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Tingling - The path to recovery
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Tingling - The path to recovery

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!
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Francy: I just found this by Recovery by accident! Sneaky girl!

Hello and welcome to the oldies and newbies from Chapter 1 and Chapter 2...glad you found us!

ROS151: if you take Alpha Lipoic Acid don't take too much - just what Dr. Weil recommends 100mg; some other doctors recommend starting at 50mg first. More is not better since it can cause insomnia (because ALA can give you more energy). So I take it in the a.m. The bottle I have recommends 600 mg spread out over the day but I've read that doses over 200 -300mg can give some people heart palpitations. More is definitely not better! Try researching first to see if it's right for you.

Thanks Sabrina for clearing up the misunderstanding.

Francy: your doctor is wise to have given your body stuff that was good for it! Yes, tests are hard on our body. I've just been learning how we have to use anti-oxidants, not just to keep us from aging (although a very good reason!) but to combat the effects of x-rays, cat scans, mri's, etc. If you have these exams, please take anti-oxidants so your body can get rid of the radiation! But maybe your doctor already knows this???

Bunch of 5: sorry you had such a bad night...we all know what those are like! I had some weird chest symptoms too a few weeks ago and my doc sent me for a heart ultrasound which was good. So he said that likely irritated nerve roots were the cause of the chest symptoms - which cleared up after a few days and hasn't returned in a few weeks. I think you are like so many of us just having to go through "working its way out of the system" like my doc said.

Farmer456: you're right what's done is done...we can't focus on regrets. Someone (can't remember who?) said that in one way it has helped her/him focus on taking better care of her/his body. Which is definitely the way I'm going!

Gen49: I definitely have not had any setbacks in the last few weeks, I have been getting better and better, almost recovery. However, I did have setbacks here and there, definitely in the first 5 weeks. Just look back over the week like Annie3161 suggests. I do have sedatives that I've used 5 times, however, as of late I've been taking liquid calcium/magnesium at dinner, and taking a herbal tincture from the naturopath for nerves and insomnia. You can also get Valerian or sleep/relax tinctures from the health store or some pharmacies. However, I have been told to always try and get liquids or powders (to be mixed in water) first; they work the fastest and absorb the best, then capsules next, the last being tablets - they don't absorb or break down quickly enough.

Running Ragged: I won't get my kids vaccinated next year because I hear that H1N1 will be part of the 3 viruses that go into making the flu vaccine. Our prime minister of Canada has not been vaccinated yet (and he is in a high risk group because of asthma). To me that speaks volumes!

Whew! I'm done writing for tonight. Unless someone has something witty for me to respond to?? I can almost here Francy trying to come up with something! Ha Ha!


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Oh, I almost forgot...I do these breathing exercises at bedtime too. They make me very relaxed. They are called alternate nostril breath; it's a yoga technique that the naturopath  recommended and gave me instructions for. I even recommended it to my doctor! You can find it on the internet too for a description and you tube has it as well.
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...well...when I asked you to give a contribution I didn't mean a novel !!! Ha-ha-ha-ha!
@gen49: I really understand your feelings when you say that these ups and downs are very discouraging. But remember that it's a short time since you received the shot (I mean, in comparison to others) and the first weeks are always hard to get through. I was vaccinated on the 9th of Nov. and only towards the middle of December I started to say that I was feeling normal again. And yet, even now, it can still happen some isolated, very short episode of tingling: for example, last night I was slouching on the sofa with my arms behind my head and all of a sudden I felt my usual right hand tingling and burning.....it lasted half an hour perhaps and then stopped. This morning my limbs feel a bit strange...but it's very cold these days, my neck and shoulder muscles are very strained and aching (that's typical of me with such a climate) and so I think that once again my nerves have been "touched" and led to an over-reaction. I fear that it will really take MONTHS to have nerves completely back to normality, because they are continually stimulated in everyday life (that's unavoidable).
I found sedatives really useful during my first weeks, otherwise you risk to go out of your head - I took some drops of DELORAZEPAM (name of the chemical principle), but only when I felt that I couldn't stand it anymore.
I have never vaccinated my children for flu and I will never do it!
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Thank You for your information.  I really miss my daily exercise routine which included treadmill (45 min.) and Pilates.  I'm afraid it is too soon to start doing something too strenuous.  This was my way to reduce stress.

Still working with the neurologist.  She herself has not been vaccinated and doesn't recommend it highly to her patients.  She felt it was probably an immune response to the vaccine.  I go for EMG's and blood work.  Initial evaluation good.
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Yes, where did all the writing come from?! I know what you mean about episodes. It's very annoying that I felt great yesterday but I must have slept too much on my right arm last night and now my arm nerves are really stirred up! My shoulders and neck ache alot too sometimes I get dizzy episodes if I move my head too quickly. Now my doc has recommended physical therapy for me. But again its irritated nerves and how they cramp and strain muscles. How arthritic I feel today! My doc said yesterday to be grateful that it wasn't my central nervous system that was irritated or damaged. And yes, I most DEFINITELY am grateful for that!! But am I asking too much to NOT have been a guinea pig for the H1N1 vaccine?

