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.

@phob

I am new to the group.My name is Pat. I have been taking morphine for about 10 years. It started after a severe fall which left me in chronic thoracic pain and a loss of 2″ in 1 year. I was crying in pain all the time. What made it worse is nothing showed up on x-ray or MRI. Frustrating when you know something is wrong and they can’t find it to attempt to fix it. After being on Percocet and needing more and more, the pain MD put me on long acting morphine plus quick acting morphine for breakthrough pain. I didn’t have pain before the fall. Now, about 15 years later I have had both knees replaced, both shoulders replaced and now have spondylolisthesis in L5S1 which is very painful. Right after a cortisone shot in my low back, I can walk for about 1-2 months, gradually it wears off and I prefer to lie in bed or be in a chair. Walking is near impossible until the next cortisone injections. I used to be on a lot of morphine but have decreased my dose to 15 mg 2x/day which still helps. What I want is to switch to CBD with a little THC. It’s been 8 months since I started using marijuana and I have yet to find that “sweet spot” you seem to talk about. I take 1/2 dropperful or .5 cc of CBD 2x/day. I also have a ittle edible THC. Perhaps I started the CBD dose a little high? I never did start off small and raise it until it was effective. How do you do that? Do you start with one drop for 2 weeks to see if there’s any effect then go to 2 drops etc. I found .5 cc is not that many drops. Perhaps 3? Getting off the morphine is my primary objective. Doing it with the help of CBD would be ideal. Thank you for accepting me into this group. Any advice is appreciated.

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Arnica is a tea made from the Arnica flower.It’s a tea for chronic pain

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@phob

I am new to the group.My name is Pat. I have been taking morphine for about 10 years. It started after a severe fall which left me in chronic thoracic pain and a loss of 2″ in 1 year. I was crying in pain all the time. What made it worse is nothing showed up on x-ray or MRI. Frustrating when you know something is wrong and they can’t find it to attempt to fix it. After being on Percocet and needing more and more, the pain MD put me on long acting morphine plus quick acting morphine for breakthrough pain. I didn’t have pain before the fall. Now, about 15 years later I have had both knees replaced, both shoulders replaced and now have spondylolisthesis in L5S1 which is very painful. Right after a cortisone shot in my low back, I can walk for about 1-2 months, gradually it wears off and I prefer to lie in bed or be in a chair. Walking is near impossible until the next cortisone injections. I used to be on a lot of morphine but have decreased my dose to 15 mg 2x/day which still helps. What I want is to switch to CBD with a little THC. It’s been 8 months since I started using marijuana and I have yet to find that “sweet spot” you seem to talk about. I take 1/2 dropperful or .5 cc of CBD 2x/day. I also have a ittle edible THC. Perhaps I started the CBD dose a little high? I never did start off small and raise it until it was effective. How do you do that? Do you start with one drop for 2 weeks to see if there’s any effect then go to 2 drops etc. I found .5 cc is not that many drops. Perhaps 3? Getting off the morphine is my primary objective. Doing it with the help of CBD would be ideal. Thank you for accepting me into this group. Any advice is appreciated.

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Where do you get the tea? Thanks

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@phob

I am new to the group.My name is Pat. I have been taking morphine for about 10 years. It started after a severe fall which left me in chronic thoracic pain and a loss of 2″ in 1 year. I was crying in pain all the time. What made it worse is nothing showed up on x-ray or MRI. Frustrating when you know something is wrong and they can’t find it to attempt to fix it. After being on Percocet and needing more and more, the pain MD put me on long acting morphine plus quick acting morphine for breakthrough pain. I didn’t have pain before the fall. Now, about 15 years later I have had both knees replaced, both shoulders replaced and now have spondylolisthesis in L5S1 which is very painful. Right after a cortisone shot in my low back, I can walk for about 1-2 months, gradually it wears off and I prefer to lie in bed or be in a chair. Walking is near impossible until the next cortisone injections. I used to be on a lot of morphine but have decreased my dose to 15 mg 2x/day which still helps. What I want is to switch to CBD with a little THC. It’s been 8 months since I started using marijuana and I have yet to find that “sweet spot” you seem to talk about. I take 1/2 dropperful or .5 cc of CBD 2x/day. I also have a ittle edible THC. Perhaps I started the CBD dose a little high? I never did start off small and raise it until it was effective. How do you do that? Do you start with one drop for 2 weeks to see if there’s any effect then go to 2 drops etc. I found .5 cc is not that many drops. Perhaps 3? Getting off the morphine is my primary objective. Doing it with the help of CBD would be ideal. Thank you for accepting me into this group. Any advice is appreciated.

