Looking to connect with people who have non-diabetic neuropathy

I have non diabetic idiopathic small fiber neuropathy. Diagnosed 2003. Pain only.

Yes. For pain I take 100mg lyrica am and 100mg pm, CBD oil don’t know if helps yet, tramadol as needed

how long have you been on lyrica? any side effects, es[pecially when you first started? have you tried any other meds? thanks

Initially started gabapentin in 2003 and switched to lyrica when it came available. However lyrica was not generic and very expensive. I have a tramodol RX too.

Did they Gabapentin not work?. What side effects have u seen from the Lyrica ? Thanks

I recently joined this group, but this is the first time I’ve posted.

I have “non-diabetic” peripheral neuropathy a condition I’ve endured for more that 20 years; however, for 15 years I had no idea I had neuropathy. I am retired US Air Force and for the past 14 years have been a competitive cyclist over both short and long distances. I have and can endure considerable pain and shrug it off as the price of vigorous exercise and growing older (I’ll be 79 next month).

About 5 years ago, after complaining to my family doctor, I was referred to a pain specialist who made the diagnosis after performing a nerve test on my legs (EMG); however, I refused to take any prescription meds as I feared the side effects would impact my cycling so I just soldiered on with the pain (remarkable how people can accommodate considerable pain as part of their daily life). Ignoring the neuropathy ended a couple months ago when I stood up after an hour meeting and nearly fell over as I had no feeling in my feet. I immediately thought of what will happened to me in the immediate years ahead. Thus, consulted with a pain specialist.

My current pain specialist prescribed gabapentin and also thought perhaps my spine was playing a role in the neuropathy because, (a) I don’t have diabetes; (b) when I’m riding my road bike, in the normal hunched over position, I have no pain; however, (c) when I free style swim the pain in both feet immediately becomes so severe I cannot even swim 25 meters.

I took myself off the gabapentin after a month as the side effects were too severe. I did not trust myself to drive, could not safely ride my bikes, and I felt like I was in a constant daze (I prefer the pain over those side effects).

An MRI of my spine was done and yesterday I had a consult with neurologist who specializes in spinal problems. No problems with the spine. He in turn referred me to a neurologist who specializes in the treatment of neuropathy (appt. is scheduled for 5/29).

Sorry for the long winded personal history but wanted to share as perhaps fellow suffers could suggest a med without side effects and/or provide useful advice living with this dang problem that is having a very serious negative impact on my life.

Hello @jackkdh, welcome to Connect. I have idiopathic small fiber peripheral neuropathy but I have not pain with mine just the numbness which started in the toes and I ignored for 20+ years before getting a diagnosis and then being told there was nothing they can do for numbness. Much like you I started searching for answers after trying a multitude of over the counter creams, salves and pills to no avail. While searching for answers, I found Mayo Clinic Connect and started meeting other members who share this and other conditions.

I posted my story earlier on Connect with what helps me. I too have concerns about some of the pain medications used to treat neuropathy but I know that each of us are different and anytime you can get pain relief it can be a blessing even if it means some other side effects. Here's a link to my story and what helps me: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

You may also be interested in the following discussions:

> Groups > Neuropathy > Living with Neuropathy - Welcome to the group
-- https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
-- https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Has your doctor or neurologist offered any alternative treatments or therapy for you?

@jackkdh
I would encourage you to look at physical therapy with myofascial release work. I see that John has already shared the discussion on that. My gut feeling is that because this is a positional change that causes the symptoms, that you may have some tight tissue entrapping nerves with the change of position of your legs. The good news, is your spine is OK. There are positional things that happen with the pelvis and leg position, and your comfortable place is a seated posture, but when you stand up or swim with legs stretched out, this causes pain or the loss of feeling. You may want to find an expert level MFR specialist and get an evaluation. With the nerve testing on your legs, I'm guessing that was done laying on the table, and I wonder would the results have been the same in a seated position?

Here is a technical article written for physical therapists that describes the nerve entrapments that can occur in the pelvis and hips. It talks about the psoas muscle which attaches from inside the hip bone (ileum) of the pelvis and attaches to the spine. This muscle is responsible for maintaining the lordosis or curvature of the lumbar spine. As a cyclist, you would have spent a lot of hours with the lumbar spine bent forward, an not in normal lordosis that it would have when standing, and likely your fascia is tight and being held in this position because of the hours of your competitive cycling and training. Dehydration of your body tissues can affect the fascia too, and when it is dehydrated, it gets stuck and stops gliding or allowing movement. I think this is a physical problem and that physical therapy can help, and that after you recover, you will need counter the effects of cycling with appropriate stretching afterward to maintain your body.

I have had a tight psoas too which can cause some sciatic pain for me. I do also have some spine issues with a bulging lumbar disc and had cervical spine surgery. I have thoracic outlet syndrome which is talked about in the article, and it is a postural entrapment of nerves that go to my arms and I have gained a lot with physical therapy and myofascial release work. What helps me the most aside from physical therapy is horseback riding. I have a horse and mostly just walk him, and this builds core strength in my spine with my legs in a downward position. Because I have to compensate for every step the horse takes, I'm exercising my entire back. I do this by sitting up with good posture. Horses are used in physical rehab and there are many disabled riding programs. You have been doing the opposite of this, essentially curling your spine into a ball while you work out. You may be able to simulate something like this by sitting on a large exercise ball and working on stability exercises sort of like being on a horse, but this is a question for a qualified therapist.

Here's a quote. It's a long article that talks about a lot of things. The link to the entire article is below. If you do try physical therapy and myofascial release, I hop you'll join the MFR discussion here and relay your experience.

"Evaluation of the psoas major

As mentioned numerous times now, the main compression site for the lumbar plexus, is within the psoas major. The psoas is almost always weak, but most people are still stretching it relentlessly. Big mistake. The psoas maintains lumbosacral lordosis and stabilizes the lower back, contributes to sacroiliac joint nutation and force closure, helps with anterior hip impingement and general iliofemoral stability by providing anterior stability to the femoral head, and is a tunnel for the lumbar plexus. To say it’s a pretty important muscle, would be an understatement.

If your client shows signs of lumbar plexus entrapment, and you know it’s not caused by a disc herniation, check the psoas first."
https://trainingandrehabilitation.com/identify-treat-lumbar-plexus-compression-syndrome-lpcs/

Thank you Jennifer and John, you both given me very good advice and recommendations which I will definitely follow-up on. This is precisely why I joined the group. Jack

I am on CBD Decarb from a year now and 2 years before , I was on CBD oil drop. It is mask the pain and burning sensation only but the case itself get worse because it is not cure or improve the idiopathic small Fiber Polyneuropathy.