My friend that tingled for 10 months said that one of the worst things was that because she looked normal, people thought she was okay. It was frustrating for her that her husband, kids, boss, co-workers and friends expected the same level of energy that she had before the tingling. I think I'm beginning to relate to that.

gen49: you're welcome. I see that Lindac790 has been recommended by her doctor too to take amino acids.  Seems there's a lot of doctors that agree that it's helpful (inc. my own).  For me, it's easier to make a breakfast smoothie with a protein powder that has all the amino acids.

vanderw: my naturopath asked me to give up coffee and I actually didn't feel like drinking it during my worst weeks with this. I just didn't bother drinking it again after I started to feel better.

farmer456: your wife has nailed it:  "travelling arthritis"!

Have a good day, everyone!
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To everyone on the 'path',

I am so grateful for you and for finding you all. I thought I was alone. You are all heaven sent to me as this has been a real and very difficult time. I have all the same symptoms and experiences as all of you - plus extreme exhaustion and very bad general malaise. I will try to be brief with my personal vacc history, but would like to record this incase any newbies see this and are suffering as much as we have.
-vacc on Dec 11th. Noticed tingling in right hand for about 5 mins 1 hour post vacc.
-by the evening had many of the side effects mentioned on the pamphlet (aches, tired, out of it feeling)
-10PM tried to wash up dishes and while standing realized how much I was struggling to accomplish the task - then loud roaring in my ears and terrible nausea accompanied by near fainting. Immediately broke out in cold sweats, made it to the bathroom and sat there with head on sink while needle like pain burned up from my stomach to my chest in repeated waves with no break for approx. 30 mins. Cold sweats were scary and I was soaked.
-Made it to couch where I passed out sleeping/recovering while 'cold sweating' all night.
- Day 2 was like a zombie in very moderate fog. Really out off it.
-Day 3 same as Day 2
-Day 4/5/6/7/8/9/10/11/12/ - headaches, nausea, muscle pain, crushing exhaustion, legs vibrating. Told friends and family that I had not been right since the vacc.
-Dec 27th called ambulance and was admitted to hospital with numb feet/vibrating body/malaise/dizzy/off balance/ nausea (ugh so bad)/white as a ghost. Stayed in hospital and was hooked up to IV for hydration - never sicker people, I swear.
-Dec 28th - every test known to man and woman kind. 1 hour in the MRI with blue dye injected - only test result that came back was white blood cell count was elevated.
-They released me with a vague diagnosis of an auto immune (ish) reaction.
-Went to GP Dec 31st and she said same. Rest and take it easy.
-Have felt at time like I am wearing my nervous system on the outside of my skin - anyone relate to that. Horrible feeling. Quelled by Ativan, which has been a godsend during this nightmare.

I knew it was all from the vaccine, period. I have fibromyalgia, but for the most part I manage with diet and excercise. Found this site and read about vacc's and fibro flares. Was willing to believe the vacc caused a fibro flare....but yet....a niggly feeling within that knew it was more vacc related.

Then I found you :) I saw myself in each and everyone of your stories - woke my mom up and she read with me. Everything I told her and the doc's was written here, by the many posters. I am not alone.

I am so sorry that there have been those that have had very serious repercussions. It's like a nightmare that you can't wake up from.

A big thank you to everyone for speaking out about this and sharing your story - I don't know what I would have done without you. You have helped me get through a very difficult time and for that, I am so deeply greatful. I wish I could hug all of you in person!

I am located in Montreal - anyone out there close to me?

Cathy
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So how are you doing right now?   Do you feel you are making progress? I also have fibromyalgia  as well as another autoimmune diagnosis. And for this reason was strongly recommended I get the vaccine.  Received it 12/19.  I live in western New York right on the Canadian border.   My saga unfolded over the holidays and the timing made a bad situation worse.  If I hadn't found this website right at New Year's, I'd probably be institutionalized by now!
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Hi gen49,

Nice to hear from you - I have followed your posts and much of what you have written was very comforting and helpful - again a very big thank you for all the help and support I found here. Agree - the best thing about this ordeal is this group - without a doubt!  I know the feeling of the relief of finding this website - I read every post like my life depended on it - so reassuring.