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I find it at Rite Aid

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@phob

I am new to the group.My name is Pat. I have been taking morphine for about 10 years. It started after a severe fall which left me in chronic thoracic pain and a loss of 2″ in 1 year. I was crying in pain all the time. What made it worse is nothing showed up on x-ray or MRI. Frustrating when you know something is wrong and they can’t find it to attempt to fix it. After being on Percocet and needing more and more, the pain MD put me on long acting morphine plus quick acting morphine for breakthrough pain. I didn’t have pain before the fall. Now, about 15 years later I have had both knees replaced, both shoulders replaced and now have spondylolisthesis in L5S1 which is very painful. Right after a cortisone shot in my low back, I can walk for about 1-2 months, gradually it wears off and I prefer to lie in bed or be in a chair. Walking is near impossible until the next cortisone injections. I used to be on a lot of morphine but have decreased my dose to 15 mg 2x/day which still helps. What I want is to switch to CBD with a little THC. It’s been 8 months since I started using marijuana and I have yet to find that “sweet spot” you seem to talk about. I take 1/2 dropperful or .5 cc of CBD 2x/day. I also have a ittle edible THC. Perhaps I started the CBD dose a little high? I never did start off small and raise it until it was effective. How do you do that? Do you start with one drop for 2 weeks to see if there’s any effect then go to 2 drops etc. I found .5 cc is not that many drops. Perhaps 3? Getting off the morphine is my primary objective. Doing it with the help of CBD would be ideal. Thank you for accepting me into this group. Any advice is appreciated.

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How does it work? I have migraine and tmj

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@phob

I am new to the group.My name is Pat. I have been taking morphine for about 10 years. It started after a severe fall which left me in chronic thoracic pain and a loss of 2″ in 1 year. I was crying in pain all the time. What made it worse is nothing showed up on x-ray or MRI. Frustrating when you know something is wrong and they can’t find it to attempt to fix it. After being on Percocet and needing more and more, the pain MD put me on long acting morphine plus quick acting morphine for breakthrough pain. I didn’t have pain before the fall. Now, about 15 years later I have had both knees replaced, both shoulders replaced and now have spondylolisthesis in L5S1 which is very painful. Right after a cortisone shot in my low back, I can walk for about 1-2 months, gradually it wears off and I prefer to lie in bed or be in a chair. Walking is near impossible until the next cortisone injections. I used to be on a lot of morphine but have decreased my dose to 15 mg 2x/day which still helps. What I want is to switch to CBD with a little THC. It’s been 8 months since I started using marijuana and I have yet to find that “sweet spot” you seem to talk about. I take 1/2 dropperful or .5 cc of CBD 2x/day. I also have a ittle edible THC. Perhaps I started the CBD dose a little high? I never did start off small and raise it until it was effective. How do you do that? Do you start with one drop for 2 weeks to see if there’s any effect then go to 2 drops etc. I found .5 cc is not that many drops. Perhaps 3? Getting off the morphine is my primary objective. Doing it with the help of CBD would be ideal. Thank you for accepting me into this group. Any advice is appreciated.

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@fifi I haven’t tried the Arnica tea but there is a lot of information out there about it. I have seen warnings on it and other supplements if you have high blood pressure or are taking blood pressure medications. If you do have high blood pressure I would discuss it with your doctor before trying it.

