Reply
 
Thread Tools Display Modes
Old 09-20-2016, 12:33 PM #1
DavidHC DavidHC is offline
Member
 
Join Date: Nov 2015
Posts: 721
3 yr Member
DavidHC DavidHC is offline
Member
 
Join Date: Nov 2015
Posts: 721
3 yr Member
Default Stress, diet, and worsening symptoms

So I have question. The cause of my SFN is still unknown but autoimmunity is the leading suspect. Diet and stress are the biggest factors/triggers when it comes to my symptoms. I'm wondering if these two factors necessarily implicate autoimmunity or whether others with known non-immune mediated SFN (ideally full body like mine) also have diet and stress as immediate and obvious triggers. So does everyone with SFN (or at least some who have non-immune mediated etiologies) have worsening symptoms when there are stressors and when they eat, say, gluten, nightshades, or whatever is a trigger on the diet front? I'm inclined to think yes, and that it's niot necessarily the case that autoimmunity is at work here, but I'd appreciate hearing from actual people who have had experience with this. Perhaps I'm wrong here, and full body SFN the symptoms of which are worsened by these two triggers necessarily has an autoimmune etiology.

Basically I want to get some idea regarding whether it could just be that my SFN is caused by my leaky gut and SIBO (bacterial overgrowth) and whether healing my gut and dealing with the bacteria will address the problem, or whether I've already triggered an autoimmune response in my body, which would be a whole other beast. It's partly for motivation, partly for hope, since the former problem would be much easier to deal with. I should say that we've found no hard evidence of autoimmunity as of yet, not just a particular disease, but not even a single marker, say ANA.

Thanks!
DavidHC is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Littlepaw (09-27-2016)
Old 09-21-2016, 06:58 AM #2
glenntaj glenntaj is offline
Magnate
Community Welcome Team
 
Join Date: Aug 2006
Location: Queens, NY
Posts: 2,778
10 yr Member
glenntaj glenntaj is offline
Magnate
Community Welcome Team
 
Join Date: Aug 2006
Location: Queens, NY
Posts: 2,778
My Mood: Stress, diet, and worsening symptoms
10 yr Member
Default I don't think--

--dietary lapses or other stress activations NECESSARILY implicate autoimmune processes, although they certainly CAN. But plenty of people notice symptom exacerbations with dietary lapses and other stressors (and not just with neuropathy, either).

Stress has a lot of biochemical effects that are still not greatly understood, though perpetuation of inflammatory responses is certainly among them, and that, of course, can lead to a whole host of symptoms.

And, as you can well imagine, many people with clear cut cases of, say, Type II diabetic neuropathy can have symptoms exacerbations if they eat a lot of carbs suddenly, or if they consume alcohol in some quantity. Not everyone necessarily experiences this, and the amounts that produce a reaction may vary greatly. But I don't think it's bad advice for anyone with neurologic symptoms, however idiopathic, to treat themselves as if they are diabetic/gluten sensitive/alcohol sensitive/vitamin deficient and live accordingly. Many do have better days if they limit carbs, gluten, and alcohol, and supplement reasonably. Nerves are very sensitive to stressors, and the fewer of these, and the more available good nutrients are, the better off they'll be.
glenntaj is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
DavidHC (10-06-2016), JimJamJones (02-11-2017), Littlepaw (09-27-2016)
Old 09-21-2016, 11:14 AM #3
pinkynose's Avatar
pinkynose pinkynose is offline
Member
 
Join Date: Jul 2015
Posts: 506
3 yr Member
pinkynose pinkynose is offline
Member
pinkynose's Avatar
 
Join Date: Jul 2015
Posts: 506
3 yr Member
Default Ditto what Glenntaj wrote

As you know, I have also been on a quest for 2 years to figure out where my SFN chronic symptoms came from. All tests (diabetes, specific autoimmune diseases and general tests such as ANA , heavy metals, etc. have been negative. Prior to my back surgery, stress and diet were definite triggers. Sugar effected me and taking supplements such as Benfotamine helped so I went chasing the possibility of diabetes. It is now 6 weeks post surgery and my symptoms are waning. Now, diet does not seem to effect me like before. For example, I can drink coffee with brown rice syrup (which basically is sugar.) My take on this is that the vertebrae compressing my nerve root caused inflammation which irritated my nerves. It didn't matter to my irritated nerves what the cause was. They acted like most irritated nerves would and reacted to stimuli that irritated nerves can react unfavorable to, such as diet and stress.