I would say that at almost 1 month post vacc - I am hoping to have been through the worst and the numbness in my foot is less, though still there. I have begun taking very short walks, eating a bit more, able to do laundry, walk the 3 flights of stairs to my apt. etc. Considering I was bedridden for over 4 days, I do see the overall progress, slowly (like so many others here). It seems for me the neuro problems were the worst - THE WORST! So scary. The reason why I couldn't totally accept the fibro flare theory was that I have never had so many pronounced neuro issues - and numbness/tingling/nervous system glitches...however it seems the fibro did kick in a bit...the fibro posts that associate flares with vaccs were helpful and informative - they do mention numbness with fibro, which was new to me - but when I was directed to this site - wow. What I had known all along (that I was having a strong reaction to the vac itself) was confirmed. In my heart I knew that my decline into ill health was due to getting the H1N1 jab. (My daughter calls it the 'Hi Knee' or Hiney, however you would like to pronounce it:) We have been calling my saga the 'Hiney aftermath' and I also was hit the hardest just after the holidays (Dec 27th) The whole thing is a blur actually.

I have a few things of note that I would like to add:
- I have regrets, yes.  But I also know that I wouldn't want to get this flu - and I wouldn't want to pass it on to anyone else either - I got the vacc based on the fact that I live in Montreal, travel by public transport, my daughter is in high school, and I could never live with myself if I ever passed a mild case on to a pregnant woman or vulnerable person and they were overwhelmed by it. I did this as much for myself as others - so no regrets there. We should be proud of ourselves despite the huge and terrifying downside we all experienced.
-I agree about moving forward and using this site for support while we take 3 steps forward, 1 step back. Also, loved the comments about being gentle with oursleves, moving forward, and the path to recovery. These are helpful and so supportive, huh?
-The medical feedback has been invaluable to me - great to read the common notion that this is a reaction to the vacc...
-I feel the gov, medical community and big pharma's need to know about what we have gone through - in my case every doctor I met listened, understood, but on some levels I felt there was a resistance to get behind the vacc theory. Why I don't know. Why should this be so hard to put together? _Very frustrating_ A normally very heathy person begins to have serious health issues almost directly after the vacc...seems pretty obvious to me.

Lastly, my heart breaks for the miscarriages. I can't even imagine. Equally, having to work and look after small children is unimaginable for me in this state.

I will keep posting and have all of you in my thoughts.

Cathy
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Cathy,

I also have fibromyalgia which is managed without meds.  I have been of steroids for a year now thank goodnesss.  Had I thought to call my Rhuematologist I would have found out that his office was advising not to get the vaccine because of this reaction which I of course found out when I went in after the symptons started.  I ask him if it was a fibro flare as well and he said that it was not and had all to do with the shot.  It was so great to go in and have a doc stand behind me and believe that it was the vaccine.

I hope you are doing better and continue to improve every day.  I am 4 weeks post and doing much better.  The first week I was pretty much bed ridden and could not take care of my 4 year old.
Chrisi
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Hi Chrisi,

Wow. Your rhuemy makes so much sense. I can't believe so many of us have had this shot, who probably shouldn't have. It just doesn't seem fibro - y at all. But, rather, a really bad reaction to this vacc.

I am so happy and relieved to hear that your doc had the good sense to stand behind you. In a way, it helps all of us so much too :)

Not a great day for me to day, but not as terrible as I have been - when you feel better for a few days and then bad again, it makes it hard to be positive - so I am forcing myself :) Tomorrow will be better!

G'nite and thanks to all.

Cathy
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Your comments were so very accurate and exactly as I assessed my own situation.  I also did not accept the opinion of my primary care doctor that this was a flare of my autoimmune problems.  I knew it was an immune reaction from the vaccine.

I have been dealing with my autoimmune issues for almost twenty years and they have been relatively stabile  I also agree that maybe just a few old familiar symptoms did kick in since this was an immune response. But as you said, there were too many things that were not at all typical or to be expected.

When I finally did get to talk to my primary care physician (Dec. 28)  - this was after one trip to the immediate care clinic and one trip to the hospital emergency room -    he instructed me to contact my rheumatologist since as he said," there is nothing I can do for you."  In my opinion, he should have been the one making calls for me and asking questions and making referrals.

Needless to say, I have already been in search of a new primary.  And my rheumatologist was on vacation.  But his office was very poorly informed anyway.
And as I said in a previous post, I suddenly became my own advocate.

The only two individuals I met who agreed with my thinking was a physician assistant in the emergency room (Dec. 26th) who actually had some knowledge of this transient neurological syndrome and the neurologist I am now working with who did not get vaccinated herself and doesn't highly recommend it to her patients

Remember, we are all just a statistic to the medical community.  We are in the uncommon group  Just collateral damage of sorts to the manufacturer.  So instead of viewing our status relative to the vaccine as very possible, they look at as not probable.  For certain, we are not all wrong.  And we know our own bodies.

You may already know that as a Canadian you can report your symptoms to the "Canadians for Health Freedom" website.  I still haven't decided the best place for me to file a report on this side of the border, but I certainly will.  As others have said, people need to make informed choices.