Mayo Clinic warning on Arnica and other supplements for blood pressure:
https://www.mayoclinic.org/diseases-conditions/high-blood-pressure/in-depth/blood-pressure/art-20045245?pg=2
WebMD information on Arnica
https://www.webmd.com/vitamins-supplements/ingredientmono-721-arnica.aspx?activeingredientid=721&activeingredientname=arnica
Natural Living Ideas – The Incredible Benefits & Uses of Arnica
http://www.naturallivingideas.com/benefits-uses-of-arnica/
Hope this helps…

John

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Thanks for all the great info on here. I had a lower back fusion over 10 years ago which helped at that time. I am now more pain symptoms which has brought me to see a pain specialist and a back surgeon. I am just looking for relief again. One wants to put a nerve stimulation device in my back which the back surgeon said that should be last resort. Ibuprofen I use everyday. Hydrocodone on bad days. I am just wondering which is the best surgeon to remove the old hardware in my back then install new that will fix my back again. I am 58 yrs old right now

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@hopeful33250

@caligodgirl Hello Cindy and welcome to Mayo Connect.

I am so sorry to hear of this difficult pain and internal bruising from scar tissue. Having lived with this for 5 years sounds so hard.

Do any of the doctors you have seen offer you any suggestions for this scar tissue problem?

Often large medical centers have a plethora of specialists who can help with severe problems like you have reported. Have you considered a second opinion from a large medical center like Mayo (they have locations in Minnesota, Florida and Arizona) or perhaps a large medical universtiy in your area?

We look forward to getting to know you and supporting you.

Teresa

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Hi Teresa, I cannot tell you how many specialists I’ve seen and have gone from UCSF, Stanford, University of Columbia in Missouri etc. I’ve been my biggest advocate for years an as I read one of these posts earlier the person mentioned “knowing your body better than anybody else” I have to agree 100%. These adhesion had gotten so bad starting in 2012 and after having donnevery test imaginable (ct, mri, colonoscopy, upper endoscopy, ultra sound and X-rays NOTHING was showing up for the case of this excruciating pain, weight loss and bruising. Finally my OB/GYN talked a general surgeon into exploratory surgery and they found the adhesions had formed between my abdominal wall and large intestine. Every time I moved or move it pulls the intestines and the doctors said it was so bad that I could have lost my life.
I’m sorry this is so long am to answer your question in regards to Mayo Clinic, no I have no been referred there yet but I’m ready to talk to my PCP about getting my a referral sent. There is a doctor in Los Gatos, Ca that specializes in nothing but endometriosis, abdominal adhesions and Chronic Pelvic Pain by the name of Dr Cook but the out of pocket for me would cost $20,000-$30,000 and that’s with great health benefits. I had to resign from my last job and have not worked for 4 years so coming up with that kind of money is next to impossible.
I do know that 5 states have legislatively recognized that this is a disease which is referred to as ARD adhesion related disease, but there just isn’t a lot of research being done for people suffering with these kind o issues. I appreciate this connection as I have always known and believed that men and women have had these kinds of problems way before me and I’m hoping we can all connect and share notes, experiences, information, anything that can help us relieve this pain to live with some sort of quality of life.
Again, thank you for the advise and I’m sorry this is so long!

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@hopeful33250

@caligodgirl Hello Cindy and welcome to Mayo Connect.

I am so sorry to hear of this difficult pain and internal bruising from scar tissue. Having lived with this for 5 years sounds so hard.

Do any of the doctors you have seen offer you any suggestions for this scar tissue problem?

Often large medical centers have a plethora of specialists who can help with severe problems like you have reported. Have you considered a second opinion from a large medical center like Mayo (they have locations in Minnesota, Florida and Arizona) or perhaps a large medical universtiy in your area?

We look forward to getting to know you and supporting you.

Teresa

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Hello @caligodgirl

It sounds as if you have sought out a lot of opinions and you really have advocated for yourself in this matter. Good for you!

I’m going to tag @kanaazpereira, a Moderator with Mayo Connect, who leads a discussion group about GI disorders and Gastroenterology Surgery. Perhaps she will have some suggestions for you. I’ll also tag @JustinMcClanahan who also is a moderator in our Chronic Pain discussion group and @lisalucier who is a Moderator for Women’s Issues. Also, some of Mayo’s mentors, @dawn_giacabazi @jimhd and @johnbishop who all deal with chronic pain.

Continue to post and let us know how you are doing with finding a doctor to help you treat this problem.

Teresa

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@hopeful33250

@caligodgirl Hello Cindy and welcome to Mayo Connect.

