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.

@mikween

HI everybody, I wanted to give everyone an update to my appt. at the Doctor the other day. He is a DPM. With I did not really kmow when I went there but I think he really knows what he is doing. Surgery for Neuropathy never even came up. Here is what he has started me on: L-Arginine 900 mg 3 times per day between meals, Magnesium 400mg 1 time per day. (He told me that you only need to take Magnesium if you are having a lot of pain with your neoropathy.) and Alpha Lipoic Acid 600 mg per day 3 times per day. And then he wrote me a prescription for sterioids mg. And then I am going to get about 7 blood work test. He wants to check my hormones. He also did a nerve block injection into one of my ankles to see if it would respond. It hurt like heeee..And it has not. So, he will probably put me on hormones. And then we will go from there.

He did mention something really quick about my foot drop that he could fix by doing an Ankle Joint Fusion. We only talked about it for a few minutes since I was mainly there for my neuropathy. He told me it would be just like not being able to wear my braces. My foot would stay in the same place all the time. I will talk to him more about that next time, because I had never heard of that. Has anyone of you ever heard of that or had it done?

I saw somone mention DMSO. I did hear that it could be good cream for your feet if you have neourpathy. I ordered some and will let you guys know what I think.

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@mikween, the ankle itself does not move, however, your foot bones do allow for some movement. My physicians and surgeon at Mayo Clinic did not warn about foot pain in the future. But, as with any procedure you have to weigh the benefits to risks. For me, my ankle was so arthritic, breaking apart, and painful that I did not really even have a choice. It was don’t walk at all, or fuse and get some relief.

I am more active now because the pain in my left ankle has pretty much been eliminated. There are some side effects however, like my left achilles tendon does tend to get sore when I over do it. I think this is a result of not being able to move my ankle joint, so the tendon gets stiff from not being stretched and if I overdo it or do happen to stretch it a little bit, it will get sore.

As always, work with your physicians to make the best choice. Mine told me from the beginning that fusion was going to be the end result, but to wait as long as possible until the pain becomes so great so that when you make the decision you are ready. Benefits: pain all but eliminated, more active again, created a stable leg to take the pressure off of my right side. Drawbacks: very little to no range-of-motion, can’t really jog or run, very long recovery time, and you can’t jump on a trampoline anymore in case you were wondering.

I am back to cycling, lifting weights (assisted machine squats, deadlifts, hipsleds), and walking greater distances because of my fusion. It was the right choice for me, but you have to work with your physicians and medical providers to make sure it is the right decision for you. Weigh the risks and benefits. I held out as long as I could, but I do not regret my decision. I wish you the best mikween, it is not an easy decision to make, just make sure you have plenty of questions as the ready for your upcoming appointment! Let the community know what you find out!

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@mikween

HI everybody, I wanted to give everyone an update to my appt. at the Doctor the other day. He is a DPM. With I did not really kmow when I went there but I think he really knows what he is doing. Surgery for Neuropathy never even came up. Here is what he has started me on: L-Arginine 900 mg 3 times per day between meals, Magnesium 400mg 1 time per day. (He told me that you only need to take Magnesium if you are having a lot of pain with your neoropathy.) and Alpha Lipoic Acid 600 mg per day 3 times per day. And then he wrote me a prescription for sterioids mg. And then I am going to get about 7 blood work test. He wants to check my hormones. He also did a nerve block injection into one of my ankles to see if it would respond. It hurt like heeee..And it has not. So, he will probably put me on hormones. And then we will go from there.

He did mention something really quick about my foot drop that he could fix by doing an Ankle Joint Fusion. We only talked about it for a few minutes since I was mainly there for my neuropathy. He told me it would be just like not being able to wear my braces. My foot would stay in the same place all the time. I will talk to him more about that next time, because I had never heard of that. Has anyone of you ever heard of that or had it done?

I saw somone mention DMSO. I did hear that it could be good cream for your feet if you have neourpathy. I ordered some and will let you guys know what I think.

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Hi @JustinMcClanahan, thanks for all of the info.

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Low potassium levels? That can cause severe muscle cramping.

