New Member here with massive new onset of neuropathy symptoms
 

Hi Everyone,

Glad I was able to find this resource of information and good people. Thanks for having me!

My Story:

I have had PN in my feet since 2018. Up until this point, I only had very minor symptoms of burning pain in my sole of my feet and numbness in my toes. It would present for a day or two and then go away, sometimes for months.. Because it was so minor, I would not give it much thought, as I am very busy with work, and family/kids.

My PCP diagnosed it as PN, and checked for diabetes, which I did not have. I never had an official diagnosis however. Just said to keep an eye on it. The last time I made a note of having pain in my foot was April of this year. Did not have any symptoms at all from April until now.

I went bed Friday 9-17-20 feeling great, no problems and slept like a baby. Woke up Saturday to an entirely new reality, a nightmare more like it! Burning pain not only in both feet, but in both hands as well. Within hours this evolved to include tingling, zapping, crawling, burning sensations in my legs and arms. By the next day, this sensation (paresthesia)? had taken over my entire body, even my face.

Now on day 9, I am still having the same symptoms, which have not improved. I am noticing a pattern where my symptoms are the worse in the morning, then subside as the day goes on. During the day the symptoms can wax and wane. My feet only feel normal, not wearing shoes. If I put shoes on and start walking, they become pins and needles with burning pain. When the evening comes, the symptoms get worse again full body. When I lay down to sleep, my entire body feels like ants are crawling over it. I then start to get a burning sensation on my feet, hands, torso, arms, and face. Needless to say, I have not slept well at all. Thankfully I work from home!

So here I am, frantically researching this insidious new health problem. I have yet to wrap my mind around how quickly this all progressed. I went from feeling the best I have felt in a long time to pure suffering, and mental anguish. How can it be that nerve damage occurs so quickly over night? I thought this was supposed to be a slow progressing disease.

Anyway, I have an appointment with a Neurologist tomorrow. I am not sure what is going to happen on the road ahead, but I can't help but think about my family, being a Husband and Father. The support I provide, and all that will be required of me to fulfill my responsibilities if this is the new normal, with a prognosis of getting worse. Those are the thoughts that consume me now.

Thanks again, for letting me share my story. I am sure I will be on here frequently in the days ahead with questions and thoughts. If any members have words of wisdom or suggestions, please share. I am 48 years old.

Thanks!

HaveMercy

Well there is a LOT of help and support info here and the PN forum is loaded with supports.

Do you have any idea how the neuropathy all started.. think on this.

Alcohol, lots of sugar too much sugars can do it, foods yes.

Pharma drugs, yes some.

Surgery yes.

Mine started from hip replacement in 2010 and I've done a lot of supports to calm the burn/tingle down.

Inosine is one supplement that's helped me a lot and I post about it in PN group.

Topricin homeopathic lotion is a great pain calmer too. There are many topicals one can try and have some favorites.

I've never visited a neurologist as I do my own research and lots of help here...the MD's will slap us with their drugs...I don't want those.

HI Caroline,

Thanks for your response and support.! I was a casual drinker, but I don't drink anymore now for a year. Got to where just a couple of drinks would make me feel lousy.

I have a big sweet tooth, so yes I did eat a lot of sweets. I did not think this was a problem with normal blood sugars. As soon as this problem hit, I have cut out all sugar and carbs.. I bought a glucose meter and have been testing my blood twice a day for a week.. All normal.

I don't take any prescriptions

No surgeries

So if this was caused by sugar intake or my past moderate alcoholic intake, do you think it could be reversed by cutting all that out? If that is the cause, I must have some genetic disposition, because no one else I know has got it from that.

Thanks!

I would think it all can improve, changing what we put in our mouths....how much damage has been done, is the key now.

Like in my situation and it's 10 yrs since major surgery, I've improved but some nerves are dead forever...

HaveMercy check out the posts from glenntaj here. He had a similar bodywide presentation overnight like you did except he had no symptoms at all before that. I'm not sure how far the posts go back here on this incarnation but he has described his journey many times and is doing much better now.

