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.

@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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Thanks for the tag, John.
@micheledeville, John has given you some great things to read about getting an appointment at Mayo. Should you wish to inquire about an appointment, please fill in the online form here: http://mayocl.in/1mtmR63

There are several great discussions in the Visiting Mayo Clinic group about getting your first appointment and preparing for your visit. Check them out. Ask questions of people who have been there:
– Visiting Mayo Clinic http://mayocl.in/2bGLTKj

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I am nelsonpowell,constant pain all day iwant to know if anyone has had a wire inserted in ther back forpain

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Doctor wants to insert a wire in side my spine and transmitter out side for 7 day trail

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@nelsonpowell

Doctor wants to insert a wire in side my spine and transmitter out side for 7 day trail

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Welcome to Connect, @nelsonpowell.
I’m wondering if you are talking about an implantable neurostimulator, sometimes called a spinal cord stimulator? We have several members who have experience with this chronic pain treatment, including @ladyjane85, @jimhd, @medic7054 and others. You may wish to read their comments as well as many others on this discussion:

– Has anybody had an implantable neurostimulator for chronic pain? http://mayocl.in/2aOZaR0

Nelson, when will you start the trial?

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@nelsonpowell

I am nelsonpowell,constant pain all day iwant to know if anyone has had a wire inserted in ther back forpain

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Yes, I had the trial SCS stimulator done and it did not work for me but the trial is relatively simple and painless. I wish you the best of luck and any specifics I can answer.
Kristine

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@nelsonpowell

I am nelsonpowell,constant pain all day iwant to know if anyone has had a wire inserted in ther back forpain

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@nelsonpowell

I did a week long trial with the stimulator, and had amazing pain relief. I hope to get the permanent implant in June.

Jim

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Hi my name is Laura and I’ve lived with chronic pain since 2002. I have small fiber neuropathy, fibromyalgia, PTSD, and the list goes on and on! I’ve tried all sorts of medicines and treatments. Before I got hurt I only weighted 150 and now I’m up to 270 and I’m thinking of getting gastric sleeve surgery. I’m so tired of being in pain everyday

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@elkcg

Hi my name is Laura and I’ve lived with chronic pain since 2002. I have small fiber neuropathy, fibromyalgia, PTSD, and the list goes on and on! I’ve tried all sorts of medicines and treatments. Before I got hurt I only weighted 150 and now I’m up to 270 and I’m thinking of getting gastric sleeve surgery. I’m so tired of being in pain everyday

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Welcome to Connect Laura (@elkcg),
I’m sure it’s frustrating looking for some relief from your pain. I also have small fiber peripheral neuropathy and polymyalgia rheumatica (PMR). I don’t have chronic pain but do have the numbness with the neuropathy in my ankles and feet. Can you share what medicines or treatments you have already tried and the type of pain you experience? My PMR does give my a lot of shoulder, arm and hands pain but is controlled well with prednisone.

I too struggle with weight but have been able to more or less get it under control with diet. I found a great book that talks about cellular nutrition – Wahls Protocol by Dr Terry Wahls. She was able to cure her MS symptoms and went from using a wheelchair to riding a bike. I try to do her basic diet and not the paleo and more stricter versions she talks about.

Hoping you will find an answer soon but until then just keep searching and asking questions.

John

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@elkcg

Hi my name is Laura and I’ve lived with chronic pain since 2002. I have small fiber neuropathy, fibromyalgia, PTSD, and the list goes on and on! I’ve tried all sorts of medicines and treatments. Before I got hurt I only weighted 150 and now I’m up to 270 and I’m thinking of getting gastric sleeve surgery. I’m so tired of being in pain everyday

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Hi John. I think I have been on every medicine. Lyrica, cymbalta, morphine, Vicodin, gabapentine, tons more plus I even did IVIG treatments. I have pain everyday. My body feels like I have the flu everyday. I’ve even done physical therapy and even went to a therapist because I was having depression issues

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@elkcg

Hi my name is Laura and I’ve lived with chronic pain since 2002. I have small fiber neuropathy, fibromyalgia, PTSD, and the list goes on and on! I’ve tried all sorts of medicines and treatments. Before I got hurt I only weighted 150 and now I’m up to 270 and I’m thinking of getting gastric sleeve surgery. I’m so tired of being in pain everyday

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Hi Laura, Sounds like you have run the gamut with medications and more trying to find something that helps with the chronic pain. I did the same thing for my small fiber peripheral neuropathy only I don’t have the pain just the numbness which the neurologist told me there was nothing that would help – medications or topicals. That’s actually what started me on my search for something that helps. I think I tried pretty much every cream and lotion available to see if I could make the numbness go away or just get a little better. I have had it for over 15+ years or at least that’s what the neurologist thought.