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@scottyrussell

Hi everyone! My name is Scott and I am a Vietnam Era veteran with 4 major back surgeries under my belt. My 3rd back surgery was to fuse my spine from L-1 to S-1(2013) and then a surgery to support my sacroiliac joints by crossing over the joint and connect the hardware to my hip(2014). So today I have extreme nerve burning sensations on the base of my spine and in the hip area. Plus a new issue popped up last year in September and that was severe muscle cramping. I currently take gabepentin 1200mg at bed time, 1000mg of methacarbol at bedtime and pain medication. My goal is to stay active and mobile. My primary physician has recommended acupuncture which I have just started 3 weeks ago. Helping? Not sure yet. My doctor and I are both scratching our heads as to the sudden onset of the severe muscle cramping last year, so bad that it will take your breath away and can’t take another step! Thoughts? Look forward to any and all comments.

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Hi I am Joan, The myofascial release really does help. It loosens up the very tight muscles. My pain doctor taught me how to pull my neck muscles away with the palm of my hand, hold it there for a while, then let go. Do it a couple of times. To really work, you would have to keep doing it and I must say I don’t. When I do, the difference does make the muscles less tense. Watch the Neurontin…can cause stomach upset, edema, increase in weight, and blurry vision. I had no problem on 400 mg 4x.day until 800 mg 3x/day. Now I am back on Topamax for my neuropathic pain. Best of luck.

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@micheledeville

Hi Kelsey, I am actually in search of answers on behalf of my daughter. I’m hoping to find help for her whether it is a good doctor to go to, ideas on treatment or diagnosis or just connecting her with other people that have similar symptoms. My daughter is 26 and started feeling sick last fall. She has had multiple doctors appointments, several tests run and there seems to be no answers. She is missing a ton of work, has no quality of life and is feeling very helpless and losing hope. There are no answers and no diagnosis. She has swollen lymph nodes, a constant sore throat and feeling like her throat is swollen, lack of appetite, exhaustion, fatigue and pain. I am wondering about chronic fatigue syndrome or fibromyalgia or something like that but not sure. I feel like she is giving up and I’m trying to help. I found this site and thought there may be good information here or at least recommendations of good providers that will search with her for answers. Thanks Kelsey.

Michele

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Hi Kelsey, I am Joan. I was just reading on Web MD the other day about “gut bacteria”not being correct (microbiome) and they believe it is causing chronic fatigue syndrome. Just printed it out 2-3 days ago. Our GI system is our #1 immune system figher so it makes sense that if the correct bacteria are not there, we become sick and get sick…i.e. maybe, chronic fatigue (as one problem they believe). They have very good articles for people to read. Web MD.com. It takes you to LIVE SCIENCE The article…Some people have more of some gut bacteria than others April 26,2017 and also related to IBS.
I have fibromyalgia…didn’t say that is caused by that…they have some tests done in research hospitals that are promising. The “power” house of each cell, the mitochondria, are ineffective. That is an old theory they have help on too. They are many others now. I hope the chronic fatigue article might help.

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@micheledeville

Hi Kelsey, I am actually in search of answers on behalf of my daughter. I’m hoping to find help for her whether it is a good doctor to go to, ideas on treatment or diagnosis or just connecting her with other people that have similar symptoms. My daughter is 26 and started feeling sick last fall. She has had multiple doctors appointments, several tests run and there seems to be no answers. She is missing a ton of work, has no quality of life and is feeling very helpless and losing hope. There are no answers and no diagnosis. She has swollen lymph nodes, a constant sore throat and feeling like her throat is swollen, lack of appetite, exhaustion, fatigue and pain. I am wondering about chronic fatigue syndrome or fibromyalgia or something like that but not sure. I feel like she is giving up and I’m trying to help. I found this site and thought there may be good information here or at least recommendations of good providers that will search with her for answers. Thanks Kelsey.

Michele

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@micheledeville Hi Michele and welcome to Mayo Connect! Thanks for posting this question with Mayo Connect. I am sorry to hear of your daughter’s health problems. You said that she has seen multiple doctors and had several tests run. Have any of these doctors been a Rheumatologist? Sometimes auto-immune disorders can be attributed to these symptoms and a Rheumatologist is a good doctor to sort out this kind of matter. We look forward to hearing from you, and hope that your daughter finds the help that she needs. Teresa

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Hi @micheledeville, thank you for being such a strong advocate for your daughter. It can be overwhelming when your child is suffering and you are trying to help them. Connect really is a great place to meet and share with others. I see that you are off to a good star in finding some answers.

