I suffer from hot sweaty hands and numb prickly feet, but Has anyone also suffered from inflammation pain with EM? With me, I had inflammation between my 3rd and 4th metatarsal that caused shooting nerve pain with every step. Same in both heels. Also carpal tunnel symptoms. Originally I thought these were from specific incidents where trauma occurred, but then it came back(toe and heel pain) almost exactly a year later with no apparent trauma. As this occurred both times in the 2nd week of January my only thought is my sugar consumption around Christmas was very high. Cookies, candy, ice cream, pies became breakfast, lunch and dinner.
I’m 3 weeks into my no gluten/sugar diet. I realized how addicting sugar is. Still have serious cravings and went to far with the sugar alcohols. Not pleasant.
Hello Sky.
I defiantly suffer from inflammation specific pain. I go through periods where it gets better and worse. If I am flaring badly and there is some reason I can’t stop and cool it often turns into awful sharp shooting pain in my feet and sometimes hands. I also get intermittent carpl tunnel symptoms. I have had months where every night my arms go numb. Both will go numb and I am not laying on them. The first time it took me a few months after complaining to get my nerve conduction study and by the time I had it done my symptoms were gone and my test results were normal. A few months later it began again this time I had my nerve conduction test on my arms and they said I had carpal tunnel in both of my arms. Interesting about a year later I was seen by a different neurologist and she did the nerve conduction test on my arms and legs and she said my arms were fine and my legs showed possible small fiber neuropathy. At this time I only had problems with my feet and my arms were not symptomatic. I tried to tell her it was like I had intermittent neuropathy but she just said that wasn’t possible and that my last tests must have been wrong.
I know what is happening and it is just like intermittent neuropathy possible or not it is happening!!! Although a doctor hasn’t agreed with me I think it is neuropathy caused by inflammation and when the inflammation subsides so does the neuropathy. It is like the swelling puts pressure on the nerves. Just my theory but I can’t think of any other explanation.
I think it just comes and goes and changes in severity just like the EM burning symptoms. I have tried the elimination diet with the assistance of a doctor ( so hard!!) but this didn’t change my symptoms. I hope that it does help yours. Some people are sensitive to certain foods more so than others so it is possible that it will help you. I hope so.
Take care
Hi. I have been shown from my high sed rate and other bloods to have systemic inflammation. The burning is always there - like being in a scalding bath I can't climb out of with both feet up to my knees and both hands and wrists. Once last year my husband and I coincided in the night in the bathroom in the early hours of the night. He walked in to find me on all fours, backside facing the door, in a cool bath sucking my mouthguard I use for jaw clenching. How we both laughed!
My recent lumbar puncture showed that I have high immunoglobulins in my CSF and my GP says this confirms that all my problems are immune mediated/ inflammatory small fiber neuropthy. I can predict my inflammation markers in my blood pretty accurately by how stiff and achy and unwell I'm feeling and how much my extremities are burning. He thinks I probably have a mix of EM, SFN and Raynauds as part of my autoimmunity.
But still waiting for specialist blood tests results to come back. Now on Asprin x 3 a day with stomach protectors. For two days I was almost burn pain free with only pins and needles but now it's come back with a vengeance. I got so excited thinking Asprin was going to be my wonder drug! I guess the way to tell if your problems are inflammatory is to take NSAIDs if you can stomach them - even for a short period. Otherwise taking steroids for a short period can show this too?
EMG/ nerve conduction tests can't usually detect a small fiber neuropathy. The only way of diagnosing SFN is by taking a skin biopsy. I haven't had one yet and my doctors are saying that they are sufficiently sure it's this from my symptoms and the high immunoglobulin so maybe this isn't needed.
But if there's uncertainty for you and you really do want to know for sure you should ask for a skin biopsy.
Wow, Sky, I have recurrent inflammation in exactly the same spot--between 3rd and 4th metatarsals. Last year it came from an inflamed spot on the fourth toe, and my general practitioner thought it was because I'd accidentally cut my toe while clipping the nail (not too hard to do because I have idiopathic sensorimotor neuropathy). She gave me antibiotic, and it eventually got better. This year it came back, and a podiatrist said it was because of my Raynaud's. (He recommended taking niacin, but I'm not doing that because it exacerbates EM--which for me is much worse than the Raynaud's.) But he gave me an anti-inflammatory cream, which seemed to help--or maybe it just got better on its own.
I haven't tried cutting way back on sugar, or gluten, but maybe I should.
Alina, I'm sure my neuropathy comes and goes. The symptoms certainly do, and I think the test results do too. I have predominantly motor neuropathy, which does show up on EMG/NCV tests. The neurologist who tested me 18 months ago was a little surprised that things had gotten better since my earlier tests. He said that was partly because of different equipment, but he also thought the difference indicated that an acute episode of neuropathy--possibly from Guillen-Barre syndrome--was "resolving." (I got excited thinking it might continue "resolving," but it's never gone away. It's pretty noticeable again now. Personally, I think it's because I made the mistake of accepting an orthopedist's offer to give me a cortisone shot.)
Sure, demyelination is usually permanent, but the nervous system is so incredibly complex; surely the impulses sometimes find alternative paths? And then if those pathways get interrupted, there's another flare-up? Anyway, this is another case where our knowledge of our own bodies has to count for something.
