Idiopathic? Fibromyalgia? Prognosis for SFN?

MAT52 · 02-25-2015, 03:09 AM

Quote:

Originally Posted by en bloc

I know the idea of "idiopathic" and having no real answer to attach to your symptoms isn't a comforting one. But as long as you have the appropriate treatment, the time without that answer passes a little easier.

So your focus at this point might best be directed at finding the treatment that works best for you. Of course, continuing your search for answers should continue.

The skin biopsy would at least provide you with details as to severity and may open doors for better treatments like IVIG. I understand that may not be possible in your current location, but once you move it may become a reality.

Maybe I missed it somewhere, but what are the exact symptoms you have with your stomach? I only recall reading about pain...what else is going on there and what tests have you had done. I ask because what is going on there, may help direct you to the overall problem elsewhere.

Thanks en bloc - my stomach issues are bloating if I don't eat but even worse bloating within 30 minutes after food. I feel sick and often get a gnawing sensation daily and sometimes a nasty pain in my upper abdomen. I don't have bowel issues since quitting gluten four years ago - it's all in my upper GI tract and makes me belch and my tummy gurgles all night. If I drink any alcohol or eat late or have too many tomato based foods it's worse and I get sick.

I also have a foul taste 24/7 which worsens with certain drugs - lost my sense of taste and smell and only eat sweet or salty foods to try and get shot of this bad taste. Had dental checks and my oral hygene and teeth are very good so it's not decay.

Tests - I had a full abdominal scan about 20 months ago. This just confirmed longstanding gallstones too large to worry about and a large benign cyst on one kidney. Two GPs have blamed dyspepsia but the woman I saw the other day thinks it may be a hiatus hernia or small ulcer and has referred me to the surgeon to discuss which tests might be best - should be seen in about 6 weeks for this she said. I suggested she refer me directly for an endoscopy but she said I'm too complex with RA and my other issues and best to let the surgeon decide what tests to run. I don't have any heartburn.

I feel it is all connected but doctors need us to stick to one set of synptoms at a time I understand.

Joano · 02-25-2015, 04:43 PM

Tomatoes are in the night shade family, and all of those night shades cause me a lot of grief (peppers, potatoes, tomatoes, paprika, pimento, egg plant, and even tobacco).

MAT52 · 02-25-2015, 04:52 PM

Quote:

Originally Posted by Joano

Tomatoes are in the night shade family, and all of those night shades cause me a lot of grief (peppers, potatoes, tomatoes, paprika, pimento, egg plant, and even tobacco).

Thanks but I think I've been a bit dim about my symptoms. A few weeks ago I tried to come off Cymbalta and went into meltdown with headache, intense nerve pain in knees, nose and jaw and awfuk tummy trouble. Now I'm trying again but this time taking a bit less each day. I think in still really struggling from withdrawal but I'm absolutely determined to get off it now. I don't really find specific foods worsen it but I do get more burpy and gnawing if I drink red wine or eat tomatoes.

mrsD · 02-25-2015, 05:39 PM

Tomatoes are histamine releasing foods. If they bother you, it is best to avoid them. Red wine has yeast byproducts (aldehydes), which cause inflammation. Also red wine has polyphenols which dilate blood vessels, which may irritate people, and are headache triggers. Tomatoes and other nightshades contain solanine...an alkaloid thought to build up in people over time.

http://en.wikipedia.org/wiki/Solanine

Electron · 02-27-2015, 08:14 PM

Quote:

Originally Posted by MAT52

I feel it is all connected but doctors need us to stick to one set of synptoms at a time I understand.

MAT52, Do you think it makes sense to deal with one symptom at a time? Do you think it makes sense to treat only symptoms? Mainstream doctors generally must do that because they are taught to match one symptom with one drug, not to look at the whole body and not to look for a cause. You need to find a different kind of doctor, one who can connect the dots. I'm not saying that's easy.

My suggestion is you start listening to podcasts and do some internet searching. For example the podcast called Extreme Health Radio, and one called The Power of Natural Healing. Look through the list of E.H.R. podcasts for some that interest you, there are many about gut health.

You might also search the iTunes Store for podcasts with the word "health." All this should open yours eyes (or maybe you already know) to the fact that there is so much more going on than what the licensed M.D.'s are doing, and some practitioners actually make sense.

And there is always John Bergman. Here are some things I get when I search youtube for "John Bergman gut health."

Dr. John Bergman Healing Digestive Disorder & More! [This is an E.H.R. podcast]
https://www.youtube.com/watch?v=bsTRcwJrUTM

Half Hour to Health-Digestive System (Part 1)
https://www.youtube.com/watch?v=3a4O3lO4PDg

Digestion (Part 1)
https://www.youtube.com/watch?v=x6fjvXU_obA

To your health
Ron

Healthgirl · 03-02-2015, 10:11 AM

Quote:

Originally Posted by MAT52

Hi - lots more questions from me. I hope some of you might know the answers because I feel I've been abandoned by the neurologist and am to see the rheumatologist in three weeks time - but he's usually very disinterested and dismissive of this small fiber neuropathy of mine. My autoantibodies are all negative or equivocal so I'm guessing he might decide to tell me I have Fibromyalgia. Not really happy with this but I'm preparing myself because this seems to be the catch all term for anything doctors don't understand or can't be bothered to investigate any further.

1. If my autoantibodies are negative/ equivocal is this small fiber neuropathy of mine now classed as "idiopathic"?

2. If so what might the prognosis be for me - given it is affecting both arms and legs 24/7? The pain is only intense when I'm still - especially at night. I'm using Magnesium oil spray just now as well as taking B12 sublingually. I am weaning myself off Cymbalta because I don't want to end up on these kind of drugs long term - I've tried up to 40mg over two and a half months and it only takes the edge off - makes me eat too much and seems to make me grind my teeth - which is causing head and jaw ache.

