[Sandy04029]

Hi everyone. I have just joined this support group. I have read a few of your posts and wanted to add my experiences with the hopes that someone has had the same experiences and can tell me what to expect. I began to experience the pain/tingling/numbness in January of 2011. By March it was so bad that I was hobbling all over the place, could not stand to have the sheets on my feet, etc. I talked with my neurologist and he started me on a low dose (75 mg) of Lyrica. My SFN has progressed as it seems to do with everyone. I have been taking 600 mg of Lyrica since approx. 2013 and have tried everything else from Gabapentin to Keppra with no relief except for from Vimpat. I still take 600 mg of Lyrica but cannot take the Vimpat because although it helped tremendously, it was extremely expensive and it made me so loopy I shouldn't have been driving or working and actually lost my job at that time because I shouldn't have been working! I also take Hydrcodone, 10 mg. several times a day. I had back surgery in 2013 and 2014 but my neurologist has said my neuropathy is NOT related to that at all. I am not diabetic. I have had numerous blood tests and I have had the biopsy done and sent to Johns Hopkins, who found nothing wrong. This is the most painful thing I have ever experienced. Right now though most of the areas of my feet feel totally numb, I still experience "break-through" excruciating pain. I also have numbness running up the side of legs from my feet towards my knees, but thankfully no pain there. My greatest fear is that some day I will no longer be able to walk and will end up wheelchair bound (though my neurologist assures me he has never heard of anyone with SFN ending up in a wheelchair!) Who has had SFN the longest on this forum and who takes what drugs with relief? I promise not to be so wordy in future posts. Thank you in advance for your replies!

[Ragtop262]

Hi Sandy, welcome to the forum. Unfortunately, I don't really have an answer to your question. I've only had the SFN for about a year, and haven't progressed as far as you. I'm only on Gabapentin and various supplements at this time. It's been a roller coaster ride. Just last week I posted about how things were getting better for me - then this week they turned bad again in a hurry. (I guess I jinxed myself - I'm not planning on sharing any good news in the future. ) Hopefully, someone else can add some better info for you.

[Sandy04029]

Thanks, Ragtop. I just get totally discouraged at times. Just when I thought the pain was gone due to the numbness, the pain comes back with a vengeance! It is unbearable and seemingly unending! Just wish I had a medication that would actually work.

Is there anyone else out there that can share with me?

[Susanne C.]

I am sorry that you haven't gotten more replies, sometimes posts fall through the cracks or the regulars are out of touch.
As you have learned, numbness is no guarantee of no pain. In fact the more numb you are the more faulty signals seem to get through the nerves. My feet and legs are so numb that I used to stick pins into them just to see how bad it was. I still get severe burning and zapping pains as well as strong shooting pains and muscle aches.
There has been considerable discussion on this forum about SFN that doesn't show up on the skin biopsy. The biopsy requires a very significant drop off in nerve fibers to be positive, a negative result may mean that you are approaching that point but aren't there yet. Unfortunately without a positive skin biopsy you may not be taken seriously for pain management, although it sounds like your neurologist accepts it as SFN despite the result.
I have hereditary sensory motor neuropathy (Charcot Marie Tooth-CMT). Have they ruled that out in your case? I have been symptomatic since childhood,have had the numbness for about 20 years. I am 53. The numbness started in my toes and has progressed to hip level, being total from the knees down. My skin biopsy showed no nerve fibers below the knee, breaking down at hip level. My EMG is also abnormal as this causes large fiber damage as well.
You are unlikely to end up in a wheelchair from this- it is the large fiber neuropathy that causes muscle wastage. I wear leg braces now and expect to be in a wheelchair at least part of the time within a few years, but this has been a life-long process for me.
Small fiber neuropathy can be hideously painful. The safest pain relief and some of the most effective appears to be marijuana for those with safe, legal access to it. There is a big discussion on that subject here,
People are generally reluctant to discuss their pain medication as it is always best to stay with the minimum effective combination, but generally after establishing a patient on Gabapentin or Lyrica, doctors will want to add an antidepressant for its pain relieving qualities. A long acting opiate like OxyContin or MS Contin or a patch like fentanyl or BuTrans would be the last resort with a breakthrough medication such as your hydrocodone for extraordinary pain or extra activity which induces pain. Breakthrough pain is defined as pain that "breaks through" despite a 24 hour pain regime.
The bottom line for most prescribers is quality of life, does the medication enable the patient to be more active or does it turn them into a cabbage? For me it allows me to cook and do some light housework for a family of 5, go for walks, run a few errands close to home.

