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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.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 27, 2020
In reply to @jerid "Hi, I am Jeri and I suffer from PHN on the left side of my scalp,..." + (show)
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Hi, I am Jeri and I suffer from PHN on the left side of my scalp, forehead, face and left eye. I had Shingles 4 years ago and I can not get rid of the pain. I have had injections of steroid and numbing medication directly into the nerve above the left eye as a first treatment in June, which gave me 3 days of relief. A month later I had another injection of just the numbing medication and it did nothing for the pain. Then a month -6 weeks later I had Radio Frequency Ablation to the nerve and head hoping to burn the nerve to remove the pain. Well, as luck has it it lasted 2 weeks and now I am suffering almost constantly once again with burning, sharp pain that literally feel like electric shocks directly to the head. I have learned to ice it at night to relieve the pain for sleeping along with a 500 mg Tylenol, which I do not like taking, but I feel I have no choice. I have found that Peppermint Oil helps to calm the nerve, but not for any length of time. Cool water also helps while I am in the water, such as swimming. So I swim a mile daily at our public pool when it is open, but the season is closed for our outdoor pool. I just want it gone forever. If anyone out there has suffered from eye, forehead and head pain due to Shingles and has found a method of treatment that works please let me know. The photo is of me obviously while in the hospital with my Shingles. The physician stated it was the worst case of head shingles she had ever seen. I was in the hospital 2x. The first was for the treatment and the second was for the severe pain I continued to experience. It has healed very well and to look at me one cannot tell I had such a horrible case. I only wish I could get rid of the pain so I can be happy and not under stress from all the almost constant pain. Thank you.

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Hi @jerid and welcome to Mayo Clinic Connect. I would like to connect you with other members who have also experienced postherpetic neuralgia and pain. Please click the link below and join the conversation:
- Shingles and Postherpetic Neuralgia and Pain https://connect.mayoclinic.org/discussion/shingles-and-neuropathic-pain/

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snuffy1 | @snuffy1 | Sep 1, 2020
In reply to @colleenyoung "Hi all, I'm Colleen, Community Director and part of Connect's moderator team along with Kelsey. I..." + (show)
Profile picture for Colleen Young, Connect Director @colleenyoung

Hi all,
I'm Colleen, Community Director and part of Connect's moderator team along with Kelsey. I want to say a special thank you to @leh09 @19lin @seanbeck @suebreen54 @mlemieux @ladyjane85 @lolomarie @zjandre @briansr @salena54 @sharonmay7 for all your contributions and making new members feel welcome.

Cheers to continued connecting on Connect.

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Thank you Colleen. I am excited to join this group and share what I have started taking that has totally eliminated my chronic pain that I suffered with for way too many years. Vitamin B6. I take 100 mg/day, and started it about 6 months ago. I just realized that I no longer have any need for my high powered pain pills, CBD oil and any other topical rubs. I have moved from pain at 5-10+ to "0" now. I have been diagnosed with chronic low back pain, osteoarthritis, etc. I've been treated at the Mayo Pain Clinic but the results were not long lasting. Apparently my pain was due to inflammation, and B6 has alleviated it down. Life is totally better now! Do ask your doctor about this before starting it, and once you do start taking this wonder vitamin, be patient...it doesn't work overnight. It took about 4-5 months (maybe) before I noticed that I wasn't hurting anymore. Good luck!!

Snuffy

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saleha59 | @saleha59 | Sep 2, 2020

I have a handful of chronic pain issues. Filed for disability in 1997, 6 year battle. I am 61 and from WI.
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cb772 | @cb772 | Sep 2, 2020

I'm Carol Brady, 67 yrs old, live in SE Florida & have chronic pain 24/7 & severe anxiety due to the disabling pain.

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snuffy1 | @snuffy1 | Sep 2, 2020
In reply to @cb772 "I'm Carol Brady, 67 yrs old, live in SE Florida & have chronic pain 24/7 &..." + (show)
Profile picture for cb772 @cb772

I'm Carol Brady, 67 yrs old, live in SE Florida & have chronic pain 24/7 & severe anxiety due to the disabling pain.

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Hello Carol. I so understand that pain. I am 80 years old and was in that same pain situation for too many years. I am amazed at how much better I feel now. Good luck!!

