You're welcome. Regular Naltrexone 25mg and 50mg doses are for drug and alcohol relapses, or to prevent them I should say. Low-dose naltrexone such as 4.5mg - 7.5mg shows promise for reducing CRPS pain, they say. I am wary about it only because opioids work, when I can find a doctor who isn't afraid of politics, few and far between. Twenty years of medical records with CRPS and it's the same ole song and dance. Sick of it. Wish doctors would understand that those who truly need pain relief are not drug addicts. They worry you may become addicted, I think they should be more concerned that the pain drives one to suicide. I am not suicidal, it's just a statement, have too much to lose these days.
@chuck406 I hear ya and share in that frustration!! I decided to avoid the opioid route for now and get a spinal cord stimulator implanted instead, in a few weeks actually (trial first, then the real deal). I am not suicidal either, but I can seriously relate to wanting constant, torturous pain to finally end. I'd cut my left arm off in a second if it was offered to me. I'm tired of being so nauseous all the time too. But, grateful for the journey and how far I've come. Looking forward to a much brighter future! Stay strong, friend!
Next year, when your daughter is 18, you'll have a better handle on pain control and whether or not things like meds, injections or implants continue to be beneficial.
I hope she finds ways to manage her pain enough to keep up with school again this year. It all must be quite stressfull. You mentioned ketamine infusions are helping to provide some relief. How long has she been receiving them? Has she experienced side effects?
Sorry am slow responding-- so she was diagnosed in March 2021, and after failed meds and ganglion stellate block, we started ketamine in April 2021-- 3 weeks twice a week to begin, and now a booster treatment about every 10 weeks.. it's a rough few days after the treatments (completely exhausted and can't do anything)- but then the pain starts to lower slowly and can get as low as 2 or 3- which is great... Before starting these treatments, she was at an 8 most days-- As far as side effects- the actual ketamine is out of her system, from what I understand, within 12 hours-- but yes she is lethargic for a few days- but that's it.
Thanks for your comments regarding school-- even though she's a senior, we are considering helping her study for a GED so that then she can just do community college on her own terms-- as a full high school load has been so very stressful and increased depression/anxiety and she was barely able to pass last year. Concentrating and focusing for that many hours under pressure is just making things worse.. On a brighter note, I think her high school is going to allow her to continue in marching band-- the band director actually made her a special harness to allow her to continue playing the mellophone (her diagnoses are all in the left shoulder/arm/neck)-- so so thankful-- it's basically the last 'sport' she can participate in... thank you again for all of the great info!
Sorry am slow responding-- so she was diagnosed in March 2021, and after failed meds and ganglion stellate block, we started ketamine in April 2021-- 3 weeks twice a week to begin, and now a booster treatment about every 10 weeks.. it's a rough few days after the treatments (completely exhausted and can't do anything)- but then the pain starts to lower slowly and can get as low as 2 or 3- which is great... Before starting these treatments, she was at an 8 most days-- As far as side effects- the actual ketamine is out of her system, from what I understand, within 12 hours-- but yes she is lethargic for a few days- but that's it.
Thanks for your comments regarding school-- even though she's a senior, we are considering helping her study for a GED so that then she can just do community college on her own terms-- as a full high school load has been so very stressful and increased depression/anxiety and she was barely able to pass last year. Concentrating and focusing for that many hours under pressure is just making things worse.. On a brighter note, I think her high school is going to allow her to continue in marching band-- the band director actually made her a special harness to allow her to continue playing the mellophone (her diagnoses are all in the left shoulder/arm/neck)-- so so thankful-- it's basically the last 'sport' she can participate in... thank you again for all of the great info!
@losherwood -
There are no deadlines for response times, no worries! Thank you for explaining your daughter's journey further and how the Ketamine process works. I'm so happy that she's finding better comfort.
I have a daughter in her senior year of college who has had some health bumps along the way since high school. I understand the pressure your daughter is facing senior year of high school and how that pressure can intensify her pain. I also understand the pressure you face as a mom trying to what's best for your little girl. If getting a GED is most helpful at this time and your daughter's on board, along with the school, that may just be what's best in the moment. Chronic conditions throw curve balls. Strategic planning and thinking outside of the box can make all the difference.