Here is a good site that speaks to lab tests for autoimmune disorders, by illness. Its not meant to dwell on, just a good reference if you are looking for more information – http://bit.ly/2rzELLd

Here is a video that might be helpful – “What happens when you have a disease doctors can’t diagnose” – TED talk by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome
http://bit.ly/2nvf21H
If you would like to seek help from Mayo Clinic, please call one of our appointment offices. The contact information for Minnesota, Arizona and Florida
can be found here http://mayocl.in/1mtmR63. Rochester Mayo Clinic has a lot of experience and is highly recommended when it comes to diagnosing difficult to diagnose health issues.

Hoping for peace, strength and answers for you and your daughter.

John

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@johnbishop

Hi @micheledeville, thank you for being such a strong advocate for your daughter. It can be overwhelming when your child is suffering and you are trying to help them. Connect really is a great place to meet and share with others. I see that you are off to a good star in finding some answers.

Here is a good site that speaks to lab tests for autoimmune disorders, by illness. Its not meant to dwell on, just a good reference if you are looking for more information – http://bit.ly/2rzELLd

Here is a video that might be helpful – “What happens when you have a disease doctors can’t diagnose” – TED talk by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome
http://bit.ly/2nvf21H
If you would like to seek help from Mayo Clinic, please call one of our appointment offices. The contact information for Minnesota, Arizona and Florida
can be found here http://mayocl.in/1mtmR63. Rochester Mayo Clinic has a lot of experience and is highly recommended when it comes to diagnosing difficult to diagnose health issues.

Hoping for peace, strength and answers for you and your daughter.

John

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@johnbishop Great advice. I went way too long trying to get a diagnosis locally. I now know if they don’t figure things out within six months that I will head to Boston.
At one point, prior to transplant, I was in the hospital with problem blood counts. In diagnosing what was causing them they left no stone unturned, just to be sure it wasn’t more than the cirrhosis. A group of five or six doctors would come in and go over everything! I felt like I was a patient on the older TV show, “House”.
I wish Boston was close enough to have my PCP there, but you need to leave about two hours travel time during the day.
JK

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@johnbishop

Hi @micheledeville, thank you for being such a strong advocate for your daughter. It can be overwhelming when your child is suffering and you are trying to help them. Connect really is a great place to meet and share with others. I see that you are off to a good star in finding some answers.

Here is a good site that speaks to lab tests for autoimmune disorders, by illness. Its not meant to dwell on, just a good reference if you are looking for more information – http://bit.ly/2rzELLd

Here is a video that might be helpful – “What happens when you have a disease doctors can’t diagnose” – TED talk by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome
http://bit.ly/2nvf21H
If you would like to seek help from Mayo Clinic, please call one of our appointment offices. The contact information for Minnesota, Arizona and Florida
can be found here http://mayocl.in/1mtmR63. Rochester Mayo Clinic has a lot of experience and is highly recommended when it comes to diagnosing difficult to diagnose health issues.

Hoping for peace, strength and answers for you and your daughter.

John

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Thank you JK (@contentandwell), I am fortunate to live within a short driving distance of the Rochester Mayo Clinic. I loved the TV show “House”. Don’t you wish every doctor was a real life House with all the answers and knowledge…:-) Truth is we know our body and how we feel better than most doctors so it’s important that we make sure they know also by asking better questions and communicating better with them. We are our best advocate.

Someday maybe all this technology and information sharing will give doctors the tools they need to help us all – wherever we live.

