Tingling - The path to recovery

[Francy66]

I'm beginning to have problems in opening the forum and also writing is very slow. What about starting the third chapter? Coriecl, give your contribution!

[cathy54321]

Hi Robbo748,

Nice to hear from you - but sorry you are having the same reaction that we have had to endure. It has been months for many of us. Thanks for your kind words, it has been in many ways the biggest physical challenge I have ever faced.

I can't believe your doctor would respond in that way - they have no idea how demoralizing it is to not be supported when we know for sure that the flu vacc caused our problems.

We are currently posting on  Chapter 2 Tingling after the swine flu  and don't really use this forum anymore.

Please join us there for support and friendship.

Cathy

[Robbo748]

well, nice to find so many people with over active imaginations ( according to my doctor) as myself...ha ha..
once upon a time I could have been a male chauvinist pig, if that expression still exists?... after reading all these stories I have nothing but total admiration to everyone of you ladies (plus the few men!) for the hell and back journey many of you are yet to finish.... every one of you have "unrelated" symptoms according to my doctor... he refused to even look down when I placed printed evidence from this site right in front of him... surprise surprise?

so who am I? my name is Ronnie, and I live in Queensland Australia, 48-year-old male, was very happy with my quiet little life, until skin cancer decided to pay me a visit that is. Whilst in my doctor's office having the lesion surgically removed, (local anaesthetic) he commented that he does not see me that often and I have never had a flu shot, and now the swine flu jab was free, being winter here, strongly coerced me into having it before I left.... I am spiteful and suspicious of the medical community as a whole, these sworn oath is "cause no harm", yet they often seem to be very good at it.... please excuse the sarcasm, but a rheumatologist put me on a drug called Lyrica, which caused horrendous side-effects took nearly 2 years! to recover from! of course, as you all know, that was written off to a one in a million event, or I was making the whole thing up....
anyway, years later, I have had the same doctor for 21 years, he looked me in the eye and said "tell me honestly how many people do you know, who've died from a flu shot?" being a nonconfrontational kind of person, I relented, do I really, really have to say what happened next?  I received the swine flu jab in my left arm, then they wanted to give me the seasonal one in my right, however I refused, starting to become stressed that I even allowed them to give me swine flu one...these clinic people are great salespeople, stopped short of calling me a big girl!... to cut a ridiculously long story short, same as everybody, could not lift my left arm above my head day or so later, then nice improvement, but right on 10 days later, the fun really began..... if you have read this far, thank you, I have many things to say about this matter, some negative, but also some positive.. to be continued...

[cathy54321]

hey folks,

cup12 - yup, I have been dealing with the terrible headaches for almost 6 weeks...please try to take it easy. my doctor  was really specific about this when I went to see her a month ago - she was adamant. Alot of rest is needed to recoup and the headaches are so inflammatory - always bordering on migraines, that even regular activity can be overwhelming - you will get back to yourself. There is no rhyme or reason to the symptoms so pls don't be alarmed if anything comes back for a bit - these issues tend to come and go...also, these symptoms are written as side effects on the vacc leaflet - not sure why doc's are resistant to this - 1 in 10,000 will develop neuropathy. That's us! The tingle crew :)

reenie123: fill us in when you can (vacc date/medical opinion, etc)

I saw my doctor today: no problem re: her understanding of what happpened to me - she understands it as an auto immune neuropathic reaction to the flu shot. We discussed the philosophy of this shot and how the surrounding medical comunity is pro vacc even with folks who have auto immune illness and MS etc. They know that these reactions will occur, but feel it is better to have patients have the anti-bodies etc...

My opinion is not decided on this. Not sure what to think - as so many have been made so ill from the side effects. I will never be vaccinated for anything again. I began having muscle spasms in my cheek and jawline last night that woke me up...so painful...something new emerging at 6 weeks - seems hard to understand how this could go on for so long...I do know that 6 weeks post vacc and while no longer bed ridden and feeling much better, dealing with constant migraine-y/no appetite/sore eyes and eyeballs and now facial muscle spasms is getting tiresome. Enough already!

will write tomorrow,

C.

[cup12]

just got home from school.  feel absolutly horrible.  my head is pounding and im so nauseous.  maybe i over did it.  i wish i could go back to my old, energetic 23yr old self :(

[coriecl]

Reenie: let us know what your GP has to say and when you got the vaccination.

[cup12]

i also have the migraine headaches now...daily! ughh exedrine helps. hopefully were getting to the end of all this....

