Hi folks @arniec and @luann262. I hope you are well this evening.
Thank you both for your inquiries. I'm happy to share all I can in order to possibly help someone's journey. It's a little easier for me to answer you both in the same post. This way you can pick through what you wish to learn about my condition and my journey.
Your questions were:
1. What condition do I have?
2. Will I share a bit more about my Mayo Pain Rehab experience?
My condition(s) have been a little confusing along the way so I have attached my neuropathy story from May 2020 (it's long, my apologies):
I have also attached a conversation I created the day I began Mayo Pain Rehabilitation October 2020. It may be helpful to skim through and look for parts where I detail PRC and my experience:
Ultimately, I learned I have Central Sensitization Syndrome which is a chronic pain and sensory syndrome. Here is more on CSS:
I know I threw a lot your way, but I'm an open book and glad to pay it forward. Please let me know if you have any further questions or would like clarification on anything. Take care.
Hi folks @arniec and @luann262. I hope you are well this evening.
Thank you both for your inquiries. I'm happy to share all I can in order to possibly help someone's journey. It's a little easier for me to answer you both in the same post. This way you can pick through what you wish to learn about my condition and my journey.
Your questions were:
1. What condition do I have?
2. Will I share a bit more about my Mayo Pain Rehab experience?
My condition(s) have been a little confusing along the way so I have attached my neuropathy story from May 2020 (it's long, my apologies):
I have also attached a conversation I created the day I began Mayo Pain Rehabilitation October 2020. It may be helpful to skim through and look for parts where I detail PRC and my experience:
Ultimately, I learned I have Central Sensitization Syndrome which is a chronic pain and sensory syndrome. Here is more on CSS:
I know I threw a lot your way, but I'm an open book and glad to pay it forward. Please let me know if you have any further questions or would like clarification on anything. Take care.
FYI: Another tip that may be helpful is to click on my name @rwinney. From there click on Profile & Settings then scroll down to Discussions (on the left, in blue). It will take you to every discussion I have started.
Hello, I see a pain doctor every 3 months. I take a Fentynl patch of 50mcg every 48 hours. I am slowly starting to titrate off of hydrocodone. I take 5.5 tabs throughout a 24 hour period. I have never been tested for the reason or reasons why I have this Chronic pain. My new pain Doctor only wants to talk about titration, which I would be more on board with if we knew what is causing this??. I have excruciating pain throughout my whole body. My hip or sciatic is taking on new symptoms and getting worse. I live in Idaho marijuana use is illegal. My former pain Doctor ( now retired) had no problem with me using it, but I have not asked this new Doctor. Plus, I have urinalisis taken yearly so I don't understand how my other Doc. said yes to it. You can buy it 45 minutes away in Oregon. I don't want to be on pain meds, but I don't know what to do? I have other health issues and one of my Doctors wants to refer me to the Mayo clinic. I'm so tired and I just feel myself getting worse. I really do not know what to do? This is much more complicated than trying to wrap up in a paragraph. Any suggestions would be very helpful. Stacy
@eloise44 Hello Stacy. How long have you been feeling this way, with no diagnosis? Do you have a neurologist? Is that who wants you to be seen at Mayo?
Hello Rachel, I do have a diagnosis Chronic Pain Syndrome, but nothing was done to make sure that something else is wrong with me. They asked questions and said I have Chronic Pain. Now my new pain Doctor just talks about titration of the meds. Well, should we find out for sure I don't have other problems?? There was nothing leading up to this pain. I was going on vacation, when we arrived I was in pain. I thought I was sick, but it got worse so we came home and I saw my regular Doctor who gave me hydrocodone and sent me to a pain clinic. By the way, that was years ago.