I do not have a scientific mind like others on NT so I hope this makes some sense.
Quote:
Originally Posted by DavidHC View Post
So I have question. The cause of my SFN is still unknown but autoimmunity is the leading suspect. Diet and stress are the biggest factors/triggers when it comes to my symptoms. I'm wondering if these two factors necessarily implicate autoimmunity or whether others with known non-immune mediated SFN (ideally full body like mine) also have diet and stress as immediate and obvious triggers. So does everyone with SFN (or at least some who have non-immune mediated etiologies) have worsening symptoms when there are stressors and when they eat, say, gluten, nightshades, or whatever is a trigger on the diet front? I'm inclined to think yes, and that it's niot necessarily the case that autoimmunity is at work here, but I'd appreciate hearing from actual people who have had experience with this. Perhaps I'm wrong here, and full body SFN the symptoms of which are worsened by these two triggers necessarily has an autoimmune etiology.

Basically I want to get some idea regarding whether it could just be that my SFN is caused by my leaky gut and SIBO (bacterial overgrowth) and whether healing my gut and dealing with the bacteria will address the problem, or whether I've already triggered an autoimmune response in my body, which would be a whole other beast. It's partly for motivation, partly for hope, since the former problem would be much easier to deal with. I should say that we've found no hard evidence of autoimmunity as of yet, not just a particular disease, but not even a single marker, say ANA.

Thanks!
__________________
"Sometimes I've believed as many as six impossible things before breakfast." Lewis Carroll
pinkynose is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
DavidHC (10-06-2016), Littlepaw (09-27-2016)
Old 09-22-2016, 10:57 PM #4
Protector Protector is offline
Junior Member
 
Join Date: Apr 2016
Posts: 19
3 yr Member
Protector Protector is offline
Junior Member
 
Join Date: Apr 2016
Posts: 19
3 yr Member
Default

Hi David,

I have had whole body neuropathy for a full year, and somewhat length dependent for a good year before that. I'm still searching for a cause. Aside from being borderline pre-diabetic, all tests have come back negative with the exception of a very weak titer (1:40) positive ANA (2 years ago). Numerous subsequent ANA's have all been negative.

I tested negative for celiac disease via biopsy but nonetheless went gluten free for 6 weeks this past spring with the only result of weight loss. As I reintroduced gluten I did not notice any change. I have cut back on sweet foods but still don't notice a difference if I cheat.

Stress is a whole different story. Any stressful event approaching and I definitely notice it in advance. The tingling and buzzing and tinnitus get very pronounced and usually recede afterwards. It never ceases to amaze me.

I had suspected auto-immune mediated from the one positive ANA, as well as some joint pain, but rheumatologists in my case seem to need the positive blood serum before they take you seriously or consider any treatment.
I have had so many symptoms during the last year that have come and gone over a period of several months, that I've basically given up searching for a cause. But the numbness and paresthesia just keeps slowly intensifying.

In the back of my mind, I realize Lyme could be the culprit, but not sure I want to pull the trigger on a long-term antibiotic regimen. The only other possible path would be to try a trial of steroids, I've held off on that too.

So from my perspective, food is not a trigger, but stress definitely is.
Hope this helps.
Protector is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
DavidHC (10-06-2016), Littlepaw (09-27-2016)
Old 09-26-2016, 10:08 PM #5
onebeed onebeed is offline
Member
 
Join Date: Aug 2015
Location: Kansas City area
Posts: 110
3 yr Member
onebeed onebeed is offline
Member
 
Join Date: Aug 2015
Location: Kansas City area
Posts: 110
3 yr Member
Default

Quote:
Originally Posted by Protector View Post

In the back of my mind, I realize Lyme could be the culprit, but not sure I want to pull the trigger on a long-term antibiotic regimen. The only other possible path would be to try a trial of steroids, I've held off on that too.
You don't have to do the antibiotic route to treat Lyme. People have had success with Banderol and Samento herbs. If you try them, start SLOWLY. If you suspect Lyme, don't try steroids. They suppress the immune system.
onebeed is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Protector (09-27-2016)
Old 09-27-2016, 12:28 PM #6
Littlepaw's Avatar
Littlepaw Littlepaw is offline
Senior Member
 
Join Date: Nov 2014
Posts: 1,537
5 yr Member
Littlepaw Littlepaw is offline
Senior Member
Littlepaw's Avatar
 
Join Date: Nov 2014
Posts: 1,537
5 yr Member
Default

Hi David,

My experience may be too unrelated but I thought I'd share anyway. I have CRPS due to surgical nerve damage in my foot and share symptoms with the SFN gang. I have always been a little food reactive but noticed after getting CRPS that this tendency became much, much worse. Nightshades, spice, nitrates and wine can set off a flare of redness/hotness/discomfort (progressing to stinging if bad enough) that is worst in my affected foot but is also seen in my hands and unaffected foot.