I am so sorry to hear of this difficult pain and internal bruising from scar tissue. Having lived with this for 5 years sounds so hard.

Do any of the doctors you have seen offer you any suggestions for this scar tissue problem?

Often large medical centers have a plethora of specialists who can help with severe problems like you have reported. Have you considered a second opinion from a large medical center like Mayo (they have locations in Minnesota, Florida and Arizona) or perhaps a large medical universtiy in your area?

We look forward to getting to know you and supporting you.

Teresa

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Hello @caligodgirl,

I’d like to add my welcome to Teresa’s. I’d also like to thank you for sharing about yourself and the struggles that you are facing. While I do not have the same issues, I do suffer from chronic pain and severe joint damage, and I know how debilitating pain can be, both mentally and physically.

Here is a link if you would like to get in contact with Mayo Clinic to seek an appointment and opinion from Mayo Clinic, mayocl.in/1mtmR63.

I am also going to share a few links to discussions that you my find interesting. Feel free to click on the links, read through them, and participate where you feel comfortable:

– Digestive health issues or womens health issues? https://connect.mayoclinic.org/discussion/digestive-health-issues-or-women-health-issues/
– Scheduling sacrocolpopexy and cystocele repair…more than a little scared, https://connect.mayoclinic.org/discussion/scheduling-sacrocolpopexy-and-cystocele-repair-more-than-a-little-scared/
– Chronic abdominal pain, https://connect.mayoclinic.org/discussion/chronic-abdominal-pain/

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@jeannegordon4

INTRODUCTION: I’m Jeanne, 78 yrs old with Fibromyalgia, Encapsulated Rt. shoulder, and DJD shoulder/hip/lower back pain (inflammation & soreness). The Fibromyalgia has been with me for most of this decade, the other conditions presenting since 1992. My actions to reduce/treat the orthopedic pain has been to lose 70 pounds 8 years ago, which eased fatigue and lessened ROM struggles, but brought on weakened leg muscles due to insufficient diet protein and causing ambulation problems. I take Rx Hydrocodone 5 mg-Acetaminophen-325 MG for pain which give enough pain relief for 3-4 hours daily to get chores completed, otherwise I’m not pain-free and miserable. A hot pad and bed rest are frequent treatments. And I’m just starting to wear a Quell pain relief brace. I have not asked my doctor about Lyrica Rx—the side effects sound daunting, BUT I WOULD LIKE TO HEAR FROM PEOPLE WHO HAVE TRIED IT.

I WOULD LIKE TO HEAR FROM OTHER FIBROMYALGIA SUFFERERS IN PARTICULAR and learn about their remedies for pain, inflammation, and soreness.

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Hello @jeannegordon4,

I apologize if this is repeat information. But I suggest checking out the following discussion centered around fibromyalgia specifically. Feel free to click on the link, read through the discussion, and participate where you feel comfortable:

– fibromyalgia pain, https://connect.mayoclinic.org/discussion/fibromyalgia-pain-28e002/

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@hopeful33250

@caligodgirl Hello Cindy and welcome to Mayo Connect.

I am so sorry to hear of this difficult pain and internal bruising from scar tissue. Having lived with this for 5 years sounds so hard.

Do any of the doctors you have seen offer you any suggestions for this scar tissue problem?

Often large medical centers have a plethora of specialists who can help with severe problems like you have reported. Have you considered a second opinion from a large medical center like Mayo (they have locations in Minnesota, Florida and Arizona) or perhaps a large medical universtiy in your area?

We look forward to getting to know you and supporting you.

Teresa

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Hello, @caligodgirl. I’d like to add my welcome to Mayo Clinic Connect. I also thought you’d like to meet some other members on Connect who have talked about abdominal scar tissue, or adhesions, like @judydex007, @rdrdhap, @ginpene05, @kag13 and @nonnie1.

Here are some discussions on Connect that may be interesting to you on adhesions:

– recurring abdominal adhesions: http://mayocl.in/2qWRN2R
– Bowel obstructions caused by adhesions following abdominal surgery: http://mayocl.in/2nhtuhj
– Scar tissue surrounding organs: http://mayocl.in/2o7g2LT

Have you found any strategies that help at all with the pain?