I do have Lewy Bodies Dementia, Bipolar 1, PTSD, panic anxiety disorder. Prior to this pain I was just fine. I mean I had a meds Doctor for my mental health and A psychatrist. It was also before dementia. I'm writing this kinda in a nutshell because it's complicated. I feel like I am not being taken care of properly and I am the one that wants to come to the Mayo Clinic. I am going to my Doctor for a referal. I am desperate. I have really no life anymore. This pain effects every faucet of my life. If it is Chronic Pain then I will accept that, but to never have anything done bothers me. My other pain Doctor did these shots in my back for my neck and that was disastrous. I have this feeling in my back at all times it's very hard to explain it is like electrical and feels like I'm being bit. When it happened I told the doc. he said it was necroitis. Please excuse my spelling, punctuation and sentence structure I have lost this. I had a neurologist, but I had so many specialists and she was testing me with cat scans, mri, and pet scan. I asked my Doctor at the time if I needed a neurologist she said not really so I quit going. I had seen many neurologists in the beginning to make sure, well as sure as you can because you can't be positive until I die and they dissect my brain. I asked over and over is it Lewy Body. I had one Doctor yell at me and say stop asking yes you have Lewy body. I'm very tired mentally and physically. I feel, as I said, just left behind. They go through motions prescribe meds and that's it. By the way, my new pain Doctor I don't care for at all, but I can not change pain doctors. My regular Doctor told me this and she really doesn't no why. I have no problems and have never had any problems with the pain clinic. So why can I not change my Doctor we just do not fit. I mean at all. I can not believe that I have to stay with a Doctor that does not fit, but I do. I have no control over this part of my health care. I did not ask to be put on these meds. I don't want them, but without them I would literally be in bed and that is the facts.
I know I am just going on and on. I'm sorry about this Rachel. I am trying to explain everything, but there is so much and this has been years. Thank you for asking. Have a nice evening. Sincerely, Stacy
Good evening @jlo70. It looks like you joined Connect right after Christmas. That is a good way to begin a new year. And today is 2/22/2022. I wanted to respond to your request for information about medical cannabis. You indicate that you have not found pain relief from arthritis when using a cream or tincture without THC.
What you miss without THC is the "entourage effect". You can read about that phenomenon on Leafly.....a good cannabis website for valuable and reliable information.
I have been managing my small fiber neuropathy pain for several years with just two medial cannabis products......Tinctures and Topicals. I use two different dosages. At bedtime, I use a measured amount on the dropper, e.g. 25ml depending on how adapted my body is to the amount of 2:1 CBD/THC. At this point I actually use the entire dropper.....but please don't start there. In the morning to get my day started I use a 1:1 CBD/THC but only 50 ml.
For pain and tingle tangles in my hands or feet, I use one of two topicals. One is a 3:1 CBD/THC that I rub into my hands thoroughly. This dosage is for chronic pain. When I have a flare, I will use a 1:3 CBD/THC for acute pain.
I don't know where you live. Can you tell me what the marijuana laws are in your state? Do you need a prescription so that you can get a medical marijuana card? Also, when you visit the dispensary in a legal state there are special pharmacists that can help you get started on the right product with the right dosage.
It takes a little experimenting. For a good explanation in addition to Leafly, you can visit Papa and Barkley......a company in CA that I have been using for about five years. They have all CBD products that can be shipped to you on one section of their site and the CBD/THC products that can be found in legal dispensaries.
Please don't be leery about asking questions of me or anyone in the field of medical cannabis. Good luck......I hope you find relief for your arthritis. Please don't use these products with opioids or alcohol. I have only had 2 overdoses in all the years I have been using cannabis and it wasn't fun. Takes about three hours to wear off......and you will be more careful from then on.
Does this help clear the air a bit? And do me a favor.....do not buy street products. The reason that legality helps us all is that it assures regulation so that we can trust the origin and quality of the products.
May you be free of suffering and the causes of suffering.
Chris
Thank you so much for all of that info, Chris, I’ll look into all of it and see what I think. Just curious, do you get a buzz from any of your products and methods? I’m definitely not looking for a buzz, as I need to be able to work and go about my normal life, and do t want to feel like I’m in an altered state of any kind.
Hello Rachel, I do have a diagnosis Chronic Pain Syndrome, but nothing was done to make sure that something else is wrong with me. They asked questions and said I have Chronic Pain. Now my new pain Doctor just talks about titration of the meds. Well, should we find out for sure I don't have other problems?? There was nothing leading up to this pain. I was going on vacation, when we arrived I was in pain. I thought I was sick, but it got worse so we came home and I saw my regular Doctor who gave me hydrocodone and sent me to a pain clinic. By the way, that was years ago.
