year they were mild at first but now much worse after noise exposure and it’s weird how noise affects my eye muscles and focus it’s like it doesn’t want to work well with my right eye
she started me on mg gli at bedtime and coenzyme q10 once a day with food I’ve been on it for maybe two weeks now so I’m hoping to see some results by the 2-3 month mark. It’s very low doses the mg is 100mg at bedtime and the COq10 is 100mg daily with a meal…
Sorry to hear for your troubles.
Mine full blood test just arrived yesterday and everything is absolutely perfect. The only thing that was slightly elevated was serum calcium..
I am only waiting for Arsenic blood test beacuse it takes more time than normal tests but anyway my doctor suggested me to stop taking all the supplements such as b12, fish oil, any sort of vitamins.
My situation improved very fast to say 80/90% but currently I am dealing again with covid so my whole body feel horrible..
At the present doctor do not suggest any further thing untill maybe 1/2 months to make again blood test beacuse he already tested my nerves and many other things so he don’t have a reason for MRI or anything else beacuse MS patients have debilitating issues, so mine immedietely said it has nothing with it..
As I saw from page one untill 164, most of the users with troubles are not anymore active which I believe all of us heal at some point.
Hi all, I posted a couple of times on this page before. I had the vaccine back in October 21, and had multiple adverse affects such as numbness, joint pain, impaired vision, extreme tremors. While I was able to move on with my life after the first 3 months. I still have these symptoms, but I would say 85% back to my old self. There isn't a day that goes by where I don't feel some numbness in my hands and feet, but I can't complain. I've started taking ice code showers for last 30s to a minute of my normal shower, and I've found it's helped a lot. There is a lot of benefits to cold showers, and for anyone suffering, it's harmless and free to try. Everyone is different and I don't think there is any real cure for vaccine related injury, but that seemed to help me recently. It really is a waiting game. The start was scary, where I was full sure I had MS! Thankfully after many hospital visits the the doctors seem to agree it was a vaccine related, but refuse to make an official diagnosis.
It does get better!
I just wanna give a quick update.
Just recovered from the flu and I feel 100%! No tingling, pins and needles anymore!
My doctor was 100% correct. I had debilitating issues beacuse I thought I am doing a correct thing drinking b12, fish oil, vitamin c everyday and I questioning why my sympthoms are not going away!
The reason was just one as doctor said, overusing supplements. Previously I posted that doctor said that pins and needles are happening beacuse of that, I couldn’t believe that untill it prooves that we was absolute right.
He said that it takes time and it gradually after few days go away and I feel amazing.
Consult with your doctor and stop using supplements on your own!! I was trying to be my own doctor which turnes to be absolute nightmare..
I just wanna give a quick update.
Just recovered from the flu and I feel 100%! No tingling, pins and needles anymore!
My doctor was 100% correct. I had debilitating issues beacuse I thought I am doing a correct thing drinking b12, fish oil, vitamin c everyday and I questioning why my sympthoms are not going away!
The reason was just one as doctor said, overusing supplements. Previously I posted that doctor said that pins and needles are happening beacuse of that, I couldn’t believe that untill it prooves that we was absolute right.
He said that it takes time and it gradually after few days go away and I feel amazing.
Consult with your doctor and stop using supplements on your own!! I was trying to be my own doctor which turnes to be absolute nightmare..
I wish this We’re true for me. I haven’t been taking any supplements for sometime and only started so not taking anything didn’t do anything for me. Glad to hear you’re 100% better. You are so blessed. Enjoy it. Maybe that will be us someday too.
Does anyone know if these symptoms can start appearing many months after a vaccine dose? I had a booster Pfizer shot in December of 2021. Tinnitus started at the end of July of 2022, and then nerve tingling and pain throughout my body in September of 2022. Like with many other cases, doctors are reluctant to treat me, and just tell me it's anxiety (I'm positive it isn't). It seems like it's usually within a few weeks that these symptoms appear, so I'm curious if it took 8+ months for anyone else like it appears it may have for me.
yeah it can happen any time because they’re still circulating in your body my daughter got the vaccine dec 2021 and got tinnitus dec 22…hives sept 22…was in Benadryl for a couple days it went away then the Tinnitus came…covid dec 2022 then heart palpitations two weeks later where her heart rate shot up to 150’s simple activity…it subsided after. A month…but whenever she get sick cold flu her ringing gets high or if she has a fever she ringer gets high…we went on a road trip her and I she had a nap in the car she woke up with a sore neck then she got a pounding head whenever she walked a bit her blood pressure was good heart rate again acting up …keep giving her Advil …her ringing got louder again during this time…then her pounding head took couple days to go away…she never had issues before the vaccine and she’s only 10. I’m a shitty mother. Fucken regret everyday of giving her the one jab glad she only got one ..but I still get
mad at myself
@dreamer92 18 months and worst than ever. Many people just don't post anymore like me because there is no point. Small fiber neuropathy almost no one heal from that
I just wanna give a quick update.
