Mayo Clinic Connect
Anyone here dealing with peripheral neuropathy?
Liked by John, Volunteer Mentor, peggyj4411, jazzy27, heather074 ... see all
Dear Chris (and fellow Connect supporters) ~
I'd like to elaborate on the importance and timing of your post (Chris). Also, I'd like to share this info so it may help someone else.
The evening you messaged me back was a very difficult and painful one for me which is why you moved me to tears. Not only was your reply kind, sincere and supportive, but it also showed how much you pay attention to each persons needs and conditions in this forum.
I had made poor choices that day. One, I consumed too much sugar and two, I took my THC dose 5 hours apart instead of my usual 6 hours, out of desperation.
I had not been treating myself well by consuming muffins each day leading up, a candy bar the day prior, then on that particular day…a chocolate shake. Call me bone headed but, the last time I got spiteful about my condition and ate a half bag of marshmallows, I paid the price the next morning with nerves firing up beyond the normal misery. So yes, I should have known better.
THC side effects hit me 1 1/2 – 2 hours after consumption. Boy did they hit me with fury that night. I could not move, lift my head or function from severe dizziness, nausea,, dry eyes, dry mouth, disorientation, brain fogg. It was very scary.
During this time, I also was in the mother of all pain flares. More extreme than usual. My guess… sugar. Debilitating pain, spasm, burning fire, cramping, numbness. I felt contorted and was in such a poor state from the THC side effects that I lay there suffering…mentally talking myself through it and focusing on slow, deep breathing. I contemplated going to urgent care (despite my embarrassment) but, decided to persevere and make myself ride it out.
After a total of 4 hours, between pain attacks settling with my next dose of hydrocodone and the THC wearing away,…I came to.
That's when I eventually looked at my phone and saw your reply Chris.
Man oh man did it move me to tears. They say timing is everything and your timing was impeccable! You presented a reflection of my strength that I felt I had just voided from my mistakes. It overwhelmed me in the moment.
My point here is… this physical and mental journey of pain continues to make me (us) learn, grow and test the boundaries of our inner strength. Even though I made wrong choices that day that did not benefit me…I learned from them and I hope others will too. We are all human and all we want is to live comfortably to the best of our abilities with love, support, encouragement and kindness.
Thank you Chris, Jim, Lori Renee, John and many, many others in Connect, from the bottom of my heart, for riding shotgun with me down the incredibly bumpy road. May you all be well this evening and not drinking shakes! (wink, wink)
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Rachel, my wife said this regarding your post of yesterday:
Rachel, Hank just read to me your post. I understand and sympathize with your dilemma. I believe chronic pain offers an opportunity for "any" weakness in your body to flare and thrive. Even though I know my suffering will increase when I have a drink or eat something containing sugar — sometimes you just need a "vacation", a diversion from pain. So don't be too hard on yourself. Everyone needs an escape from chronic pain. I find no help with aspirin or any other pain killers. I am allergic to them all. Gabapentin gave me hope but then I began hallucinating, had balance and vertigo problems, my tinnitus worsened, I gained 10 pounds and I couldn't think.
My coping support comes from an electric fan on my feet day and night. Not being in any temp over 65 degrees summer or winter. An infrared lamp on my feet and cutting sugar out of my diet except for piece of pie or cake on Christmas or Thanksgiving. I really look forward to one or two mixed drinks a week as tolerated. This is a journey of constant search for what works for you. Hank has been my search engine! By the way, sometimes I get a little relief with soaking my feet in hot water then put them in front of the fan to cool off quickly. I think it confuses the nerves.
Liked by Jim, Volunteer Mentor
Aww, this is sweet. So glad you wrote back! Thank you for your words of wisdom and support. I hear you though. I just told my husband the other day that I can't believe…I'm a person who does not drink, smoke, drug…the only thing that would be a so called vice for me would be occasional sugar. Self deprivation is also not healthy. So, CHEERS! Me with my occasional milkshake and you with your cocktail. 😊
Liked by Jim, Volunteer Mentor, Lisa Lucier, lioness
Thank you @colleenyoung. I am looking for answers to fight this without using the recommendation of my neurologist to be treated with IV Solumedrol steroids for what he claims will slow the progression. He claims that then after 2 years, I will start to notice some either improvement or at least the slowing of the disease. Am only 58 yrs old and I started having the numbness in my left calf on the outside of my leg when it began. It started as just a small area about the size of a quarter. It was the strangest thing because it was just numb all of a sudden. That was in 2011. Now there’s numbness in both heels and parts of my feet and toes. I’ve started having more tingling in my fingers and hands lately and two weeks ago started occupational therapy for the fact that I’m always dropping things.
I used to be on 900 mg of gabapentin 3 x a day! I told my neurologist that I wanted to wean off of it because since I’d started it 2 1/2 yrs prior, it had contributed to 40 lb weight gain which I want to lose and I didn’t want to be on so much medication. I have fibromyalgia too and it did help with that pain so I kept taking it. I had asked my Dr if I would have to be on it for the rest of life and he had made it sound like I had no choice! He says “this is your new norm!”.
So I’ve been off of it now for a week and I am hoping to our find something natural for pain. The neuropathy is only the numbness and tingling, but the pain from Fibro, Osteoarthritis and oh forgot to mention, pelvic floor disfuntion.
So my main mission is to fight, but also in my journey if it helps others to fight too, that will be a good thing.
