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.

Profile picture for drg24242 @drg24242

Hi! I was asked what I'm doing to distract me from my crps pain. A little after sunrise, I take my best friend, my little dog for about 45 min. walk. I really enjoy the calm refreashing air and looking at nature. Very relaxing. During the day, I have learned to put on a soft rock CD's, as pain and anxiety builds, like James Taylor, Micheal McDonald or Dan Folgelburg ect. I know by listing these artist I'm really dating myself. I also will try to find something light, like a comedy movie on TV. Then, about an hour before sunset, my best friend and I go for another long walk, talking to neighbor's along the way, until almost dark. These are thing's that I have learned, from this site in the last month, that I need to do to get out of the worst place for me, my head. Thank's , Darryl

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@drg24242 Good stuff here, Darryl. I'm happy to hear that you've learned helpful tools from Connect and are applying them. Awesome! Thank you for sharing that.

Pets are healing and helpful, I'm glad you have one, and that you get out and have a routine. Talking to the neighbors is nice for socialization. Do you ever visit with any of them?

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Profile picture for calimesapeg @calimesapeg

Hello John and ty for your response. I looked at the connect responses and the only one that had a response was marmite.
Yes, I have two of his books. the suggestions are numerous and expensive leaving one to wonder where to start. The suggestions also bring up many questions. I am in the process currently of reading his revised 4th edition version.
Ty

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@calimesapeg . I worked with a wonderful functional medicine/integrative medical doctor who was trained in the S.H.I.N.E protocol promoted by Dr. Teitelbaum. I thought I was dieing from lyme disease and consulted her. She specialized in tick borne diseases, chronic fatigue and fibromyalgia. After an extensive work up, she diagnosed chronic fatigue. She started me on the SHINE protocol, which included taking his supplements and following the other lifestyle recommendations. It really worked for me and restored me to good health. The sad thing was my health insurance didn't pay for my visits to her or the supplements. Anyway, I totally recommend him, his supplements, and his protocol. You can find practitioners who are trained in his methods on his website. endfatigue.com, I don't think it is a good idea to embark on a program or take a bunch of supplements without proper medical supervision so hope you can find someone near you. Good luck! Nancy

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In reply to @sdgoddard10 "I feel you Darryl" + (show)
Profile picture for sdgoddard10 @sdgoddard10

I feel you Darryl

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Hi. Sorry it took me so long to say thank-you for thinking of me.On thursday I saw my pain dr. By then I was almost suffering total withdrawl. In order to get off opiods I had gone from taking Buprenorphine 10 mcg/hour to norco 5-325 for about 9 days. He put me back on Buprenorphine but down from previos to 5 mcg/hour and it has taken me a few days to adjust.
Some positive news. Also I saw a neurologist, also on thursday, that is very up to date with the crps condition I have had for about 9 months. First of all he, even has posted in lobey, that he will spend as much time with patient as needed. I was there for over an hour. My crps has always been from elbow to tip of fingers but on 6/11/22 I felt numbnes and tingling go up from elbow all the way to left side of face including corner of eye. Two other dr's had told that they suppected pinched nerve in neck. my new neurologist imediately confirmed, what I supected,it was expantion of my crps. We have made a plan to try to get try to stop it there and maybe get things settled down. I am having a nerve conduction test with him on 8/4 to see how much nerve damage has already been done and go from there Sorry about rambling but I had a lot I needed to get out. Thank's for listning, Darryl

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Hi
My name is Genie.
I have Neueopathy in my feet & legs. I am on 900 mg of Gabapentin & 60 mg of Cymbalta. I keep increasing it & it just doesn't help.
I am at the point where I am pretty much homebound bc it is hard to walk for long periods of time.
I also have abdominal adhesions that I have from past endometriosis surgeries.
The pain is unbearable & I don't know what to do.
Any suggestions?

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Profile picture for tigreyes2004 @tigreyes2004

Hi
My name is Genie.
I have Neueopathy in my feet & legs. I am on 900 mg of Gabapentin & 60 mg of Cymbalta. I keep increasing it & it just doesn't help.
I am at the point where I am pretty much homebound bc it is hard to walk for long periods of time.
I also have abdominal adhesions that I have from past endometriosis surgeries.
The pain is unbearable & I don't know what to do.
Any suggestions?

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Hi Genie @tigreyes2004, I'm sorry to hear you are in so much pain from your neuropathy. Have you looked into any of the alternative treatments or complementary therapies to see if they might help? You can find more information here: https://www.foundationforpn.org/living-well/.

Also, I'm wondering if you've seen the discussion on member neuropathy journey stories and read what various members have shared that helped them. Here is the discussion:
-- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

Hoping that you find some relief.

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Profile picture for John, Volunteer Mentor @johnbishop

Hi Genie @tigreyes2004, I'm sorry to hear you are in so much pain from your neuropathy. Have you looked into any of the alternative treatments or complementary therapies to see if they might help? You can find more information here: https://www.foundationforpn.org/living-well/.

Also, I'm wondering if you've seen the discussion on member neuropathy journey stories and read what various members have shared that helped them. Here is the discussion:
-- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

Hoping that you find some relief.

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Thank you Jim but I have looked into everything & nothing helps & from the people's stories I have read there is nothing out there.
I guess you just have to keep trying & take one day at a time.
I will look into it though. Anything is worth a try.
I went to PT & they said there was nothing they could do for Neuropathy.
I thought the water therapy would work but they told me it was just for overweight people so that didn't do me any good.
God bless genie

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Hi and welcome to the funny farm.
First don't get down about the pain. Embrace it as it's now a part of you. While few will tell you to do that, the truth is once you do it makes it easier to deal with. My biggest suggestion is to learn how to meditate! While I am on meds to help with the pain, it does help. I tend to get more help by being able to lower the pain levels through my mind. If that makes since? Our mind is our most powerful tool when it comes to dealing with pain.

Do you have a good pain management Doctor? Are you able to talk to someone about the way you feel being homebound? Both of those are important because you need a good support system to help with the pain and to keep from getting depressed.

Just remember you are not alone on this journey, there are plenty of us here as well as around you that suffer with chronic pain.

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I am Fran Harris and I think I am a member. I am not sure how to post my chronic pain. I recently was diagnosed withTarlov Cysts which can be operated on. Has anyone had Tarlov cysts. Has anyone had them surgically removed. Does Mayo doctors operate on Tarlov Cysts?

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Profile picture for francesmharris123 @francesmharris123

I am Fran Harris and I think I am a member. I am not sure how to post my chronic pain. I recently was diagnosed withTarlov Cysts which can be operated on. Has anyone had Tarlov cysts. Has anyone had them surgically removed. Does Mayo doctors operate on Tarlov Cysts?

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Hi Fran @francesmharris123, Anywhere you post is OK. There are some discussions on Tarlov Cysts that you might want to join and read through.

-- Looking for Input Re: Tarlov Cysts: https://connect.mayoclinic.org/discussion/looking-for-input-re-tarlov-cysts/
-- Recovery after surgery for Tarlov cyst: What to expect?: https://connect.mayoclinic.org/discussion/recovery-after-surgery-for-tarlov-cyst-what-to-expect/

If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

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