Sensory only peripheral neuropathy with weird symptoms
 

Hi all

Thanks for the opportunity to tell you a bit about what is currently happening. I have had a relatively quick onset of peripheral neuropathy affecting mainly my hands and feet for the first 4 weeks, burning, pins and needles and numbness being the main symptoms. These are sensory only.

Now over the last couple of weeks have had episodes where my right arm feels sort of numb and heavy but I still have full use of it. Also achiness around certain joints or parts started with elbows and AC joints (near shoulder) but now in back, knees, hips and occasionally across shoulders at back. These often feel like sunburn or like a bit of a strain/ache. Sometimes I feel it in my forearm and thighs and they are only for a minute or two at a time.

Had three lots of blood tests ruling out all inflammatory markers, diabetes, vitamin B12, connective tissue, vitamin levels fine and have just had a Lyme disease blood test. Awaiting a nerve conduction test but not for another 6 weeks. While the burning has sort of decreased since the onset. I'm worried about the numbness in my hand, arm. No musculoskeletal problems I know of, no swelling, redness or morning joint pain.

Neurologist said to push on with exercise as long as it doesn't ramp up the symptoms. He seems to think it will resolve with time but worried about these new symptoms. Any advice greatly appreciated.
;)

Morton Epsom Salt Lotion
 

It sounds like your Neuro is a common sense Dr. Even if Idiopathic, not much treatment options anyway. Sounds like your nitrition has been good. I used this lotion on burning and tender skin surface. It's not much help but every bit counts. Good Luck, Ken in Texas.

Joint pain with peripheral neuropathy?
 

Has anyone experienced an ache in both hips or their ACJ joints by their shoulders at night particularly? I have also experienced some positional type pain. Is that normal?
;)

So you can't come up with WHY this all came on. Were you by chance taking the class of abx like Cipro or Levaquin. This class of abx have caused so much joint damage. I've never taken them but have heard from many who have.

In the beginning my legs would sometimes feel like they were full of cement and I still had full use of them.

Your mentioning it feels like sunburn describes burning to me. How does it differ from your regular burning symptom? My burning sometimes feels like a sunburn.

Have you had any MRI's? I ask because of the achiness you describe. I know you said there was no muscular skeleton stuff you were aware of, but you can have issues without pain. I did.



.

Two different types of pain
 

I had the burning skin, zapping, shocking in the legs and feet plus Lumbar pain and hips,buttocks.knees that was a deeper "bone" feeling type pain. My PN was kick started by car wreck plus being an out of control diabetic. The "bone" pain was eventually addressed with Hydrocodone. All else was assressed w/Gabapentin and cremes. Hope this helps, Ken in Texas.P.S. I write in the past tense because almost all symptoms have changed as I am two and a half years into this.

Thanks for that, no very lucky in terms of medication. I only take the occasional Ventolin for asthma and amitripyline for the nerve pain but nothing else. Try to avoid all drugs as much as I can. Appreciate the reply. ;)

[QUOTE=pinkynose;1183823]In the beginning my legs would sometimes feel like they were full of cement and I still had full use of them.



Your mentioning it feels like sunburn describes burning to me. How does it differ from your regular burning symptom? My burning sometimes feels like a sunburn.

Have you had any MRI's? I ask because of the achiness you describe. I know you said there was no muscular skeleton stuff you were aware of, but you can have issues without pain. I did.


Hi there. Thanks for your reply, the sunburn sort of feeling I get is particularly across the back and it seems to be like a positional thing. It is sort of a stingy feeling when I first get to bed and then it sort of feels fuzzy and warm. Whereas the burning thing I get is sort of sharp and goes from one joint to another or down from my wrist into my hands.

I think an MRI is a good idea. I am going away for about 10 days so will see if a complete change of scenery changes the joint pain. I only get the aching pain at random times and it doesn't seem to be related to exercises. I have done a few marathons in the past so I guess hip pain could be related to that, it is just strange that it has come on after I have stopped running for 2-3 months at night.