Welcome HaveMercy. :welcome_sign:

Kitt

Hey Have Mercy,

I read your heartbreaking post and noticed that you must have had your appointment with the neurologist by now. What was the outcome?

I can't add anything I'm afraid, but offer my support and sympathy.

Take care,

Atty

Welcome, HaveMercy,
I can't come up with any answers for you but I hope that your appointment with a neurologist was helpful.

Quite often some medicine a person is taking turns out to be the problem--but you don't mention taking any.

Best wishes to you and your family.

Hi Agate,

Thanks for the support. My appointment with my Neurologist was not that great really. He seemed unconcerned and said it sounds like non length sensory neuroptathy. He gave me a script for blood test and and cymbalata. I am now looking for a 2nd opinion.

The only thing I was taking before my condition started was taurine, L-argine, and L-caratine amino acids, and some vitamins. No prescription drugs. I have since stopped those with no change.

My symptoms are the same now 3 weeks into this.. Full body parathesia, and burning pain in my feet. :(

HaveMercy, you've seen the neurologist only recently. Neurological disorders sometimes take time to improve--or even to be figured out. Why not give the Cymbalta a chance? It seems to be a standard treatment for the condition your neuro has diagnosed, and it just might help. In case you haven't looked at the information about it:

Cymbalta Uses, Dosage, Side Effects & Warnings - Drugs.com

And here's am abstract of a fairly recent article about the diagnosis and treatment of small-fiber neuropathy:

Diagnosis and Treatment of Pain in Small Fiber Neuropathy

Wondering about the Grape Seed extract - what dosage is recommended to take?

Small fiber neuropathy
 

Hello, I have been just diagnosed with small fiber neuropathy this past Monday. It was through a nerve/skin biopsy that my neurologist gave me.
For a year in a half my primary thought it was anxiety and it never was.
My symptoms are sever from balance issues and tremors throughout the body 24/7 for a year plus. I even get tension in the face area.
I have just started Gabapentin and they are trying that first. The neurologist has no idea what sparked this all my blood tests were great and all other levels of tests were great.
Does anyone else feel the same all day every day?

Welcome, skbing5390,

Although I haven't had any experience with small fiber neuropathy, I'm sure there will be someone here who can help you.

You might get more replies if you posted a thread of your own.

:Good-Luck:

Welcome skbing5390. :Wave-Hello:

Yes, whole body too
 

I went to the neurologist in town following my general practitioners referral. He said small fiber neuropathy. He was not a specialist. I looked for a specialty clinic on my own and asked a neurologist to send the referral. I just had that visit about 10 days ago. They did a couple additional blood tests and nothing came up. They did EMG and NCS. Nothing came up. I wasn't expecting anything because I was suspecting small fiber neuropathy and that is not measured with those tests. But they also did do the skin biopsy. My skin biopsy shows axonal swelling in the distal site. They are increasing my nortriptyline to 25 mg a day. This is still a small dose and most literature doesn't find nor tryptoling better than placebo. They're also starting me on gabapentin. The doctors warned me that gabapentin doesn't really do much for small fiber neuropathy. I've done lots of research. I am in my 6th decade. Literature seems to say that it can arise in people of a certain age. And 30 to 50% remain without a known cause. You can find hopeful paragraphs in literature that say it will plateau. You will also hear horror stories at some people lose all sensitivity in all of their skin. Getting the skin biopsy has actually made me more depressed. I obviously knew that something was wrong. Anyone can read my initial post. But just seeing that pathology was found, ie axonal swelling makes it all too real. When axons swell it is often a prelude to further degeneration. So the question for me will be how widespread will this ultimately go. I hear people's suggestions about stopping sugar, stopping alcohol, etc etc. I have not made any real life changes yet. Sometimes I think we should do like Caroline and avoid the doctors and simply live our lives. I wish you best of luck. We have to make a choice when we are faced with going down the rabbit hole of traditional medicine or avoiding it all together. I do have a follow-up appointment with the neurology clinic in May. I will go I suppose. But something deep inside of me tells me that this will play out however it is meant to. Learning to live life in the moment is more important now than ever.