I know that I wouldn't get vaccinated again in the future. ( I would be scared to.)  But that doesn't necessarily mean that I believe that it isn't right for anyone.  What some people are thinking on this side of the border is that this vaccine came about very hastily and was not properly tested and consequently they don't trust it.  Our government isn't always free flowing with all of the facts even though they may not actually lie.

Lets all concentrate on how to get well and thank those on this website who have already experienced all the tribulations of doing just that.  It has been some of the best medicine by far to hear their stories.  



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If you haven't done so recently, go back and check out Chapter 2. There's a new and exciting post there from surfnsand247 (the original creator of this "tingling" forum).
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Hi Ashley! Great to hear from you! I'm so happy to read that everything went well with the baby!! Perhaps you don't know because you haven't read the previous posts, but you have been very lucky: here in Italy a person I know was vaccinated at the 8th month, she immediately developed the tingling and all the rest and she eventually lost her baby...who was perfectly sane before the shot...I have always thought that you early water-breaking had something to do with the vaccine, but thank God your Levi is safe! You are absolutely right when you say that, since you focus your attention on someone else, you don't notice your health problems as you did before. I, too, feel fine now, with the exception of some occasional short episodes, but I don't mind anymore.
A kiss to you and the baby, bye!
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Funny that a lot of people posting seem to already have an auto-immune disease I was recently diagnosed with Coeliac disease which is another one,perhaps this made us more prone to have a reaction than others.
I would recommend taking something for anxiety/pain as at I did not take the tablets given to me due to the list of side effects sounding horrific ,when I couldn't take much more I took the tablets and slept for the fist time in 7 days.I live in the uk but here it is called Amiriptyline I took 2x 10mg a night,it blocks the pain signals and also is a muscle relaxant.I am now on 1 tablet a night and anti-inflammatories.(can't spell that)! I am gradually reducing the dose but it helped me turn the corner.
congratulations on the birth of baby Levi - good things can still happen.
Keep strong.

Annie
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Some people lately have been posting that they have previous auto-immune issues...and others don't, inc.myself.  I just don't want that to stand out as to why we all have had reactions to the flu vaccine(s).

To my way of thinking, I wonder why a doctor would recommend a patient get a vaccine if they have auto-immune issues...wouldn't that place them at risk for more immune system issues? Wouldn't it be safer to recommend frequent hand-washing, staying away from crowds as much as possible, and an immune system enhancing diet and supplements? Just thinking out loud.



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Hi,
I also do not have a previous auto-immune disease.   I actually was doing very well until I had the shot; just had a physical 1 week before receiving the shot.
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Hi Tingle Folk,

Yesterday not so good - setbacks really suck. Better today at just about 1 month post vacc. As most of you know from previous posts, my reaction was pretty intense and involved being hospitalized mostly due to systemic/neuro stuff - all tests fine. My tingly symptoms were more vibrating/electricity feeling in my legs, numbness on sides and bottom of feet and weakness and major inner shakiness throughout my body - although if I put my hands out for the shake test they were steady as a surgeon's :) I also had funny vision (not blurred) but fuzzy and I had trouble focusing. I could go on.....:)

That has abatted somewhat but small setbacks are happening followed by good periods, so that's great news. Here are the things that have really helped me - these may help you too:

- Getting out and breathing fresh air and just being outside is really nice (without overdoing it) I find winter birds particularly cheery :) and being near trees.
-Sea salt baths in pretty hot water - if you have had the dizzies, make sure that someone is near by or don't stay in too long.
-Carrot juice (as fresh as possible) a couple of times a day
-A really fuzzy pair of slippers that pad the numbness
-Very comfortable soft clothes that are not irritating on tingly skin (I use alot of polar fleece)
-Sleep with a super soft polar fleece blanky (for security and softness purposes)
-Natural herbal teas - I have one that I found at the healthfood store that is specifically targetted for the Nervous System - smells gross but tastes OK
-Protein bars from the health food store - especially if you can't eat alot
-As much sleep as you can muster - and a mental attitude of allowing your body to heal - don't push yourself even if you look 'fine' - there is plenty of time for you to be a 'go getter' when all is healed.

What are your tips? I would love to confer!

Take care, will write again soon.

Cathy

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There are loads of people with underlying issues both autoimmune and otherwise who do not have any reaction to vaccines.  I personally have had the seasonal flu shot at least eight years running (including this season) without incident.  It all comes down to the same idea of risk vs. benefit as it does for any individual.

What we were trying to say is that this H1N1 vaccine was very different for some reason. And despite any previous diagnosis, we did not believe you could explain the side effects we are experiencing on that basis.

The medical community is always looking for a quick explanation so as not to give vaccines bad publicity.

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What I forgot to add is that if you really follow the story line that has unfolded here about this vaccine, it has affected such a diverse group of people - women, men, pregnant women, people of varying ages, those who got the vaccine with preservative vs. without, those with autoimmune issues, most without, people worldwide and people who have never had a reaction of any kind before.

