Hi @rivermaya34 , I forget to tell people where my pain is located. I have it in my left arm and both shoulders, my right elbow. It's also in both hips and knees. Some days are good, but when I try to help around the house I get "put on the shelf" so to speak. Then I get a family member to say to me " you are not doing enough!" , That hurts. Now I am hurting and I want to protect myself and have a plan for me. Do you have any suggestions on this? If you do I would like to hear it, and I thank you for listening to me rant on about this. Again thank you.
Hi @rivermaya34 , I forget to tell people where my pain is located. I have it in my left arm and both shoulders, my right elbow. It's also in both hips and knees. Some days are good, but when I try to help around the house I get "put on the shelf" so to speak. Then I get a family member to say to me " you are not doing enough!" , That hurts. Now I am hurting and I want to protect myself and have a plan for me. Do you have any suggestions on this? If you do I would like to hear it, and I thank you for listening to me rant on about this. Again thank you.
@plakermike88 Unfortunately, I can personally understand the widespread extent of your pain. My Drs explained to me that, often times, some type of trauma can trigger, or "jump start" the pain. The condition is there already in a dormant state, but sometimes (not always, every case is different) it gets suddenly put into motion, like at the start of a race when the sound is given. If that makes sense...I'll use my own life as an example here. Now, mind you, I have layers of conditions and symptoms that sometimes can be hard to distinguish from each other, but...I started noticing changes to my health/body in 2015. Initially, it was all subtle and I paid little to no attention to the signs because they weren't directly interfering yet. The next year, I got into a very bad car accident (a miracle I was spared, truly) and soon after that I started experiencing a plethora of symptoms that seemed to go from 0 to 10+ all at once, or so it seemed (perception, right?) Anyways, in 2018 everything changed again and went off the charts. In 2019, I had 4 surgeries in the span of 6 months that have left me physically devastated and worse than going into it all, but had I not, I can't even imagine that I'd still have any function. I had a major complication with one of my elbow surgeries, and developed a blood clot the size of a tennis ball (literally, no exaggeration, half of it was visible) and it ended up being covered in a massive infection. I woke up with a drain, and to this day I still have terrible post-operative pain in that arm and it feels like the drain is still there. Now, I have pain that makes me physically nauseous in both my arms and legs (not as severe there yet), no feeling in my limbs and not much strength left. And, I have to keep my arms compressed and covered at all times, or else the flow of air or any movement might make me vomit. I can't even touch my own arms in the shower or hold anything in my arms that touches my elbows. I can't rest my arm on the windowsil of my truck or on the arm of my couch. Laying my bed, my arms must be above my head. I have to keep a therapeutic level of Gaba in my system at all times just to be able to function, and sometimes that doesn't even touch my pain. But if I don't, it'll be a helluva lot worse! So, I'm very thankful. I say all this not to present a sob story or gain pity, but to offer hope and encouragement. I was a competitive athlete all my life til this stuff hit and even then, I fought the decrease in activities. But now, I have embraced a new way of life and I'm thankful that God slowed me down. He knew best about what I needed. Even though the days are hard and I can't do everything like I used to, or some things at all, I truly believe these things are a gift and a privilege to endure. Not everyone is strong enough to handle these things, but some are. With help, of course. And, if I wasn't experiencing such high levels of pain, then my pride could have taken hold or who knows what would have happened. How could I help and encourage other people if I wasn't wearing a similar pair of shoes? See, I have a whole new outlook on life and a deeper level of gratitude and appreciation for life itself and the people inside my circle. Though they may not understand, they are my support team. They are as long as I allow them to be, and I have to guide them along, just as they have to help me along many times, physically and emotionally. Those moments when you feel like you've been "put on the shelf" or sidelined, be grateful. For whatever reason, your body may need those moments to recover. Enjoy the breaks, even if only for a moment. Sometimes you have to keep the focus self-centered, and this is one of those times, when it comes to your health. When someone tells you that you're "not doing enough", depending on how receptive they are, remind them that your normal is not theirs. Your par is not theirs. You are now functioning at a different level and pace, and that is totally OK. Gently assure them that your body just needs a break or "can't do it" in that moment. I often get those notions too, because I am "too young for that." Well, there is no rule book and not one moment of my life has been textbook, according to society's standards, thus far. And that's the beauty of our lives being so individual and unique! If you are too discouraged in the moment to say anything back to them, just take a quiet moment to reflect and let your emotions settle. They will, I promise. Sometimes that might mean you physically have to get up and walk away, or say, "I can't have this conversation with you right now." And, as long as you are being totally respectful towards them, there is nothing they can do or say back that should rattle you. Remember, as long as you err on the side of humility, you will stay the higher ground. Keep doing what you mentioned above, that is, protecting your body and having a plan. Don't let anyone alter that. There will be ups and downs on this ride, so take each one as it comes and remember the moments are fleeting, they will not last forever! Everyday is brand new, and each hour has its own set of "unknowns." I pray you will find encouragement here, and remember you've got lots of people on your side, even if it doesn't always feel that way. No one is doing this thing called "life" alone. 🙂 Sending wishes for pain-free days and joy!