CRPS has an auto-immune component in some patients. I really wanted to find out what was happening as I have a shellfish allergy and am prescribed an Epipen. The last thing I need to do is inadvertantly make myself worse. So I went to my allergist to make sure I wasn't headed down the anaphylaxis path with any exposure to offending foods. Lo and behold, scratch testing was completely negative! My allergist said that some people have a metabolic reaction to certain foods that fits exactly what I experience. He said it can be annoying but was not causing harm.

My ANA and sed rate were pretty much zilch. Between that and the negative allergy test I have decided to occasionally indulge in pizza without worry .

I don't think identifiable triggers necessarily have to mean auto-immune. But I agree that keeping triggers down is a good thing and will help the system settle over all.

Hoping you find relief soon,
__________________
Littlepaw

Shine Your Bright Light
Littlepaw is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
DavidHC (10-06-2016), echoes long ago (09-27-2016)
Old 09-27-2016, 07:08 PM #7
Protector Protector is offline
Junior Member
 
Join Date: Apr 2016
Posts: 19
3 yr Member
Protector Protector is offline
Junior Member
 
Join Date: Apr 2016
Posts: 19
3 yr Member
Default

Quote:
Originally Posted by onebeed View Post
You don't have to do the antibiotic route to treat Lyme. People have had success with Banderol and Samento herbs. If you try them, start SLOWLY. If you suspect Lyme, don't try steroids. They suppress the immune system.
onebeed,

Thanks for the suggestion. I've been leery of trying anything for fear of causing more symptoms. I'll look into those herbs.
I had also read that Lyme and steroids don't mix.
I just don't know how long I can delay taking action before symptoms get worse.
Such a conundrum.
Protector is offline   Reply With QuoteReply With Quote
Old 09-28-2016, 06:43 PM #8
MAT52 MAT52 is offline
Member
 
Join Date: Feb 2015
Location: North of Scotland, UK
Posts: 526
3 yr Member
MAT52 MAT52 is offline
Member
 
Join Date: Feb 2015
Location: North of Scotland, UK
Posts: 526
3 yr Member
Default

Quote:
Originally Posted by DavidHC View Post
So I have question. The cause of my SFN is still unknown but autoimmunity is the leading suspect. Diet and stress are the biggest factors/triggers when it comes to my symptoms. I'm wondering if these two factors necessarily implicate autoimmunity or whether others with known non-immune mediated SFN (ideally full body like mine) also have diet and stress as immediate and obvious triggers. So does everyone with SFN (or at least some who have non-immune mediated etiologies) have worsening symptoms when there are stressors and when they eat, say, gluten, nightshades, or whatever is a trigger on the diet front? I'm inclined to think yes, and that it's niot necessarily the case that autoimmunity is at work here, but I'd appreciate hearing from actual people who have had experience with this. Perhaps I'm wrong here, and full body SFN the symptoms of which are worsened by these two triggers necessarily has an autoimmune etiology.

Basically I want to get some idea regarding whether it could just be that my SFN is caused by my leaky gut and SIBO (bacterial overgrowth) and whether healing my gut and dealing with the bacteria will address the problem, or whether I've already triggered an autoimmune response in my body, which would be a whole other beast. It's partly for motivation, partly for hope, since the former problem would be much easier to deal with. I should say that we've found no hard evidence of autoimmunity as of yet, not just a particular disease, but not even a single marker, say ANA.

Thanks!
David you asked for non-autoimmuners to give their penny's worth on this question about diet. I am as autoimmune as they come but I wanted to tell you something I've observed in my five year battle for answers. I have experimented with food eliminations to very little effect. The only trigger I can find is heat. If I have a hot bath or shower my legs and hands rage. If I eat or drink hot foods (spicy too - but mostly I mean temperature) then this invariably triggers a flare that will last for hours, sometimes a whole day or more.

After being told by a rheumatologist in January that I clearly did not have a connective tissue disease and my previous diagnosis of RA was up for review and certainly wasn't active - and with wholly negative antibody panel - I decided to go for a Coeliac test. After five years of being mostly gluten free I wanted to be sure that this really wasn't the cause of my all body SFN. So I did the gluten challenge with brass knobs on - cheerfully eating much wholemeal bread, pasta etc on a daily basis for several months. Then I got myself privately tested in a nearby clinic and it came back entirely negative but with a high IgA as is my usual. So I resolved to stay dairy free because of my bizarre and persistent constipation (which preceded the gluten challenge by several months) and stick with occasional whole grain breads and other non refined wheat and gluten.