Alina Delp said:
Hello Sky. I defiantly suffer from inflammation specific pain. I go through periods where it gets better and worse. If I am flaring badly and there is some reason I can't stop and cool it often turns into awful sharp shooting pain in my feet and sometimes hands. I also get intermittent carpl tunnel symptoms. I have had months where every night my arms go numb. Both will go numb and I am not laying on them. The first time it took me a few months after complaining to get my nerve conduction study and by the time I had it done my symptoms were gone and my test results were normal. A few months later it began again this time I had my nerve conduction test on my arms and they said I had carpal tunnel in both of my arms. Interesting about a year later I was seen by a different neurologist and she did the nerve conduction test on my arms and legs and she said my arms were fine and my legs showed possible small fiber neuropathy. At this time I only had problems with my feet and my arms were not symptomatic. I tried to tell her it was like I had intermittent neuropathy but she just said that wasn't possible and that my last tests must have been wrong. I know what is happening and it is just like intermittent neuropathy possible or not it is happening!!! Although a doctor hasn't agreed with me I think it is neuropathy caused by inflammation and when the inflammation subsides so does the neuropathy. It is like the swelling puts pressure on the nerves. Just my theory but I can't think of any other explanation. I think it just comes and goes and changes in severity just like the EM burning symptoms. I have tried the elimination diet with the assistance of a doctor ( so hard!!) but this didn't change my symptoms. I hope that it does help yours. Some people are sensitive to certain foods more so than others so it is possible that it will help you. I hope so. Take care
Re 3rd and 4th metatarsal imflammation - has anyone ever been told by a podiatrist that this could be a Morton’s Neuroma? I ask because these are common and come and go and are always in exactly this spot - between the 3rd and 4th metatarsals.
I definitely feel mine worsen when I’m more inflamed - they get swollen on the toe pad under it on each foot - right foot much worse. It started after RA had flared in my feet but it’s basically a trapped nerve. I only suffer from Raynauds in my toes - which go white and wrinkled and get chilblains. I think my feet are my weak spot presently.
Notred, I was told by 3 podiatrists I had Morton’s neuroma. I had an MRI on both feet just to confirm what we already supposedly knew, and then we were going to schedule surgery. MRI showed inflammation in one foot but it was not representative of a neuroma. The other foot showed nothing. Podiatrist called it idiopathic and sent me to the neurologist. It’s clear now that the neuroma was caused by inflammation and not a specific trauma.
You should ask for a referral to a Rheumatologist if you don’t already have one. I have RA and my last flare was in my feet. I didn’t really believe I had RA at this stage and had come off the DMARD Methotrexate because it made me so sick.
I saw the podiatrist who is rheumy trained and he took one look at my toe pads and felt the heat coming off them - squoze my joints and said “this can only be Rheumatoid Arthritis - nothing else causes this kind of swelling and pain in the metatarsal joints!” So it was a reality check for me! If you have inflammation in these joints then you should push to see a rheumatologist.
My podiatrist says mine is an MN now because when he squeezes my foot the nerve pops! Initially he said the MN was nothing to do with RA. But now he feels my autoimmune disease is such a rare beast that it’s very possible that this MN has been triggered and worsened by systemic inflammation.
I’m currently seeing a naturopath who is geared toward diet. I’ll give it a shot first. Problem is it doesn’t seem to matter who we see as the diagnosis doesn’t seem to ever lead to a resolution. My toes, when squeezed, also pops. I was able to greatly reduce the inflammation with a low level laser 2 times a week for 3 weeks. Funny that about 7 years ago I had the same pain in my other foot, twice. I rested it for a week and it went away. No numbness, prickles or burning.
Who knows. I would see a naturopath if I could afford to. I don’t really like putting all these drugs into my body.
One of them,Methotrexate, is a chemo drug and I injected it into my belly once a week for two years. No wonder they thought the EM/ SFN was probably a response to the toxicity of the drugs!
But here’s the thing. I exercise everyday, stick to a gluten free, avoid all refined foods, am caffeine free diet and eat a fully balanced diet in terms of nutrients. Never touch fizzy drinks, rarely drink alcohol. So I don’t believe my autoimmune system is bothered by anything in my diet. I think it all goes back to stuff that happened to me when I was a baby - essential vitamins I was deprived of, which then triggered my immune system to overreact to things it should accept. And therefore if there are drugs that can modify or stall the disease from progressing then I will try them. The rest, those just drugs that are treating my synptoms only, bother me I admit.
Alina, that’s my take as well. There is inflammation throughout the body which either puts pressure on the nerves or causes the nerves to react abnormally. The big question is, why do we have inflammation? One interesting book, although I don’t completely buy it, is “Eat Right 4 Your Type” which is based on eating within the parameters of your blood type. I’d love to know if anyone here has tried it. If I see no results from my no gluten/sugar diet, I’ll try it. Basically it states our blood type comes from a time period. Type O is old blood from hunting and gathering. Thus meat is good and grains bad. Type A is agricultural so best to lay off meat and do lots of veggies. This is a very superficial overview so if interested just by a used copy on Amazon for $5. But the premise is, certain foods cause inflammation for me, but maybe not for you because of our blood types.