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@jamezy13

Thanks for all the great info on here. I had a lower back fusion over 10 years ago which helped at that time. I am now more pain symptoms which has brought me to see a pain specialist and a back surgeon. I am just looking for relief again. One wants to put a nerve stimulation device in my back which the back surgeon said that should be last resort. Ibuprofen I use everyday. Hydrocodone on bad days. I am just wondering which is the best surgeon to remove the old hardware in my back then install new that will fix my back again. I am 58 yrs old right now

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Hello @jamezy13,

Welcome to Connect. Thank you for posting about your back issues and sharing a bit about yourself. We have a recent conversation on Connect that members are discussing back surgeries and lingering pain that I think you may find relevant. I suggest clicking on the following link, reading through the discussion and participating where you feel comfortable,

– Surgical solutions to chronic cervical/back pain, https://connect.mayoclinic.org/discussion/surgical-solutions-to-chronic-cervicalback-pain/

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@hopeful33250

@caligodgirl Hello Cindy and welcome to Mayo Connect.

I am so sorry to hear of this difficult pain and internal bruising from scar tissue. Having lived with this for 5 years sounds so hard.

Do any of the doctors you have seen offer you any suggestions for this scar tissue problem?

Often large medical centers have a plethora of specialists who can help with severe problems like you have reported. Have you considered a second opinion from a large medical center like Mayo (they have locations in Minnesota, Florida and Arizona) or perhaps a large medical universtiy in your area?

We look forward to getting to know you and supporting you.

Teresa

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Hi Cindy @caligodgirl

I would like to add my welcome to Connect along with the others. I can see you’ve already gotten some good information from Teresa @hopeful33250, Justin @JustinMcClanahan and Lisa @lisalucier. My chronic pain is minute compared to what you are going through. It’s really good that you are a strong advocate and are asking questions and looking for answers. You are not alone. There is a TED talk that I found very inspiring and helpful. Hoping it may give you some help or insight.

What happens when you have a disease doctors can’t diagnose TED talk by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome.
https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose
John

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@hopeful33250

@caligodgirl Hello Cindy and welcome to Mayo Connect.

I am so sorry to hear of this difficult pain and internal bruising from scar tissue. Having lived with this for 5 years sounds so hard.

Do any of the doctors you have seen offer you any suggestions for this scar tissue problem?

Often large medical centers have a plethora of specialists who can help with severe problems like you have reported. Have you considered a second opinion from a large medical center like Mayo (they have locations in Minnesota, Florida and Arizona) or perhaps a large medical universtiy in your area?

We look forward to getting to know you and supporting you.

Teresa

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Hello again @caligodgirl

Since you last posted, I did find a website of specialists who study this disorder. Only a few are in the U.S., however, one is at Wayne State Univ. which is in Detroit, MI and there are a few others who do some work in the U.S. Here is the link to the website where they are listed by country and name, http://adhesionrelateddisorder.com/doctors.html. It looks like Sweden has done a lot of work in this area.

Also, here is patient website with information from others like you, http://www.adhesionrelateddisorder.com/

Teresa

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@hopeful33250

@caligodgirl Hello Cindy and welcome to Mayo Connect.

I am so sorry to hear of this difficult pain and internal bruising from scar tissue. Having lived with this for 5 years sounds so hard.

Do any of the doctors you have seen offer you any suggestions for this scar tissue problem?

Often large medical centers have a plethora of specialists who can help with severe problems like you have reported. Have you considered a second opinion from a large medical center like Mayo (they have locations in Minnesota, Florida and Arizona) or perhaps a large medical universtiy in your area?

We look forward to getting to know you and supporting you.

Teresa

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@caligodgirl another hello again ☺ — I forgot to mention another tool I use for research on drugs, medical procedures, etc. is Google Scholar (https://scholar.google.com/). It is useful to find the latest info on topics and allows you to sort the links it finds by date. I did a quick search on the phrase adhesion related disorders and it came up with quite a bit of information. I’m not sure if it’s helpful but it could be:
https://scholar.google.com/scholar?hl=en&as_sdt=1%2C24&as_ylo=2018&as_vis=1&q=adhesion+related+disorder&btnG=
John

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