I do have Lewy Bodies Dementia, Bipolar 1, PTSD, panic anxiety disorder. Prior to this pain I was just fine. I mean I had a meds Doctor for my mental health and A psychatrist. It was also before dementia. I'm writing this kinda in a nutshell because it's complicated. I feel like I am not being taken care of properly and I am the one that wants to come to the Mayo Clinic. I am going to my Doctor for a referal. I am desperate. I have really no life anymore. This pain effects every faucet of my life. If it is Chronic Pain then I will accept that, but to never have anything done bothers me. My other pain Doctor did these shots in my back for my neck and that was disastrous. I have this feeling in my back at all times it's very hard to explain it is like electrical and feels like I'm being bit. When it happened I told the doc. he said it was necroitis. Please excuse my spelling, punctuation and sentence structure I have lost this. I had a neurologist, but I had so many specialists and she was testing me with cat scans, mri, and pet scan. I asked my Doctor at the time if I needed a neurologist she said not really so I quit going. I had seen many neurologists in the beginning to make sure, well as sure as you can because you can't be positive until I die and they dissect my brain. I asked over and over is it Lewy Body. I had one Doctor yell at me and say stop asking yes you have Lewy body. I'm very tired mentally and physically. I feel, as I said, just left behind. They go through motions prescribe meds and that's it. By the way, my new pain Doctor I don't care for at all, but I can not change pain doctors. My regular Doctor told me this and she really doesn't no why. I have no problems and have never had any problems with the pain clinic. So why can I not change my Doctor we just do not fit. I mean at all. I can not believe that I have to stay with a Doctor that does not fit, but I do. I have no control over this part of my health care. I did not ask to be put on these meds. I don't want them, but without them I would literally be in bed and that is the facts.
I know I am just going on and on. I'm sorry about this Rachel. I am trying to explain everything, but there is so much and this has been years. Thank you for asking. Have a nice evening. Sincerely, Stacy
Ughhh @eloise44 Stacy, I'm so sorry to hear your doctor gave you hydrocodone for chronic pain, so did mine, and I wish he never did. The good news here is that even though it's frustrating to you, titrating off is the best thing possible. Hydrocodone does you no favors mentally which may be why you are confused and overwhelmed. Opiates can induce pain, it's call hyperalgesia and many times we don't realize its even happening until we are off opiates and feel the settling. Here is an explanation of hyperalgesia:
It is confusing as hell to have a chronic pain syndrome and always wonder if other conditions may be present beyond the syndrome. I have Central Sensitization Syndrome so I understand what you are saying. Here is a video about CSS. Perhaps it will resonate with you and help explain what you are going through. Will you let me know your thoughts after watching?
Stacy, you have every right to be your own health care advocate. You do not have to accept drugs that are prescribed to you, but I understand that it is difficult when you have no other plan to manage chronic pain. Many times specialty doctors are just as confused in understanding chronic pain. It does not line up with acute pain therefor they may not know how to help you manage effectively. I found that chronic pain management falls on the patient. Once we stop looking for fixes and cures and accept that we can have more control over our mind and bodies than we realize, change can come.
What is the first thing you would like to change for the better regarding your healthcare?
Thank you so much for all of that info, Chris, I’ll look into all of it and see what I think. Just curious, do you get a buzz from any of your products and methods? I’m definitely not looking for a buzz, as I need to be able to work and go about my normal life, and do t want to feel like I’m in an altered state of any kind.
Good evening @jlo70, I am glad you found value in the information about my experiences. Now comes that hard part. Would you please describe a buzz for me? I think I used to get more of what I would call a buzz from Jack Daniels Special Select which I gave up recently. I have had two “buzzy” incidents in the 7 or 8 years of using medical cannabis. Both had to do with learning not to drink alcohol with cannabis. It took about 3 hours of hand holding to come back to normal. Once in a while when I get a new tincture that I haven’t tried before, I start with only half of my regular dose to make sure there will be no buzz.
The only other time that I feel a “buzz” would be when I am exhausted and my body tells me to take a nap. I sort of drift off. You can control your dosages based upon your reactions and activity levels.
