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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.

Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Mar 16, 2018
In reply to @jx2sunderland "Hello, This is my first post. I am scheduled to go to Mayo in Rochester,MN beginning..." + (show)
@jx2sunderland

Hello,

This is my first post. I am scheduled to go to Mayo in Rochester,MN beginning of April.

I am a 40 yo female having a 17yr history of migraines, 6 yr of Sarcoid (currently in remission), 4yr of Tietze Syndrome (chronic costochondritis), 2 yr of Fibromyalgia. Fibromyalgia started after emergency surgery and needing blood transfusions. I usually will first have pain and inflammation in my rib cage~Tietze Syndrome/costochondritis when a flare starts, then it usually leads to migraines, fatigue, and more classic fibro flairs.

This past January I had a flair and it has progressed to being daily migraines ever since (6+weeks). Early on the body pains and headaches/migraines were easy to treat then it got progressively harder to control until I was having daily 8/10 through 10/10 pain scale migraines. I was hospitalized for 5 days with the goal of getting a 24hr break of the migraines, I was discharged without meeting the goal. Since then I have been on multiple drugs and i have had one singular day migraine free. I worked last week from home, and had the ability to take a break for a few hours a day when I felt a headache coming on. Now that im back in the office, they are occurring more frequently. I feel like my neurologist, who is the only headache specialist in the area, has run out of ideas on how to break this recurring cycle of migraines. I already do Botox every three months, take 2 preventative medications, and have added the normal supplements to my daily vitamin/pill routine.

I am hoping my visit to Mayo will 1) identify a new plan to control my migraines and 2) create a plan to control my more frequent Fibro flares. My life has been severely impacted by having these pain and fatigue conditions. I am (was?) a fairly active person. I am a whitewater kayaker and ww kayak instructor. I love photography, hiking, camping, and generally being outside, but more often than now I don't have the spoons (aka energy) to do much.

Jump to this post

@jx2sunderland, I suggest discussing this with your provider to at the very least make them aware, but to also learn more about the potential side-effects.

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Mar 16, 2018
In reply to @jx2sunderland "Hello, This is my first post. I am scheduled to go to Mayo in Rochester,MN beginning..." + (show)
@jx2sunderland

Hello,

This is my first post. I am scheduled to go to Mayo in Rochester,MN beginning of April.

I am a 40 yo female having a 17yr history of migraines, 6 yr of Sarcoid (currently in remission), 4yr of Tietze Syndrome (chronic costochondritis), 2 yr of Fibromyalgia. Fibromyalgia started after emergency surgery and needing blood transfusions. I usually will first have pain and inflammation in my rib cage~Tietze Syndrome/costochondritis when a flare starts, then it usually leads to migraines, fatigue, and more classic fibro flairs.

This past January I had a flair and it has progressed to being daily migraines ever since (6+weeks). Early on the body pains and headaches/migraines were easy to treat then it got progressively harder to control until I was having daily 8/10 through 10/10 pain scale migraines. I was hospitalized for 5 days with the goal of getting a 24hr break of the migraines, I was discharged without meeting the goal. Since then I have been on multiple drugs and i have had one singular day migraine free. I worked last week from home, and had the ability to take a break for a few hours a day when I felt a headache coming on. Now that im back in the office, they are occurring more frequently. I feel like my neurologist, who is the only headache specialist in the area, has run out of ideas on how to break this recurring cycle of migraines. I already do Botox every three months, take 2 preventative medications, and have added the normal supplements to my daily vitamin/pill routine.

I am hoping my visit to Mayo will 1) identify a new plan to control my migraines and 2) create a plan to control my more frequent Fibro flares. My life has been severely impacted by having these pain and fatigue conditions. I am (was?) a fairly active person. I am a whitewater kayaker and ww kayak instructor. I love photography, hiking, camping, and generally being outside, but more often than now I don't have the spoons (aka energy) to do much.