Thanks for that, I have been on amitripyline and do find that cremes help especially natural ones with arnica etc. Did they find any bone or musculoskeletal problems? How are you now?
;)

Weak legs
 

The "bone" pain was neuropathy also. All pain has changed and no longer on any pain meds. I am left with weak legs and pain that is tolerable. Thanks, Ken in Texas.

numbness in arm
 

Hi there. Just wondering if anyone has had symptoms of their arm feeling like it's going to sleep. It seems to start in the wrist and hand and progress to my shoulder, right arm mainly and then over a few hours it seems to go away again. No motor loss. Appreciate your help. ;)

I have carpal tunnel and my right hand and wrist would feel like it was falling asleep sometimes. I try now to limit my time on the computer. My doctor recommended a brace for my wrist if it continued but it is much better. I think MrsD had a brace she mentioned on a post.

Symptoms in my feet and legs and low back started and then shortly after my arms and hands. I originally thought it was strange but now I feel once your nerves are inflamed it can happen anywhere. I think inflammation (and gut health) is key in my SFN.

I second what Pinkynose said, especially about the gut health. This is so important.

At one point a few month ago, after an injection for a brain MRI, and some other drugs, because I had a reaction to it, both my arms from wrist to elbow went numb as though they'd fallen asleep, or perhaps it was the day after the MRI. It lasted throughout the day and went away the next day.

I would just reiterate what Pinkynose said: I have symptoms that are new and strange and come and go all over, including on my head and face, like on my tongue right now as I write this.

Hope that helps and hope your symptoms improve!

[QUOTE=pinkynose;1185925]I have carpal tunnel and my right hand and wrist would feel like it was falling asleep sometimes. I try now to limit my time on the computer. My doctor recommended a brace for my wrist if it continued but it is much better. I think MrsD had a brace she mentioned on a post.

Symptoms in my feet and legs and low back started and then shortly after my arms and hands. I originally thought it was strange but now I feel once your nerves are inflamed it can happen anywhere. I think inflammation (and gut health) is key in my SFN.[/QUOTE

Yes I agree my diet does need some work, going to see a nutritionist before Christmas. It's really freaky when you get new symptoms, have you been working on specific things on your gut health, like gluten free? ]

Yes it's strange and sometimes freaky when they appear anywhere. I fell over and banged my knees a few days ago and felt hypersensitivity there and burning even though healing well. I originally thought it was carpal tunnel but sometimes symom's go up past my elbow and into shoulder. What have you done with respect to gut health and inflammation?

[QUOTE=kazzak21;1185979]1) Gluten is not a real issue for me but sugar is so I try to be white flour free. White bread has very little fiber and a lot of sugar and it converts to sugar pretty quickly. When I do I eat gluten I go for whole-grains, which are fiber-rich and my body has to work harder to break down and longer to turn them to sugar.
2) No artificial sweeteners
3) I don't eat processed meats and stay away from packaged foods that have ingredients I've never heard of and can't even pronounce.
4) I try to eat foods that keep my system alkaline and avoid ones that make me acidic or at the very least balance them out at meals. If you need more info on this PM me.
5) I eat fruit but I don't drink fruit juice because I am aware of the sugar content.

I feel the biggest enemy to gut health is sugar.

I am nowhere near perfect on this. I do the best I can but when I cheat I do try to do so knowingly. Hope this helps.

I mostly deal with inflammation by diet, as I wrote in the other post. I do take Omega 3's(making sure the ratio is what it is supposed to be,) and I use Coconut oil. I also have a little Coconut butter when am low energy. (I do not believe in 0 fat or very low fat foods as our bodies need fat. Those foods seem to have all kinds of harmful ingredients added to make up for the fat that has been taken out anyway.)

I was taking Curcumin, but it made me itch. It is reported to be good for inflammation. Hope this helps.
carol

Thanks for this information, will keep trying to change my diet. I have to get more omega 3 in my diet, my diet at the moment is to be honest pretty bad thanks for the tips. ;)

[QUOTE=pinkynose;1186010]

I have trouble keeping to just a few words. Sorry!
 