Hoping you have a great day. John

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@micheledeville

Hi Kelsey, I am actually in search of answers on behalf of my daughter. I’m hoping to find help for her whether it is a good doctor to go to, ideas on treatment or diagnosis or just connecting her with other people that have similar symptoms. My daughter is 26 and started feeling sick last fall. She has had multiple doctors appointments, several tests run and there seems to be no answers. She is missing a ton of work, has no quality of life and is feeling very helpless and losing hope. There are no answers and no diagnosis. She has swollen lymph nodes, a constant sore throat and feeling like her throat is swollen, lack of appetite, exhaustion, fatigue and pain. I am wondering about chronic fatigue syndrome or fibromyalgia or something like that but not sure. I feel like she is giving up and I’m trying to help. I found this site and thought there may be good information here or at least recommendations of good providers that will search with her for answers. Thanks Kelsey.

Michele

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@micheledeville It’s great that you are advocating for your daughter.I can only imagine how helpless you feel. Reading her symptoms has me thinking more of of an immune condition, perhaps Mononucleosis. When my son was in middle school he had similar symptoms that kept him in bed for months. After seeing specialist after specialist, he was diagnosed with mono by an infectious disease doctor.
I hope you both get answers and treatment soon. Jen
This is the info from Mayo Clinic .http://mayocl.in/1RMaU4g

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@johnbishop

Hi @micheledeville, thank you for being such a strong advocate for your daughter. It can be overwhelming when your child is suffering and you are trying to help them. Connect really is a great place to meet and share with others. I see that you are off to a good star in finding some answers.

Here is a good site that speaks to lab tests for autoimmune disorders, by illness. Its not meant to dwell on, just a good reference if you are looking for more information – http://bit.ly/2rzELLd

Here is a video that might be helpful – “What happens when you have a disease doctors can’t diagnose” – TED talk by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome
http://bit.ly/2nvf21H
If you would like to seek help from Mayo Clinic, please call one of our appointment offices. The contact information for Minnesota, Arizona and Florida
can be found here http://mayocl.in/1mtmR63. Rochester Mayo Clinic has a lot of experience and is highly recommended when it comes to diagnosing difficult to diagnose health issues.

Hoping for peace, strength and answers for you and your daughter.

John

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@johnbishop John, you are so fortunate to live so close to such an amazing facility. Although I do not live close enough to Boston to have my PCP there I am happy that I am close enough to be able to go there for anything more specific. I regret so much not going there sooner so that the mystery of what I had could have been solved, it was difficult to go for so long not knowing what was wrong, waking up every morning afraid that I might have an HE episode that day. Thankfully though, at this point it is all history and I am doing fabulously, only glitch being side drug side-effects.

“House” was great, one of the shows I miss.
JK

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@johnbishop

Hi @micheledeville, thank you for being such a strong advocate for your daughter. It can be overwhelming when your child is suffering and you are trying to help them. Connect really is a great place to meet and share with others. I see that you are off to a good star in finding some answers.

Here is a good site that speaks to lab tests for autoimmune disorders, by illness. Its not meant to dwell on, just a good reference if you are looking for more information – http://bit.ly/2rzELLd

Here is a video that might be helpful – “What happens when you have a disease doctors can’t diagnose” – TED talk by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome
http://bit.ly/2nvf21H
If you would like to seek help from Mayo Clinic, please call one of our appointment offices. The contact information for Minnesota, Arizona and Florida
can be found here http://mayocl.in/1mtmR63. Rochester Mayo Clinic has a lot of experience and is highly recommended when it comes to diagnosing difficult to diagnose health issues.

Hoping for peace, strength and answers for you and your daughter.

John

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Hi John
Thanks so much for your response. I truly appreciate your insight and suggestions. I will look at the links and I am pursuing getting an appointment for my daughter at the Mayo. There are a lot of physicians at Mayo – I am wondering if anyone of the site has any suggestions of a good physician to start with or someone that they have had good luck. Thanks again and have a wonderful holiday weekend!

Michele

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@johnbishop

Hi @micheledeville, thank you for being such a strong advocate for your daughter. It can be overwhelming when your child is suffering and you are trying to help them. Connect really is a great place to meet and share with others. I see that you are off to a good star in finding some answers.