Jump to this post

I agree with Justin (@JustinMcClanahan) about skepticism - it's a good thing. That being said, I'm a believer in apple cider vinegar (ACV) and it's health benefits. I started using it because I had read about it helping with constipation which I struggle with. It's not the miracle that I was hoping for but it has helped. I did do my research on it before starting it even though it is one of those home remedies that has been passed down for generations.

Antimicrobial activity of apple cider vinegar against Escherichia coli, Staphylococcus aureus and Candida albicans; downregulating cytokine and microbial protein expression (from nature.com Scientific Reports:
-- https://www.nature.com/articles/s41598-017-18618-x

Beneficial effects of Apple Cider Vinegar on weight management, Visceral Adiposity Index and lipid profile in overweight or obese subjects receiving restricted calorie diet: A randomized clinical trial:
-- https://www.sciencedirect.com/science/article/pii/S1756464618300483

Non-evidence-Based Medicine: The Gastroenterologist’s Role and Responsibility (just plain interesting ☺)
-- https://link.springer.com/article/10.1007/s10620-018-4993-8

John ( 3 glasses of H20 a day, each with a teaspoon of ACV)

REPLY
justina | @justina | Mar 16, 2018

I will have to try this. My grandmother told often told me that ACV was good for arthritis.

REPLY
Marield65. Marie | @marield65 | Mar 17, 2018
In reply to @jx2sunderland "Hello, This is my first post. I am scheduled to go to Mayo in Rochester,MN beginning..." + (show)
@jx2sunderland

Hello,

This is my first post. I am scheduled to go to Mayo in Rochester,MN beginning of April.

I am a 40 yo female having a 17yr history of migraines, 6 yr of Sarcoid (currently in remission), 4yr of Tietze Syndrome (chronic costochondritis), 2 yr of Fibromyalgia. Fibromyalgia started after emergency surgery and needing blood transfusions. I usually will first have pain and inflammation in my rib cage~Tietze Syndrome/costochondritis when a flare starts, then it usually leads to migraines, fatigue, and more classic fibro flairs.

This past January I had a flair and it has progressed to being daily migraines ever since (6+weeks). Early on the body pains and headaches/migraines were easy to treat then it got progressively harder to control until I was having daily 8/10 through 10/10 pain scale migraines. I was hospitalized for 5 days with the goal of getting a 24hr break of the migraines, I was discharged without meeting the goal. Since then I have been on multiple drugs and i have had one singular day migraine free. I worked last week from home, and had the ability to take a break for a few hours a day when I felt a headache coming on. Now that im back in the office, they are occurring more frequently. I feel like my neurologist, who is the only headache specialist in the area, has run out of ideas on how to break this recurring cycle of migraines. I already do Botox every three months, take 2 preventative medications, and have added the normal supplements to my daily vitamin/pill routine.

I am hoping my visit to Mayo will 1) identify a new plan to control my migraines and 2) create a plan to control my more frequent Fibro flares. My life has been severely impacted by having these pain and fatigue conditions. I am (was?) a fairly active person. I am a whitewater kayaker and ww kayak instructor. I love photography, hiking, camping, and generally being outside, but more often than now I don't have the spoons (aka energy) to do much.

Jump to this post

Justin can you tell me where I can find the blogs that talk about hempseed or oil and cbd?
Thank you @marield65

REPLY
Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Mar 20, 2018
In reply to @jx2sunderland "Hello, This is my first post. I am scheduled to go to Mayo in Rochester,MN beginning..." + (show)
@jx2sunderland

Hello,

This is my first post. I am scheduled to go to Mayo in Rochester,MN beginning of April.

I am a 40 yo female having a 17yr history of migraines, 6 yr of Sarcoid (currently in remission), 4yr of Tietze Syndrome (chronic costochondritis), 2 yr of Fibromyalgia. Fibromyalgia started after emergency surgery and needing blood transfusions. I usually will first have pain and inflammation in my rib cage~Tietze Syndrome/costochondritis when a flare starts, then it usually leads to migraines, fatigue, and more classic fibro flairs.