Last summer I found a closed group on Facebook for peripheral neuropathy that has a solution (list of over the counter supplements) that helps get rid of pain and numbness associated with neuropathy. I don’t know if it will help you but I can share how it’s helped me. I started taking the supplements last September and at the time I had numbness in both legs and feet from just below the knees down through the toes. By December the numbness was just above my ankles down through the toes. It hasn’t changed since then and I’m still taking the supplements/protocol but if it never gets any better I’m OK with it because at least it’s not getting worse.

I don’t know if it will work for you but it may be worth looking into if you have tried everything else and your doctor is not able to help you. The complete list of the supplements I take can be found here – http://bit.ly/2pLZzey . I would print it out and discuss with your neurologist or primary care doctor to make sure there is nothing that conflicts with anything you are currently taking. Also I would join the closed Facebook group that is referenced and read through all their material. You can search their group using the term #theprotocolworks to bring up stories of all of the individuals who have shared their success. There are many people that share a lot of the same conditions you have and have been able to eventually get off of all pain medications. They have a lot of information to read on the groups page so if you join make sure you read the new member welcome thoroughly as it explains the protocol and what to expect. A side benefit for me is that it has helped me eat healthier and lowered my blood pressure.

Good luck and don’t give up!…John

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@elkcg

Hi my name is Laura and I’ve lived with chronic pain since 2002. I have small fiber neuropathy, fibromyalgia, PTSD, and the list goes on and on! I’ve tried all sorts of medicines and treatments. Before I got hurt I only weighted 150 and now I’m up to 270 and I’m thinking of getting gastric sleeve surgery. I’m so tired of being in pain everyday

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Hello Laura, I would like to add my welcome to John’s. I am glad he introduced himself as he is a great resource and advocate for neuropathy related issues.

I would also like to point out that we have some great discussions taking place related to some of the things you listed. Here are a few conversations you may want to join:

– Fibromyalgia pain, http://mayocl.in/2hgUGcv
– Anyone here dealing with peripheral neuropathy? http://mayocl.in/2aWCYXq
– Gastric sleeve, http://mayocl.in/2rIRpIo
– Seroquel for anxiety & PTSD, http://mayocl.in/2iIA5uj

Each of these discussions has members talking about the specific issues you listed and may offer some more insight to your questions.

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Has anyone ever heard of The Institute for Advanced Reconstruction in New Jersey? They are claiming. that they can fix people with foot drop if it has not been to long. I would appreciates anyone’s input. Thanks

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@elkcg

Hi my name is Laura and I’ve lived with chronic pain since 2002. I have small fiber neuropathy, fibromyalgia, PTSD, and the list goes on and on! I’ve tried all sorts of medicines and treatments. Before I got hurt I only weighted 150 and now I’m up to 270 and I’m thinking of getting gastric sleeve surgery. I’m so tired of being in pain everyday

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My dream is to be able to got o the Mayo Clinic and have ever test run, go through detox and get off all my medications and start from scratch. I would love to spend a month at the clinic and just get things figured out plus discuss my gastric sleeve surgery. I just can’t afford to be in the hospital that long or even stay at a hotel while being seen. I have this on my vision board. One day I’ll make it there! Maybe the Mayo Clinic will magically grand my wish and come save me.

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@elkcg

Hi my name is Laura and I’ve lived with chronic pain since 2002. I have small fiber neuropathy, fibromyalgia, PTSD, and the list goes on and on! I’ve tried all sorts of medicines and treatments. Before I got hurt I only weighted 150 and now I’m up to 270 and I’m thinking of getting gastric sleeve surgery. I’m so tired of being in pain everyday

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Hello again @elkcg,

If you are wanting to receive a second opinion from Mayo Clinic, I suggest using this link, http://mayocl.in/1mtmR63, and contacting the appointment office. The appointment office will be able to better answer your questions about getting an appointment at Mayo Clinic.

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@elkcg

Hi my name is Laura and I’ve lived with chronic pain since 2002. I have small fiber neuropathy, fibromyalgia, PTSD, and the list goes on and on! I’ve tried all sorts of medicines and treatments. Before I got hurt I only weighted 150 and now I’m up to 270 and I’m thinking of getting gastric sleeve surgery. I’m so tired of being in pain everyday

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@elkcg Hi Laura, I have fibro, anxiety, depression and other conditions and have been on many medicines and treatments as well. Ten years ago I had gastric bypass. Having the weight loss surgery was the final option for me as traditional weight loss programs did not work because I was fighting a metabolic disorder. There are many people who think weight loss surgery is the easy way out. It is not! Surgery is another tool that helps but only if habits are changed. How familiar are you with the different surgical options? Have you spoken to your doctor yet?
Jen

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