Small fiber neuropathy sudden progression

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Hi I'm 49 years old and had I think fibro my whole life but was able to live with it and not needing treatment. Then I had a.neuroma in my left foot and the posdiatrist botched my foot and and took out bone from a toe (said that was be cause) immediately after I had shooting electrical pains - it took me 2 years for a doctor to cut not one but two huge neuromas that went bad. Within one year after testing positive by a punch test my neuropathy went from my feet to my knees then thighs hands now arms chest butt and head. I am on butrans patch 15

Lyrics 500 and the currents won't stop and the pain in my chest is getting worse.

I think I may have another neuroma in right foot - MRI taken haven't gotten results. I'm considering IVIG. Has anyone had it with success if so tips on approval. Is this gonna get worse? I'm so worried. I have an 9 and 8 year old. I've tested for Insulline resistance. - I have. They put me on medformin. I used to be a successful rep making great money and now nothing - I have a part time gig that pays nothing

I get so sired from the fatigue I have to rest.

Any help would be appreciated.

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  • Posted

    Helen, I also had neuromas in both feet. Podiatrist removed them and now I have big knot on bottom of my right foot that I have a doctors appointment for. I had(and till have) shooting electric shocks going on in my feet. My ankles and legs feel heavy after a short walk or walk up an incline. I mean from my feet to my hips hurt. I have to set down do to feeling as if I had walked a mile.I am exhausted. Sometimes I get cramps in them. I have perinal neuropathy in my feet, I have wondered if it has gone into my legs. I was told that I have Fibromyalgia, but from what I have read it has different symptoms. So I am not sure, but from what you wrote it sounds the same as to what I have going on.I tried Lyrica and had terrible side effects. Now I just take pain meds and Paquenial(I know that isn't right spelling, anyways that takes six weeks to work.I have no kids at home, so I lucked out on that one. But I also seem to not have a life. Can't plan anything due to every day is a new one whenitcomes to pain. Forgive my rambling on, Jmac

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    • Posted

      Hi there. Hey Pretty cool you know Eleni is also Helen. Yes 50 percent of SF puts have fibro. I have it as well. Also thyroid issues and insulin resistance. I was a model at one time. Pharma rep and now I won't even say. I believe the stress of the job bad nerve did it to me. Life only has been a battle since. Funny you mentioned Plaquinel. Good move on whoever prescribed. Inflammation left untreated long term leads to cardiac disease in 5 years. What dose did they start u on? Studies have just started in the Netherlands for success of IVIG and small fiber.

      My one doctor said stem cell IV might and I repeat might work for 5 grand.

      I can't afford that. I'm a. Nurse by the way - not working. Please keep me posted on plaquenel and success or not. Oh please try Lyrica. It so helps

      I pray it doesn't move to hands arms and head. That's driving me nuts. Thighs too. I did start on the butrans patch 10 Mcq it's equal to one oxy u change it weekly. Ryou tired. If so check thyroid. Huge incidence with that too. I had that ball of cement injected. Like 3 times. Scar tissue can aggravate nerves and helped a hair I do regret going back in with a nerve condition to remove scar tissue do not do that I believe it exassterbated my condition.

      I'm rabbling too sorry. Where do you live? Florida -

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    • Posted

      Hi Sorry to hear all this.

      I was just wondering how thw diagnosis was reached by the podiatrist?

      Many thanks.

       

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    • Posted

      Hello everyone, it is so nice to be able to find different answers to questions I have. I live in Tulsa, Oklahoma. I was told by doctor to take B1 which is Thyamine(again forgive spelling). I will take your advice about decompressing knot in foot. I wasn't looking forward to surgery on my feet again. I tried shots in the neurma, worked for about two days then went back to killing me to walk. I never realized how much you usthe ball of your feet until you can't. I take Thyroid med. I have Hypothyroidism. I take Synthroid 75mg once a day for that. The Plaquenil I take 200mg twice a day.Started on that three weeks ago. The doctor I use is a GP As well as a Podiatrist. He is in his early to middle 70's. He diagnosed my neutrals by feel and symptoms. I went for a second opinion and was told that he was right. I am with you, I am unable to work so we rely on my husband's check, by the time you pay bills you don't have 5k sitting around. If we did my house wouldn't be falling down around us. LOL I found if you don't have a sense of humor you'll go nuts with worry and pain. I have faith that God will help me. He has in so many other ways, like drinking and drugs.I think I got everything in, my book. Now on to take meds to see how tried I'll be. Then a nap and start all over again. Although I don't have to take meds. to be tired. I have found I stay that way. Looking forward to more dialogue. Jmac

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    • Posted

      Podiatrist screwed up. Injection only. No attempt for an MRI - now I know. I had two and the one not touched was the size of mt Everest causing serious nerve issues since it was bothered by the first surgery. Since I had a botch no one would touch me. Finally found someone two years later. He fused my 4th and 5 so the last wouldn't be floppy and took out the neuroma.