Sfn
 

I think your last comment is an excellent one. Just get on with life. See your doctor or neurologist and you will probably get more info but cannot really help. I am due to see the neurologist in a few weeks but am not really expecting anything from it. My diagnosis is described under my user name Suzyt. I just want to know if my condition will get progressively worse or plateau. Also if I need to warn my son who is 44 of my condition.

I’ll update after my visit but for now I am trying to ignore the progressive increase in the numbness and tingling creeping up my body.

Hey skbing,

Good morning and welcome.

Sorry to hear of your symptoms.
I am interested in your dizziness and facial symptoms. I wonder if they are unrelated to your SFN. Do you get temporal or occipital headaches too? ( side or back of head) Do you get tightness in the neck or shoulders?

Atty

I'm 80 years old with 30 years experience with this elusive, painful malady. I can relate to your experience Mercy. There seems to be little patterns to what sets it off, but I can related how it suddenly goes from everyday chronic pain to acute pain.

It was mostly in my feet until I got radiation for prostrate cancer. Afterwards I had these chronic to acute episodes. Numbing pain migrated throughout my body--face, abdomen and legs .I've found searching for causes such as radiation is a dead end. The official diagnosis is Chronic Idiopathic Polyneuropathy (CIP) In other words the idiots don't have a clue what causes it. In the USA they only know it gets worse with age. it is being researched extensively in Italy and Sweden, but not here.

I focus on the very real problem of my pain and anxiety which will get worse the longer i live. I've found some answers. I have a wonderful PCP who put me on low doses of Cymbalta which was no help and then low doses of Gabapentin also with no results/. But this elusive CIP requires higher doses, up to 800 mg 3 X a day. I'm also being treated by a psychiatrist who has prescribed Remeron at night to help me sleep and Xanax, which has really been a
Godsend.

I've tried medical marijuana. It was no help at all, but some says it has helped if you can afford it. What is working for me now is a combination of (1) Gabapentin (Neurotin) titrating up to 600 mg 3 x a day. (2) one half to one mg of Xanax when I feel it going acute; (3) A Chinese herb called Corydalis. This herb eased the pain before radiation and now I take six capsules a day (4) Daily exercises.

Am I pain free. Of course not, but prayer and mediation have helped me to accept things I can't change and change the thing I can.

Wade Senior

Welcome Wade Senior. :Wave-Hello:

The official diagnosis is Chronic Idiopathic Polyneuropathy (CIP). I've had it for 30 years. Little research in this country. Researchers can only positively say the condition worsens with age, and it has. My feet are always numb, sometimes with extreme burning pain or pressure, accompanied by dizziness and brain fog. After radiation for prostate cancer, it got worse, going from chronic to acute, migrating throughout my body. Was it aggravated by radiation? Possibly, but the I in CIP sands for "idiopathic. Meaning medicos have no clue what causes it. There is as yet, no real treatments.

I went on a strict plant based diet for a year. It got worse. Medical marijuana--same results. Recently when it went acute causing anxiety, I called my psychiatrist who treats my ADHD. He immediately called in 10 mg. Remeron to help with sleep and diminished appetite and ½ mg Xanax 3X a day if CIP goes acute. My PCP upped Gabapentin to 600 mg. 3 times a day. Along with daily prayer and meditation, I haven’t had an acute case in over two weeks.

Welcome, Wade Senior!:)

Congratulations on possibly having found the path to being free of pain. I hope your good luck will hold.

Sometimes with pain I find that I have to try first one thing and then another and keep on tinkering until I find something that works.