Ohh myyy goodnessss... this picture is everything! 😍 Thank you much for sharing. It made me smile.
How awesome that the band leader helped with an instrument strap. Kudos! Clutch move! It'll be uplifting for her to stay connected with band and I hope all works out. It's the little things, that mean so much, right?
Please keep us updated on your daughter's CRPS journey as you are able. I will be cheering from the sidelines and hoping for the best. Sending positive vibes your way...
PS: Both my kids were in band and played trumpet. 😊 Enjoy!
@losherwood -
There are no deadlines for response times, no worries! Thank you for explaining your daughter's journey further and how the Ketamine process works. I'm so happy that she's finding better comfort.
I have a daughter in her senior year of college who has had some health bumps along the way since high school. I understand the pressure your daughter is facing senior year of high school and how that pressure can intensify her pain. I also understand the pressure you face as a mom trying to what's best for your little girl. If getting a GED is most helpful at this time and your daughter's on board, along with the school, that may just be what's best in the moment. Chronic conditions throw curve balls. Strategic planning and thinking outside of the box can make all the difference.
Ohh myyy goodnessss... this picture is everything! 😍 Thank you much for sharing. It made me smile.
How awesome that the band leader helped with an instrument strap. Kudos! Clutch move! It'll be uplifting for her to stay connected with band and I hope all works out. It's the little things, that mean so much, right?
Please keep us updated on your daughter's CRPS journey as you are able. I will be cheering from the sidelines and hoping for the best. Sending positive vibes your way...
PS: Both my kids were in band and played trumpet. 😊 Enjoy!
You're welcome. Regular Naltrexone 25mg and 50mg doses are for drug and alcohol relapses, or to prevent them I should say. Low-dose naltrexone such as 4.5mg - 7.5mg shows promise for reducing CRPS pain, they say. I am wary about it only because opioids work, when I can find a doctor who isn't afraid of politics, few and far between. Twenty years of medical records with CRPS and it's the same ole song and dance. Sick of it. Wish doctors would understand that those who truly need pain relief are not drug addicts. They worry you may become addicted, I think they should be more concerned that the pain drives one to suicide. I am not suicidal, it's just a statement, have too much to lose these days.
Went to the doctor today and talked him into 5mg Oxycodone. Have to keep a running pain journal the next 14 days and will see him in 2 weeks. He prescribed 10 and encouraged me cracking them in half to see the differences on different days. Satisfied now because I know intermittent use works and only when cannabis will not help is the time to use oxycodone. Gave up the Buprenorphine and basically begged to be treated like a responsible adult lol
Went to the doctor today and talked him into 5mg Oxycodone. Have to keep a running pain journal the next 14 days and will see him in 2 weeks. He prescribed 10 and encouraged me cracking them in half to see the differences on different days. Satisfied now because I know intermittent use works and only when cannabis will not help is the time to use oxycodone. Gave up the Buprenorphine and basically begged to be treated like a responsible adult lol
Responsible Adult, oh the concept!! I am so happy you were able to speak with him and come up with a plan that works for you. This is how it should be across the country. I'm a chronic pain suffer and I can't tell you how tired I am of being treated like an addict at 58 years old it's ridiculous. Thank you for speaking up and being an advocate for yourself!
Responsible Adult, oh the concept!! I am so happy you were able to speak with him and come up with a plan that works for you. This is how it should be across the country. I'm a chronic pain suffer and I can't tell you how tired I am of being treated like an addict at 58 years old it's ridiculous. Thank you for speaking up and being an advocate for yourself!
I had a plan with a pain journal where I used it as a journal of thoughts too to make argument. He skimmed it and I said if you're not going to read it, read the last page. That opened up discussion. Not an easy conversation by any means but reading the book Crucial Conversations sure helped in navigating the body language and posturing. I won a battle but didn't win the war. See what a 14 day pain trial gets me in two weeks. It better be a new pain contract but I don't foresee myself using the quantity he gave. See what happens. You have to know your condition, do the research to be able to converse, and know what you want. I made that mistake when I accepted Buprenorphine and being unprepared to discuss concerns.