Despite all of this, there is such a common denominator for symptoms.  Despite who you are or where you come from, or what your story is, you ended up with the same problems everyone else did with a few exceptions with tingling as the common thread in these three chapters of the forum.
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Yup - you summed that up perfectly in 2 short paragraph's gen49. Totally. Very well put.
Really puts 'We're all in this together.' in a whole new light...

Tonite I am dealing with muscle twitches and cramping like crazy in hands and feet - painful and annoying, feet feel like they are asleep...argh!

How is everyone managing? How are you keeping up with normal life? Cooking, cleaning, laundry, groceries?

Cathy
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Francy: how are you doing with chlorella? I remember trying to take it years ago and my stomach felt sick.

Cathy: it's taken 2 months to really start feeling like myself. Every week brings more strength, more stamina, and gradual elimination of symptoms. Some of my symptoms may be due to the spinal tap I had too. My doctor said that likely it irritated some nerves when the needle went in so it might take me longer to heal.

Julie: the tingling has stopped in some areas because those nerves aren't irritated anymore. Where you're tingling now (or still) are the nerves that are still irritated. You had the nerve test and you didn't have damaged nerves (yay!), but those irritated nerves need to heal and that takes time. Keep trying with your nerve supplements and other supplements and therapies that others have suggested...some will work for you others might not. Experiment but it generally takes 2 - 3 weeks min. to see any benefits...and it's usually gradual. Don't get down on yourself... if you aren't already take lots of vitamin B, calcium/magnesium, omega 3 oil to help with symptoms and mood.

Well, the weekend is here...ahh! I long for the days when it really meant freedom and carefree!


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*** Hi, I am new just realized that there's a part 3 :) so I am  reposting from the first page***

I received h1n1 vaccine and had severe jabbing pain in my thighs day after, kept getting pain for couple of days that felt like sharp needles deep within muscles. I waited, and it got better after 5 days but then on 8th day after shot I started to get muscle spasms all over arms and legs. I was so scared, I was all over the internet researching, thought I had that GBS, freaked and called my doctor immediately. I was told that my  symptoms were not likely to be GBS because I had reflexes and had no problems with acitivity or weakness. He thought it could be possible that it was related to a reaction from shot, but really couldn't give a clear answer. I received a vit B12 shot and have been taking some at home. My symptoms are better after almost 3 weeks now, (I think... scared to say that because I know it could come back).
I am so glad I found this board, I have been sooo depressed and scared about this. It's a little reassuring to know that I am not the only one on one hand, but also scary to think how many side effects this vaccine has. I have always been an advocate of getting flu shots, and trying to boost my immune system to prevent disease, but now I feel that I made a terrible mistake with this vaccine. I would not reccomend it to anybody. I have become very paranoid and disturbed, and maybe it's my paranoia speaking but I believe that there are toxins in the vaccine. Maybe because of the timely demand for the flu, appropriate studies were not done accurately or possibly some of these companies were reporting semi-false info just to get vaccine out in hurry or for other motives..who knows.  What I do know is that nerves do take a long time to heal, so I hope that is why this is taking so long to go away...I hope. Good luck to everyone. I will keep you posted.
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Hi Everyone,

Welcome beautyaroundme, I am sure you will find this a wonderful support network, as I (and so many others) have found it to be. I am so grateful to have a resource like this one - it has helped manage my fears and helped resolve that niggly feeling that no matter what the doc's say - I know myself and I had not been right since my shot on Dec 11th - I am now 1 month post vacc and still experience the fall out, although it has gotten way better than 2 weeks ago.

I also have had many of the same thought processes you have, it's really hard to deal with, but if you keep telling yourself that it is a reaction of the sensory nerves caused by some type of immune reaction from the vacc - and not a more serious disease- that should help.

coriecl: Thanks for your note on recovery time - I had figured ot would take asmuch as that - slow and steady...

I still have lots of concerns and feel tired and just 'not well' /low energy and just 'affected' - am a loner on this? Has anyone felt sick in a really ungeneralized way?

Cathy
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What nutritional therapies or other therapies are you doing?
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I don't know what to say about Chlorella....I should take lots of these small pills during the day but I often forget...In the past few days I have also suffered from a strange headache, I fear it can be a possible side effect. Anyway, apart from this, I feel fine and  I am very happy to be alive, healthy and much more relaxed than I was even before having the shot; surely this experience has taught me something about life !
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Hello! I take that back...it was spirulina that made my stomach sick, not chlorella. However, I just realized the other day that my vitamin/mineral powder has both chlorella and spirulina in it. It hasn't bothered me either.

I read that chlorella can mobilize mercury from the brain...maybe that's why you are having a headache. Make sure to drink lots of fluids and fibre to flush your system. In another month, my naturopathic doctor is going to test me for mercury and other metals. She wants to make sure my system can handle a more serious detox, if I show high for metals.