3. I'm apparently to have a skin biopsy at some point but am aware this won't establish the cause - only confirm how advanced my SFN is. So should I just accept that I will probably never know the cause or should I keep pushing for answers in the hope that this might eventually subside or be reversed?

I guess I'm asking at what point most people here with idiopathic small fiber neuropathy just accept this diagnosis and learn to live with it. I've been suffering from these symptoms for several years now and it seems to have progressed up my legs and arms - especially the cold wet sensation I get all day everyday so I keep touching my leggings to see if they are actually wet.

How long does it take just to get used to the awful tingling and temperature issues?

I am six months into this taking over my whole body and I have all the same frustrations and questions you have. I am off to see the first rheumatologist since my official diagnoses, and as optimistic as I'm trying to be that there is someone who will help me, I already had a huge rheumatolgy workup that shows only a high ANA. So... I am still going. I was told out of two of the (probably 12-15) doctors I've seen, not to give up and that this is some doctor who will be able to figure this out.

MAT52 · 03-02-2015, 11:01 AM

Quote:

Originally Posted by Electron

MAT52, Do you think it makes sense to deal with one symptom at a time? Do you think it makes sense to treat only symptoms? Mainstream doctors generally must do that because they are taught to match one symptom with one drug, not to look at the whole body and not to look for a cause. You need to find a different kind of doctor, one who can connect the dots. I'm not saying that's easy.

My suggestion is you start listening to podcasts and do some internet searching. For example the podcast called Extreme Health Radio, and one called The Power of Natural Healing. Look through the list of E.H.R. podcasts for some that interest you, there are many about gut health.

You might also search the iTunes Store for podcasts with the word "health." All this should open yours eyes (or maybe you already know) to the fact that there is so much more going on than what the licensed M.D.'s are doing, and some practitioners actually make sense.

And there is always John Bergman. Here are some things I get when I search youtube for "John Bergman gut health."

Dr. John Bergman Healing Digestive Disorder & More! [This is an E.H.R. podcast]
https://www.youtube.com/watch?v=bsTRcwJrUTM

Half Hour to Health-Digestive System (Part 1)
https://www.youtube.com/watch?v=3a4O3lO4PDg

Digestion (Part 1)
https://www.youtube.com/watch?v=x6fjvXU_obA

To your health
Ron

Electron I'm very grateful for all this. However I know a lot of this already and have no time to do any more research than I've been doing for the past few years. I have the Paleo diet book re autoimmune diseases and the gut - have read about enzymes and proteins etc and although I am not a scientist at least some of this makes a lot of sense to me.

I also agree that it makes no sense tackling multisystem autoimmune issues one at a time as the medical profession invariably does. I think this is much more understandable in the UK however where our health system is publicly funded. They can only give patients like me so much of their time and are very limited in how holistic they can be - even if some know that their training has placed severe limitations on them and acknowledge that the whole health system is quite fundamentally flawed.

However in my case I believe that nutrition alone isn't going to help me out of my unwellness now. I'm already very careful about what I eat and drink and have been for the past four years. In the UK food is highly regulated and we don't have genetically modified crops. Organic apples grown in the UK are easy to come by in all major supermarkets - as are many other uncontaminated foods if we choose to pay more for them. I don't eat anything bad and yet I'm still very unwell. This could be because of nutritional issues that affected me as an infant. It could also be that my symptoms have come on badly as a result of drugs I have taken over the past few years. But I don't believe that my diet triggered my RA and nor do I believe that I could address my present unwellness through further dietary changes. I am barely able to face food presently but when I eat it is always totally healthy, fresh and wholeseome.

Electron · 03-02-2015, 11:21 AM

Quote:

Originally Posted by MAT52

But I don't believe that my diet triggered my RA and nor do I believe that I could address my present unwellness through dietry changes. I am barely able to face food presently but when I eat it is always totally healthy.

I am hearing a lot about broth--bone broth, etc.--for helping with gut issues. I don't believe in this so far, but people are talking about it. So what do you eat? Give me some example meals.
Ron

MAT52 · 03-02-2015, 11:31 AM

Quote:

Originally Posted by Healthgirl

I am six months into this taking over my whole body and I have all the same frustrations and questions you have. I am off to see the first rheumatologist since my official diagnoses, and as optimistic as I'm trying to be that there is someone who will help me, I already had a huge rheumatolgy workup that shows only a high ANA. So... I am still going. I was told out of two of the (probably 12-15) doctors I've seen, not to give up and that this is some doctor who will be able to figure this out.

I think a high ANA is a pretty reliable indicator that something autoimmune is going on for you Healthgirl. I don't even have this - just a low positive rheumatoid factor and high inflammatory markers. I think the main problem for many some of us is when things don't show up in the autoantibodies and doctors seem to dismiss our problems as idiopathic because of this. I really hope you have more luck than me. I'm too ill just now - after four years of all this - to even walk the dogs just now. I hope this is just because I've finally weaned myself off Cymbalta so am experiencing severe withdrawal issues. But failing an improvement as this drug leaves my body - I have other ideas of what might be causing my ill health including the small fiber neuropathy. Feeling too sick to write more but take care and good luck with the rheumatologist. I hope he's more of a progressive thinker than mine appears to be. Mat

Similar Threads
Thread	Thread Starter	Forum	Replies	Last Post
The age of onset and prognosis	Koala77	Multiple Sclerosis	27	06-05-2010 11:08 AM

Site Navigation

NeuroTalk Online Support Groups

Idiopathic? Fibromyalgia? Prognosis for SFN?

NeuroTalk Forums