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kimcvi | @kimcvi | Sep 2, 2020

Hi everyone, I too live in pain due to my Myotonia Congenita. I can’t sleep. I am still waiting for my results on my genetic test should have them in another 2 weeks. I try to keep moving but then if I do too much it starts to hurt, if I sit too long I just don’t want to move because I know it’s gonna be hard to get my legs moving and the pain is severe. I feel everyone who is suffering and I just want to take everyone’s pain away. It’s horrible to live like that. I just want to say be very proactive in your health and don’t give up. It took me a year to have another test done. I explain in details to my doctor the pain I have. I am very up front with him. I told him on the first day I met him that I don’t beat around the bush and I want him to listen to me. I also wrote down everything that makes my pain worse and my legs not to work along with my hands. So Please anyone who is in pain write it all down, especially on your bad days and when you see or talk to your doctor give them or read your list, this list will really help them if they are Good doctors. Hang in there there will be better days ahead💕

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Mentor
Rachel, Volunteer Mentor | @rwinney | Sep 2, 2020
In reply to @kimcvi "Hi everyone, I too live in pain due to my Myotonia Congenita. I can’t sleep. I..." + (show)
Profile picture for kimcvi @kimcvi

Hi everyone, I too live in pain due to my Myotonia Congenita. I can’t sleep. I am still waiting for my results on my genetic test should have them in another 2 weeks. I try to keep moving but then if I do too much it starts to hurt, if I sit too long I just don’t want to move because I know it’s gonna be hard to get my legs moving and the pain is severe. I feel everyone who is suffering and I just want to take everyone’s pain away. It’s horrible to live like that. I just want to say be very proactive in your health and don’t give up. It took me a year to have another test done. I explain in details to my doctor the pain I have. I am very up front with him. I told him on the first day I met him that I don’t beat around the bush and I want him to listen to me. I also wrote down everything that makes my pain worse and my legs not to work along with my hands. So Please anyone who is in pain write it all down, especially on your bad days and when you see or talk to your doctor give them or read your list, this list will really help them if they are Good doctors. Hang in there there will be better days ahead💕

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@kimcvi Excellent advice! I concur and do exactly that. Last week I gave my Neurologist my symptom list. They need to read it, understand it, believe it, and not brush us off. Great post. Thank you.
Rachel

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kimcvi | @kimcvi | Sep 2, 2020

🥰Thank you, wishing you Good Days 💕

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cb772 | @cb772 | Sep 2, 2020
In reply to @snuffy1 "Hello Carol. I so understand that pain. I am 80 years old and was in that..." + (show)
Profile picture for snuffy1 @snuffy1

Hello Carol. I so understand that pain. I am 80 years old and was in that same pain situation for too many years. I am amazed at how much better I feel now. Good luck!!

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Snuffy1, hello. How did you manage your pain & what was your answer to pain that makes you feel so much better now. I've given up on doctors because they don't listen to me.

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snuffy1 | @snuffy1 | Sep 2, 2020
In reply to @cb772 "Snuffy1, hello. How did you manage your pain & what was your answer to pain that..." + (show)
Profile picture for cb772 @cb772

Snuffy1, hello. How did you manage your pain & what was your answer to pain that makes you feel so much better now. I've given up on doctors because they don't listen to me.

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cb772, hi. After years of taking all sorts of pain meds and lotions, ice, heating pads. etc., I somehow came across an article about the pain relieving benefits of vitamin B6. B6 was purported to relieve inflammation. I used to get some relieve from the non steroidal anti inflammatory (NSAIDs) drugs, but after about 40 years of taking a very old "safer" one, I began to lose about 2 lbs per week, until I had lost some 70 lbs. My GI doctor knew something was wrong, so she had me swallow the medical camera and it showed the reason I was losing weight so fast...my total small intestine was covered with ulcers. Hence she said I should never take another NSAID. After nothing seemed to really relieve the pain, I decided to give the vitamin B6 a try. That was about last November... it didn't do anything right away, but I've noticed that when I take my regular daily meds for blood pressure and thyroid issues, I was not reaching for the pain pills anymore. Looking back, I think it's been at least a month now since I took any pain medication or used any CBD oil rubs. I would suggest you talk with you doctor before starting the B6, there may be medical reasons why he/she has not suggested that to you. Good luck!!

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