Yes, I know about the sudden epiphany of life. My medical doctor recommended I read some books "Turning the Mind into an Ally" and the "Healing Power of the Mind". He said it helped him after a car accident. I just borrowed them from the library and have just started to read.

I have an annoying yeast infection now. Not too bad, just annoying. I read that mercury can cause yeast infections, as well as, antibiotics - which I'm not taking. I'm trying to take natural supplements for that too but it just seemed to bring my tingling back more so now I'm not sure what to do. Take the supplements to get rid of it or stop until I'm more better???
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Thank you for the suggestions on reading material.  I have been looking for something along these lines.  And my mind has been anything but an ally recently.  Another book that helped me in the past through a difficult time is a Dale Carnegie book "How to stop worrying and start living." One of my favorite sayings has always been that worrying is wasted energy.  Taking my own advice has proven to be difficult recently.  I do have to work on getting my mind in the right place.  I am also a big fan of some of Dr. Weil's philosophy.  I like how he makes a crossover between conventional medicine and more natural remedies.
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Hey ladies - strange question.

have any of you noticed symptons being worse during your cycle week ?  I have not felt ice water in my vains in 2 weeks and now it's TIME and that's back as well.  Just an observation.
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Hi - that would make sense. PMS and my cycle caused me to not feel so great again - just finnished and am hoping that I will feel better. Hoping :)

Cathy
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Hi everyone!, i posted this on the old forum i wasnt aware there were 3 parts :) well here os my story. I received the h1n1 vaccine on Jan 7 around 1pm, after coming home 30 min later my right feet was numb I shook it off and it was gone but like 3 or 4 hrs later I felt palpitations on my left thigh (I got the shot on the left arm) so I thought ok I guess is normal I’m not feeling any kind of pain in my arm so I guess my thigh was doing all the work. On my 2nd day I woke up with a horrible pain on my right leg I got out of bed walk and and it went away, I didn’t have any palpitation feeling on my thigh anymore,  but on the second day the tingling sensation had  started; feet, toes, lips mouth, everywhere!! So I decided to hit the internet  and after readrying some post here I realize i was not alone with this. Of course I was freaked out about GBS, and still am a bit, but I guess anxiety is playing a big part in this. I’m always worrying about stupid little things on my everyday life and off course is making it worst, so on my 3rd day with the tingles on my feet. Toes and lips and again woke up with pain in my leg, I had a muscle relaxer which my doc had prescribe me and I will give it a few days to c how I do, if not I will head to the doc’s office by the end of the week. So happy a lot of people here are doing better. Yesterday was my 4th day with the thingles everywhere and driving me into the Verge of craziness! also my knee started to hurt soo bad i had to be in bed almost all day. Going on my 5th day today and i Haven’t Sleep a bit i;ll keep everyone updated and thanks everyone for listening.
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Hi Jeiqu7: Sorry to hear that you're going through this.  Don't let your anxiety get the best of you.  Keep reading these posts to reassure yourself that this is temporary!  All of your symptoms are the same as we've all had.  The first few weeks will be the worst, but you will get better.   As you'll notice in the other posts, sleep will help you to recover faster.  I was given Ativan and never took it, but looking back I believe that I should have (for sleep and anxiety).  It was 2-3 weeks of virtually no sleep for me and it really wore me down.  I also found that the nights were the worst, so if you can take something to make you sleep, it's probably a good idea.   Keep us posted!
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You should definitely see a doctor, especially if you're not sleeping - some of us have benefited from taking a mild sedative to sleep in the early days. As well, they may want to test your blood, etc. Plus, you should ask your doctor to report this to the CDC (I'm assuming you are in the U.S.?). If not, report it yourself. I know they are alot of postings on the three forums but if you read them they will give you an idea of how people have used nutritional and alternative therapies, and how people have progressed through this.

ALL: I think we are going to see more people on this forum since I heard Obama in the U.S. declare "vaccination week". Plus, here in Canada they have started up the TV ads again. And of course we keep hearing that there have been "no serious side effects".  I guess what happened to us, or the fact people have died or been paralyzed isn't serious. I sure would like to know what the **** they call serious then????

I saw someone I know yesterday while grocery shopping. I explained to her what happened to me. Right after she said, like she NEVER EVEN HEARD ME, she tells me that she's planning on vaccinating her family. I guess I looked shocked because she quickly came back with "oh, what happened to you was rare and I've never had a problem with a flu shot". Well, I never had a problem with flu shots before either!  I just had to shake my head. Sad :(
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So sorry to hear about your post vaccine experience.  If you take the time to read the posts in all three parts of this forum, it will help put some things in perspective.  You were given good advice by lindac790 and coriecl.

Unfortunately, I didn't find this forum soon enough and went through a lot of unnecessary and irrelevant testing from people who were poorly informed or would not get themselves to believe my problems were as a result of the vaccine.  So be prepared for the fact that you'll encounter people in the medical community who will want to pin the cause on anything but the vaccine.