This past January I had a flair and it has progressed to being daily migraines ever since (6+weeks). Early on the body pains and headaches/migraines were easy to treat then it got progressively harder to control until I was having daily 8/10 through 10/10 pain scale migraines. I was hospitalized for 5 days with the goal of getting a 24hr break of the migraines, I was discharged without meeting the goal. Since then I have been on multiple drugs and i have had one singular day migraine free. I worked last week from home, and had the ability to take a break for a few hours a day when I felt a headache coming on. Now that im back in the office, they are occurring more frequently. I feel like my neurologist, who is the only headache specialist in the area, has run out of ideas on how to break this recurring cycle of migraines. I already do Botox every three months, take 2 preventative medications, and have added the normal supplements to my daily vitamin/pill routine.

I am hoping my visit to Mayo will 1) identify a new plan to control my migraines and 2) create a plan to control my more frequent Fibro flares. My life has been severely impacted by having these pain and fatigue conditions. I am (was?) a fairly active person. I am a whitewater kayaker and ww kayak instructor. I love photography, hiking, camping, and generally being outside, but more often than now I don't have the spoons (aka energy) to do much.

Jump to this post

Hello @marield65, I apologize for the delay in my response, are you asking about the following discussion, https://connect.mayoclinic.org/discussion/cbd/?

REPLY
lioness | @lioness | Mar 20, 2018

Epsom Salts it's great ,I flu d it in the form of Body Wash Dr. Teals body wash ,at Wal-Mart they probably have it elsewhere Parus ,Oregongirl wanted you to know and others who use it for Pain.

REPLY
1 reply
peach414144 | @peach414144 | Mar 20, 2018
In reply to @lioness "Epsom Salts it's great ,I flu d it in the form of Body Wash Dr. Teals..." + (show)
@lioness

Epsom Salts it's great ,I flu d it in the form of Body Wash Dr. Teals body wash ,at Wal-Mart they probably have it elsewhere Parus ,Oregongirl wanted you to know and others who use it for Pain.

Jump to this post

@Dear Lioness, you are so right. I have this large bag of epsom salts sitting here. But, living alone this 80 year old with bulging disks ans pinched nerves can't get out of the tub. I would not buy the walk in tub because you cannot lie back and get the whole body into the water. The walk in tubs do not even cover most of the upper body. They wonder why more of their tubs are not sold. Where is their common sense? Anyway it is nice of you to share this good news to help with the pains. peach

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jeanie26 | @jeanie26 | Mar 20, 2018

In regards to apple cider vinegar, it is also good to add to your bath water. about a cup or so. It helps with joint pain due to its medicinal properties and the warm bath water just makes it all that much more soothing. Just soak it in for awhile and relax. You'll be surprised at how much better you will feel.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 23, 2018

Hi all,
Connect recently launched a new feature called Member Spotlights (https://connect.mayoclinic.org/newsfeed-post/connect-member-spotlights-shining-a-light-on-community-members/).

I think the members of the Chronic Pain group will be particularly interested to read today's member spotlight about Martin, someone many of you have CONNECTed with.

– Meet @predictable: Lifelong Admiration for Mayo Clinic's Sincerity https://connect.mayoclinic.org/newsfeed-post/lifelong-admiration-for-mayo-clinics-sincerity-meet-predictable/

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pamelars60 | @pamelars60 | Mar 25, 2018

Hi there. I have several , ( dare I say, weird ? ) diagnosis. I have Ehrlos-Danilo’s, Mast Cell Activation, Fibromyalgia, Dercums Disease. I have multiple allergies, kidney damage, due to Rhabdolyosis and several weird, or unusual health issues. I am looking for information regarding managing my MCAS. I do not have a specialist yet, who has experience in managing MCAS. I have seen several Hem/Onc docs, but none that have had patients with the MCAS, just mastocytosis patients. So I am trying to ‘wing it’, and looking for support and information. Thanks

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