My daughter lives in North Carolina and has been to the Doctor and then to a Neurologist. They both feel she shows signs of MS. I understand Mayo does remote second opinions. My daughter needs a MRI which they
have scheduled for her the 10th of November. How would I go about seeking a doctor to give a second opinion for this MRI? Please help. Thank You.
@chuck406 I hear ya and share in that frustration!! I decided to avoid the opioid route for now and get a spinal cord stimulator implanted instead, in a few weeks actually (trial first, then the real deal). I am not suicidal either, but I can seriously relate to wanting constant, torturous pain to finally end. I'd cut my left arm off in a second if it was offered to me. I'm tired of being so nauseous all the time too. But, grateful for the journey and how far I've come. Looking forward to a much brighter future! Stay strong, friend!
Hello there @rivermaya34, how are you doing? Did you go through with the spinal cord stimulator implant? I've been thinking about you and wondering. Sending lots of positive vibes your way and look forward to hearing back.
Hello there @rivermaya34, how are you doing? Did you go through with the spinal cord stimulator implant? I've been thinking about you and wondering. Sending lots of positive vibes your way and look forward to hearing back.
Hey there @rwinney !! Sorry I have been so distant for a little while now ... so much going on in life, as you know. I actually did something for me and took this semester off from school because I realized I had too much on my plate "physically" and needed to put my health as a priority. Besides, my academic focus was becoming scattered and my body was screaming "REST." I went through the SCS trial (Boston Scientific) towards the end of October, and the results were incredible! I had 85% relief all across the board for all of my symptoms - nausea, pain and allodynia. I felt like a whole new person and I actually cried. I couldn't believe it was actually possible to feel so good again! I had 4 days of amazing relief, with only one minor complication that was quickly remedied, but otherwise they deemed me a highly prime candidate for the permanent implant. I'm going into surgery for this on 12/21 (next Wednesday) and I'm counting down every second! The last few months all of my symptoms have escalated and I've been sick quite a lot, but my joy continues because there is so much hope ahead! 🙂 Thank you so much for thinking of me and for all of the positive thoughts sent my way - I've felt and absorbed each and every one of them! Thank you!! I hope you're doing good also???
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@chuck406 I hear ya and share in that frustration!! I decided to avoid the opioid route for now and get a spinal cord stimulator implanted instead, in a few weeks actually (trial first, then the real deal). I am not suicidal either, but I can seriously relate to wanting constant, torturous pain to finally end. I'd cut my left arm off in a second if it was offered to me. I'm tired of being so nauseous all the time too. But, grateful for the journey and how far I've come. Looking forward to a much brighter future! Stay strong, friend!
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5 ReactionsSorry am slow responding-- so she was diagnosed in March 2021, and after failed meds and ganglion stellate block, we started ketamine in April 2021-- 3 weeks twice a week to begin, and now a booster treatment about every 10 weeks.. it's a rough few days after the treatments (completely exhausted and can't do anything)- but then the pain starts to lower slowly and can get as low as 2 or 3- which is great... Before starting these treatments, she was at an 8 most days-- As far as side effects- the actual ketamine is out of her system, from what I understand, within 12 hours-- but yes she is lethargic for a few days- but that's it.
Thanks for your comments regarding school-- even though she's a senior, we are considering helping her study for a GED so that then she can just do community college on her own terms-- as a full high school load has been so very stressful and increased depression/anxiety and she was barely able to pass last year. Concentrating and focusing for that many hours under pressure is just making things worse.. On a brighter note, I think her high school is going to allow her to continue in marching band-- the band director actually made her a special harness to allow her to continue playing the mellophone (her diagnoses are all in the left shoulder/arm/neck)-- so so thankful-- it's basically the last 'sport' she can participate in... thank you again for all of the great info!
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3 Reactions@losherwood -
There are no deadlines for response times, no worries! Thank you for explaining your daughter's journey further and how the Ketamine process works. I'm so happy that she's finding better comfort.