I am 3-1/2 weeks post vaccine and just starting to sleep a little better.  And keeping the anxiety level down is a real challenge.  Get informed, be patient and take one day at a time.  Keep us all posted.  We are all willing to listen.
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Lindac790: how are you doing? are you still having symptoms?
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Thanks for asking!  I am doing so much better.  I think the turning point for me was when I had some time off work at Christmas and was able to sleep and relax.  The tingling is pretty much gone except for the very odd time in my face, mostly after being out in the cold.   My muscles have stopped aching, so I think it's time to get back on the treadmill and try to regain some muscle strength.  This Friday will be 8 weeks since I got the shot.  
How about you?  That's crazy about your friend still planning on vaccinating her family after hearing all you've been through.  Hopefully she doesn't regret her decision.  I am from Ontario, Canada and it seems that about 30% of the population have been vaccinated.  Many of the people I talk to are opting not to get it, but the government is really pushing it with TV commercials and ads all over the place.  Every time I see one, it makes me so mad when they say it's safe.
I hope all is well with you.
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Great to hear that you're doing so much better. I live in Canada too on the Westcoast so I hear those annoying ads too. I couldn't believe the full page ads in the newspapers though...blew me away! Do they bother to mention if you have a reaction you're on your own? There is absolutely no compensation in Canada if you're permanently injured by vaccines. Shameful.  

I started doing more physical stuff in the last few days and noticed that I had more tingling and muscle aches. Very annoyed by that! Very frustrating.

BTW: she's not a friend, but an acquaintance. If someone told me what they went through with a vaccine, I would have been freaked and NOT had it!

RO1939: wondering how you're doing too? Did you go back to the doctor?
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Hello everyone,
Finally feeling more like myself.  I am sleeping much better and I have not been taking any meds for about a week and a half.  It's been since 11/13 since I have had the shot.  I hope everyone is feeling better as the days go by.  Take care.
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What part of Ontario are you from?  We are right here on the border in western New York.  We have the same big push for the vaccine here.  And yes, if there is a problem you are on your own.  There are billboards all over town hinting that a third wave of the virus is coming  So get vaccinated.  Nothing negative is ever heard in the local media.  Glad to hear you feel like you are improving.  I'm just about 4 weeks into this, so I have a ways to go.  Your experiences are a source of comfort for me.
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I am from Oshawa, Ontario, which is about 45 minutes east of Toronto.  My friends and I have enjoyed shopping in Buffalo/Amherst many times and our hubands have attended many Bills games.  
It seems that another common denominator of our situation is that no matter what country we are from, our medical communities in most cases, don't have many answers for us and the media has not informed people of the dangers of this shot.  It's so frustrating on many levels.  
I hope you are feeling better at the 4 week point.  During that period of time, I found that I had good days and bad ones and there seemed to be no rhyme or reason to it.  It's hard to be patient when you just want to feel like yourself again, but do take comfort in the fact that this is only temporary.  I took a long walk yesterday, and feel some muscle pain today, but I guess that's to be expected after me being a "couch potato" for so long.   The only other thing that seems to still occasionally come and go is the weird ear block feeling.  Oh well, this too shall pass.
Take care of yourself!
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You are correct about the 4 week point being up and down.  But at least there is a little "quiet" time in between which is so refreshing and reminiscent of what things were like before all of this.  I also get the "ear block" feeling along with the weird sensation in the throat that others have spoken about.  It seems to stick with me on and off where others have said it just lasted a short time.  And they are both so annoying and sometimes painful. (Pain goes into the muscles of the neck.)  That part almost acts like a fibromyalgia of sorts.  At times I wonder if there is something in my ears or throat but I know that is not the case.  It can also seemingly involve the joints in front the ears.

Saw the neurologist today and all reports were good.  She did want me to up my Vitamin B12 since I was right near the lower limit of normal.  When I asked her about exercise (I'm tired of being a "couch potato" as well), she made it sound like the sky was the limit.  Like I could go out and run a marathon.  (I'll take a leisurely run to the Falls.)  Yeah, right!  It's not going to happen exactly that way.  It's going to be a gradual process even though I was a regular at exercise.  That's one example of how misunderstood this all can be.

This is Bills country as well as the home of the Sabres.  We have a lot of Canadian fans come over for the games.    We pass over the border numerous times to get together with our Canadian friends or just enjoy some of the happenings ourselves. Of course, now you have to carry a passport or get a Nexxus pass.  In my family, we were summer Canadians for years, spending the entire summer at the beaches and loving it!  We would commute into town for workdays.  Some of the best days of my life!  We always welcome shoppers from north of the border.

