Living with Neuropathy - Welcome to the group

Good Afternoon,
It's not just Mayo in Rochester. I've tried numerous times to get an appointment at Mayo in Jacksonville, FL. I came close once when someone called me to make an appointment. When they asked for my history, she called the department she thought I needed and they said that at that time they were not taking on new patients. I needed neurology and had a script from my neurosurgeon.

Ronnie (GRANDMAr)

@vilee
Hi Victoria,
Sorry you are having trouble with burning! I can only imagine how uncomfortable it is.
As far as Gabapentin, frankly, I've been taking it for a few years. I really don't think it has helped me in any way. So, once in a while I will go off or just lower the dose until one of the docs tell me to take the prescribed dosage.
I take more than one med that has fatigue as a possible side effect, so I don't know if it is coming from that.
I can tell you that my brother takes it, but only at night, because he says it tires him enough to sleep.
I know there are others with different stories.

Just remember, each and every one of us is different. We have different conditions. We take different meds. We tolerate things differently. Therefore, there is no way of knowing how YOU will react to the medicine. And, if the doctor thinks it might help and you are so uncomfortable, you may want to try it!

Good luck!
Ronnie (GRANDMAr)

Thank you !! I am waiting on the results now from cervical and lower back MRI and they did a EMG so this wed I hope to know more . I know I did to much to soon as I felt great and was in zero pain . I am working long hours for 3 days straight then will be able to take a break for a couple weeks . Thanks for listening to me

Hi Victoria @vilee, welcome to Connect. Thanks for tagging me @artscaping. Victoria I had neuropathy for 20+ years before deciding to see if there was anything that would help. You can read my story in a post earlier on Connect here:
https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

I only have numbness with my idiopathic small fiber peripheral neuropathy so none of the pain drugs do anything for numbness for me. I take supplements that seem to have slowed down or stopped the progression of my PN but it's a little subjective on my part. I found the supplements in a closed Facebook group and most of the over 6000 members of the group have found relief from the pain and been able to taper off of all pain drugs by taking the supplements. The link to the group and their website is in my story/experience link above.

I was referred to the Mayo neurologist by my Mayo primary care doctor. Have you already been diagnosed with idiopathic PN?

John

Hi I had a really bad night two nights ago because a really bad thunderstorm come through I all my symptoms for my head throbbing numbing spiking burning. Does anyone else have this problem during thunderstorm.

@mandyschneider0 Hi there Mandy......it is all about the barometric pressure. And yes, those symptoms can be related to a specific drop in pressure. I keep a barometric pressure guide on my desktop so that I can check it and prepare. I only think about riding it out. I don't succumb to any medications. I often end up crashed on my bed with an audiobook. As soon as the sun peaks through, the trees stop moving around, and the birds begin singing and chirping then I know it will soon be over. Be safe and be well. Chris

I definitely know about the barometric pressure.... Those days are really tough!!! Had one to those days yesterday!!!!

@dancermurphy Can you share what type of neck surgery you had? I am a spine surgery patient and had a fusion at C5/C6 and at about the 6 week mark post op, the pain did increase a bit because of scar tissue tightening. I was also in a neck brace for 3 months which makes neck muscles weaker, and I had to work through rehab after I stopped wearing the brace. Physical therapy helped a lot, but I had to wait until that 3 month mark to start until after fusion began because I don't have hardware in my spine and that was frustrating to not be able to stretch to help the pain. After it fused, I was able to rehab and made great progress. My physical therapist also does myofascial release which helps release tightness of scar tissue. I'll post a link to a discussion I started about MFR that has a lot of information. I had a spine fusion with only a bone graft. It might be worth a call to your surgical team to discuss your symptoms. Inflammation increases pain and your inflammation in your body will be higher because it's part of the healing process from the trauma of surgery. They may not be familiar with MFR work. There is a therapist finder link in the MFR discussion. It's worth discussing your prescription too and the side effects you are getting. If you are having spasms in your neck muscles, those can cause balance issues and dizziness if it is moving the upper cervical vertebrae around and affecting the normal curvature of the spine. I have had that happen to me.

