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.

@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.

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Welcome @jx2sunderland. Thank you for sharing about yourself. Here are a few links to conversations on Connect that you may find interesting:

https://connect.mayoclinic.org/discussion/new-daily-persistent-headache/
https://connect.mayoclinic.org/discussion/fibromyalgia-pain-28e002/

I also recommend checking out the group devoted entirely to Visiting Mayo Clinic, https://connect.mayoclinic.org/group/traveling-to-mayo-clinic-minnesota/.

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@justina

Hello, I have had chronic pain for 17 years now.. RSD/CRPS. I have had several back surgeries, SCS implants, narcotics, etc. I have been diagnosed with Myasthenia Gravis as well as some other major health issues

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Hello @justina, welcome to Connect. @wsh66, RSD/CRPS stands for Complex Regional Pain Syndrome, https://www.mayoclinic.org/diseases-conditions/complex-regional-pain-syndrome/symptoms-causes/syc-20371151.

@justina, there are a few discussions taking place on Connect that you may find worth your time to read through and participate where you feel comfortable:

https://connect.mayoclinic.org/discussion/after-knee-replacement-i-developed-rsd-i-have-had-severe-pain-in/
https://connect.mayoclinic.org/discussion/rsdcrps/
https://connect.mayoclinic.org/discussion/myosthenia-gravis/
https://connect.mayoclinic.org/discussion/surgical-solutions-to-chronic-cervicalback-pain/

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@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.

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@jx2sunderland

I'm usually quite skeptical about home remedies. But I'll tell you what a man told me Sunday.

He had serious arthritis in his large joints 25 years ago, and started putting a teaspoon of vinegar in his morning tea, and he's been pain free ever since. A friend of his had bad migraines and added 3 tablespoons of vinegar to a beverage every day, and the migraines stopped.

As I said, I'm a born skeptic, but pain does make us willing to try new things that has been effective for others.

Jim

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@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.

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@jimhd, I think your skepticism on this topic might be well-founded. Since vinegar is acidic, it can cause caustic burns internally. Here is a blog livestrong.com, https://www.livestrong.com/article/292871-what-are-the-dangers-of-drinking-vinegar/. While that website is not from a medical institution, it does outline some of the concerns and reiterates the things many of us say, consult your physician before adding any new medication or change in diet such as this. I did see that vinegar has been used for centuries for different reasons before many conventional medicines were invented, so I am not meaning to discredit your claim here, only add a bit of a warning.

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@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.

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I have heard people swear by it. Im willing to give it a try.

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@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.

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@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.

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@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.

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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)

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

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@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.

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

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@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.

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

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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.

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@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.

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@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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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.

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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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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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