May you be free, safe and protected from inner and outer harm.
Chris
Good evening @jlo70, I am glad you found value in the information about my experiences. Now comes that hard part. Would you please describe a buzz for me? I think I used to get more of what I would call a buzz from Jack Daniels Special Select which I gave up recently. I have had two “buzzy” incidents in the 7 or 8 years of using medical cannabis. Both had to do with learning not to drink alcohol with cannabis. It took about 3 hours of hand holding to come back to normal. Once in a while when I get a new tincture that I haven’t tried before, I start with only half of my regular dose to make sure there will be no buzz.
The only other time that I feel a “buzz” would be when I am exhausted and my body tells me to take a nap. I sort of drift off. You can control your dosages based upon your reactions and activity levels.
May you be free, safe and protected from inner and outer harm.
Chris
Hi Chris. Medical Marijuana can be tricky to use. I have found it to be helpful as a tincture. Can’t smoke it and the tincture is easier to control. Lately I use at bedtime, but could be used throughout the day. No buzz because I use three drops under the tongue and this is a hybrid strain (equal ratio of cbd to thc). Have never been a pot smoker, more of a wine person, so the tincture was more tolerable and dose accurate for me. Begin low and adjust to your needs.
Best, Catharine
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Hi folks @arniec and @luann262. I hope you are well this evening.
Thank you both for your inquiries. I'm happy to share all I can in order to possibly help someone's journey. It's a little easier for me to answer you both in the same post. This way you can pick through what you wish to learn about my condition and my journey.
Your questions were:
1. What condition do I have?
2. Will I share a bit more about my Mayo Pain Rehab experience?
My condition(s) have been a little confusing along the way so I have attached my neuropathy story from May 2020 (it's long, my apologies):
- https://connect.mayoclinic.org/comment/310343/
I have also attached a conversation I created the day I began Mayo Pain Rehabilitation October 2020. It may be helpful to skim through and look for parts where I detail PRC and my experience:
- https://connect.mayoclinic.org/discussion/mayo-pain-rehabilitation-program/
Ultimately, I learned I have Central Sensitization Syndrome which is a chronic pain and sensory syndrome. Here is more on CSS:
I know I threw a lot your way, but I'm an open book and glad to pay it forward. Please let me know if you have any further questions or would like clarification on anything. Take care.
-
Like -
Helpful -
Hug
1 ReactionFYI: Another tip that may be helpful is to click on my name @rwinney. From there click on Profile & Settings then scroll down to Discussions (on the left, in blue). It will take you to every discussion I have started.
@eloise44 Hello Stacy. How long have you been feeling this way, with no diagnosis? Do you have a neurologist? Is that who wants you to be seen at Mayo?
Hello Rachel, I do have a diagnosis Chronic Pain Syndrome, but nothing was done to make sure that something else is wrong with me. They asked questions and said I have Chronic Pain. Now my new pain Doctor just talks about titration of the meds. Well, should we find out for sure I don't have other problems?? There was nothing leading up to this pain. I was going on vacation, when we arrived I was in pain. I thought I was sick, but it got worse so we came home and I saw my regular Doctor who gave me hydrocodone and sent me to a pain clinic. By the way, that was years ago.
I do have Lewy Bodies Dementia, Bipolar 1, PTSD, panic anxiety disorder. Prior to this pain I was just fine. I mean I had a meds Doctor for my mental health and A psychatrist. It was also before dementia. I'm writing this kinda in a nutshell because it's complicated. I feel like I am not being taken care of properly and I am the one that wants to come to the Mayo Clinic. I am going to my Doctor for a referal. I am desperate. I have really no life anymore. This pain effects every faucet of my life. If it is Chronic Pain then I will accept that, but to never have anything done bothers me. My other pain Doctor did these shots in my back for my neck and that was disastrous. I have this feeling in my back at all times it's very hard to explain it is like electrical and feels like I'm being bit. When it happened I told the doc. he said it was necroitis. Please excuse my spelling, punctuation and sentence structure I have lost this. I had a neurologist, but I had so many specialists and she was testing me with cat scans, mri, and pet scan. I asked my Doctor at the time if I needed a neurologist she said not really so I quit going. I had seen many neurologists in the beginning to make sure, well as sure as you can because you can't be positive until I die and they dissect my brain. I asked over and over is it Lewy Body. I had one Doctor yell at me and say stop asking yes you have Lewy body. I'm very tired mentally and physically. I feel, as I said, just left behind. They go through motions prescribe meds and that's it. By the way, my new pain Doctor I don't care for at all, but I can not change pain doctors. My regular Doctor told me this and she really doesn't no why. I have no problems and have never had any problems with the pain clinic. So why can I not change my Doctor we just do not fit. I mean at all. I can not believe that I have to stay with a Doctor that does not fit, but I do. I have no control over this part of my health care. I did not ask to be put on these meds. I don't want them, but without them I would literally be in bed and that is the facts.