Fear also increases pain a lot. As a patient, I learned how to confront my fears, and I was able to recover from my spine surgery without any pain medication. I was a patient who had feared pain all my life, but by working on those fears before my surgery, I was able to get past them, and embrace the surgical help I needed. I just accepted that it was going to hurt for awhile, but that real post surgical pain was not even close to the level of pain I had endured before the surgery because of an epidural spine injection that caused a paraesthesia pain because the volume of fluid that was injected and had no where to go. I was convulsing and starting to pass out after that injection, and I used slow deep breathing to keep calm and try to control the pain. I was able to stop myself from passing out and that was a victory because I took back control, and the pain wasn't causing me to loose consciousness. I just had to be patient and I had a few weeks that were awful with stabbing pains that got worse if I moved at all because of he injection. This injection was done as a diagnostic test before I came to Mayo as a patient, and no one at Mayo asked me to do this. These epidural injections are used to put off surgery, and some patients get temporary relief from them. They are not FDA approved for injection of a steroid into the spine, and they carry some big risks. I refused to do any further epidural injections. That surgeon didn't want to help me anyway, and I came to Mayo.

Now when I think about pain, I compare the experience to that day when the high end my pain scale was reset to that new level, and I realize that it's not as bad as it could be, and I relax. Pain is a normal pain of healing. Pain can also be caused by muscles and tissues that are too tight, and I can do something about that with my physical therapist. So I now think about it as a measure of my progress. I used to fear that the pain would never stop, but now I see it as a challenge that I can overcome. I used art and music to confront my fears and learned to relax in the midst of what I was going through. You can join the discussion on Art for Healing here.

My story
https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/

Art for Healing
https://connect.mayoclinic.org/discussion/art-for-healing/

Myofascial Release
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

@dancermurphy, @jenniferhunter
HI!
I am also a spine surgery patient.
My chronic pain actually began with cerival pain. Remarkably, after one shot, the pain was gone for years and years. It started up again about 2 years ago. My pain doctor tried many different things, but they did not help. I had pins and needles down my arm and violent headaches would wake me up.
In addition to the cervical issues, I also had lumbar issues with unrelenting pain. I saw 5 different pain docs. The last one I went to was able to help me. He procedures would give me anywhere from 1 month to 4 months of pain reduction. It was something I could live with. About 2 years ago, at the same time I had issues with the cervical spine, my pain doc was not longer able to help my lumbar.
After over a decade of suffering, I had enough. There were months, even a couple of years when I couldn't walk because of the pain. It was then I decide to confer with a neurosurgeon.
After looking at my test results, he suggested doing the cervical spine first. Instead of having a fusion, he replaced C5/6 with artificial disks. He went through the front of my neck. For me, after a couple of days, the surgical pain was gone. Within 2 weeks, my headaches were totally gone as was the pins and needles.
I healed very quickly and easily so I started PT at 6 weeks post-op (instead of 8 weeks).
Then came the lumbar. What a difference!!!!!!
I had what was called and X-Life fusion of L4/5. The recover was HORRIBLE and VERY PAINFUL for me!!!!! I was on pain meds longer than I had every been. Then suddenly, at 4 months, the pain was suddenly gone!!!
I still watch myself VERY carefully as if I just had the surgery. Too many people start to carry on the way they did before surgery and then the pain returns. They say the surgery was not successful, but I PERSONALLY THINK it is because they didn't take care long enough. Even though the scars and pain might be gone, it could take over a year for the cervical spine to completely heal and up to 2 years for the lumbar.
That being said, I don't lift anything heavier than a gallon, I don't bend without bending my knees, and don't reach and hyperextend, I still use the gripper I got after surgery, I don't turn my head or body quickly, etc., etc., etc.
So that's my story!

Ronnie (GRANDMAr)

@grandmar From what I have heard, recovery after cervical disc replacement is easier than fusion. My presurgical pains were gone immediately too after my fusion surgery and most of the surgery pain was gone by 6 weeks. 3 months later, I stopped noticing that I had had surgery. I heard about the lumbar surgeries being more difficult and painful, and it makes sense since that is bearing all your body weight and forces if you twist can pull on the hardware. I have a bulging lumbar disc and I am trying to maintain my core strength to protect my lumbar spine and hopefully avoid a lumbar problem. I do know that riding my horse does wonders for that, and I make sure I ride with good posture. I can get some low back pain, and riding helps it. It also helps by strengthening my mid back which helps posture and that is important for me because I also have TOS (thoracic outlet syndrome) and any slouching or forward head posture will just aggravate that. Swimming also helps and I like to kick laps with a kick board and I should be doing more. I appreciate hearing your story. I'm careful too and don't want to do activities that stress my neck. I do have some issues with long distance driving and get spasms from my shoulder into my neck because of the TOS after it starts to fatigue. I don't have as much arm strength either, so I am careful about lifting. I am past 2 years post op now, and still rebuilding muscle that was lost. It is a long recovery.