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.

@mam14

I recently purchased a tincture with 1000 mg of medicine in 30 ml of oil, no THC. Do you have access to both? I don't in Alabama.

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@mam14, Greetings. Yes, I have access to all. I use two dosages: 2:1 CBD/THC and 1:1 CBD/THC. The 2:1 I just use under the tongue. The 1:1 I put in tea or another beverage. You do need to make sure you have something in your tummy and you never mix cannabis with alcohol. I have found the nighttime tincture reduces both anxiety and pain. That guarantees peaceful, restorative sleep. My goal is to be free of suffering and I wish that for you. Chris

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@rsnowflake

Hi I'm Renee I have a rare pain disorder, it's kinda like phantom pain but everywhere. I have a spinal implant in my back that helps , but sometimes it doesn't help. I'm glad you joined, there are great supportive people in the chronic pain group. I'm always up for listening. We understand how hard it is to live like this. Try anything you can to keep your mind off of things. I like to color and read at 45 I never thought I'd be saying that. I was diagnosed about 2 years ago.

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@renee, do you have a name for your painful condition? Though it is rare, there are a lot of people on this forum and someone may have it or know another that does. Just wondering. Blessings.

Liked by rsnowflake

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@jmjlove

@renee, do you have a name for your painful condition? Though it is rare, there are a lot of people on this forum and someone may have it or know another that does. Just wondering. Blessings.

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It's called complex regional pain syndrome, and I've spoken to several people in the forum that have it. It's bizarre we have the same thing, but we've all have different stories. There are only 200,000 people in the us have been diagnosed, I can guarantee you that many more suffer from it but can't find someone to diagnose them. That's more terrible than me knowing what I have. And i am lucky enough to be in a state that has medical marijuana
It helps… though I'm a mom of a 16 year old, i took her to all the appointments so she would understand. This diagnosis crps/ or red is 1 of the 23 disorders on the medical marijuana list. Thanks for asking !!! I try and help any in the forum who need it or just needs a shoulder to lean on kinda…lol. I'll always be around for any chronic pain people who feels like no one gets it!!!

Liked by jmjlove

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@artscaping

@mam14, Greetings. Yes, I have access to all. I use two dosages: 2:1 CBD/THC and 1:1 CBD/THC. The 2:1 I just use under the tongue. The 1:1 I put in tea or another beverage. You do need to make sure you have something in your tummy and you never mix cannabis with alcohol. I have found the nighttime tincture reduces both anxiety and pain. That guarantees peaceful, restorative sleep. My goal is to be free of suffering and I wish that for you. Chris

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@artscaping Hi Chris! Are you an artist? Also, where do you get your CBD oils?

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@rsnowflake

It's called complex regional pain syndrome, and I've spoken to several people in the forum that have it. It's bizarre we have the same thing, but we've all have different stories. There are only 200,000 people in the us have been diagnosed, I can guarantee you that many more suffer from it but can't find someone to diagnose them. That's more terrible than me knowing what I have. And i am lucky enough to be in a state that has medical marijuana
It helps… though I'm a mom of a 16 year old, i took her to all the appointments so she would understand. This diagnosis crps/ or red is 1 of the 23 disorders on the medical marijuana list. Thanks for asking !!! I try and help any in the forum who need it or just needs a shoulder to lean on kinda…lol. I'll always be around for any chronic pain people who feels like no one gets it!!!

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Thank you, Renee. For those of us who know very little about CRPS, would you mind explaining a little about how this came on? What symptoms did you present with? How things developed as years went by?