[uglogirl]

Hi Sandy. My neuropathy is diabetic related so I know the cause. I am so sorry you are going through so much pain. I know what thst is like and I too have taken oxycodone but not very often as that too can cause problems.

When my feet are real bad I pit them in a bag of ice. I had a compound that helped o would rub on a couple time a day
I rub Ben gay on them and put medicated powder on them and take a couple acetaminophen if that does not help I take oxy codone. Stress will give me flare ups as ND wrong foods exercise too a greatest them. When I sit they will flair up you have to figure out the triggers.

Sent from my SAMSUNG-SM-G900A using Tapatalk

[Healthgirl]

Hi Sandy,
I also have SFN with no found cause. It started about 2 years ago with autonomic symptoms and then a year ago it progressed to nerve pain shooting throughout my body, buzzing, numbness.... Too much to write, you can look back at all of our old posts to see more details for all of us. There are many of us here with neuropathy that can't be figured out and who are struggling to cope with it. There is so much great advice here and people who have years of research under their belts. Some people here know as much or more than most of the doctors I've been too.

[Sandy04029]

Originally Posted by Susanne C.

I am sorry that you haven't gotten more replies, sometimes posts fall through the cracks or the regulars are out of touch.
As you have learned, numbness is no guarantee of no pain. In fact the more numb you are the more faulty signals seem to get through the nerves. My feet and legs are so numb that I used to stick pins into them just to see how bad it was. I still get severe burning and zapping pains as well as strong shooting pains and muscle aches.
There has been considerable discussion on this forum about SFN that doesn't show up on the skin biopsy. The biopsy requires a very significant drop off in nerve fibers to be positive, a negative result may mean that you are approaching that point but aren't there yet. Unfortunately without a positive skin biopsy you may not be taken seriously for pain management, although it sounds like your neurologist accepts it as SFN despite the result.
I have hereditary sensory motor neuropathy (Charcot Marie Tooth-CMT). Have they ruled that out in your case? I have been symptomatic since childhood,have had the numbness for about 20 years. I am 53. The numbness started in my toes and has progressed to hip level, being total from the knees down. My skin biopsy showed no nerve fibers below the knee, breaking down at hip level. My EMG is also abnormal as this causes large fiber damage as well.
You are unlikely to end up in a wheelchair from this- it is the large fiber neuropathy that causes muscle wastage. I wear leg braces now and expect to be in a wheelchair at least part of the time within a few years, but this has been a life-long process for me.
Small fiber neuropathy can be hideously painful. The safest pain relief and some of the most effective appears to be marijuana for those with safe, legal access to it. There is a big discussion on that subject here,
People are generally reluctant to discuss their pain medication as it is always best to stay with the minimum effective combination, but generally after establishing a patient on Gabapentin or Lyrica, doctors will want to add an antidepressant for its pain relieving qualities. A long acting opiate like OxyContin or MS Contin or a patch like fentanyl or BuTrans would be the last resort with a breakthrough medication such as your hydrocodone for extraordinary pain or extra activity which induces pain. Breakthrough pain is defined as pain that "breaks through" despite a 24 hour pain regime.
The bottom line for most prescribers is quality of life, does the medication enable the patient to be more active or does it turn them into a cabbage? For me it allows me to cook and do some light housework for a family of 5, go for walks, run a few errands close to home.