I understand about having a sweet tooth. I have a mouth full of them! And full disclosure, I have not completely eliminated sugar, I cut way down and make more sensible choices most of the time.

It is hard to answer because my symptoms had gotten better by the time I finally accepted that I needed to cut out/down the amount of sugar I was ingesting. What I do know with certainty is that whenever I take in too much sugar my burning is much worse and extends to my hands and the stabbing pains I rarely get anymore begin to show up. It also causes me to have disrupted sleep.

I do not know if you have discovered a cause for your neuropathy. Mine is believed to come from my lumbar spine, but that is only a best guess. I see a chiropractor and a PT for that. It made no sense in the beginning to me that sugar or diet would play a role in my symptoms if they came from my spine. I now know that because of my spine my nerves are inflamed and irritated and anything I can do to reduce that inflammation will help my symptoms.

A little about Sugar, and the Brain:

When sugar is eaten the bacteria in your intestines, which make B vitamin complexes, begin to die. When the B vitamin complex levels decrease, a compound known as glutamic acid is not processed. Glutamic acid is one of the main components of brain function.

Refined sugar is not a food-- it is a chemical.

Here is an short article on sugar. It's mostly about mental health but it does include neuropathy. There are many others on credible sites. It states. "When refined sugar is consumed over a long period of time, the resulting chronic low level of available glutamic acid and consequent impaired glutamic acid utilization is associated with various neurological disorders such as Parkinson's disease, neuropathy, depression, epilepsy, and schizophrenia."
http://amazingdiscoveries.org/H-dece...mental-illness

Is this really peripheral neuropathy or something else
 

Hi everyone

Just an update, had a nerve conduction test last week and it came back totally normal. Some days pain is getting much better in terms of burning and numbness which hasn't been as prevalent.

However 2-3 times a week seem to get flare ups. Usually starts in late afternoon with burning in the feet. Then start to get pain random burning and achy pain in both wrists, fingers, toes, ankles, hips and elbows. This can get very intense and lasts hours now even there when I get up in the morning. Doesn't seem to be related to exercise. It can go from two toes for 20 secs, into ankle for another 20 secs, into one wrist 20 secs etc. Feel like it is affected by pressure in bed and I want to click it to ease it.

Any ideas, all bloods fine, no swelling, no redness, sensory only symptoms still, having vitamin B12 injections, working on diet. All inflammatory and connective markers normal. It is just very annoying any suggestions appreciated as it is starting to drive me nuts!

I had three normal nerve conduction studies, before a neurologist, the third I had seen, said this is silly and that I clearly have small fiber neuropathy. So he did a skin punch biopsy, which is how you diagnose SFN. SFN does not show up on nerve conduction studies that pick up damage to larger nerves. Hope this helps.

Acute onset small fibre neuropathy. I have been reading an article which seems to have a lot of my symptoms. Has anyone else heard of this before? The article is:Acute small fibre sensory neuropathy: another variant of Guillain-Barré syndrome? Here is the link.
http://jnnp.bmj.com/content/72/4/540.full

Would appreciate any feedback on this or any experiences of similar symptoms...

Yes--
 

--this is apparently approximately what happened to me: an acute onset (hours/days) rapidly spreading small fiber neuropathy that began distally but eventually encompassed the whole body.

Not a variant of Guillain Barre syndrome per se--Guillain Barre is primarily a demyelinating process, and this by definition involves an attack on the small, unmyelinated sensory fibers that subsume the sensations of pain and temperature (and most autonomic functions)--but analogous to it in presentation.

I also had acute onset, although other odds things had happened leading up to the day I woke up feeling like I was plugged into a electrical socket.

My symptoms are not as severe now as they were for the eight months after onset, but they're with me daily, and some days worse than others.

I had a very fast onset also. However, I did have low grade symptoms leading up to that not so glorious day on Feb 19, 2014. It was like someone tied a noose around my ankle and was pulling it tight all day long. I felt sick, cold, and electrical; and it felt like someone ran electricity through my spinal column. A few days later, I had symptoms all over, including my face. Then over the next 3 months things went off the rails - intense burning broke out all over the place to the point where I wouldn't sleep for days at a time.