I have a daughter in her senior year of college who has had some health bumps along the way since high school. I understand the pressure your daughter is facing senior year of high school and how that pressure can intensify her pain. I also understand the pressure you face as a mom trying to what's best for your little girl. If getting a GED is most helpful at this time and your daughter's on board, along with the school, that may just be what's best in the moment. Chronic conditions throw curve balls. Strategic planning and thinking outside of the box can make all the difference.
Ohh myyy goodnessss... this picture is everything! 😍 Thank you much for sharing. It made me smile.
How awesome that the band leader helped with an instrument strap. Kudos! Clutch move! It'll be uplifting for her to stay connected with band and I hope all works out. It's the little things, that mean so much, right?
Please keep us updated on your daughter's CRPS journey as you are able. I will be cheering from the sidelines and hoping for the best. Sending positive vibes your way...
PS: Both my kids were in band and played trumpet. 😊 Enjoy!
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3 ReactionsThank you so much!!❤️❤️ awww sweet you had kids in band too!!
Thanks again for such encouragement!!💓
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1 ReactionWent to the doctor today and talked him into 5mg Oxycodone. Have to keep a running pain journal the next 14 days and will see him in 2 weeks. He prescribed 10 and encouraged me cracking them in half to see the differences on different days. Satisfied now because I know intermittent use works and only when cannabis will not help is the time to use oxycodone. Gave up the Buprenorphine and basically begged to be treated like a responsible adult lol
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Helpful -
Hug
2 ReactionsResponsible Adult, oh the concept!! I am so happy you were able to speak with him and come up with a plan that works for you. This is how it should be across the country. I'm a chronic pain suffer and I can't tell you how tired I am of being treated like an addict at 58 years old it's ridiculous. Thank you for speaking up and being an advocate for yourself!
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Like -
Helpful -
Hug
1 ReactionI had a plan with a pain journal where I used it as a journal of thoughts too to make argument. He skimmed it and I said if you're not going to read it, read the last page. That opened up discussion. Not an easy conversation by any means but reading the book Crucial Conversations sure helped in navigating the body language and posturing. I won a battle but didn't win the war. See what a 14 day pain trial gets me in two weeks. It better be a new pain contract but I don't foresee myself using the quantity he gave. See what happens. You have to know your condition, do the research to be able to converse, and know what you want. I made that mistake when I accepted Buprenorphine and being unprepared to discuss concerns.
-
Like -
Helpful -
Hug
1 ReactionMy daughter lives in North Carolina and has been to the Doctor and then to a Neurologist. They both feel she shows signs of MS. I understand Mayo does remote second opinions. My daughter needs a MRI which they
have scheduled for her the 10th of November. How would I go about seeking a doctor to give a second opinion for this MRI? Please help. Thank You.
-
Like -
Helpful -
Hug
1 ReactionHello there @rivermaya34, how are you doing? Did you go through with the spinal cord stimulator implant? I've been thinking about you and wondering. Sending lots of positive vibes your way and look forward to hearing back.
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4 ReactionsHey there @rwinney !! Sorry I have been so distant for a little while now ... so much going on in life, as you know. I actually did something for me and took this semester off from school because I realized I had too much on my plate "physically" and needed to put my health as a priority. Besides, my academic focus was becoming scattered and my body was screaming "REST." I went through the SCS trial (Boston Scientific) towards the end of October, and the results were incredible! I had 85% relief all across the board for all of my symptoms - nausea, pain and allodynia. I felt like a whole new person and I actually cried. I couldn't believe it was actually possible to feel so good again! I had 4 days of amazing relief, with only one minor complication that was quickly remedied, but otherwise they deemed me a highly prime candidate for the permanent implant. I'm going into surgery for this on 12/21 (next Wednesday) and I'm counting down every second! The last few months all of my symptoms have escalated and I've been sick quite a lot, but my joy continues because there is so much hope ahead! 🙂 Thank you so much for thinking of me and for all of the positive thoughts sent my way - I've felt and absorbed each and every one of them! Thank you!! I hope you're doing good also???
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8 Reactions