I am thankful to find this Mayo Clinic Connect for whatever help is out there by sharing of information. Thank you to you and the other mentors. May God bless you!
I am the same age as you are. My neurologist initially recommended the IV Solu-Medrol but I didn't want to take it because of its tendency to cause weight gain and I'm already overweight. So he started me on the fgfr3 infusions that I get it home by a home infusion nurse the four days a month every month. I think that it is helping a little bit stop. Enough to give me some hope. I've only had four treatments. I take 1800 mg of Gabapentin three times a day, hydrocodone twice a day, and morphine once a day along with some other medications that are supposed to help with nerve pain. It also helps if you can rub Diclofenac sodium gel on the spots that burn. That seems to give me just a little bit of relief sometimes.
Liked by rwinney
I have been dealing with chronic neck and back pain, and severe, painful neuropathy in my feet, legs, hands, and arms. I live in central PA and have been trying to find a good, caring, comprehensive pain management doctor/group, with no success. Can anyone recommend a good pain management group in Pennsylvania? I am willing to drive to any place in the state to get relief.
YES I …got gabapentin 300 mgs one am. one p.m. and one at NIGHT…got METANX is new and untried by many, flushes out the veins with
b vitamins that most people reject. Only two weeks so far, less pain, some at waking…like I said only two weeks, Nuerologist says it takes a few
more weeks to see if anything works permanently. Had an MRI of the spine, ex rays of the hips, etc. so far only this helps…
Liked by John, Volunteer Mentor
am not in PA only in Hoboken….wish I was closer and had more info…Margaretob
John thanks for your reply. The cause is unknown in my case. But I have constant tingling on legs and arms. Of course it is worse at night when trying to sleep. Sometimes I get a strong pain in my right leg near the knee and one in my thigh. I use a tens machine for the pain but the tingling and numbness doesn’t stop. I also have restless legs and take requip for that along with tramadol. It helps with the rls but no the tingling and numbness.
@rabbit10 .. try gabapentin. Get some help. No meds is not good.
Yes hands and feet and now some calves, got Gabapentin 300 mgs. one in the am one in the pm helps, am trying the new metanx supposed to help with the circulation, so far it has been two weeks, it helps some. A.M. when I first wake up still have the pain. Not so much in the daytime. Tylenol, Advil, Aleve and Aspirin when it hits, I take one or two of these. It helps, creepy feet then the pain. You also?
@cwallen9 If you want to consider Myofascial Release which can treat a lot of body pain and get he body moving correctly by removing restrictions, you may want to try the John Barnes Clinic in Pennsylvania. This is similar to massage, except the therapist will hold the stretch and wait for the tissue to release. I do a lot of MFR work for thoracic outlet syndrome and as rehab form spine surgery and it has helped me a lot. Here is the link and also the link to our discussion about MFR. There are other listings in PA too, but this is the practice of the man who created this therapy and teaches this to physical therapists. You can find the other listings on the MFR website at http://mfrtherapists.com/
Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who have both recently written about peripheral neuropathy. They both had different causes of their diagnosis and can discuss their experiences with you.
How long have you been dealing with peripheral neuropathy?
October 11 the pain started in the feet and left leg, I took every over the counter meds I could find. Ran through most, pain and numbness started in November and December. January went to ER..they said ARTHRITIS and x rayed my hips. Put me on TRAMADOL, I had a very bad reaction so I saw a NEUROLOGIST who after another ER pain episode.gave me GABAPENTIN and the new super vitamin METANX. I have insulin dependent diabetes now since 1995 and are 75 years old. Pain is waking me up @ night in the left leg and feet and hands are numb. Have an appointment March 10 to see the NEUROLOGIST again. Until then GABAPENTIN 300 mgs. two times a day and one at night. AND METANX which I am told takes weeks to work to help..
THIS PAIN down the leg and into the feet is RIDICULOUS….numb hands and I shake them to get the circulation back. So far this is SERIOUS…anybody find anything that helps? I will listen…Margaretob
Margaret, have you had an EMG by a neurologist? That will yield some clear diagnostic information about the source of your pain. Don’t just settle for prescriptions. Insist on a diagnosis.
Liked by Lisa Lucier
Yes, also had hip x rays for the ARTHRITIS, and an MRI of the SPINE, I will see results on the tenth of March when I see the NEUROLOGIST…..Until then I take the GABAPENTIN 300 mgs. twice a day and ONE at night, it works to cut the pain down to minimum for five hours, then it revs up again….so I wait so I do not abuse the GABA and the METANX which takes months to work and is proven to cut the pain down and do some healing of the VEINS…..it is experimental and works on RABBITS and RATS…look it up…I take both..One METANX at night and the other GABAS….so far the worst of it calms down…for five hours at a time..M.
One woman started abusing the GABAS and started hallucinating @ 1800 mgs. I have NINE spaced over a twenty four hour period.
I have no hallucinations and do REMEMBER MY NAME which she said happens with forgetfulness at 1800 mgs….Margaretob
DIagnosed with INSULIN dependent DIABETES in 1995, am 75 and a half now. I get good stick your finger numbers daily with the INSULIN…the NEUROPATHY started OCTOBER 11th when I got serious pain in my legs and feet….Since then two ERS and the NEUROPATHY DOCTOR…so far so good…will see what he says on the 10th of THIS MONTH OF MARCH….
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