Thank you so much! And I'm so glad you are now finding relief with the spinal cord implant! So I guess for you the Sprint was like a break in pain? As you mentioned that the pain did return? Do you know of any other CRPS patients who used Sprint and then the pain returned as well? just curious.. I am not sure my daughter will want to risk the possible aggravation to her Thoracic Outlet surgery (where CRPS is now as well) if it will only last a few months :/ --but any advice appreciated-- thank you so much for responding-- and saying a prayer that you will indeed be back to yourself very soon 🙂 thanks again!
Hi @losherwood. I'm sorry about your daughter's diagnosis of CRPS. Age 17, that's tough for all involved. As a mom and as a person who lives in chronic pain, my heart feels for you.
So, I'm stepping in to offer a thought in a different direction, should you be interested. I know your researching implants and your daughters trying ketamine, but if down the road, should she get to a point where treatments and medications are no longer benefiting her, perhaps a different approach may be worth while. The Mayo Clinic offers an incredible Pain Rehabilitation Center which helps people of all ages. When I attended, participants ranged from age 18 to 72.
I can only imagine how difficult and confusing it is to navigate this territory. Please let me know if you have any questions about the links provided. I'm happy to help and will be curious to know your thoughts.
Please keep hope alive! Sending positive vibes your way. 💪🏽
Hi @losherwood. I'm sorry about your daughter's diagnosis of CRPS. Age 17, that's tough for all involved. As a mom and as a person who lives in chronic pain, my heart feels for you.
So, I'm stepping in to offer a thought in a different direction, should you be interested. I know your researching implants and your daughters trying ketamine, but if down the road, should she get to a point where treatments and medications are no longer benefiting her, perhaps a different approach may be worth while. The Mayo Clinic offers an incredible Pain Rehabilitation Center which helps people of all ages. When I attended, participants ranged from age 18 to 72.
I can only imagine how difficult and confusing it is to navigate this territory. Please let me know if you have any questions about the links provided. I'm happy to help and will be curious to know your thoughts.
Please keep hope alive! Sending positive vibes your way. 💪🏽
That is so neat you mentioned that- because I was reading about it and was interested- thank you! I will check out the video... so I take it the 3 week program really helped you? I have read a few reviews- and all sounded very positive-- I am definitely going to look more into it when she is 18.. thank you so much! Loretta
That is so neat you mentioned that- because I was reading about it and was interested- thank you! I will check out the video... so I take it the 3 week program really helped you? I have read a few reviews- and all sounded very positive-- I am definitely going to look more into it when she is 18.. thank you so much! Loretta
You're welcome, Loretta! Also, Mayo MN offers two pediatric pain rehabilitation programs you may want to check out. Here's more information:
Mayo Pain Rehabilitation Center - Featured Programs- https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/featured-programs/gnc-20481713
The PRC helped me tremendously by teaching how to live a better quality of life while dealing with chronic symptoms. They provide many self-help tools, a plan and path forward emotionally, behaviorally and physically. The program helps to reduce or eliminate unnecessary chemicals as well.
You're welcome, Loretta! Also, Mayo MN offers two pediatric pain rehabilitation programs you may want to check out. Here's more information:
Mayo Pain Rehabilitation Center - Featured Programs- https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/featured-programs/gnc-20481713
The PRC helped me tremendously by teaching how to live a better quality of life while dealing with chronic symptoms. They provide many self-help tools, a plan and path forward emotionally, behaviorally and physically. The program helps to reduce or eliminate unnecessary chemicals as well.
That really sounds great-- thank you! So glad it's been such a big help to you (and many others) :)... So we are in VA- and FL would be best-- but time-wise, I think after she turns 18 (next summer) might work best- so I might see about that location -- nice that it's close to the beach too- considering it's 3 weeks 😉
thank you again!!
That really sounds great-- thank you! So glad it's been such a big help to you (and many others) :)... So we are in VA- and FL would be best-- but time-wise, I think after she turns 18 (next summer) might work best- so I might see about that location -- nice that it's close to the beach too- considering it's 3 weeks 😉
thank you again!!
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?
That really sounds great-- thank you! So glad it's been such a big help to you (and many others) :)... So we are in VA- and FL would be best-- but time-wise, I think after she turns 18 (next summer) might work best- so I might see about that location -- nice that it's close to the beach too- considering it's 3 weeks 😉
thank you again!!
Another thought...
maybe you'd also like to watch one of the Mayo Pain Rehabilitation Centers Family Day videos. At the end of each of the 3 weeks, Dr. Sletten addresses family or friends of the participants and educates them on what their loved ones are learning and experiencing in the program. Here is the video:
Mayo Clinic Pain Rehabilitation Center: Family Day – Week 1
It was very helpful for my husband while I was in rehab. It allowed him to really understand me and learn how he could be an active participant in my rehabilitation.
Maybe some of what is taught in the video, can be helpful for your daughter's current situation.
Has anyone here been prescribed Mexiletine for CRPS? If so, what is your experience? Asking bc it's the next best thing my neurologist wants to try. Thanks for any input, wishing you all pain-free days!
I haven't heard of it but will run some Google on it (irregular heartbeats side effects). I have been more than tempted to try low-dose Naltrexone 4.5mg. The only issue with it is if it takes time to work and a flare-up lasts for days it blocks opioids for 48 hours.