Here is a good site that speaks to lab tests for autoimmune disorders, by illness. Its not meant to dwell on, just a good reference if you are looking for more information – http://bit.ly/2rzELLd

Here is a video that might be helpful – “What happens when you have a disease doctors can’t diagnose” – TED talk by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome
http://bit.ly/2nvf21H
If you would like to seek help from Mayo Clinic, please call one of our appointment offices. The contact information for Minnesota, Arizona and Florida
can be found here http://mayocl.in/1mtmR63. Rochester Mayo Clinic has a lot of experience and is highly recommended when it comes to diagnosing difficult to diagnose health issues.

Hoping for peace, strength and answers for you and your daughter.

John

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Hello Michele (@micheledeville),

I think when you make your appointment they will setup a series of appointments based on the symptoms you tell them so that they can help you. I am tagging a few folks that may have a better insight and can give you some information on what to expect with your visit/appointment – @cynaburst @dawn_giacabazi @IndianaScott @katemn @kariulrich @kdubois @rosmarya @colleenyoung @jamienolson.

Please let us know when you get your appointment set up and you have more questions.

John

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@johnbishop

Hi @micheledeville, thank you for being such a strong advocate for your daughter. It can be overwhelming when your child is suffering and you are trying to help them. Connect really is a great place to meet and share with others. I see that you are off to a good star in finding some answers.

Here is a good site that speaks to lab tests for autoimmune disorders, by illness. Its not meant to dwell on, just a good reference if you are looking for more information – http://bit.ly/2rzELLd

Here is a video that might be helpful – “What happens when you have a disease doctors can’t diagnose” – TED talk by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome
http://bit.ly/2nvf21H
If you would like to seek help from Mayo Clinic, please call one of our appointment offices. The contact information for Minnesota, Arizona and Florida
can be found here http://mayocl.in/1mtmR63. Rochester Mayo Clinic has a lot of experience and is highly recommended when it comes to diagnosing difficult to diagnose health issues.

Hoping for peace, strength and answers for you and your daughter.

John

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Hi Michelle,
Here are a few links that may help you with any questions you might have about an upcoming appointment at Mayo Clinic.

A typical visit:
http://mayocl.in/2r3YzUw
Frequently asked questions about visits to the Rochester Mayo Clinic:
http://mayocl.in/2iqtsjl
Sharing Mayo Clinic – Stories from patients, family, friends and Mayo Clinic staff
http://mayocl.in/2rolpJp
John

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@johnbishop

Hi @micheledeville, thank you for being such a strong advocate for your daughter. It can be overwhelming when your child is suffering and you are trying to help them. Connect really is a great place to meet and share with others. I see that you are off to a good star in finding some answers.

Here is a good site that speaks to lab tests for autoimmune disorders, by illness. Its not meant to dwell on, just a good reference if you are looking for more information – http://bit.ly/2rzELLd

Here is a video that might be helpful – “What happens when you have a disease doctors can’t diagnose” – TED talk by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome
http://bit.ly/2nvf21H
If you would like to seek help from Mayo Clinic, please call one of our appointment offices. The contact information for Minnesota, Arizona and Florida
can be found here http://mayocl.in/1mtmR63. Rochester Mayo Clinic has a lot of experience and is highly recommended when it comes to diagnosing difficult to diagnose health issues.

Hoping for peace, strength and answers for you and your daughter.

John

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for @micheledeville When I went to to Mayo-AZ, things were very different. I went there having spent many days and nights trying to learn as much as I could about amyloidosis, having had a MD give me what he called an “informal” Dx. I at least had a place to start. Anyway, I was at May four (4) months, and it was only in the last few days that amy… was given any credence. The docs spent the rest of the time looking for any other excuse they could find for me having the symptoms and signs. They even sent some blood and biopsies to Rochester. The found a few things, but nothing that would excuse the situation. In the last few days the docs showed me a list of cancers, but nothing which would impact the amy. Only on the last two or three days did I get to see a hematologist, who knew next to nothing about amy. Only after I had been back home for a few months did I get a report from Rochester that said “We cannot rule out AL (light chain) amyloidosis, Gelsolin, Cystatin-C, Apolipoprotein, or other systemic, primary, familiar” amyloidosis diseases. In other words, the waffling-around by Mayo for 90% of the visit cost me several thousand dollars, with very little in return. So I say, be careful. You have to protect yourself at all times.

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