The U. S. government tries to insulate themselves as well from any problems arising from these vaccines.  That part is the same on both sides of the border.
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Glad to hear your reports all came back looking good.  You're so right about this being misunderstood.  The doctors really don't get how bad we've all felt.  Funny thing about the B12, mine was  low as well.  I didn't realize it until they did the blood work after the shot.   It sounds like a lot of us had low B12.  I also have very low Vitamin D, which I was unaware of.  It makes you wonder if any of these deficiencies have contributed to our bad reaction to the shot.  I guess I am always looking for answers as to why this happened to otherwise healthy individuals.  We'll probably never know for sure.

  
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Glad all tests are normal (this is the most important thing) and slowly we see improvement as a group. I am at the 4 week mark and I know I have a ways to go, but I know that others are here for me as they have passed through this awful time.

Peaceful sleep all,

Cathy
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six weeks in still with relapses but I now have periods where I feel normal.The pain in the joints is there but not all of the time and the muscle cramps is now a feeling of tightness in my legs.I have found myself sleeping a lot to catch up from the lack of sleep.I think vitamins especially B12 are a very good idea I already take them due to a defficiancy.

Here in the UK they are now playing down the threat from Swine Flu as new cases have dropped right down, although the government are still looking to vaccinate the under 5's!

Take care
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Glad to hear you are feeling better. I can't wait to feel normal again!!!

A question about B12 and D - what are the dosages? What is a good range if I want to incorporate into my diet?

Thanks,

Cathy
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Cathy: maybe I can answer that. My naturopathic doctor has advised me to take:

B12 sublingual tabs (the ones you put under your tongue) 1 - 1000mcg AM and PM
B complex capsules 1 -100mg AM and PM
Liquid Calcium/Magnesium - 1 TBSP AM and PM
Good multivitamin/multimineral ( I use a powder that I mix into a breakfast shake) - once daily
Vit C - 1000mg AM and PM
Protein Powder OR Amino Acid Complex (I use a good protein powder that I mix with the vitamin powder into a breakfast shake) - once daily
Probiotic capsules or chewable tablets - 1 AM and PM
Omega 3 oil ( with Vit D in it) - 1/2 tsp AM and PM
Vit D - 1000 mg AM and PM
Circumin - I was taking circumin but I ran out and haven't bothered to get anymore

She has me spreading the doses out during the day because our body can only absorb so much at a time. All of these have an effect on our nerves, circulation, brain, etc. in different ways.  She has told me to stay on this a minimum of 3 months even if I am better before that time. And to definitely continue after that until I am.

PLUS, I have added 50 mg of alpha lipoic acid (ALA) once daily based on Dr. Weil's recommendation. He actually recommends 100 mg but I've heard that ALA can give some people heart palpitations...and I don't want that! I've had no problem with the 50 mg. ALA is used as treatment for tingling (peripheral neuropathies).

Now this is interesting to me: my symptoms have lessened in the last 3 days. Yesterday  
I had NO symptoms but it came back mildly today. I have a natural healer friend that recommended I take Opti MSM 1000mg once daily. Well, I did one day a few weeks back but I started tingling more the next day so I stopped it.

Just recently I read that Opti MSM (which is usually inc. in joint pain formulas along with glucosamine and chondroitin) is excellent for healing injuries. It's a derivative of DSMO; which has been used to treat patients with spinal cord injuries. So I thought I would give it a go again I'm on day 4. It apparently takes 2 - 21 days to work.  I'm not sure if that's why I had no symptoms yesterday or that it's been milder today. However, if anyone else wants to give it a go, let me know what your results are.

Yes, I'm very busy taking supplements! My esthetician friend saw what I was taking and started to laugh that I've probably quit aging now!! Well, there is a happy thought out of all of this!






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Very informative and interesting. I have all of those vitamins and the proper amounts but I was only doing that once a day - I will try at night as well. Also need to find the liquid versions.

Thanks very much - will post tomorrow. Everyone sleep well et fait de beaux reves (sweet dreams in French :)

G'nite!
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Haalloo, Francy?
Haven't heard from you in a bit!
Still doing okay?
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To annie.....
Hey, also I live in Germany, we also have a house in england....I was born there....I am surprised that it has affected someone in the UK..where abouts do you live? I am near gatwick airport....I get angry each time I hear the adverts to vaccinate under 5 year olds...
Take care
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...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.
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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 :)
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How wonderful to hear you are doing so much better. Are you completely syptom (symptom) free? Can you please refresh my memory as to when you were vaccinated? This is so encouraging! Thanks, Jullie
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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. :(
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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
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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.  
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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
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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.
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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!!
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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.
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PCP - Primary Care Physician
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Is everybody pretty confident that this is only temporary?? I'm worried.
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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.
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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.
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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.
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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
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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.
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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! :)
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i also have the migraine headaches now...daily! ughh exedrine helps. hopefully were getting to the end of all this....
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Reenie: let us know what your GP has to say and when you got the vaccination.
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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 :(
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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.
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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...
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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
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