I know I am just going on and on. I'm sorry about this Rachel. I am trying to explain everything, but there is so much and this has been years. Thank you for asking. Have a nice evening. Sincerely, Stacy
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2 ReactionsThank you so much for all of that info, Chris, I’ll look into all of it and see what I think. Just curious, do you get a buzz from any of your products and methods? I’m definitely not looking for a buzz, as I need to be able to work and go about my normal life, and do t want to feel like I’m in an altered state of any kind.
Ughhh @eloise44 Stacy, I'm so sorry to hear your doctor gave you hydrocodone for chronic pain, so did mine, and I wish he never did. The good news here is that even though it's frustrating to you, titrating off is the best thing possible. Hydrocodone does you no favors mentally which may be why you are confused and overwhelmed. Opiates can induce pain, it's call hyperalgesia and many times we don't realize its even happening until we are off opiates and feel the settling. Here is an explanation of hyperalgesia:
- https://www.webmd.com/pain-management/what-is-hyperalgesia
It is confusing as hell to have a chronic pain syndrome and always wonder if other conditions may be present beyond the syndrome. I have Central Sensitization Syndrome so I understand what you are saying. Here is a video about CSS. Perhaps it will resonate with you and help explain what you are going through. Will you let me know your thoughts after watching?
- https://youtu.be/vJNhdnSK3WQ
Stacy, you have every right to be your own health care advocate. You do not have to accept drugs that are prescribed to you, but I understand that it is difficult when you have no other plan to manage chronic pain. Many times specialty doctors are just as confused in understanding chronic pain. It does not line up with acute pain therefor they may not know how to help you manage effectively. I found that chronic pain management falls on the patient. Once we stop looking for fixes and cures and accept that we can have more control over our mind and bodies than we realize, change can come.
What is the first thing you would like to change for the better regarding your healthcare?
-
Like -
Helpful -
Hug
1 ReactionGood evening @jlo70, I am glad you found value in the information about my experiences. Now comes that hard part. Would you please describe a buzz for me? I think I used to get more of what I would call a buzz from Jack Daniels Special Select which I gave up recently. I have had two “buzzy” incidents in the 7 or 8 years of using medical cannabis. Both had to do with learning not to drink alcohol with cannabis. It took about 3 hours of hand holding to come back to normal. Once in a while when I get a new tincture that I haven’t tried before, I start with only half of my regular dose to make sure there will be no buzz.
The only other time that I feel a “buzz” would be when I am exhausted and my body tells me to take a nap. I sort of drift off. You can control your dosages based upon your reactions and activity levels.
May you be free, safe and protected from inner and outer harm.
Chris
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Helpful -
Hug
1 ReactionHi Chris. Medical Marijuana can be tricky to use. I have found it to be helpful as a tincture. Can’t smoke it and the tincture is easier to control. Lately I use at bedtime, but could be used throughout the day. No buzz because I use three drops under the tongue and this is a hybrid strain (equal ratio of cbd to thc). Have never been a pot smoker, more of a wine person, so the tincture was more tolerable and dose accurate for me. Begin low and adjust to your needs.
Best, Catharine
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Helpful -
Hug
2 ReactionsCan you use Medical Marijuana or oil rubs on medication? I have neuropathy in the bottom of my feet
I found this. Good site, very thorough. https://www.medicaljane.com/2013/08/16/vaporizing-cannabis-is-an-effective-treatment-for-neuropathic-pain/
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