Welcome to the forum and sorry for your diagnosis. Yes, neuropathy is such a beast. One day, you think everything is under control, and the next day you are suffering again. My case is something similar. After months of remission, I have begun to have flare ups again. Done a ton of blood tests, MRI, Nerve conduction studies to no avail. my doctor thinks it is all stress and anxiety related. This forum has helped me a lot and it is a warm feeling to know that you are not alone in the battle, if at all. No medications , but supplements (alpha lipoic acid, acety l carnitine, omega 3 , B12 ) have helped to some extent.

and yes, diet.. It has also helped me.. I got a positive test for gluten antibodies, so, I am on a gluten free diet right now , ..So, worth exploring that option as well, including checking for diabetes/prediabeties.
Nobody knows, where this will lead to, so keeping fingers crossed and hoping for the best .. This disease requires a lot of self-research and self -introspection that is what I have learned in the last two years

the diagnosis and treatment article was great...

I've had this peripheral neuropathy for a year now. I'm 61. It was a gradual progression over several months. I've had every test under the sun. My diagnosis is idiopathic. I can't wear socks or shoes. I wear Birkenstock sandals. I can't walk very far. It stems from the balls of my feet, which feel swollen, wooden & numb. I can't walk flat foot anymore. I can't exercise. My feet cramp, burn & vibrate like a cell phone. It's constant all day until I fall asleep at night. It's difficult to take a shower. It's constant physical & mental torture. I take Gabapentin & it only works about 50%. I've tried all the other usual medications. They either don't work or I have a reaction. Until this hit me, I was a hiker. I climbed all 67 4000 footers in New England, several many times. I'm very depressed & sad. The outlook for my life is dismal. I'm glad my kids are grown & on their own. I go to work & suffer, then come home & sit to watch TV until I go to bed. You aren't alone in this.

Welcome Mary.Lucie. :welcome_sign:

Possibility for HaveMercy
 

I did read that you had PN, but have you ever heard of something called Erythromelalgia?

I have severe stenosis in the lumbar and cervical areas at multiple levels but I also have had a couple episodes of Erythromelalgia. My hands and feet got so hot I couldn’t shower (Unless I had a cold water shower) and I couldn’t seem to get them cooled down. It passed after a few days.

Just thought I would mention it. It’s something you can look up and see if it makes sense for your situation.

I do hope whatever it is that it resolves itself soon.

Your experience sounds very similar to mine (mine came on overnight, too). How are you doing now?

So so familiar
 

A great support post many thanks to all that have contributed.
I had a letter from my Neurologist yesterday here in the UK and she has used a clinical diagnosis of Peripheral neuropathy. She is sending me for nerve conduction studies but says even if negative the diagnosis is confirmed...

When nothing else works try acupuncture. It's helping way more than anything else. Gotta change yer diet. Real radical until symptoms are gone. Then you can decide what's b3st going forward with the food. Be well soon.

I feel ya. I am just checking back on this site for the first time in months. I had a similar experience in April 2020. Prior to this I had tingling in my heels for a little less than a year. Then after a few days of buzzing deep in my groin, below my genitals, I suddenly had full blown sensations over my entire body. I saw a local neurologist a couple of times over the next 3 months. THen I finally went to a specialist in Jan 2021. I had a skin biopsy, nerve conduction, multiple blood tests. NOTHING could be found. The biopsy showed "axonal" swelling. On exam, my sensation tests, pin prick tests, vibration tests were essentially normal. I feel no weakness. I am 2 years since the prickling in my heels and a good year and a half from the full blown body wide sensations. They put me on nortriptyline and GABAPENTIN (only 300 mg/day). I am maybe slightly worse...the sensations are not more intense, just more regular and simultaneous. I even get sudden irruptions of red patches all over my body. Sometimes my skin turns mottled, or red from pressure that it never did before. Stress definitely makes me notice it more and if I let it, drives me crazy, but I don't think stress makes it occur more...if that makes sense. If I am worse, it is only slightly...it's hard to know. I still get wicked depressed over it. I will see the neurologist for a follow up in Nov 2021...but deep down I believe I will just have to learn to accept this. AT the last appt, the neurologist said it could be SFN, but at a level below what their tests can confirm.

Thanks for your response and support.! I was a casual drinker, but I don't drink anymore now for a year. Got to where just a couple of drinks would make me feel lousy.

Welcome, hopehospital!

Welcome hopehospital. :Wave-Hello: