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sinjin
@sinjin

Posts: 13
Joined: Aug 10, 2018

Seeking help, information, support...

Posted by @sinjin, Fri, Aug 10 10:30am

I am going to apologize now for how long this is going to be. Back in late Winter, early Spring 2016, I developed a pins and needles feeling in my feet. I also felt like I was wearing a sock on my left foot that was not there. The pins and needle feeling would come and go. It caused me more anxiety than anything. I saw a neurologist in May 2016 and it was discovered I had a Vitamin D deficiency. I was given a script for Vit D, take a supplement every day, and that fixed the problem.

We now jump ahead to January 2018. I had at at least two occasions where my left foot kinda felt numb. One time I was outside and it was VERY cold. I soaked the foot in warm water and fixed the problem. This happened again while I was INSIDE the house. Again, I put my left foot in some warm water and it was back to normal. I didn't give it much thought.

I was taking a shower about six weeks ago and fell out of the tub. Now, I don't remember if I hit the side of the tub and THEN fell on the floor of I fell right on the floor. In any case, I landed on my rear end outside the tub. I did NOT hit my head. The fall was kinda hard. I had no back or leg pain right after the fall or since then. The only thing I had worth noting was a pins and needle feeling in one of my left fingers for a few minutes a day or two after the fall.

We now move to three weeks after the fall. I have been having these intermittent burning sensation/electrical shocks in my feet. The pain level is about a "1." It has NOT affected balance, walking, or strength. However, it has done a number on me mentally. I am so freaked out by this. The anxiety has been so bad that I've lost about 20 pounds from not eating. I haven't slept well. The sensations are not constant and, thankfully so far, do not occur at night.

I have done a TON of research online about diabetes and neuropathy. My PCP ran a basic metabolic panel for my yearly physical last month. Glucose came back at 99 (the extreme high end of normal). I also had an A1c done and it came back at 5.4.

Vitamin D and B12 came back normal. TSH was normal. CBD Diff all came back normal except for ABS Mono. The high range of normal is .86. Mine came back at .9. The doc was not concerned.

Last week, I go to see a neurologist. It's the same guy I saw back in 2016. He put me through a basic neuro test. The one thing that I should note is that there was a test where he poked my fingers with a pin. I could REALLY feel how sharp it was. However, as he went down my legs, I could feel the pin, but it felt blunt, for the most part, below the knees on both legs.

I want to take a moment right now to say that my feet can feel the differences in surface texture (e.g. carpet vs. wood floor) and can sense temperature differences just fine. If I am walking outside and step on, say, a pine cone, I can feel it through my shoe.

Last week, the neuro ordered these tests:

ANA by IFA Screen (Negative)

Folate Serum (Normal)

Vit B6 (Normal)

Sed Rate (Normal)

Consequently, he has now ordered his 2nd tier of tests:

Complete Metabolic Panel

ANTI ENA ID

ANTI SSA BLD

ANTI SSB BLD

HEP REMOTE PANEL

HEAVY METALS SCREEn

I have not yet taken those blood tests. I had a new development today where my right arm felt 'warm.' That is the only way I can describe it. I had this same sensation in the right for part of a day about two or three weeks ago. I also have some pain in my middle back a little below my neck.

I don't think that either my PCP or Neuro believe that the fall in the tub is in any way related to what's going on.

From last Saturday through Wednesday of this week I didn't have the burning pain/electrical sensations at all. I was back to my normal self with no anxiety. Then, yesterday, they come back. Again, it's a "1" on the pain scale, if that. It's been off and on the last few hours and now I don't know what to think. Now, the anxiety/worry is back and it's driving me crazy.

Guess what I'm looking for is some feedback or, perhaps, just support, or thoughts on this whole situation. Thanks.

REPLY

I did want to add one other thing. I have read online more than once that it's possible to have a normal FBG and A1c, but be diabetic or prediabetic due to results from an OGTT. I sent the neuro an email about it. He responded by saying that, right now, he does not see anything that warrants running the test or being concerned about diabetes.

For what it's worth, my neuro is part of the Cleveland Clinic, but I have to say it'd sure be nice to be closer to Mayo.

Hello @sinjin — Welcome to Connect. It's good that you have documented what is going on with your health. Journaling is a good way to stay on top of your health and how you are doing. I would write down a list of questions to discuss with your neurologist as a start and maybe you have already had a discussion with them about your symptoms. You are not alone in your symptoms and one of the great things about Connect is learning what others are doing to treat their health problem.

I hope you can share the results of your blood panels once you've had them. Maybe they will provide your neurologist with more information to help provide a diagnosis for you.

John

John,

Thank you for responding. As the day has gone on my anxiety has decreased somewhat because I realize there's nothing I can do right now about what's going on. The electrical impulses are more in the toes now and it's been on and off all day with them after not having had them for five days. Again, the pain level is a "1." I'd like to get some feedback on how concerned I should be about this. As I mentioned before, I can sense hot/cold, different textures of surface that I walk on, and if I step on something I feel it. Perhaps that's just my way of coping with this. The neuro did mention that having hair on my feet is a good sign. He said that two years ago when I first saw him.

I've seen a therapist to help with the anxiety/worry. For some reason, it's just hard for me to deal with this. I've spent so much time reading about diabetes and neuropathy online. The neuro said he's not ready to diagnose me with SFN right now. In fact, the current diagnosis is "disturbance of skin sensation."

I've been around these forums a bit today and would appreciate your opinion/feedback on everything. Thanks.

@sinjin

John,

Thank you for responding. As the day has gone on my anxiety has decreased somewhat because I realize there's nothing I can do right now about what's going on. The electrical impulses are more in the toes now and it's been on and off all day with them after not having had them for five days. Again, the pain level is a "1." I'd like to get some feedback on how concerned I should be about this. As I mentioned before, I can sense hot/cold, different textures of surface that I walk on, and if I step on something I feel it. Perhaps that's just my way of coping with this. The neuro did mention that having hair on my feet is a good sign. He said that two years ago when I first saw him.

I've seen a therapist to help with the anxiety/worry. For some reason, it's just hard for me to deal with this. I've spent so much time reading about diabetes and neuropathy online. The neuro said he's not ready to diagnose me with SFN right now. In fact, the current diagnosis is "disturbance of skin sensation."

I've been around these forums a bit today and would appreciate your opinion/feedback on everything. Thanks.

Jump to this post

Hi @sinjin — My own personal feeling is that when in a situation similar to yours where there is some unknown there is always a little bit of anxiety. I don't think you are alone feeling anxiety of not knowing what's causing the problem. I can't say I'm any different. I just try to take it one day at a time, one step at a time and learn as much as I can about my health problem.

Hoping you find some answers soon.

John

Get a script for Img of clonazepam 1mg tablet and take twice a day . One in the morning with breakfast and the other at bedtime. At first it will make you tired in the morning but that only last for about a week maybe start it on a holiday where you do not have to go to work or anything. It will help your aniexty so much. Have been on it for five years and I know I am addicted but a 71 who cares. Then you will not get so upset when the pain comes back. It does not fix your pain but helps you not get so upset. I use to get so anxious that I would start shaking. Talk to you neurologist about it.

@sinjin

John,

Thank you for responding. As the day has gone on my anxiety has decreased somewhat because I realize there's nothing I can do right now about what's going on. The electrical impulses are more in the toes now and it's been on and off all day with them after not having had them for five days. Again, the pain level is a "1." I'd like to get some feedback on how concerned I should be about this. As I mentioned before, I can sense hot/cold, different textures of surface that I walk on, and if I step on something I feel it. Perhaps that's just my way of coping with this. The neuro did mention that having hair on my feet is a good sign. He said that two years ago when I first saw him.

I've seen a therapist to help with the anxiety/worry. For some reason, it's just hard for me to deal with this. I've spent so much time reading about diabetes and neuropathy online. The neuro said he's not ready to diagnose me with SFN right now. In fact, the current diagnosis is "disturbance of skin sensation."

I've been around these forums a bit today and would appreciate your opinion/feedback on everything. Thanks.

Jump to this post

I think she demand a skin biopsy my neurologist made me wait a year to give me a skin biopsy the only true way to rule in SFN. A lot of them to not know how to do it or not know what the results mine when they get them back . Get the Hopkins kit sorry Mayo but the kit can be ordered by any neurologist.

@user,

Thank you for the replies. I am currently taking 20mg of prozac per day to help me. If needed, I also have .5 mg of Xanax to take once a day as needed. Xanax, like Clonazepam, is a benzo. My doctor said, and I did agree, is that Xanax is not a long-term solution to the anxiety, hence my seeing the therapist. I will take the Xanax at night if I cannot sleep. I try to avoid it if possible. I saw a video recently where someone said the US has 5% of the world's population and consumes 75% of the drugs (I believe the person meant prescriptions). The meds can be a wonderful thing, but, for me, I need to learn to control the worry without having to rely on the meds. After all, they only last for a bit and then the worry comes back.

The neuro is not at the point to order a skin biopsy. There are more blood tests to run. It sucks, but I have to be patient about the whole thing. As I mentioned earlier, the burning/electrical sensations come and go so I do not know what to think. As John said earlier, I have to take it a day at a time.

@sinjin — A website I have found to brighten my day is Resilient Option. It features some great short videos and information by Dr. Amit Sood. Check out the VLOG link at the top right of the website.

https://www.resilientoption.com/

John

Liked by Dee

John,

Thanks again for the reply. Your information is helpful. My elecrical/burning sensations are back after having been gone for a few days. I can feel them more frequently than when they started. That is disconcerting, but what can I do right now? The pain level, thankfully, is the same. Life goes on and I try not to let this get me down too much.

@sinjin – regarding your electrical/burning sensations. I am wondering if these are not the same as what some call the "zappers" or "whooshes". Mine began at about the time of the SFN diagnosis and usually started between 4 and 5 a.m. My neurologist increased the nighttime gabapentin and eliminated the morning dosage. Now I just have the burning in my abdomen and torso upon awakening with no "zappers". I also received what turned out to be great advice from my yoga, meditation and mindfulness teacher. Notice, be aware, observe and welcome the sensation even if somewhat painful. Do not fight it. Don't even move. Just let the sensation wash over or within your body. It will do its thing and then it will dissipate and go away much more quickly. She was right. I am no longer frightened or dismayed by the burning. I just say, "good morning pain" or "welcome burn" and wait patiently for it to disappear. It leaves pretty quickly and I seldom, if ever, have any more episodes during the day.

@artscaping

@sinjin – regarding your electrical/burning sensations. I am wondering if these are not the same as what some call the "zappers" or "whooshes". Mine began at about the time of the SFN diagnosis and usually started between 4 and 5 a.m. My neurologist increased the nighttime gabapentin and eliminated the morning dosage. Now I just have the burning in my abdomen and torso upon awakening with no "zappers". I also received what turned out to be great advice from my yoga, meditation and mindfulness teacher. Notice, be aware, observe and welcome the sensation even if somewhat painful. Do not fight it. Don't even move. Just let the sensation wash over or within your body. It will do its thing and then it will dissipate and go away much more quickly. She was right. I am no longer frightened or dismayed by the burning. I just say, "good morning pain" or "welcome burn" and wait patiently for it to disappear. It leaves pretty quickly and I seldom, if ever, have any more episodes during the day.

Jump to this post

Hello @artscaping . Consider yourself a very lucky guy, I wish I can meditate and make this hell go away. If I do so, I feel more aware of the pain I’m in, what works for me is distraction, I sip through water every 2 seconds to forget, it’s awful.

Your mediation teacher was wise. I am on about every neuropathic pain reliever, and find that meditation is the best thing for controlling my pain.

@arcticmark

"Zappers" is a great to describe what I experience. As I have mentioned, they went away for five days and have been back the last two days. I've accepted it and that has helped me a lot. 'Course my big worry is it getting worse or something new like numbness. My neuro told me none of his patients with SFN are in a wheelchair because that was a fear I mentioned when I saw him two weeks ago. I am going to try your approach with simply welcoming the pain that, thankfully, is very mild for now. I try not to think about if this will get worse or, if so, how bad it could get.

I really appreciate the feedback I am getting. The people here are helpful and encouraging. Thank you!

@arcticmark

Your mediation teacher was wise. I am on about every neuropathic pain reliever, and find that meditation is the best thing for controlling my pain.

Jump to this post

@archer , offff, I want to be in your shoes right know. I tried everything under the sun as well, from massages to acupuncture, to meditation and even hypnosis, yoga and stretching. Nothing seems to work, to the contrary, rubbing makes my small nerves in the skin scream in pain and burn, while anything that reminds me of it causes more chaos. I feel like a cancer patient in his fourth stage , and believe me, I would do and try anything to deal with these madness .
Good lock farther !!

Hello Sinjin, Sorry that you are having to deal with "Zappers," I get them periodically and then they disappear, with I could say the same for my numbness and pain. Pain 24/7. I started with neuropathic pain in my entire back from neck to tailbone and all of the muscles in between. After searching for relief for about 15 years I ended up at Mass General Hospital in Boston where they recommended fusing my entire spine. To see if this would work, I wore a massive brace that prevented any movement in my spine. After a month there was no change in pain. Since there was no evidence that the fusion was going to reduce my pain. As a result, in 1999, I got "Full Catastrophe living by John Kabat-Zinn, began meditating daily, stopped seeing doctors about my back for nearly 20 years. With meditating I was able to seeing what I was doing to increase my pain and I was able to establish parameters on what I am able to do without hurting myself. Definitely a better way to go if you can make it work for you.

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