Delighted you get relief from marijuana. My brother was stage4 cancer and he swore by it. He suggested I try some. So I would crumble it on food or stir it in yogurt. Had little effect so he said I may need to heat it to release the medicinal properties. Little effect. Then I smoked it and hated the effect because it made me feel like I did after stroke. Off balance and foggy. Just as well, since I had no MM card and didn't want to operate like that. I also did not want to mess up getting the only med that does help, which is a scheduled med. My med of choice is not a popular one, except for non-law abiding citizens, lol. I am given a 20 day supply, 10 days off, then new script. My ten days off serve the purpose of rebooting my brain, so the med is effective in time for my next 20 days. It's a bit of a rollercoaster, but I don't need to bump up mgs or use a more powerful med. Don't want to go there. Don't want to go over the 10mgs oxycodone I get now. Do you need to deal with tolerance issues with MM? Use more frequently because your body is used to it? Public opinion and medical professionals would like to see this med (oxycodone) go away, and I do not disagree, but as yet there is nothing out there I respond well to. Nerve medications not only are not effective usually, but even if they are i get brain issues, i fall, pass out, amnesia. I use a stimulator, have been in therapy for long time, and those are beneficial along with heat and ice, but they do not give me my 20 good days which I use to travel ( 6 kids, 14 grandkids to play with :)) , care for my dad, and maintain a minimal level of comfort I would not have otherwise. At 60 years old, I'm not looking for thrills. There are none anyway. Like most on these forums, just looking to function and not have a pain cloud hanging over me every day. Thank God, my doctor knows me, my conditions, my lifestyle, and allows me this relief. I have no reason or desire to abuse. But I do deal with "chronic pain shame" If relief came in another fashion, I'd be on board. After 17 surgeries throughout my adult life, surgery at this point and by my choice, is only to save my life. A body can only be traumatized so many times before it throws in the towel. Doesnt heal well, and we don't bounce back.

All that^^^^^^^is about me. Oh, why do I do that??? It's CRPS I wanted to know sbout, and here you get my story, lol. When you're up to it, would love to hear your story. In the meantime, I'll go reread what you did post. Maybe I just need to refresh my memory, which is like a collander. Lots of info slips out the holes. God bless.

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@windwalker

@artscaping Hi Chris! Are you an artist? Also, where do you get your CBD oils?

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@windwalker, Good Morning. No, I only wish I was an artist. I am awed by the creative and talented folks who add beauty to our lives. I owned a gallery and was an interior designer. What a great chapter in my life. I use vape capsules, and tinctures as well as topicals…..all from the medical cannabis section of the dispensary. All of my solutions contain both CBD and THC at different levels depending on how and what I medicate. I have been exploring cannabis solutions for chronic pain for several years with the knowledge and cooperation of my neurologist and primary care provider (pcp). Be well and safe from harm. Chris

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@artscaping

@windwalker, Good Morning. No, I only wish I was an artist. I am awed by the creative and talented folks who add beauty to our lives. I owned a gallery and was an interior designer. What a great chapter in my life. I use vape capsules, and tinctures as well as topicals…..all from the medical cannabis section of the dispensary. All of my solutions contain both CBD and THC at different levels depending on how and what I medicate. I have been exploring cannabis solutions for chronic pain for several years with the knowledge and cooperation of my neurologist and primary care provider (pcp). Be well and safe from harm. Chris

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@artscaping, Hello, I'm very interested in your post. I hope to hear more of your experience. Thank you!

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This is my first post. I’ve had rectal pain non stop for seven years. It started after having a BCIR surgery. That is an internal bag for waste made out of small intestine so it can be emptied using a catheter. My rectum was removed forty years ago due to ulcerative colitis. I had illiosmy for two years then a Koch Pouch which is similar to the BCIR. It lasted for many years until 2000 with the valve failed and started leaking. The rectal pain is unrelenting and feels like a hot jagged post twisting and poking into my backside. I’ve tried everything from a hysterectomy to a spinal laminectomy to every kind of injections you can think of. I’ve recently received a DRG Stimulator that goes under the tailbone. It is the first thing to give any marked relief but the pain is still such that my life is very restricted. Has anyone ever heard of a intrathecal pump for pain in this area?

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@sunshineme

Hello….I live with chronic pain. I was diagnosed with CFS/Fibromyalgia in 2001 but was treated for suspected Lyme’s this year as was bitten in 2000 and had the EM rash, Bells Palsy.Since treatment my pain and fatigue has increased and I burn severely on waking. I have had lesions which have now cleared. Wondered if anyone here has Chronic Lyme’s or (suspected)and experiences severe burning as if from inside out but their skin hurts too.
I would like to share with anyone who has similar symptoms?
(Bloods results were negative)
I try to do the best I can with my limitations. I used to write music and still compose poetry and when have energy, do bespoke calligraphy.
Thank you.

