It just so happens that I have a doctor appointment next week and I have (finally) decided to tell the doctor to either do something to help me, or I want a new doctor.
I have been through the gabapentin, lyrica, tramadol route. I've done the diet/exercise route for years and nothing has helped. Right now I am taking nothing for pain because we are out of options. The doctor seems to think I'm feeling fine, but realistically, I am really at the end of my rope. Don't think I can get through a winter like this. There has to be something else he can do.

So how do I get it through to the doctor's head that exercise makes it worse without sounding like a nut case. He has always looked at me with disgust that there must be something I can do to exercise. He insists that exercise is the ONLY thing that will help.

How can I express to the medical people that this has gotten to a critical phase.

Sorry to be so long winded, but so through with this.

Hey LM
 

EXERCISE IS MY THERAPY as well! My suggestions:
1) Check your shoes (not in yoga obviously). Wear them around the house and see if they trigger anything. My sneakers because of the roughness of the sole effected me. I also can not wear socks in my sneakers (sometimes if I turn them inside out so the smooth side is next to my feet it works.) I had tried dance class and I realized weeks after I had given it up that my shoes were the culprit. Exact same symptoms you are describing. It's still is a challenge to take the class, but nowhere like it had been with those sneakers.
2) Yoga was horrible for me as I have spinal issues and a cyst in my hip that were being inflamed by the weight bearing poses (warrior, back extension poses, etc.) I went to a muscular skeleton Dr who ordered various tests and I now know yoga is not for me and I also know what to avoid.

My neurologist told me it is ok if exercise triggers symptoms as long as it doesn't extend to the next day. I don't know if it applies to the general population or if it was just in my case but I've read similar things on this forum.

Debi,

Thanks for the input. This is why I am at the end of my rope. Yes I did pain management for 2.5 years. Had to stop the pain meds (gabapentin, tramadol, lyrica) as they became ineffective and due to side effects. Now I'm on nothing for pain.
Saw a neuro several times. He's the one who did the skin punch test that came back positive for SFN. He next did a glucose tolerance test, which came back as normal. He told me to come back in a year and he'll do another glucose tolerance test. That was all he did. Nothing to relieve my pain or condition. Never went back.

I was always very active and up until 3 years ago, among other things, did walk/jog 3 miles 7 days/ week. Now if I walk 20 minutes, the pain carries through for 2-3 days. More exercise makes it worse. Rest makes it better.

This is really hopeless, isn't it? There's not really anything that will ever make life anything close to normal, is there?

Thanks

I lived with burn/tingle issues from nerve damage from hip replacement. Most of my thigh is still numb going on 5 yrs. But burn/tingle is gone thanks to Inosine and Sphingolin which I'm taking now about 3 months. I've posted about it here.

I deal with bodywide OA and a hip replacement mess and ibuprofen and Pain RX herbal are my pain controller and other supplements that also help reduce pain.

Many foods exacerbate pain too, work on eliminating sugars and carbs.

My friend who has neuropathy for many years and she realizes now from statins she took WAY TOO LONG, is having good help with grape seed extract she now is taking about 5 yrs. She took all the drugs for many years...now I think she takes tylenol and ibuprofen as needed. I take grape seed ex 20 yrs now.

When we talk about pain management we are talking about more than gabapentin, lyrica and tramadol.
We are talking about heavy hitters, fentanyl, morphine, Butrans, etc. I am on MS Contin, time release morphine, 30mg x 3 daily. I also have oxycodone 10/325 for breakthrough pain. I take gabapentin, baclofen for muscle spasms, and Valium for breakthrough spasms. I am able to walk several miles but can't right now because of open wounds. I posted earlier in this discussion.
I loved walking because it helped mentally but it certainly won't cure or even necessarily slow down SFN. Doctors love to push this exercise thing because it is easy for them, doesn't require anything from them and allows them to push all the blame for your condition back on you. Magazines are full of short, meaningless articles repeating the mantra that exercise cures everything. several new books on chronic pain make the claim that we could throw away all our pills if we just exercised more. Without my pills I wouldn't move off the sofa.
You are a victim of this modern mentality. While it is true sometimes it isn't usually true for neuropathy and your neurologist really should know this.
If your quality of life is deteriorating it may be time to look into something stronger. Nerve pain relief is a trial and error process but I believe there is something out there that will make a difference for you.

I've had to truncate my exercising- my walk from the parking lot to workwas built in exercise, I halved it by moving lots- and my hands have gotten so bad I can't massage my legs any longer.

So I understand the helplessness. I really do. Are there other pain management options near you, facility wise? Perhaps you need next level medication. If your past physician was unwilling you may need to find one who is. It sounds as if you have done a lot to try and mitigate thibgs already.

My best to you,

Jon

While I have trouble walking I have places on my feet that are pain free for the most part. I use that part to ride my bike. I get in a couple of miles up and down hill at dawn when no one is about. It's the only time I get to be in some kind of natural setting now. For someone who spent his life fishing and hiking it's weird to say the least. But for now....

I guess you just have to tell him straight out that the pain you are experiencing is unbearable, and you feel you can no longer live in this fashion.

Ask him if there is a pain management specialist he can recommend or refer you to. There are a large number of different pain medications available, you have hardly scratched the surface with the things you have tried.

The only other option might be a neurologist who specializes in treating SFN - but that's a pretty rare thing.

As far as the medications, unfortunately there are side effects to just about everything. At some point we all have to decide what level of side effects we are willing to live with in order to get some pain relief.

It sounds like you and your doctor should part ways. He doesn't understand neuropathic pain. If exercise were the prevention or the solution, many of us on this message board would never have gotten this disease in the first place. Can you find a new primary? Maybe do some research before you select a new one?