I recently tested positive for Lyme disease. I've seen significant improvements with antibiotics and Low Dose Naltrexone to the point where all the burning is subsiding and I'm starting to get my life back.

It makes me happy to read this: "I've seen significant improvements with antibiotics and Low Dose Naltrexone to the point where all the burning is subsiding and I'm starting to get my life back."

Thankyou all so much
 

Hi all

Just an update about these weird symptoms I have been having. I am indeed very fortunate, my symptoms remained sensory for the past 4 months but today I celebrated my first run without numb feet. My symptoms have continued to slowly but surely reverse. I am almost convinced now that I had some sort of virus that was attacking my sensory nerves and that they are now fighting back. I still get some numbness and occasional burning in my feet but the hip joint pain and hand stuff has just about abated. Thankyou for all of your help and I really appreciate your support....It just goes to show that at least some sensory neuropathies can be reversed!:winky:

This is excellent news! My symptoms started around the same time as yours and are almost identical. All tests have been normal.

Are you still seeing improvement? What do you think is helping the most?

Flare ups again
 

Hi there. Yes my symptoms almost disappeared for three weeks and just had the odd burning and tingling in feet and hands. However over the last three weeks have returned with a bit of vigour.

They are weird and annoying. Sensory only still but seem to affect my joints as well particularly the ac joints and the ankle joints accompanied by burning and tingling. Where are you at with your symptoms?
:winky:

i wonder if the reduction in burning, would be the numbness or loss of sensation setting in. It seems that with neuropathy, people have increased sensitivity to pain as well. it seems that your PN isnt progressing as much as other peoples here. The joints do seems suspicious a little bit though.

Is it possible to have a neuropathy and joint problem that occur at the same time
 

Thanks for your reply.

Has anyone with peripheral neuropathy had the following symptoms? Had problems mainly sensory for 6 months now. Had a real annoying flare up over the past 3 days. Here is what has been happening:

1) Wrist pain - a burning like a band around my wrist and sort of an ache that sometimes goes into my fingers but is almost constant, both sides but worse on the right. When I type it feels like carpal tunnel with me almost being able to feel the nerves going through the carpal tunnel.
2) Ankle pain - a burning like a band around my ankle and just above the ankle with the toes feeling like they are on fire even at rest, this can extend over the front of the foot into a sock like symptom and into the bottom of the foot, numbness, both sides but worse on the left - I can sometimes feel the ankle bones ache (These two symptoms make up 80-90% of my problem)
3) AC joint pain - deep burning or ache around the front, mainly right
4) Left hip pain - deep burning or ache which sometimes goes into the butt
5) When I walk I can get altered sensation in the bottom of the foot always in the front and never in the heel. Particularly noticeable when I try to run.

Had 3 x comprehensive lots of blood tests - nothing was elevated, entirely normal including rheumatoid markers. These were done as recently as two weeks ago the last set. :winky:
Nerve conduction test normal - neurologist puts it down to a post viral polyneuropathy.
First Lyme test was inconclusive awaiting on 2nd result but ANA was normal on ordinary bloods.
No swelling, no redness, no loss of function - appears only to be sensory. I take B12 supplements 1000mg every day

I am so frustrated any thoughts would be greatly appreciated.:winky:

I'm in the same boat when it comes to the tests and potential diagnosis. I had the flu around the time I started to notice the tingling. Fast forward a few months and it started causing my joints to ache. No inflammation though.

Do you have any inflammation or atrophy in your joints, kazzak21? How about leg muscle tightness?

Fast forward to a year now and it's still around the joints but also a lot of tight muscles. Stretching really helps but not for long.

Oh rats. I'm sorry it's back again. That's why I asked. It comes and goes sometimes. Whatever "it" is.

Hang in there.

Thanks for your reply. It feels like inflammation but there are no signs of it, no atrophy either.

