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Old 10-16-2014, 08:34 AM #11
H1N1Guy H1N1Guy is offline
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Originally Posted by Posada View Post
I don't know how to use this site. I do look at it regularly for answers. The high dose Fluzone I received in September 2012 has taken my life away from me. I burn every day. The pain is exactly how it was when it started 10 days after the vaccine was administered. I burn in my face arm and legs.it feels like I am on fire. I too have done lots of research and all kinds of natural remedies and conventional medicine. I have had every test imaginable None of the treatments have worked. Now the latest suggestion has been the use of opiates. I have seen many neurologists. The latest one at the Cleveland Clinic and her answer was that I have to consider this condition as the new me. I have more to tell keep in touch. I am not ready to give into opiates
While your vaccine was almost certainly the cause, I would have to ask what your diet is like. I suspect that the neuropathies related to the vaccines are autoimmune in nature, and with that being said I believe that when we have a diet that creates inflammation in the body it is causing our bodies to fight two wars at once.

You could take a look at all the supplements that I use to fight this under the post "idiopathic" small fiber neuropathy. Maybe some of them could help. I esp love the product Natural Care Nerve Fix. This works well for me in Tandem with neuropathy.

In terms of opiates you could consider Kratom, that is while it is still available. Kratom is not an opiates in and of itself but does act on the MU receptors and is, I believe, a much safer alternative. That's probably why the FDA is going after it so hard. And if anyone still believes the FDA has your best interests at heart, please watch the movie Dallas Buyer's Club.

Have you tried IVIG, steroids, or plasmapharesis yet? Apparently this is the playbook for autoimmune neuropathies. I am considering going this route myself.

I hope many others who have been vaccine injured will come forward on here and tell their stories.

My best advice for anyone is to not wait for the person in the white coat to save you. Take to the internet and this forum and apply the things you believe will help.

Now I have to get out of bed and I feel like someone has my feet in a vice. Time to go take about 25 pills and hope for a good day!
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Old 10-16-2014, 12:06 PM #12
zkrp01 zkrp01 is offline
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Originally Posted by Posada View Post
I am now having Robotic Laser Therapy. So far no change. I am doing a lot of praying as it's difficult to go on living day after day like this.
I could not be still, bed to chair, stand until too tired,back to chair,etc. I am saying I felt like a rat trapped in a corner and someone was poking at me with a stick. I folded and took the medication and life became more tolerable. Yes its a relationship, but you are not crushing,cooking and shooting the stuff! The Dr. is not going to keep you "high" all the time, they have it down to a science. Depression mixed w/anger was my state and my Dr. TOLD me to take one every six hrs. w/ 2 per day max. I hope you find a way to cope that you can live with. I can now forget to take my pain med and not miss it for about 3 hrs. Not much to smile about but it's better than a poke in the eye w/ a sharp stick. Good Luck, Ken in Texas
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Old 10-16-2014, 09:03 PM #13
hopeful hopeful is offline
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Originally Posted by zkrp01 View Post
I could not be still, bed to chair, stand until too tired,back to chair,etc. I am saying I felt like a rat trapped in a corner and someone was poking at me with a stick. I folded and took the medication and life became more tolerable. Yes its a relationship, but you are not crushing,cooking and shooting the stuff! The Dr. is not going to keep you "high" all the time, they have it down to a science. Depression mixed w/anger was my state and my Dr. TOLD me to take one every six hrs. w/ 2 per day max. I hope you find a way to cope that you can live with. I can now forget to take my pain med and not miss it for about 3 hrs. Not much to smile about but it's better than a poke in the eye w/ a sharp stick. Good Luck, Ken in Texas
I have to agree with you. We all have to try many avenues and see what works for us. I avoid opiates like the plague until this last flare. It was the only thing that got me though it. I have gotten down to one a day now. I just started Elavil and I'm hoping it works so I can stop the opiates.

I will use them again if needed. I couldn't stand being stuck in bed in pain all day,
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Old 01-30-2015, 11:35 AM #14
mvalen mvalen is offline
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Chat Undiagnosed

Went to mayo clinic in dec 2014, with cunsultative medicine who schedule me with many specialties, what they found was h-pylori and hashimotos thyroiditis. I have neurapthic pain that begin 10 days after flu vaccine. I had a punch biopsy done that was completely normal and emg/ncv test normal. The only abnormality was on the autonomic table tilt test which showed oscillations in blood pressure and proximal leg with sudomotor. Distal leg normal and arm normal. I have improve from a pain schedule of 10 to like a 3. I also have flushing to chest/neck/ upper arms/palms that come and go worsening with higher temperatures. I am post menopause. So they dont think its related to menopause since durning perimenopause and menopause i didnt suffer from hot flashes and flushing until now. Any suggestions
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Old 01-30-2015, 12:18 PM #15
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Flushing can come from SSRI type drugs often used for pain management.

Also some blood pressure drugs may cause flushing.

People with food intolerances may flush after eating something with either high histamine content, or something they are intolerant of.

Some pain opiates release serotonin, and cause flushing.Like Oxycodone.
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Old 01-30-2015, 02:09 PM #16
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Welcome mvalen.
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Old 03-17-2015, 02:52 PM #17
tarheel15 tarheel15 is offline
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Hi everyone.. it's been a while since I've been on the forum. I did several rounds of IVIG over the past year with mixed results. I have lots of burning still - all over the body which waxes and wanes. Has anyone found relief with supplements? I find that I can't tolerate most supplements or meds due to GI side effects or insomnia. I am already dealing with lots of fatigue and sleep issues. Other new symptoms are severe heat intolerance - anything that gets my heartrate up with cause a burning prickly sensation all over my body. I have to stay in cool environments. I can't do hardly any physical activity. I also have lots of food sensitivities and IBS symptoms. I have been doing gluten and dairy free for almost 1 year now.

I also get frustrated b/c this all started after a flu vaccine in Oct 2012. I wish I never took it. Life has never been the same since - I am 34.
Thanks for listening.
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Old 04-16-2015, 10:14 AM #18
Posada Posada is offline
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Frown Vaccine High dose flu zone I shave same symptoms as you and have tried everything

Quote:
Originally Posted by tarheel15 View Post
Hi everyone.. it's been a while since I've been on the forum. I did several rounds of IVIG over the past year with mixed results. I have lots of burning still - all over the body which waxes and wanes. Has anyone found relief with supplements? I find that I can't tolerate most supplements or meds due to GI side effects or insomnia. I am already dealing with lots of fatigue and sleep issues. Other new symptoms are severe heat intolerance - anything that gets my heartrate up with cause a burning prickly sensation all over my body. I have to stay in cool environments. I can't do hardly any physical activity. I also have lots of food sensitivities and IBS symptoms. I have been doing gluten and dairy free for almost 1 year now.

I also get frustrated b/c this all started after a flu vaccine in Oct 2012. I wish I never took it. Life has never been the same since - I am 34.
Thanks for listening.
I am 78 now and wondering if you are having any success
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Old 04-30-2015, 11:17 AM #19
Albertakewl Albertakewl is offline
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Any of you have twitching and jerking to go with it?
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Old 04-30-2015, 11:57 AM #20
Posada Posada is offline
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Frown Post Flu vaccine

No twitching or jerking. No muscle involvement. Sensory feeling of burning.
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