Post-Flu Vaccine Neuropathy (Possible Small Fiber Neuropathy)
 

I have had 15 months of progressive burning pain all over my body (mostly in extremities) since having a flu vaccine in Oct 2012. Burning is worse with activity, and warm and cold extremes, tight clothing etc.. Also I have noticed recently that accupuncture makes it worse.

I have had extensive neurological workup, including multiple MRIs, EMGs, NCV, LP and Therapath skin biopsy. The biopsy was done 1 year ago and showed normal nerve fiber density and sweat glands.
A new symptom over the past 3 months has been severe fatigue and insomnia along with depressed mood. I have tried numerous medications and cannot tolerate much with exception of Neurontin. I have been on methyl-b12/folate since the beginning with a recent b12 level of 1400. I am also taking vitamin D3. I could not tolerate SSRIs and SNRI meds or Lyrica.
The fatigue and insomnia have gotten so bad that I've had to go on medical leave from work (I am a physician myself).

My integrative doc wants me to take a supplement called Nuvoxil (which has L-tryptophan, l-theanine, taurine) to help with sleep and mood. She also wants me to switch to Methyl-b12 subcutaneous injections.
I am confused as to what to do:
1. Do I ask my neurologist to repeat a skin punch biopsy to look again for SFN since it's been 1 year?
2. Do I consider IVIG?
3. Any other nutritional/supplement recommendations - esp. for the severe fatigue and insomnia?
4. Would things like d-ribose or acetyl-l-carnitine help? I've been reading Dr. Teitelbaum books.

Thank you so much.

Hi Tarheel,
I don't see why you shouldn't ask for another skin biopsy. As you know, there is little pain with the process. Also my understanding is the is relatively small risk of infection.
I use melatonin for sleep. I'm not familiar with Nuvoxil. When I originally was diagnosed with SFN my neurologist had me try Elavil. It aids in sleep and helps with depression. Just a suggestion. I stopped taking it because I was too tired the next day.

I then started Cymbalta for the nerve pain and it worked. Have u tried this SSRI?
Unfortunately, I have come to the conclusion that fatigue is part of all this and is not going away. Have you had your thyroid tested?

If IVIG is being offered to you. Have your doctor apply to your insurance for it. It may take a while to get it approved. In the mean time you can do your research on it. Most research states that the sooner you begin the treatment for neuropathy the better the results. I do get IVIG once a month. It does not last very long. Maybe ten days. The most significant result for me is help with leg weakness.

Mrs. D will be the best to offer all the supplements. I personally take R lipoic acid , CoQ10, Krill oil.

I hope this helps a little. I know how hard it is to be in the medical field and not be able to figure this all out. I am a nurse and that has always driven me crazy. I have had SFN for 6 years now. I have been on IVIG for about 8 months. I think probably not early enough.

I hope this helps. Keep coming to the site. Even if you don't want to write there is a lot of good information to read. You are at the right place:)

High Dose Flu vaccine for 65 and over
 

I had the vaccine on Sept 14 2012 and 10 day after developed the same symptoms as you. I have been to many different Dr's both traditional and alternative. I spent two weeks at the Mayo Clinic in Rochester NY. After all sorts of tests paresthesia was the diagnosis. They also found a very small tumor on my left lung and thought that since I had the feelings of burning all over my body and a feeling of wetness over the periphery of my face the tumor should be removed as perhaps it was malignant or pressing on something. I had the tumor removed in February 2013 and it was benign and did not solve the problem. None of the meds, acupuncture, vitamin therapy, pain management have worked. This condition has also caused hypertension.

I was a perfectly healthy women before the high dose vaccine. I have now moved into an independent living facility with my husband in Florida and seeing a neurologist at the Cleveland clinic. She has been very honest with me and said I have SFN. She said that it is something I have to live with and we continue to try drugs which perhaps the most I could hope for would be a 50% reduction of discomfort.

If you have had any success since your posting I would appreciate hearing about it

:Wave-Hello: Welcome Posada.

You sound like my Dr. Thanks for reply.

Treatment for vaccine injury sometimes involves steroids.
Careful use may be an option.

We had a poster here from Canada who was given a double vaccination for Swine Flu, (in the recent past), by accident. He had a severe neuropathy from this.
His doctor treated him with steroids to suppress the autoimmune storm.

You might Google "treatments for vaccine injury" to see what others have done. But the traditional medical community is not up to date on this problem. There is considerable denial.
Vaccines somehow activate autoimmune reactions in some people who have a genetic tendency to have them.