[cup12]

hey everyone! i am actually feeling much better today! the tingling has def gone almost completely away (hopefully im not jinxing myself).  i am left with a little prickling and some small muscle twitches but my body is def on the mend. my anxiety is way down...i only get worked up when i get my mind going! but i just keep saying TEMPORARY! u guys have def saved me sanity!! feeling a little more positive! no more flu shots for me!! :)

ps has anyone talked to their dr about any long term effects?? hope there aren't any! i'm relying on this forum for my info seeing as none of my drs will even consider this being a result of a flu shot, even tho i kno it is...i kno my own body! so glad i found you all! :)

[reenie123]

I am new here.  My hands are tingling like crazy --- I am so scared.... it feels like someone punched me in the right arm (not where I received my shot) --- I am calling my GP when he opens in 1/2 hour.  Please everyone - tell me I don't have gbs!!!!! I shouldnt have taken this stupid shot, but I have asthma - so I thought I was being wise --- biggest mistake in my life.

[cathy54321]

Hello newcomer :) While I am sorry you are here, I must tell you that you are in very good company with tons of new experts on this horrendous condition.

cup12, I had EVERY symptom you had exactly the way you explained, plus numerous other symptoms. I am 6 weeks post vacc and have been posting on Ch. 2/Path to Recov. I spent 2 days in hospital getting re-hydrated, and sick as hell, with a numb tingly body that felt like it was vibrating. Was bedridden for 5 days.My symptoms hit in the exactly the same way/exact same time as you... especially the headaches/upper back/ear pain. Same stomach issues, plus serious nausea...You are not alone - many folks on this site share the same symptoms - it is all vacc related and has been diagnosed by numerous doc's as an auto immune reaction that has affected the peripheral nerves:look up neuropathy. Also, I needed sedatives to calm a constant anxiety like feeling - it is normal to have high anxiety around this illness - your nervous system is also more sensitive...


I suggest you read all the posts from the very beginning (all three chapters) you will find them informative, comforting, helpful and a solid tool for your recovery. Lots of great suggestions, dialogue, recommendations and support when we hot rock bottom (we are all in agreement that this affliction has tested our metal in ways we didn't know could be tested)

It does get a bit confusing as we are posting between Ch.2 and Path to recovery, so just go back and check them all out - you will find it very helpful.

Let us know how you are doing - the vitamins/juices/diet suggestions were super helpful.

The best medicine by far is the people - they literally saved me and my sanity.

Take care - write back,

Cathy

[coriecl]

There you go...the neuro said not to worry and it will go away!

I didn't have that problem...both my neuro and doctor agree that it's from the vaccine.

[cup12]

Good to know! No I didn't have an emg bc all other tests were normal. He said I should not worry and is confident it will go away in time, however he does not think it was from the flu shot.

[coriecl]

gen49: Got it! thanks.
cup12: Yes, definitely temporary! or else something would have shown up on all those tests you had. My doc explained that it was an over-reaction of the immune system (to what in the vaccine we're unsure of) and it attacked the sensory nerve system, thankfully not the central nervous system. The sensory nerve system can repair/heal itself. But it does take time. I looked at the list of tests you had but it didn't say anything about a nerve conduction or an EMG test. Did you have one or both of those? If not, I would ask your neurologist if it should be considered.

[cup12]

Is everybody pretty confident that this is only temporary?? I'm worried.

[gen49]

PCP - Primary Care Physician

[coriecl]

Francy and I have both recommended sedatives to sleep through the night. It definitely helped us both; it's hard for your body to repair itself if it doesn't get enough rest.

I would definitely recommend Vitamin b12 sublingual tablet, as well as, a Vitamin B complex. My Jan 15th posting: I wrote down what my naturopathic doctor recommended to me. If you decide to do the same regime take the PM doses with dinner or else it might energize you too much to sleep. The nutrients brought my energy and mood up.

On Tingling - Chapter Two, I explain how a friend of mine had the same symptoms as us but the one neurologist she saw said she had a "virus". She tingled off and on for 10 months but it eventually went away. This was 5 years ago so don't give up hope thinking that this is permanent. It just means you need to take optimum care of yourself and seek out therapies or ways to help yourself heal. Some people are seeing acupuncturists, chiropractors, or massage therapists, others are practicing relaxation or yoga, some are seeing holistic/naturopath doctors, most are taking nutritional supplements and eating healthy diets.

Other people have mentioned bubbles or hot-spots under the skin. My friend had the same thing too. I've read that it's nerves repairing itself...which is a good thing!!! I had digestion problems in the beginning but I did force myself to eat fruit, vegetables and soup and my appetite did come back. I also read that Cathy does juicing.

I keep reading about PCPs. Can you tell me what that is? I'm assuming it's a medical doctor but I'm not familiar with the acronym.