Then a new rheumatologist in a new hospital retested all my autoantibody panel - this time when I had been off steroid medications and antinflammatories and all RA meds for a year. Bingo the ANA came back at 1:320 with a Nucleolar pattern, my IgG and IgA were both raised, as was my compliment and ESR was even higher than usual at 82 - CRP of 18 which is a bit raised. On the strength of this I had a lip biopsy in July and all of my salivary glands came back with high clusters of lymphocytes meaning I was diagnosed incontrovertibly with Sjogren's. My rheumatologist said that he hadn't expected the lip biopsy to yield such a definite result because my mouth and eyes are only manageably dry and my teeth are in unusually good shape for someone with primary Sjogrens. But the SFN and high ESR and total protein plus other new results told him that the biopsy was necessary for elimination purposes. He said he couldn't recall the last patient who had a positive result like mine. My main symptom is still SFN bad it is flaring like mad with stress just now. I take nothing at all for it - just try mindfulness and try to ride the electric storm as best I can. Knowing what is causing it helps immeasurably though.

The ESR and protein levels are often high with Sjogrens sufferers, not only as part of the inflammatory disease process, but because the blood is very intense due to lack of moisture. This should, but often isn't, part of the diagnostic criteria for Sjogrens.

Now I don't know if my ANA was ever tested prior to all the medications I was given for RA, so I can't say whether it was reverting to a glutenous diet that swung things at last for me, or whether it was the absence of any medication that could remotely skew things in my blood. I suspect it was the latter. But I've continued to eat a balanced diet with no food elimination apart from dairy. And my Sjogrens SFN waxes and wanes regardless - presently horrendous. If I'm not offered any immunesuppressant medications, IViG or Rituximab for my SFN then I will go back to being gluten free because I realise that some are intolerant even if they dint have Coeliacs. Due to symptoms and the pattern of my ANA i still think I also have Scleroderma, but am just focussing on the Sjogrens for now and hoping I'm wrong.

But personally speaking no food group elimination has ever remotely affected my SFN or any other of my symptoms over the decades. I eat very healthily and completely avoid caffeine and refined sugars and I genuinely don't find that gluten affects my autoimmunity at all.
__________________
If you get lemons, make lemonade
.


Hashimoto's, RA, Primary Sjogrens with Small Fiber Polyneuropathy, Hypertension, IBS-C and GORD.
MAT52 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
bluesfan (09-29-2016), DavidHC (10-06-2016)
Old 10-06-2016, 11:49 AM #9
DavidHC DavidHC is offline
Member
 
Join Date: Nov 2015
Posts: 721
3 yr Member
DavidHC DavidHC is offline
Member
 
Join Date: Nov 2015
Posts: 721
3 yr Member
Default

I wanted to thank you all for sharing your experiences, thoughts and advice. I appreciate it all. It helps a great deal. Soon I'll start a course of antibiotics for SIBO and see how that helps. If my suspicion is right, that I have a bacterial problem in my small intestine causing leaky gut and that's what is at the rout of it all, then this will help. I hope I can tolerate the antibiotics.
DavidHC is offline   Reply With QuoteReply With Quote
Old 10-06-2016, 01:32 PM #10
Littlepaw's Avatar
Littlepaw Littlepaw is offline
Senior Member
 
Join Date: Nov 2014
Posts: 1,537
5 yr Member
Littlepaw Littlepaw is offline
Senior Member
Littlepaw's Avatar
 
Join Date: Nov 2014
Posts: 1,537
5 yr Member
Default

Hey David,

I ran across this article recently. It relates to CRPS treatment but I found the SIBO link to nerve pain and inflammation interesting. The patient also took low dose naltrexone which improves CRPS on its own. However, it is a fascinating premise and may relate somewhat to what you are undertaking.

http://rsds.org/wp-content/uploads/2...N-and-CRPS.pdf

Good luck!
__________________
Littlepaw

Shine Your Bright Light
Littlepaw is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
DavidHC (10-06-2016)
Reply

Tags
autoimmunity, diet, sfn, stress, symptoms

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Worsening symptoms sandy56 Myasthenia Gravis 14 10-18-2016 11:32 PM
Need help!! Worsening symptoms JBuckl Traumatic Brain Injury and Post Concussion Syndrome 5 06-25-2014 07:10 PM
New and Worsening Symptoms Lin_Z Myasthenia Gravis 4 12-11-2013 11:53 PM
worsening of symptoms susanj Myasthenia Gravis 5 04-18-2013 12:33 PM
Worsening symptoms billy027 Thoracic Outlet Syndrome 10 03-12-2010 07:12 AM


All times are GMT -5. The time now is 03:59 AM.

Powered by vBulletin • Copyright ©2000 - 2019, Jelsoft Enterprises Ltd.
Search Engine Optimisation provided by DragonByte SEO v2.0.31 (Lite) - vBulletin Mods & Addons Copyright © 2019 DragonByte Technologies Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2019 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.