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I had fibromyalgia until I was treated for thyroid disorder. The pain just went away. The all over body pain that is. It might be worth investigating.

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@skippyr

I had fibromyalgia until I was treated for thyroid disorder. The pain just went away. The all over body pain that is. It might be worth investigating.

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@skippyr good for you but my Throat d I'd fine still have it

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@jmjlove

Thank you, Renee. For those of us who know very little about CRPS, would you mind explaining a little about how this came on? What symptoms did you present with? How things developed as years went by?

Delighted you get relief from marijuana. My brother was stage4 cancer and he swore by it. He suggested I try some. So I would crumble it on food or stir it in yogurt. Had little effect so he said I may need to heat it to release the medicinal properties. Little effect. Then I smoked it and hated the effect because it made me feel like I did after stroke. Off balance and foggy. Just as well, since I had no MM card and didn't want to operate like that. I also did not want to mess up getting the only med that does help, which is a scheduled med. My med of choice is not a popular one, except for non-law abiding citizens, lol. I am given a 20 day supply, 10 days off, then new script. My ten days off serve the purpose of rebooting my brain, so the med is effective in time for my next 20 days. It's a bit of a rollercoaster, but I don't need to bump up mgs or use a more powerful med. Don't want to go there. Don't want to go over the 10mgs oxycodone I get now. Do you need to deal with tolerance issues with MM? Use more frequently because your body is used to it? Public opinion and medical professionals would like to see this med (oxycodone) go away, and I do not disagree, but as yet there is nothing out there I respond well to. Nerve medications not only are not effective usually, but even if they are i get brain issues, i fall, pass out, amnesia. I use a stimulator, have been in therapy for long time, and those are beneficial along with heat and ice, but they do not give me my 20 good days which I use to travel ( 6 kids, 14 grandkids to play with :)) , care for my dad, and maintain a minimal level of comfort I would not have otherwise. At 60 years old, I'm not looking for thrills. There are none anyway. Like most on these forums, just looking to function and not have a pain cloud hanging over me every day. Thank God, my doctor knows me, my conditions, my lifestyle, and allows me this relief. I have no reason or desire to abuse. But I do deal with "chronic pain shame" If relief came in another fashion, I'd be on board. After 17 surgeries throughout my adult life, surgery at this point and by my choice, is only to save my life. A body can only be traumatized so many times before it throws in the towel. Doesnt heal well, and we don't bounce back.

All that^^^^^^^is about me. Oh, why do I do that??? It's CRPS I wanted to know sbout, and here you get my story, lol. When you're up to it, would love to hear your story. In the meantime, I'll go reread what you did post. Maybe I just need to refresh my memory, which is like a collander. Lots of info slips out the holes. God bless.

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Well it started 2 years ago when I broke my ankle. My orthopedic surgeon kept saying it was healing great according to the xrays, but it was still very swollen and had a purple and blue tone, and it hurt like hell if any one touched it. He happened to know another orthopedic surgeon who studied complex regional pain syndrome at Jefferson Hospital. But now worked with the Rothman clinic. My doctor actually drove me 2 the other office to show the other doctor my foot. He immediately was like it looks like you have C.R.P.S. . Symptoms are severe pain in an appendage after you've broken or sprained something. It also turns bluish and purple. The pain is unreal. They call the skin " mermaid " skin.

Liked by jmjlove

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@skippyr

I had fibromyalgia until I was treated for thyroid disorder. The pain just went away. The all over body pain that is. It might be worth investigating.

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Almost makes one wonder if it ever was fibro, and not thyroid complications. Do you think it possible? Just wondering. Hope you are now much better. These issues make life so stinkin hard! God bless!