[cup12]

So I just got back from my PCP. A complete waste of time! She just sat there and stared at me as I bawled my eyes out and told me she has never heard of such a thing. I even printed out some posts from this forum to show her to prove that others were experiencing the same thing. She told me there was nothing she could do and to go back to the neurologist and she would refund me my 20$ copay...how thoughtful.  I went to the health store and got a cal/mag supplement along with a gentle detox...hope it helps!!

[gen49]

This is the perfect venue to vent all of your feelings and frustrations because we have all been there.  Finding this forum helped me a lot.  Any time you post a message, know that someone is listening who has experienced the same or similar things. If you take time to read all of the posts, you will find it informative even though we are all different. I had to look for a new PCP as well.  The one who highly recommended I get the shot in the first place denied it was the vaccine and left the scene.

[jc77718]

cup12: I had the shot on Oct. 26th and still having twitching and tingling. It has got alot better though. Just hang in there because people have been on here for awhile and alot are completely recovered it just takes awhile. And remember everyone is different I am sure size and immune system all plays a part in this. Just to let you know there is another discussion called tingling swine flu vaccine chapter 2. If you click on my name you can click on chap. 2 and it will take you there. It has more people about where you are at with this point of the reaction. One thing that I always try to remember is the word TEMPORARY! Because this reaction is temporary. That is proven with all the people that have gotten over it. Take care, Julie

[cup12]

Thx francy. I think it may be taking me longer bc I can't seem to shake this worry/stress when I feel these symptoms.  I am going back to ny dr today. Did anyone have stomach or indigestion problems? I have NO appetite and feel like my stomach is going nuts its so loud. This could be a result of stress too, I don't know. I also have the feeling of bubbles popping under my skin now too. Great way to describe it.  

[Francy66]

I had the shot on Nov. the 9th....and yes, I'd dare say I am completely symptom-free...
Dear cup12, we all believe you and be certain that you will go back to your earlier self! This thing passes, sooner or later (different times for different peoples), but it goes away! Stay calm and never lose your your hope, you can see my case and also others.
A big hug, Francesca

[cup12]

Hi everyone, I am new to this forum. So glad I found it. You are all making me feel a little better. I too had the swine vaccine in early nov. That same night I had what I thought was a panic attack but now know I was having a reaction to the shot. About 3 days later I started tingling in my legs and it was all down hill from there. I have been to my PCP who refuses to believe this all has anything to do with the shot (I'm in the process of finding another one) and does nothing to help me. I have also been to a neurologist. I've had mris, ct scans, blood work, chest xrays, ekgs...all normal. I have started seeing a psychatrist bc my anxiety and panic over all this has almost drove me insane.I'm afraid I'm going to die.  Seeing that I was against the shot to begin with I'm really beating myself up about getting it.  My worst fear has now become a reality. I can say that the first couple weeks were the worst! I have never been through anything so awful in my life! The tingling is still there but has improved. I actually sleep through the night now (that is when I'm not worrying myself to death). I'm still twitching everywhere. I have also been getting these terrible migraine like headaches with the worst shoulder and neck pain and I feel like both my ears are aching. I also had that weird throat feeling and extreme dry mouth which has gone away. I'm sorry this is so long but I'm really at my wits end with this. I'm also a full time nursing student in my lasts semester. Trying really hard to not let this ruin everything I've worked so hard for. I just need some reassurance and hope that I will be my old self again one day. I've become so depressed and scared. I feel like I've driven my bf and fam crazy with my complaining and no one believes me. I'm only 23 and was perfectly healthy before all this. :(

[jc77718]

How wonderful to hear you are doing so much better. Are you completely syptom free? Can you please refresh my memory as to when you were vaccinated? This is so encouraging! Thanks, Jullie

[coriecl]

Francy: great to hear! and that you are singing! I am going to leave you a private message so that you can contact me if you ever would like to OR if you ever come to Vancouver, Canada ... you're probably not coming here for the winter Olympics next month I imagine?!!!
Live Live Live Well, Dear Lady!
All the best :)

[Francy66]

...you just call out my name, and you know, wherever I am, I'll come running, to see you again....Great! I even sing James Taylor now! My dear friend, I've been very busy LIVING, that's why I haven't written for so long! I see that everyone here is pretty fine, more or less, and so the name I chose for the forum is really a good one! I'm happy to say that all this tingling stuff is becoming slowly a memory for me....DON'T get vaccinated: all this advertising and pushing to get the shot is because countries have SOOOO MANY doses left behind and they don't know what to do with them! Heaps of money wasted and sqandered. They are criminals....
Please, take care and stay well, I hug you all! Bye , Francy.