Dr. Blaylock MD explains this in his YouTube videos. The primary suspect remains to be the adjuvants included in the vaccines, and/or any viral contamination from poor manufacturing techniques.

I believe that many neuropathies labeled "idiopathic" are vaccine induced. I received the H1N1 vaccine in 2009 and have been battling this condition ever since. It is very frustrating because doctors are dismissive. Honestly, I have done more for my own treatment than any MD. I am exhausted from spending hour upon hour day after day doing all the research to put this all together and create battle plans. Also if anyone knows of a good neurologist (please don't say Vanderbilt) in Tennessee please let me know.

It's kind of my mission to warn people of the dangers of vaccines. I can frequently be found near the walk in clinic of my local supermarket warning others. So mad at myself for getting that shot in 2009. I just can't let it go.:mad:

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

Robotic Laser Therapy for pain
 

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.

While I am sorry you have had to deal with this problem, I am grateful you are here to spread the word, for others. Thank you for posting.

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!

I too was afraid
 

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,

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

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.

Welcome mvalen. :Tip-Hat:

Updates?
 

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.

Vaccine High dose flu zone I shave same symptoms as you and have tried everything
 

I am 78 now and wondering if you are having any success

Any of you have twitching and jerking to go with it?

Post Flu vaccine
 

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

What about the others?

I will follow this thread....
I had severe reaction to flu shot in October 2013.
Ended up in ER - I have myasthenia gravis and it was exacerbated almost to point of a crisis. In fact I posted in NeuroTalk under myasthenia gravis about this.

Have never been the same.

Docs refused to allow flu shot this year.

Now have PN symptoms; pretty severe; I am new to the PN forum, just learning. Just diagnosed. I have almost if not ALL of your symptoms.

But I guess I just got used to having "STUFF" happening and

WHO wants to tell their docs a bunch of symptoms at each appointment? I hear they want to hear 2 or 3 at most.....

Sighh.......sorry to read about yours

Altho in hindsight I believe I have had the PN symptoms for quite a while, especially since the flu shot bit me in the you know where -
but they have recently escalated to where I really notice them and have much pain.

The myasthenia gravis and a few other miscellaneous diagnoses have kept me ill and busy enough trying to manage - but adding the PN.
O myyy = overwhelming at times.

The flu shot and PN and other illnessess. Hmmmm.......there must be a link!!!

So Sorry
 

[QUOTE=SoftTalker;1139478]I will follow this thread....
I had severe reaction to flu shot in October 2013.
Ended up in ER - I have myasthenia gravis and it was exacerbated almost to point of a crisis. In fact I posted in NeuroTalk under myasthenia gravis about this.

Have never been the same.

Docs refused to allow flu shot this year.

Now have PN symptoms; pretty severe; I am new to the PN forum, just learning. Just diagnosed. I have almost if not ALL of your symptoms.

But I guess I just got used to having "STUFF" happening and

WHO wants to tell their docs a bunch of symptoms at each appointment? I hear they want to hear 2 or 3 at most.....

Sighh.......sorry to read about yours

Altho in hindsight I believe I have had the PN symptoms for quite a while, especially since the flu shot bit me in the you know where -
but they have recently escalated to where I really notice them and have much pain.

The myasthenia gravis and a few other miscellaneous diagnoses have kept me ill and busy enough trying to manage - but adding the PN.
O myyy = overwhelming at times.

The flu shot and PN and other illnessess. Hmmmm.......there must be a link!!!
[/QUOTE

So sorry. I as you know am a victim of the vaccine. No Meds or supplements have helped. I burn from my face arms and legs. I am off everything. Tried acupuncture, robotic laser therapy and am finished. I do get relief when I sit in direct sunlight. Warm weather helps.

To Posada
 

Oh

I am so sorry for you. I just read the above message from you and read a couple of your previous messages.

I hope that by now you have adjusted somewhat, and have at least a little support from your family.

This PN is not fun, in addition to your other serious health issues, I can only assume for you, it is really the PITS. :mad:

Life is not fair; we all know that. But sometimes the odds really seem stacked against some of us.

Hang in there.

Only we who have walked in these shoes understand.
And it is not always easy to walk, especially with PN.

I believe we with chronic illness often become stronger and wiser in our hearts and minds,,
when illness causes us to suffer. :hug:

Thanks again, hugs and thanks for your compassion, dear Posada.


SoftTalker
aka
SoftWalker



Edited to add:
I am so glad you live in Florida with lots of sunshine and warmth. Interesting how the heat helps your burning........