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@rsnowflake

Well it started 2 years ago when I broke my ankle. My orthopedic surgeon kept saying it was healing great according to the xrays, but it was still very swollen and had a purple and blue tone, and it hurt like hell if any one touched it. He happened to know another orthopedic surgeon who studied complex regional pain syndrome at Jefferson Hospital. But now worked with the Rothman clinic. My doctor actually drove me 2 the other office to show the other doctor my foot. He immediately was like it looks like you have C.R.P.S. . Symptoms are severe pain in an appendage after you've broken or sprained something. It also turns bluish and purple. The pain is unreal. They call the skin " mermaid " skin.

Jump to this post

Wow! Sounds terrible. But it does help to have a diagnosis. For me, when no one can tell me difinitively what the beejeebers is going on, I tend to obssess. At least I can be proactive if I know what's going on.

11 months in a boot is a very long time! Swelling and pain must have been hard to deal with!

My son, almost one year ago had a terrible scaffolding accident. His worst injury was crushing, literally, both bones in lower right leg. Trauma team did immediate surgery to drain blood and fluids. Put him in a contraption that was both inside and outside held in place with metal to keep foot from flopping. He had to wait 4 weeks for the big fixit surgery. The surgeons choose to rebuild the leg rather than amputate. Thank God. At ankle and knee there was large bone fragments they could attach rods and screws to. He spent 5 months in a hospital bed at home. Then, incrementally he increased time spent upright. Seems he would have been a perfect candidate for CRPS. Been almost a year and he is just now getting back to work. Got married on crutches. He ran his own business, so he can limit type of work he takes on.

Is CRPS an auto-immune condition? Like rheumatoid? Son will never regain ROM, but is just thankful to have his leg. Hopefully the healing continues.

Strange how your poor skin is affected. Son's leg is still swollen and purplish. But skin seems ok, so that's good. How is your ankle now, or are you doomed to pain for the long haul?

If I'm being a pain, do not worry, I am just curious and am trying to understand what CRPS patients deal with….not add to your pain 😉 I won't be offended if you don't reply. God bless.

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@jmjlove

Wow! Sounds terrible. But it does help to have a diagnosis. For me, when no one can tell me difinitively what the beejeebers is going on, I tend to obssess. At least I can be proactive if I know what's going on.

11 months in a boot is a very long time! Swelling and pain must have been hard to deal with!

My son, almost one year ago had a terrible scaffolding accident. His worst injury was crushing, literally, both bones in lower right leg. Trauma team did immediate surgery to drain blood and fluids. Put him in a contraption that was both inside and outside held in place with metal to keep foot from flopping. He had to wait 4 weeks for the big fixit surgery. The surgeons choose to rebuild the leg rather than amputate. Thank God. At ankle and knee there was large bone fragments they could attach rods and screws to. He spent 5 months in a hospital bed at home. Then, incrementally he increased time spent upright. Seems he would have been a perfect candidate for CRPS. Been almost a year and he is just now getting back to work. Got married on crutches. He ran his own business, so he can limit type of work he takes on.

Is CRPS an auto-immune condition? Like rheumatoid? Son will never regain ROM, but is just thankful to have his leg. Hopefully the healing continues.

Strange how your poor skin is affected. Son's leg is still swollen and purplish. But skin seems ok, so that's good. How is your ankle now, or are you doomed to pain for the long haul?

If I'm being a pain, do not worry, I am just curious and am trying to understand what CRPS patients deal with….not add to your pain 😉 I won't be offended if you don't reply. God bless.

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Thank God they saved his leg. I had a blood clot in my foot a few years ago and almost lost it to amputation. And I agree knowing is so better. Wishing u ur son pain free days.

Liked by jmjlove

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@tjp4

Thank God they saved his leg. I had a blood clot in my foot a few years ago and almost lost it to amputation. And I agree knowing is so better. Wishing u ur son pain free days.

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Oh my! So glad u still have foot! Funny, but I had two blood clots in arm. One in each artery. Like you, I almost lost the arm. Had I waited any longer I would have. So, seems we have that in common. Is your foot your source of chronic pain? If so, how do you treat your pain? Glad you've joined in discussion. Or, maybe you've been on this forum for a while..*she shrugs*. I am new and just beginning to recognize names. Thanks for the kind wish. Same to you!

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