Living with Neuropathy - Welcome to the group

I have progressively bad nerve pain issues which started in my mouth and now are all over my trunk, low back, legs, feet, but with no skin sensitivity, no actual numbness. The sensations are horrid and last 24/7. Normal MRIs, EMGs. And Mayo neurology refuses to see me because it is "just pain". I personally have no respect for the institution. I did need a dermatologist there 8 years ago for the mouth issue and she was the most useless physician I have ever encountered. Accused me of being a drug seeker when she was out of town and one of her colleagues increased the only medicine I was on (I am on none now) which was clonopin .125 mg and he suggested I try .25 mg. So she was so far out of line it was pitiful and Mayo never responded to my complaint.
We pain folks are on our own out here.

@kathiejac, I'm sorry to hear about your experience at Mayo Clinic. I encourage you to call the Office of Patient Experience at Mayo Clinic.

Office of Patient Experience
8 a.m. to 5 p.m., Monday - Friday
507-284-4988

@johnbiship, I had the same experience with Mayo, but I have tried to overlook it. It just shows that nobody is infallible. There must be a secret code with Mayo that allows them to tell the truth. All my internals are swollen, probably from Gelsolin, so I have diagnosis of cancers of prostate, thyroid, testes, adrenals, liver, kidneys, lungs, stomach, esophagus, bowels, tongue, larynx, nasal passages, and everything else because they are swollen. So I now have lost my tonsils, appendix, thyroid, gall bladder, and many teeth because they were swollen or disturbed somehow. Not all by Mayo.

@kathiejac After 4 years of chronic pain, I'm trying a new angle. A Connect member referred the book Life After Pain by Dr. Jonathan Kuttner. $10 on Amazon. I'm half way through and very impressed. It's not the end all be all, but another approach to living with pain and finding the best quality of life we possibly can.

...It does seem that after all other possibilities and medical help has been exhausted, we look in the mirror and say, "now what, why do I still have this pain". Well, I'm giving it my best try to now hold myself and my knowledge accountable to make some change. Fingers crossed.
Be well,
Rachel

Hello. I have neuropathy pn from head to toe. 67 yr. old female, myriad of diseases and conditions. Toxic meds. My pn is intractable and unrelenting. At times I am fighting for my sanity and literally crawling out of my skin! Burn, sting, cold. Sit with ice on knees where it can hurt more there but is everywhere. Hands in rolled up heat pad for Raynaud's disease. Tried Gabapentin, super sub-therapeutic dose (100mg. three times daily until 200mg. three times daily due to unwanted side-effects; felt detached, life surreal. Vision problems; double throughout the day and pattern in vision field. Discontinued it to try Lyrica. Worse side-effects so went back to Gabapentin. Less side-effects. Worked fair for pn at first but now, 2 weeks later after resuming, pn worsening daily. Still at subtherapeutic dose but afraid to take more due to side-effects. I'm a medical person/dective. Besides the severe sting/burn/numb, I can itch too but not feel the back scratcher due to numbness. Go figure. Fascinating! Even have same Sxs in girl parts. Have auto-immune Dz; mixed connective tissue. Most organs and 3 glands effected. Have Fibro, it's it's own nightmare. And other painful conditions. Am on morphine but not much. Have tapered down a lot on my own even though I don't have to. Tried authentic CBD. No relief. I'm fascinated by the degree of pn and how I get through it. It's by the grace of God. Faith. But wonder if anyone else literally crawls out of their skin and fights for their sanity due to the intensity of the pn. There are a lot of tears. My Dx is small peripheral neuropathy; everything outside the spinal cord nerves I guess. Anyone out there with my experience? Thank you!

Good grief, you are really suffering horribly. When I have my small fiber neuropathy attacks the nerves are jangling all over my body as well, from my hair foliciles to the toes of my feet. These attacks are generally at night while I am in bed. Some places on my body does feel like some body is pushing in s giant pin in to my flesh. In the day I don’t get such attacks. I do get such attacks in the groin area as well.
I take Gabipentin, 1200 mg a day. I don’t like this drug’s side-effects, my skin gets blotchy and painful there and really irritates me. I actually cut back from 1800.mg. A day. A company called Life Renew have two supplements I take: Nerve Renew and Nerve Renew Optimizer( 100% alpha Liporic Acid) and that helps me but I am looking for suggestions from others on what they do to get a reduction in the symptoms we suffer. Move forward Sunflower and keep inquiring.

Hello @sunnyflower, I would like to add my welcome to Connect along with @kcshoemaker and other members. There is another discussion where members have shared their experience with what has helped them that you may be interested in reading and joining in:

Ideas for pain relief from Small Fiber Neuropathy (SFN):
-- https://connect.mayoclinic.org/discussion/ideas-for-pain-from-small-fiber-neuropathy/

Thanks so much for your reply. I am new at this and haven't done blogs before. "They" say Capsaicin may work but it's a chili pepper thing and may burn superficially when applied. I haven't tried it. I've described this pn as every nerve is innervated/overly stimulated; excited/. Feels like every cell as well! On a small percentage of nerve skin biopsies, about 25% (?) there are some findings. I also have bands of low current electricity that literally feel like they are squeezing my upper right arm and lower left arm. Not intolerable but irritating and distracting. I'm in so many supplements, it's so expensive., Can you please describe in detail how much abnd in what way the Nerve Renew and Nerve Renew Optimizer works for you and, if you know anyone else that benefits from it? With my Carpel Tunnel (Dx'd by testing and already surgerical release on one hand which needs it again), and, the Raynaud's, it's like doubling up on Sxs in hands, fingers, feet and toes. My diabetic husband gets the shooting pains like you. Arthritis strength Tylenol works for him! I've only gotten them rarely. Good talk, thanks so much!

Good afternoon, @sunnyflower, Welcome to Connect and especially to the discussions about Small Fiber Neuropathy SFN. The link that @johnbishop gave you has important information.

I have read your new member posts and have the feeling that life is quite confusing for you. If I didn't know better I would think that you were dealing with as much as any three people with SFN. Who have you chosen for your clinician.....neurologist, pain management specialist, endocrinologist, a dermatologist?

Do you have a PCP, primary care practitioner to help you make lists of your symptoms and treatments? I think there are a lot of folks out here with at least some of your symptoms?

At this point, i have 3 clinicians who collaborate when necessary. Recently I had a very serious attack of SFN itching so I identify with your statement about itches that don't respond to a back scratcher because the area is numb from SFN. I have another telemedical appointment with my dermatologist on May 14 to try to come to some conclusion about how to avoid the itching or at least treat it quickly. I will be posting the results and the medications.

What on your list of symptoms is the most distressing? Do you think that the seriousness of your symptoms are in part a result of anxiety caused by the COBID-19?

May you be free of suffering and the causes of suffering.
Chris