I live in a moderate part of the US, and the cooler weather (not cold) helps me, which is very good for my primary illness, which is Myasthenia Gravis. Heat is very bad for me.

Let's give thanks for being able to live in places which can, somewhat, make our health conditions a bit easier to deal with.

Thank you
 

It would be nice if one day it all went away:):)

Me too!
 

Tarheel15,
You posted that a flu shot gave you small fiber neuropathy, after receiving it on October of 2012. Lo and behold brother, I too had a influenza vaccination on October 12, 2012, and I still have SFN to the tune of 9 to 10 gabapentin a day and 50mg. of nortriptyline to just get to sleep. Thankfully, I have a great lawyer and am in vaccine court trying to recoup my financial losses. I hope you also are lawyered up. It's the only thing that keeps me not being all the way down. We have to fight or we just give up. Let me know if you are still on this website and how you are doing.

Sarah.. I apologize for replying so late. I am still suffering very much from the post vaccine small fiber neuropathy. It's hard for me to walk and stand now. I would like to discuss my case with you privately if that's ok. I too am struggling with the vaccine court to recoup losses.

Hi Sarah, how are your symptoms? Have you been successful in your case? My husband is suffering from what we believe is post flu vaccine polyneuropathy. He received the flu vaccine November 2017 and a week later came down with horrible flu like symptoms which morphed into a 4 month long sinus infection (my husband normally never gets sick). The illness then began to cause chronic insomnia as well as a crawling feeling in his face and burning/tingling sensations in his extremities. He has now developed constant muscle twitching and is at his breaking point. This has been very psychologically debilitating and his doctors just say he suffers from stress and anxiety bc MRIs and blood tests have come back negative. I am having trouble finding a lawyer that will take on the case. Have any recommendations? Thanks in advance!

Post influenza vaccine 11/2018
 

It sounds terrible what you all have experienced. I wanted to share that I experienced immediate flushing on my right forehead followed by little neural pings all over my body which started a couple hours after the influenza vaccine. It felt like getting splashed with hot oil, in all extremities, stomach, back, perineum. It continued for about a week, went away then came back for another week. I had one episode of intense neural pain on my lower left abdomen, it lasted about a minute. I finally kicked it by taking alpha lipoic acid. This was on top of high B12, high lipospheric vit C and high vit D that I always take. Probably you all have already tried this supplement (take it with food, gives horrible GI burning on empty stomach) but maybe it will help someone who had just started having symptoms. I also strangely started having pain on both sides of my nose about 2-3 wks after the vaccine that I think was a sinus infection, it persisted a long time (and occasionally still recurs) but has never really been bad enough to seek care. It is strange to me though because I have never had sinus issues. If anyone has suggestions on getting a medical waiver so I can avoid having another influenza vaccine please let me know. I will be seeing my PA soon about it and I’m hoping he will sign off on it. I wish you all the best :(

VACCINE reaction
 

I had a similar experience but after Hepatitis B vaccine . Symptoms Started one day after vaccine . Tingling starting in right thigh spread round whole body including face . I also had arm pain and burning sensations in legs . Following on from this leg pains and cramps and body wide muscle twitching developed . throbbing Nerve pain on left arm meant I was unable to sleep. I also had some difficulty breathing sometimes and I had some minor muscle atrophy . I was not diagnosed until MAY ... 4.75 months after initial symptoms started. I kept getting a load of BS from family physician and A and E doctors , that Vaccine shouldn't cause such symptoms and should go away on their own.... Have people never heard of autoimmune inflammatory neuropathies such as GBS that can present after vaccine with tingling as a first symptom . Only because finally my mother found an excellent consultant neurophysiologist , whom we saw private , did we get a diagnosis.. He conducted emg and nerve tests and autonomic tests and turned out i had a small fibre / sympathetic and motor neuropathy ... immunoglobulin could no longer help as the damage had been done and now i was starting to improve .... the recovery time is put at 2 years from MAY... the case is in the hands of the family lawyers now.... How many people find that physicians are just in complete denial about vaccine side effects .... They would rather let you die than help you!!! It seems that only the best neurologists and neurophysiologists will admit that vaccines do indeed cause rare side effects!!

On the flip side. I caught the flu in April. It was misdiagnosed at first, so I didn't get treatment. After the flu went away, the neuropathy symptoms began. The neurologist explained that it was my immune response to the flu the triggered the neuropathy. Probably the same thing happens with the vaccine. Your own immune response to the vaccine is overkill.

Either way, it just sucks!