Just recovered from the flu and I feel 100%! No tingling, pins and needles anymore!
My doctor was 100% correct. I had debilitating issues beacuse I thought I am doing a correct thing drinking b12, fish oil, vitamin c everyday and I questioning why my sympthoms are not going away!
The reason was just one as doctor said, overusing supplements. Previously I posted that doctor said that pins and needles are happening beacuse of that, I couldn’t believe that untill it prooves that we was absolute right.
He said that it takes time and it gradually after few days go away and I feel amazing.
Consult with your doctor and stop using supplements on your own!! I was trying to be my own doctor which turnes to be absolute nightmare..
Hi. I think you recovered from the pins/needles and tingling cos you caught the flu and it reset your immune system. I have read stories like this before mainly for people with LC. Another bug heals them. And for some LC suffers, taking shots heals them too.. but not everyone.
If probably best to be careful catching anything going forward.
@dreamer92 18 months and worst than ever. Many people just don't post anymore like me because there is no point. Small fiber neuropathy almost no one heal from that
Hi. I think you are right. A lot of people don't post anymore cos they haven't recovered and have joined other sites (Facebook groups and reddit etc) for ideas on how to heal or how to adapt with their chronic illness now.
That said some people have recovered or close to it, or can manage it with meds.. say pots, high blood pressure, insomnia etc
Some people however aren't as bad as others. I have read some posts where the symptoms wouldn't be nice but are manageable. They can still work and have a life, not as great as before but can move on to a certain degree.
I suffer from an array of symptoms but sfn is my worst one. Its constant. I caught a gastro bug a while ago which helped my sfn. Prior to that it was getting quite bad. I definitely think mine is immune system relapted, probably the same as yours.
My suggestion, if you haven't already is to go on Facebook and join some long covid, neuro v hauler, sfn, burning v groups. You have to be careful in what you read, but there are some useful information which is helping people. Low dose naltrexone has helped many.. not cured anyone but helped. Unfortunately it hasn't helped me.
Mast cell activation could be adding to your sfn. Some people have found symptom reduction with ketotifen.
As for me I actually have nerve damage. My sense of touch and temperature is impaired. Some people with burning and no touch issues have been diagnosed with sfn via biopsies.
Some people have been diagnosed with Lyme disease, treated it and are 95% better from their sfn like symptoms.
Are you on an anti inflammatory diet? Yes it won't cure you, but it might help reduce your symptoms. Reduction in symptoms is good cos then at least you can smile for a while.
Have you identified any triggers to flares? For some people its obvious or others like me its very hard due to my constant discomfort.
If we can't find the route problem and treat it, all we can do is try things which will help to slow down the progression of sfn. Yes I said progression.. and I don't like saying it or thinking about it. If we can slow down the progression then we can live a little better for tomorrow.
I am not saying solely a medication approach cos at best it will mask the pain to a degree. Our small fibres have been attacked and are damaged. We need to try and reduce the attack if possible or help to protect these fibres. How? I don't know.. but there are people who have had sfn for years and have learnt a few things along the way. I do think ours is more severe but there's a lot of people suffering who have advice that has helped them.
Ldn might work for you...
P.s. this is to add to my other post.
Just be careful in the groups cos some people exaggerate their symptoms. It's easy to tell as when they are quizzed, their lifestyle and work life don't marry up with the pain they describe.
Also some people like to rant.. which is totally understandable. Again you have to weed through whats beneficial and what's not.. plus share what you find helpful or need help or advice with
Let me start off by saying I’m 25 and in great health before all this happened. I got the booster in October 2022. In April 2023 while, leaning back one day, I felt a shooting pain from my tail bone. I thought I just pulled a muscle. About two weeks later, I started to feel tingling and weakness in my legs in addition to back tightness and leg tightness. The weakness and tingling spread to my arms. I started to have electric shock sensations and feeling of coldness in my hands and face. I started to have headaches and dizziness as well as some vision issues.
it is now mid June and the vision has definitely improved. However, I’ve noticed the electric shock sensation comes and goes. I have weakness in my arms and legs. I’m still able to use them but it’s just a weird feeling. More recently, I’ve began to have twitching throughout my whole body. It’s very frustrating having to experience it in the face.