I don't seem to have much muscle tightness. When you get it in the joints - what joints are affected? Are you taking anything for it? I have tried anti-inflammatries but they don't seem to make any difference.

I haven't had an MRI yet, do you think it is worth pushing for one?

Any ideas would be greatly appreciated. I thought about trying some antibiotics or maybe asking my GP for prednisone to see if it made any difference. :winky:

Before trying antibiotics, prednisone, etc
 

I would push for an MRI (cervical and lumbar as well as hip.) It is not invasive and may come up with something significant. If you are a marathon runner it is just a logical place to look imo. For me it now looks like my neuropathy could be from a combination of a herniation at T12 and many issues in my lumbar. When this first started I also thought I had a virus that was attacking my sensory nerves because I had 2 bad attacks of fever blisters (Herpes simplex virus 1) close together right before it all began. I even took drugs for it but it did not help with my symptoms.

I have no inflammation either. And it's good to know you don't have atrophy.

Almost all major joints were affected at one point or another. Right now it is the ankles and knees. Some nerves pass through the hip so every time I compress the hip (with belts and such), my symptoms tend to increase.

Lyrica didn't do much but it probably helped with the muscle spasms I occasionally have. But it made me zombie-like and cost a lot. Aspercreme has done wonders for the dull achy pain I get. Stretching helps too. NSAIDs don't do much for me either.

Push for an MRI! Mine showed mild herniation in the cervical and L5-S1 Lumbar. I don't think it's enough to describe the symptoms but something's up. Plus there is usually no contrast so it's short and pain free. ;)

Hi there

Thanks for your replies. Yes, will push for an MRI, my problem is as a physiotherapist I have had my left hip tested and have full ROM and no deficits in strength, all clinical tests for OA etc seem to be negative. I have quite a light frame and do all of my running off road.

This is what I am currently doing: Taking 1000mg B12, taking epium 5mg at night to help me sleep. I am running for 30 mins off road 3 x per week, playing the odd game of tennis. Whether or not I exercise does not seem to make any difference to the symptoms and makes me feel better psychologically. I do get some numbness in the feet particularly in the front near the top of the underside of the foot. I didn't exercise at all for 6 weeks and it made absolutely no difference. The only thing I have found that seriously annoys it is deep tissue massage as weird as that may seem.

I have also started lightly rolling my ITB, calves, hamstring and butts with a roller which seems to make a difference and twice daily stretching particularly of the calves, wrists and shoulders.

My biggest concern and I would appreciate your thoughts: with this joint aching which has no rhyme or reason, does it result in any functional loss? AT the moment mine seems to be only sensory. This is my most vital question, I am 47 nearly 48 and cannot afford to lose my career which is quite demanding on your hands and arms. :winky:

what are you b12 levels?. it seems that messaging is helping your symptoms, you should continue that. Getting an MRI, WOULD rule out or confirm if there is spinal joint/disk disease, which can cause your symptom. i suspect my pn is being caused by spinal damage, as i recently as few weeks ago, starting to get more pain.

The main reason I suggested MRI of the hip was because of your hip pain. It wasn't necessarily to find the cause of your neuropathy symptoms. The two may not be related. I just figured if the doctor was ordering MRI's maybe another wouldn't hurt. I should have mentioned this and I'm sorry I didn't.

I had deep burning and/or ache in my hip which sometimes went into my butt like you describe. I also had severe stabbing pains intermittently. I had full ROM, and no decrease in strength. I had an x-ray which showed a cyst in my hip that was causing my hip problems. We wanted to look at the soft tissue also so that was why I had an MRI. By finding the cause of my hip problem I have been able to stop that pain which was at least one less thing to deal with.

It has been my experience that sometimes things pop up that I have thought to be connected to my SFN. I have learned through this experience that these issues are not always related.

My symptoms came on suddenly, lasted six weeks, then subsided to about 95-99% gone for FOUR MONTHS. The boom, back and have been back for six months now. This thing makes no sense!

I'm also a runner, and just wondering if maybe some of the joint stuff could be unrelated running stress or injury? Just an idea...