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    • Posted

      I m not sure if I addressed the knot

      I had that and the. Neuropathy got worse. I had two injections which made that knot go away (mostly)

      And it least it feels better. FYI scar tissue sometimes is confused with inflammation. I had laser therapy

      For that it it did help. Cost 50. Each time and u need 6 at least. I stopped at 4 but did get results

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    • Posted

      Thank-you for the info. My husband's insurance company is so weird. They won't pay for practical and easy fix, they would rather send a ton of evasive stuff. Don't know for sure what they will do on this. I would prefer easy way (as if there is one) then have my foot cut on. I just want my foot back. The pain is ridiculous. Not to mention the shot electric shocks that are going on right now. I noticed tonight that my toes are starting to curl up and one toe is straight out instead of bending, while the one next to it is drawing to it. It's like I put valcro on the side and stuck them together. Ugh what next. The list is getting longer. I try so hard to be healthy and I get this and that, while my husband is doing opposite and has good health. Go figure LOL

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    • Posted

      So you didn't have your neuroma cut on? Sorry I thought it was and u had scar tissue. Nerve damage is setting in. Time to cut it - my opinion. I had that and they went back to normal kinda hard to bend completely simply due to scar tissue.

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    • Posted

      My neurologist performed a punch test.  We also did the test that they zap you with electrical volts.  I cant remember the name.  From that we were able to determine if peripheral or nerves deep.  Deep were not affected
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  • Posted

    Don't take any b6 and if you are on metformin you need to be taking b12. Check your supplements and make sure you aren't taking b6 as it causes neuropathy and so many podiatrists and orthos recommend it and it's not good. Also, repetitive neuromas have nothing to do with neuropathy, it has to do with the way you are walking on your feet, your alignment. Cutting out a "neuroma" never works as it leaves a true neuroma afterwards that is usually much worse. They should be decompressed, not cut out. Stop letting them cut into you.

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    • Posted

      I love open discussion and ideas.

      Sadly, decompression did not work for me on the left foot. The podiatrist left me with a floppy little toe. And throbbing pain that was so bad I wanted to die. Got the neuroma x2 cut by a Otho and I am so much better. I did have to get 4 injections because I just scar a lot I have found now that PT and laser 7 therapy cut the inflammation - I will also add the podiatrist kept injections with steroid like a million times setting off the.neuropathy. And promoting more wasting of tissue. I should have put my foot down - my fault I knew better. I just recently had this terrible progression. In my heart I knew something was up and yep neuroma number 3 - I'm. Not gonna deny is the surgery gonna make me worse or is the. Neuroma making it worse and the. Nerves may calm post surgery

      I can only hope for the best. As a NP I have read endless studies. 50percent of of SFN pts have fibro. 40percent have neuroma of the 50 percent. And hypothyroid is up there too. I just heard. IVIG is. Not covered for SFn. I would love to find out how some people got it covered. Plaquenel is the closest thing to decreasing the inflammation. Ok.

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    • Posted

      I beg to differ with those studies. I am also a nurse. Neuromas are caused by direct damage to a nerve through compression or injury. SFN does not directly cause neuromas. I wouldn't be surprised if 40% of people with SFN have neuromas because they don't walk properly with their feet, but it's not a direct cause of neuromas, if anything, it is indirect. Unfortunately, the cutting of a nerve always results in a neuroma, a bundle of scar at the site of cutting it. Whether it gives you trouble is a different thing, but many time a mortans neuroma is a truly a compression of a nerve and thus cutting it out is what actually forms the neuroma. Most podiatrists are not good in this area and neither are orthos, a peripheral neurosurgeon would be the one to consult with. Unfortunately, the medical world tends to cause more injury than there probably was in the first place. Alignment is the real problem when people end up with neuromas.

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    • Posted

      Your statements are fair. I found it interesting there is a strong genetic component. Most likely on way our feet are genetically designed inguess

      I wore heels all day -most my life

      Peripheral neurosurgeon do they actually repair neuromas or just pawn off to ortho and podiatrists. Feet were not my area of expertise so that is interesting to hear and will look into one locally. Yes scar tissue does form and the bigger the. Neuroma it was so big it was traveling to try to pop out to the side and surfaced thru two layers of tissue that one has a permanent ball feeling. I'll look into the neurosurgeon. That ball of scar tissue can make the nerve act up even tho cut. Your statement is very true about that more scar tissue more nerve firing

      This I've had 3 injections so far

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    • Posted

      Hello I reached out to the one and only peripheral neurosurgeon and guess what he does not deal with neuromas  -he pawns them off to ortho.

      Hmmm I would have liked to have had an opinion at least

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