I haven't heard of it but will run some Google on it (irregular heartbeats side effects). I have been more than tempted to try low-dose Naltrexone 4.5mg. The only issue with it is if it takes time to work and a flare-up lasts for days it blocks opioids for 48 hours.
Thank you so much @chuck406 ! I have decided to wait for this medication. I took Carvedilol recently to try and slow my heartbeat down (it races a lot) and lower my metabolism, but I did not enjoy its side effects and had to quickly get off it. I have never taken Naltrexone - what's it for? Thankfully, I'm not on any opiods, so that's good. I also recently tried Ajove to see if it'd help with peripheral nerve pain, but it has been unsuccessful thus far. Seems flares have been more constant and lasting longer. The more severe pain has been ever present and doesn't seem to let up...no identified triggers. Frustrating.
Thank you so much @chuck406 ! I have decided to wait for this medication. I took Carvedilol recently to try and slow my heartbeat down (it races a lot) and lower my metabolism, but I did not enjoy its side effects and had to quickly get off it. I have never taken Naltrexone - what's it for? Thankfully, I'm not on any opiods, so that's good. I also recently tried Ajove to see if it'd help with peripheral nerve pain, but it has been unsuccessful thus far. Seems flares have been more constant and lasting longer. The more severe pain has been ever present and doesn't seem to let up...no identified triggers. Frustrating.
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.
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Hi @losherwood. I'm sorry about your daughter's diagnosis of CRPS. Age 17, that's tough for all involved. As a mom and as a person who lives in chronic pain, my heart feels for you.
So, I'm stepping in to offer a thought in a different direction, should you be interested. I know your researching implants and your daughters trying ketamine, but if down the road, should she get to a point where treatments and medications are no longer benefiting her, perhaps a different approach may be worth while. The Mayo Clinic offers an incredible Pain Rehabilitation Center which helps people of all ages. When I attended, participants ranged from age 18 to 72.
Here is an overview of the Mayo PRC:
https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691
Also, Dr. Sletten, who runs the PRC Jacksonville, FL program speaks about central sensitization in the following video. You (and your daughter) may find it helpful in connection to CRPS and managing chronic pain symptoms.
I can only imagine how difficult and confusing it is to navigate this territory. Please let me know if you have any questions about the links provided. I'm happy to help and will be curious to know your thoughts.
Please keep hope alive! Sending positive vibes your way. 💪🏽
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Helpful -
Hug
2 ReactionsThat is so neat you mentioned that- because I was reading about it and was interested- thank you! I will check out the video... so I take it the 3 week program really helped you? I have read a few reviews- and all sounded very positive-- I am definitely going to look more into it when she is 18.. thank you so much! Loretta
-
Like -
Helpful -
Hug
1 ReactionYou're welcome, Loretta! Also, Mayo MN offers two pediatric pain rehabilitation programs you may want to check out. Here's more information:
Mayo Pain Rehabilitation Center - Featured Programs-
https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/featured-programs/gnc-20481713
The PRC helped me tremendously by teaching how to live a better quality of life while dealing with chronic symptoms. They provide many self-help tools, a plan and path forward emotionally, behaviorally and physically. The program helps to reduce or eliminate unnecessary chemicals as well.
Are you located near any of the Mayo Clinic's?
That really sounds great-- thank you! So glad it's been such a big help to you (and many others) :)... So we are in VA- and FL would be best-- but time-wise, I think after she turns 18 (next summer) might work best- so I might see about that location -- nice that it's close to the beach too- considering it's 3 weeks 😉
thank you again!!
-
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Helpful -
Hug
1 ReactionYes, Florida was very nice to spend 3 weeks at!
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?
Another thought...
maybe you'd also like to watch one of the Mayo Pain Rehabilitation Centers Family Day videos. At the end of each of the 3 weeks, Dr. Sletten addresses family or friends of the participants and educates them on what their loved ones are learning and experiencing in the program. Here is the video:
Mayo Clinic Pain Rehabilitation Center: Family Day – Week 1
It was very helpful for my husband while I was in rehab. It allowed him to really understand me and learn how he could be an active participant in my rehabilitation.
Maybe some of what is taught in the video, can be helpful for your daughter's current situation.
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Hug
1 ReactionCRPS Type 2 going on 22 years January 2nd.
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1 ReactionI haven't heard of it but will run some Google on it (irregular heartbeats side effects). I have been more than tempted to try low-dose Naltrexone 4.5mg. The only issue with it is if it takes time to work and a flare-up lasts for days it blocks opioids for 48 hours.
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Like -
Helpful -
Hug
3 ReactionsThank you so much @chuck406 ! I have decided to wait for this medication. I took Carvedilol recently to try and slow my heartbeat down (it races a lot) and lower my metabolism, but I did not enjoy its side effects and had to quickly get off it. I have never taken Naltrexone - what's it for? Thankfully, I'm not on any opiods, so that's good. I also recently tried Ajove to see if it'd help with peripheral nerve pain, but it has been unsuccessful thus far. Seems flares have been more constant and lasting longer. The more severe pain has been ever present and doesn't seem to let up...no identified triggers. Frustrating.
-
Like -
Helpful -
Hug
2 ReactionsYou'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.
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Like -
Helpful -
Hug
2 Reactions