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Member Neuropathy Journey Stories: What's Yours?
This discussion was created as a place for members to share their journey with neuropathy. This will allow members to easily learn from each other what has helped them and hopefully help new members avoid some of the painful and difficult struggles some of us have faced. The following is a suggested outline for sharing your story that would be helpful for other members for comparison to their own neuropathy story.
— When did your neuropathy start? What were the symptoms? When and how was it diagnosed?
— What treatments or medications have you tried?
— What side effects have you had, if any?
Optional:
— What would you tell your best friend if they told you they had neuropathy?
— What activities have you had to give up because of neuropathy? What do you instead?
— How has your life changed socially? at work? at home?
What's your neuropathy story?
Note: If you want to ask a question for another member who has posted their neuropathy story here in this discussion, be sure to add their @membername in your post, for example @johnbishop. Your question may already be discussed in other neuropathy discussions. Be sure to check here first: https://connect.mayoclinic.org/group/neuropathy/ That way this discussion can be reserved for member neuropathy stories and hopefully make it easier to read and find similar symptoms to your own.
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Hello @kelsey1234, I would like to add my welcome to Connect along with @artscaping and other members. Here's the link to a PDF on The Protocol 525 website that provides a list of the supplements and how the protocol came about - https://theprotocol525.com/wp-content/uploads/2020/09/Instructions_Introduction.pdf. I would recommend printing the information and discussing it with your doctor or care team. I also ran the list by my primary care doc who in turn shared it with a Mayo pharmacist for their thoughts. The thought the omega oils were a little high but no other concerns. I think the only problems I've heard about are if you are currently on a blood thinner which is a good reason to always run supplement by your doctor.
I only have the numbness and feel it has helped me but others I've met through the Facebook group have been able to taper off of their pain medications after being on the protocol for awhile and have found that the supplements help with the pain symptoms. I would recommend joining the Facebook group and reading their new member welcome message, then search the group using #theprotocolworks to read all of the different members success stories. Most members, including myself, have shared their story there with that tag to make it easy to read the experiences of others.
I also have some degenerative arthritis in my lower back and joints which I'm sure can contribute to nerve damage or pinching. I'm sure a bulging disc can cause some issues too that might be difficult to diagnose (my non medical opinion). @artscaping, @jenniferhunter and others have found Myofascial Release Therapy (MFR) beneficial for different conditions including nerve compression type pain. There is another discussion that you might find helpful on MFR - https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
My primary care doc prescribed gabapentin for me also but I stopped it after 2 weeks since it did nothing for numbness and then after consulting with my primary care doc and her team, I learned that gabapentin nor any other drug helps with numbness.
Have you tried any supplements?
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1 ReactionHi
I don't kow how to answer your question but did the Nortriplyne make you constipated. I took it for 2 months & I got really constipated so I had to stop it but it did help with the pain. I wish I could go back on it.
Good ole' constipation! My doctor has me take stool softener along with a prescription that seems to help enough. I hope you can go back on your nortriptilyn (?) as soon as you get on some good medicine for the medicine!
Let me know how you do on it? Best of luck.
God bless
Genie
Good evening @tigreyes2004, Well...you have hit it right in the most annoying side effect. Yes, I struggled with that issue. My PCP offered some assistance. On top of the med change we realized that I was doubling the chances of constipation because I had to build up my calcium in the fight against osteoporosis. Now that was a nightmare. I switch to getting calcium from dairy products and other high calcium foods. That fixed the constipation. Of course I gained weight because of the yoghurt and cheese and cereal. Some days you just can't win. I am now just taking a couple of nighttime vegetable laxatives and stool softners. So far, so good.
May you be free of suffering and find contentment.
Chris
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1 ReactionMy neuropathy story began with Myasthenia Gravis. I didn't know what it was. My left arm and left leg has neuropathy before going numb. Scared me, and I forgot to take my levothyroxine medications, so I suffered from myexedema (severe hypothyroidism) too. It took 2 years to figure out that it was Myasthenia Gravis, scariest period of my life.
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1 ReactionVery interesting thread! I would love getting input as I have no diagnosis. I was prediabetic for about 7 years before becoming diabetic. I lost about 10 pounds (now at 123#) and have given up all dessert and, with an A1C of 5.4, I am no longer diabetic or even prediabetic. Overall, I eat a very healthy diet of veggies, protein and fruit, all in small portions. About three years ago my right leg started having really strange things going on, with the incidents lasting only seconds. By incidents I mean the sensations of being punched, being stabbed with a needle, being pinched, being burned and the like. These happen throughout my left leg only. Otherwise, I also have a small amount of tingling in my feet and legs, but it isn't bothersome. It's the other "stuff" in my right leg that is problematic as it can prevent me from sleeping, and can startle me awake in the middle of the night. I had read that it might go away in a year so I did nothing. Then I read there isn't anything that can be done anyway. I also have a torn meniscus and arthritis in my knee of the same leg but the ortho doc believes it isn't enough to do surgery. Gabapentin did nothing for the sleep/leg pains. Now I just take a single Aleve pill in the evening but it isn't doing much, if anything. Any thoughts on what might be the problem? Any reason to go to the doctor? Would massage or acupuncture help? Any thoughts on whether this might get worse? Of course, I'm still hoping one day it just goes away! Wishful thinking? Thank you for your consideration.
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1 Reaction@trieste, If I read your post correctly it's your right light that has the pain and sensations that prevent you from sleeping and wake you up in the middle of the night. I'm not sure if this fits your symptoms but you may want to look at the following discussion or Restless Leg Syndrome.
Is this RLS (restless leg syndrome): https://connect.mayoclinic.org/discussion/is-this-rls-restless-leg-syndrome/
Also, you can find more information here:
- Restless Leg Sydrome Foundation: https://www.rls.org/understanding-rls/symptoms-diagnosis
- Mayo Clinic page on Restless Leg Syndrome: https://www.mayoclinic.org/diseases-conditions/restless-legs-syndrome/basics/symptoms/con-20031101
Good afternoon @trieste, and @johnbishop. I am Chris and John and I work well together. See......he doesn’t have pain. I do........and mine started in my right leg and was determined to be another phase of SFN, small fiber neuropathy. It is interesting that the fiery, burny pain just came every morning about 5:00 a.m. Just like you....that is also the leg with a meniscus tear and some arthritis. At first I did nothing except endure the morning wake up calls and increase the gabapentin.
That was four years ago. At this point, my right leg has become harmless because of MFR. My therapist works on that leg every week so I can keep it under control.
John, would you mind sending @trieste the MFR links. I am on a no-can-do device.
May you both have a joyful day.
Chris
PS.....I love your name @trieste, it is elegant.
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1 Reaction@trieste here is the MFR discussion mentioned by @artscaping
Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/