One doctor I spoke to was a little bit more informed on this, and mentioned all my symptoms to relate to what some people are experiencing as a result of the Covid vaccine. She told me that it’s something that takes time to go away. She said it could take 3 to 4 months to start feeling relief and with that it’ll slowly diminish. I don’t know anyone else in my life who is experiencing symptoms like this and it’s hard to tell because we are basically guinea pigs in this vaccination process. I would appreciate any insight into if you guys have had similar symptoms or how long it took for you guys to start to see improvements.
I’ve gone to the ER and many doctors so many times and they just keep on saying it’s anxiety. I know my body and I know this is not anxiety. It’s so hard to see the light at the end of the tunnel. I feel like I’m suffering every day and it’s getting worse.
Has anyone had sensations like this and has anyone experienced improvement? If so, how long did it take?
@buzzgirl trust me i know tons of people with life destroyed and they don't exagerate, i spoke for over a year with many that are no more with us because they couldn't tolerate this anymore
@winterdays they told me that to i am 18 months in and sfn and whatever i got with that is getting worst.
@buzzgirl trust me i know tons of people with life destroyed and they don't exagerate, i spoke for over a year with many that are no more with us because they couldn't tolerate this anymore
@winterdays they told me that to i am 18 months in and sfn and whatever i got with that is getting worst.
Hey. I am sorry if you took my message the wrong way. Yes I am aware of people ending their lifes as well. Continual pain is tiresome - especially when there is no end date.
Taking my own life has entered my head as well, multiple times over too many days to count. Thankfully after my stomach bug my symptoms eased a bit, so it has helped me to look passed it.
People have also ended it over long covid too.
My prayer has been (and continues to be) that people call upon the Lord, Jesus Christ, through their current tragedy. What if one is leaving one suffering realm to go to another? Jesus' body was never found, and throughout history He has been said to be a good man. If Jesus was raised from the dead, again no one has found the body, then what He said is True and we should learn about Him. I say this in love as I believe it's something we all should truely think about. Ignoring this doesn't make it untrue.. xo
@winterdays Hi just got a booster, 100 degree fever, chills, severe aches & pains my entire body, exhausted. Not as bad as you but they need to make a symptom free one shot thing, sick of feeling like this twice a year, takes about two months to completely go away.
Let me start off by saying I’m 25 and in great health before all this happened. I got the booster in October 2022. In April 2023 while, leaning back one day, I felt a shooting pain from my tail bone. I thought I just pulled a muscle. About two weeks later, I started to feel tingling and weakness in my legs in addition to back tightness and leg tightness. The weakness and tingling spread to my arms. I started to have electric shock sensations and feeling of coldness in my hands and face. I started to have headaches and dizziness as well as some vision issues.
it is now mid June and the vision has definitely improved. However, I’ve noticed the electric shock sensation comes and goes. I have weakness in my arms and legs. I’m still able to use them but it’s just a weird feeling. More recently, I’ve began to have twitching throughout my whole body. It’s very frustrating having to experience it in the face.
One doctor I spoke to was a little bit more informed on this, and mentioned all my symptoms to relate to what some people are experiencing as a result of the Covid vaccine. She told me that it’s something that takes time to go away. She said it could take 3 to 4 months to start feeling relief and with that it’ll slowly diminish. I don’t know anyone else in my life who is experiencing symptoms like this and it’s hard to tell because we are basically guinea pigs in this vaccination process. I would appreciate any insight into if you guys have had similar symptoms or how long it took for you guys to start to see improvements.
I’ve gone to the ER and many doctors so many times and they just keep on saying it’s anxiety. I know my body and I know this is not anxiety. It’s so hard to see the light at the end of the tunnel. I feel like I’m suffering every day and it’s getting worse.
Has anyone had sensations like this and has anyone experienced improvement? If so, how long did it take?
Considering yours comes and goes, hopefully it goes go over time. Have you caught covid virus? If not, please try your upmost not to catch it. Some people, including myself, get much worse from it.
Also to note: The symptoms you are experiencing can easily come from the virus. There are plenty of unvaccinated experiencing the same.
Does certain food trigger it? If so it might be more mast cell activation...