Susanne, thank you so much for your response. I am fairly certain I do not have CMT. I have had extensive blood work through the years and I think that certainly that would have shown up. Someone else had suggested use of a cream or balm on the feet. I forgot to mention that I have had two back surgeries (unrelated to the neuropathy), one in 2012 and a second, larger, in 2013. As a result, I cannot bend over to rub anything on my feet, not even lotion which stinks as they tend to get very dry. I even see a podiatrist just to get my toenails clipped. I cannot use a foot therapy massager as I am not allowed to bend or to lift more than a gallon of milk. My life, as I once knew it, is totally gone. I am 66 years old now and have really never been so depressed about the rest of my life. With this pain combined with the back surgeries, I am so limited now with what I can do. I am still working full time and intend to do so for as long as I am able, but there is really nothing more for me. Thank goodness for my neurologist. He is wonderful and has been so helpful. He has tried what seems to be every drug known to mankind to help me with this SFN but really at this point I am not having much success.
Several times I have had a weird experience where my legs go wobbly and it feels like they will go out from under me. I sit down on the closest thing and wait for it to pass. It happened again this morning and this time with the occurrence was a large amount of pain. I need to pass this on to my neurologist and see if he can diagnose this new problem.
I hate sounding like such a downer, I've always had a "sunny" disposition.......all of my life. That's why I hate what my life has become. It's just not me. Sorry for the ranting. I'm done now. Thanks again for your response.

[Kitt]

DNA blood testing would be in order if it was thought that you have CMT. There are over 70 types of it that they can test for. Any family history as to what you are experiencing? But most of us have the most common types. The DNA blood testing is done by athena diagnostics for one. Very expensive.

Hope you find an answer. I have CMT.

Kitt

Originally Posted by Sandy04029

Susanne, thank you so much for your response. I am fairly certain I do not have CMT. I have had extensive blood work through the years and I think that certainly that would have shown up. Someone else had suggested use of a cream or balm on the feet. I forgot to mention that I have had two back surgeries (unrelated to the neuropathy), one in 2012 and a second, larger, in 2013. As a result, I cannot bend over to rub anything on my feet, not even lotion which stinks as they tend to get very dry. I even see a podiatrist just to get my toenails clipped. I cannot use a foot therapy massager as I am not allowed to bend or to lift more than a gallon of milk. My life, as I once knew it, is totally gone. I am 66 years old now and have really never been so depressed about the rest of my life. With this pain combined with the back surgeries, I am so limited now with what I can do. I am still working full time and intend to do so for as long as I am able, but there is really nothing more for me. Thank goodness for my neurologist. He is wonderful and has been so helpful. He has tried what seems to be every drug known to mankind to help me with this SFN but really at this point I am not having much success.
Several times I have had a weird experience where my legs go wobbly and it feels like they will go out from under me. I sit down on the closest thing and wait for it to pass. It happened again this morning and this time with the occurrence was a large amount of pain. I need to pass this on to my neurologist and see if he can diagnose this new problem.
I hate sounding like such a downer, I've always had a "sunny" disposition.......all of my life. That's why I hate what my life has become. It's just not me. Sorry for the ranting. I'm done now. Thanks again for your response.

[glenntaj]

--did you have your back surgeries?

I ask because it seems to me premature to dismiss your back/spinal issues from contributing to your neurological symptoms; really extensive imaging and nerve conduction studies might be called for, as problems with the peripheral nerves can produce symptoms that can be exactly mimicked by problems with the spinal cord or the nerve roots exiting from them. The distinction is basically "how far up" (meaning how close to the central nervous system) the problem lies, and this is not always easy to determine.

[Sandy04029]

Originally Posted by glenntaj

--did you have your back surgeries?

I ask because it seems to me premature to dismiss your back/spinal issues from contributing to your neurological symptoms; really extensive imaging and nerve conduction studies might be called for, as problems with the peripheral nerves can produce symptoms that can be exactly mimicked by problems with the spinal cord or the nerve roots exiting from them. The distinction is basically "how far up" (meaning how close to the central nervous system) the problem lies, and this is not always easy to determine.

The first was a simple fusion, 4 levels however, the hardware quickly failed and the second one was much more extensive, from the neck to the tailbone (LITERALLY) I don't know the levels, i.e. L-5, C-6!! I just know I was under anesthesia for that one for over 20 hours over at Jackson Memorial in Miami. It was a back/front/back surgery in that they went in the back first to remove the faulty hardware (they discovered broken and loose screws), then they went in through the front to fuse then finished up fusing in the back. There was a complication which is why I was under for almost a full day. My neurologist has assured me the spine surgeries are not the cause of my neuropathy. We've done so many tests and tried so many different drugs I feel like I'm his "test case"! He's been very good with me. It's just disheartening when I realize that this is the way I will spend the rest of my days and nights - in constant pain. I like Susanne's suggestion that pot has helped some. I was never a pot smoker, but if it gives relief, I'm guess I'd be willing to give it a try, who knows.