Chronic Pain members - Welcome, please introduce yourself

Posted by Kelsey Mohring @kelseydm, Apr 27, 2016

Welcome to the new Chronic Pain group.

I’m Kelsey and I’m the moderator of the group. I look forwarding to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Why not take a minute and introduce yourself.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

I have been diagnosed with significant small nerve neuropathy caused by prediabetes. I am currently in a lot of pain that increases with standing, sitting, walking any laying in bed. I have tried gabapentin, nortriptyline, Cymbalta with no luck. I am looking for conversations with people finding themselves in a similar position. The pain is increasing daily.

REPLY

@magneticcenter Good morning, and welcome to Mayo Connect! We are not medical professionals here, but fellow patients/caregivers/family members who offer support and share our experiences.

I looked at your posting history, ad see you have already posted to the neuropathy group. That is an excellent start to getting answers to your questions! @johnbishop and @artscaping both have neuropathic issues, and may be able to share their experiences.

What does your endocrinologist have to say about the prediabetic pain? Have you looked at yoga, gentle exercise, or CBD? Under the diabetes group, there is a current discussion about neuropathy that you may be interested in: https://connect.mayoclinic.org/discussion/neuropathy-in-my-feet-and-legs/

Please come back and let me know if this is a help you you, and if you have more questions!
Ginger

REPLY
@magneticcenter

I have been diagnosed with significant small nerve neuropathy caused by prediabetes. I am currently in a lot of pain that increases with standing, sitting, walking any laying in bed. I have tried gabapentin, nortriptyline, Cymbalta with no luck. I am looking for conversations with people finding themselves in a similar position. The pain is increasing daily.

Jump to this post

Hi Richard @magneticcenter, Did you get a chance to read the member stories in the following discussion?
- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

I shared what helps me with my small fiber PN but then I only have numbness and there are no drugs that help with numbness. Other members have discussed alternative treatments such as stimulators, tens units, vitamins and more. You mentioned in one of your posts that the cause of your neuropathic pain was prediabetes. Sometimes neuropathy caused by diabetes can be reversed and prediabetes would seem to be the same although I have no medical training or background.

@gingerw offered some suggestions that have helped others - yoga, gentle exercise and mentioned another discussion that you might find helpful since it's related to your prediabetes cause for your neuropathy (if that was the actual diagnosis).
- Type 2 Diabetes: I have neuropathy in my feet and legs: https://connect.mayoclinic.org/discussion/neuropathy-in-my-feet-and-legs/

You might want to read through the information offered by the Foundation for Peripheral Neuropathy on Complementary + Integrative Therapies on their website here: https://www.foundationforpn.org/living-well/integrative-therapies/

REPLY

My name is Margo. I am 63 years old and have been suffering from Burning Mouth Syndrome for about a year and a half. For those of you who have never heard of this, it literally feels like I burned my tongue and roof of my mouth on something scalding. It gets worse as the day goes on and by night, my mouth and tongue are throbbing. I have seen a dentist, oral surgeon and my primary care doctor. The dentists have heard of this syndrome, but aren't sure how to treat it. I have been treated for thrush with a mouth rinse, and with gabapentin, which did nothing. My doctor had never heard of this, and told me it was a tooth rubbing on my tongue! I am so frustrated, as because doctors are unfamiliar with this, they show no interest in helping me to treat it. It is terribly annoying. It helps to chew sugar-free gum, which I do frequently. I feel so alone in this. I don't know if I'm in the right group. Has anyone had any experience with this?

REPLY

River I have never heard of it before! I know one of my symptoms of Lyme Disease is that I go through episoids where my teeth hurt! Like I have a mouth full of Ice, Oppisote of you!
Good luck as you'll find on reading posts on here that medicine is not like it used to be.
Sundance(RB)

REPLY
@river19

My name is Margo. I am 63 years old and have been suffering from Burning Mouth Syndrome for about a year and a half. For those of you who have never heard of this, it literally feels like I burned my tongue and roof of my mouth on something scalding. It gets worse as the day goes on and by night, my mouth and tongue are throbbing. I have seen a dentist, oral surgeon and my primary care doctor. The dentists have heard of this syndrome, but aren't sure how to treat it. I have been treated for thrush with a mouth rinse, and with gabapentin, which did nothing. My doctor had never heard of this, and told me it was a tooth rubbing on my tongue! I am so frustrated, as because doctors are unfamiliar with this, they show no interest in helping me to treat it. It is terribly annoying. It helps to chew sugar-free gum, which I do frequently. I feel so alone in this. I don't know if I'm in the right group. Has anyone had any experience with this?

