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.

@rwinney

Hey there @msstoppainnagginme Thanks for your message. I'm very happy you've found beneficial doses and products. I like how you've described the cost tips and tricks of the trade. This post will be helpful to many. I've finally gotten my Medical Marijuana use down pat as it took months of experimenting. I use 20:1 THC:CBD "extra strength" oil, capsules and chewable tablets. The chewable tablets are scored down the center for easy cutting and smaller dose when needed. They are a bit more costly. The oil costs me $59 a bottle and I was able to milk it out for 2 months as I only use when hydrocodone cant help my pain or certain types of pain, such as terrible aching and throbbing. I agree, the capsules are definitely cheaper, and effective, they just take longer to work through your digestive system. Oil under the tongue, of course, is the quickest release for me as it hops right into the blood stream for quick action. I carefully adjust my oil dosing as I can feel unwanted effects if I dont space 2 hours apart from my hydrocodone dose or have food in my stomach. I choose not to smoke or vape. I'm not a happy camper, that it's come to my use of narcotics and marijuana but, who'd have ever thought I'd live with neuropathy. Not me! Wishing you well in continued pain relief and success. Take care.
Rachel

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@rwinney Thank You for your nice reply. It took me over a whole year of trials & errors finding the right Dispensary & certain styles of medicinal cannabis. At 1st I tried Vireo. Their products r very pricey & the discounts are not good. Not much of a savings. So I tried several other companies & glad I did & when I was totally sure I found the Right place, for great products & selection in styles & flavors or flavorless products I could take. I buy a bit of oil styled tincture that is mostly high CBD/dosage but what I use it for is to make my own cocoa butter mixture frames from my old glass cont. From their sublingual mints & I use those to soothe my aches & pains especially my left knee/need surgery sometime at end of year.
I do not take any pain meds with my medical cannabis. I take ibuprofen 4 break thru aches & muscular pains mostly. I been weaning myself off of a certain medication that caused more grief than help & this medication was given to me for way too long & not to mention that my pain mgmt Dr's told me it was to help me not go back to opiate medications. However with that being said it's something that should be treated differently on certain individuals on a case to case as opposed the longer u take it you will not go back to taking opiate pain killers. I came to his office. 5yrs. Ago asking to be taken off opiate pain meds because I was not getting enough releif from them. So my point being sometimes you have to remind Dr's that we are not addicts but pain sufferers. It's not 1 size fits all.

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@msstoppainnagginme

@rwinney Thank You for your nice reply. It took me over a whole year of trials & errors finding the right Dispensary & certain styles of medicinal cannabis. At 1st I tried Vireo. Their products r very pricey & the discounts are not good. Not much of a savings. So I tried several other companies & glad I did & when I was totally sure I found the Right place, for great products & selection in styles & flavors or flavorless products I could take. I buy a bit of oil styled tincture that is mostly high CBD/dosage but what I use it for is to make my own cocoa butter mixture frames from my old glass cont. From their sublingual mints & I use those to soothe my aches & pains especially my left knee/need surgery sometime at end of year.
I do not take any pain meds with my medical cannabis. I take ibuprofen 4 break thru aches & muscular pains mostly. I been weaning myself off of a certain medication that caused more grief than help & this medication was given to me for way too long & not to mention that my pain mgmt Dr's told me it was to help me not go back to opiate medications. However with that being said it's something that should be treated differently on certain individuals on a case to case as opposed the longer u take it you will not go back to taking opiate pain killers. I came to his office. 5yrs. Ago asking to be taken off opiate pain meds because I was not getting enough releif from them. So my point being sometimes you have to remind Dr's that we are not addicts but pain sufferers. It's not 1 size fits all.

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@msstoppainnagginme Yes, I do recall we have spoke in the past on Connect. You helped me by providing your experiences when I was early on experimenting myself. Thank you for that.

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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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@jerid

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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@jerid It is terrible the amount of pain you suffer. If anyone is an advertisement for why you need a shingles vaccine it would be you. So, so sorry you have to endure what you do every day. I so hope you find someone who can stop this extreme pain. Please keep us updated on your search.

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Thank you, so do I hope to find an answer. Soon! I have had both the older vaccine and the new 2 series vaccine. My doctor made certain I got the new vaccine as soon as he could.

Liked by lioness

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Hi, Kelsey — I'm Lee. I've had several bouts with pain. In 2019 I developed patellofemoral pain syndrome which made it impossible for me to stand without chair arms or assist bars. It also gave me quite a bit of pain. In December 2019 I had a hard fall on concrete which not only made my knees worse, but I developed a problem with my Achilles tendon and a bakers cyst behind my left knee. I also put my left thumb completely out of joint. Although the fall was on my right side, all the pain is on my left. I've become accustomed to it, but would like to be able to stand on my own. This has all added to a fatigue I have because of 3rd stage kidney disease. This time last year I was an energetic healthy 86-yr old woman. I feel that I've caught up with myself.

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@jerid

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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@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

Liked by lioness

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I have a handful of chronic pain issues. Filed for disability in 1997, 6 year battle. I am 61 and from WI.

me

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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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@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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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

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

Liked by migizii

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🥰Thank you, wishing you Good Days 💕

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@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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