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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!
72 Responses
Avatar universal
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!


Avatar universal
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.
Avatar universal
...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!
Avatar universal
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.
Avatar universal
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!
Avatar universal
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
Avatar universal
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!
Avatar universal
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
Avatar universal
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
Avatar universal

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
Avatar universal
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.  



Avatar universal
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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