Jump to this post

@river19 Welcome to Mayo Clinic. We are not medical professionals, but patients, family members and caregivers who share our experiences and offer support to others also on their health journey.

It must be very uncomfortable to be dealing with this Burming Mouth Syndrome. Here is an article published by Mayo Clinic about this condition: https://www.mayoclinic.org/diseases-conditions/burning-mouth-syndrome/symptoms-causes/syc-20350911
There are many contributing factors to consider. I hope you notice there are possible treatments and ideas here, that you can look in to. Are you near a Mayo Clinic campus, that you could check in with them? Campuses are in Rochester [MN], Jacksonville [FL], and Phoeniz [AZ]. If that is not feasible, perhaps there is a large teaching hospital or university hospital you can go to? For an appointment, https://www.mayoclinic.org/appointments.

Will you tell me more about your situation after you have read the article from Mayo, please?
Ginger

REPLY

Hello, l'm Sharonrose and l've had severe migraines numerous times a day following brain surgery over
10 yrs. ago. I'm trying to experiment with holistic solutions and non- opioid medication because l'm currently taking Fiorinal with Codeine for pain that goes from 0-10 in about 5 minutes. Most people do not understand that opioids are on a scale from mild to dangerous. What l take is mild . Although l have been prescribed many drugs over a ten year period, nothing else works but the codeine combination. l continue to search for alternatives, and have just stated botox treatments. It can reduce the number and intensity of the headaches but does not irradicate them. Does any one have experience with non-opiod or holistic paim killers for the most extreme pain imaginable. Thank you.

REPLY

@river19 I read your letter with great interest. I do not have the burning mouth symptoms but I do recall my mom having it. I was much younger, still living at home when this happened. I recall the doctors literally thought her to be crazy, and making it up! She went through a lot emotionally and physically, with no one in the medical field giving her any support. This was probably 40+ years ago so I hope that by now the medical field has advanced beyond the way she was treated! I will be following and wish you success in your search for help.

REPLY
@sharonrose1200

Hello, l'm Sharonrose and l've had severe migraines numerous times a day following brain surgery over
10 yrs. ago. I'm trying to experiment with holistic solutions and non- opioid medication because l'm currently taking Fiorinal with Codeine for pain that goes from 0-10 in about 5 minutes. Most people do not understand that opioids are on a scale from mild to dangerous. What l take is mild . Although l have been prescribed many drugs over a ten year period, nothing else works but the codeine combination. l continue to search for alternatives, and have just stated botox treatments. It can reduce the number and intensity of the headaches but does not irradicate them. Does any one have experience with non-opiod or holistic paim killers for the most extreme pain imaginable. Thank you.

Jump to this post

Yes, many people out there have “experience” or advice about holistic remedies, and you will be tempted to try many. But in your endeavor, please... you must consider the risk-benefit ratio with those as much as with such pain medication as opioids as well. Holistic remedies are not non-invasive to the body simply because they are “natural” or holistic in nature. The body reacts to them on a basal and immunological level as well.

Be careful when pursuing this tactic for relief much as you would at the direction of a medical provider. Your quality of life is worth the search but not at the cost that may be spared with simple caution.

REPLY

Thank you all. Regarding holistic remedies, l'm cautious and always research any substance before trying it. I've found straight peppermint oil on my forehead gives a tiny bit of relief .....a few % at most. I also use ice and heat as appropriate, as well as caffeine which tends to increase blood flow, and temple/ forehead message. These, along with Fiorinal/codeine, are a layering approach. l'm hoping to add / try other options as well.

REPLY
Please sign in or register to post a reply.