@plakermike88 Unfortunately, I can personally understand the widespread extent of your pain. My Drs explained to me that, often times, some type of trauma can trigger, or "jump start" the pain. The condition is there already in a dormant state, but sometimes (not always, every case is different) it gets suddenly put into motion, like at the start of a race when the sound is given. If that makes sense...I'll use my own life as an example here. Now, mind you, I have layers of conditions and symptoms that sometimes can be hard to distinguish from each other, but...I started noticing changes to my health/body in 2015. Initially, it was all subtle and I paid little to no attention to the signs because they weren't directly interfering yet. The next year, I got into a very bad car accident (a miracle I was spared, truly) and soon after that I started experiencing a plethora of symptoms that seemed to go from 0 to 10+ all at once, or so it seemed (perception, right?) Anyways, in 2018 everything changed again and went off the charts. In 2019, I had 4 surgeries in the span of 6 months that have left me physically devastated and worse than going into it all, but had I not, I can't even imagine that I'd still have any function. I had a major complication with one of my elbow surgeries, and developed a blood clot the size of a tennis ball (literally, no exaggeration, half of it was visible) and it ended up being covered in a massive infection. I woke up with a drain, and to this day I still have terrible post-operative pain in that arm and it feels like the drain is still there. Now, I have pain that makes me physically nauseous in both my arms and legs (not as severe there yet), no feeling in my limbs and not much strength left. And, I have to keep my arms compressed and covered at all times, or else the flow of air or any movement might make me vomit. I can't even touch my own arms in the shower or hold anything in my arms that touches my elbows. I can't rest my arm on the windowsil of my truck or on the arm of my couch. Laying my bed, my arms must be above my head. I have to keep a therapeutic level of Gaba in my system at all times just to be able to function, and sometimes that doesn't even touch my pain. But if I don't, it'll be a helluva lot worse! So, I'm very thankful. I say all this not to present a sob story or gain pity, but to offer hope and encouragement. I was a competitive athlete all my life til this stuff hit and even then, I fought the decrease in activities. But now, I have embraced a new way of life and I'm thankful that God slowed me down. He knew best about what I needed. Even though the days are hard and I can't do everything like I used to, or some things at all, I truly believe these things are a gift and a privilege to endure. Not everyone is strong enough to handle these things, but some are. With help, of course. And, if I wasn't experiencing such high levels of pain, then my pride could have taken hold or who knows what would have happened. How could I help and encourage other people if I wasn't wearing a similar pair of shoes? See, I have a whole new outlook on life and a deeper level of gratitude and appreciation for life itself and the people inside my circle. Though they may not understand, they are my support team. They are as long as I allow them to be, and I have to guide them along, just as they have to help me along many times, physically and emotionally. Those moments when you feel like you've been "put on the shelf" or sidelined, be grateful. For whatever reason, your body may need those moments to recover. Enjoy the breaks, even if only for a moment. Sometimes you have to keep the focus self-centered, and this is one of those times, when it comes to your health. When someone tells you that you're "not doing enough", depending on how receptive they are, remind them that your normal is not theirs. Your par is not theirs. You are now functioning at a different level and pace, and that is totally OK. Gently assure them that your body just needs a break or "can't do it" in that moment. I often get those notions too, because I am "too young for that." Well, there is no rule book and not one moment of my life has been textbook, according to society's standards, thus far. And that's the beauty of our lives being so individual and unique! If you are too discouraged in the moment to say anything back to them, just take a quiet moment to reflect and let your emotions settle. They will, I promise. Sometimes that might mean you physically have to get up and walk away, or say, "I can't have this conversation with you right now." And, as long as you are being totally respectful towards them, there is nothing they can do or say back that should rattle you. Remember, as long as you err on the side of humility, you will stay the higher ground. Keep doing what you mentioned above, that is, protecting your body and having a plan. Don't let anyone alter that. There will be ups and downs on this ride, so take each one as it comes and remember the moments are fleeting, they will not last forever! Everyday is brand new, and each hour has its own set of "unknowns." I pray you will find encouragement here, and remember you've got lots of people on your side, even if it doesn't always feel that way. No one is doing this thing called "life" alone. 🙂 Sending wishes for pain-free days and joy!
Hi,@rivermaya34, I wanted to say thank you for your time. You gave me a lot to think about, and my doctor saying the same thing. I have been keeping notes from my doctor for years (WOW, it's been a long time), and I went back to look at some of them and there it was. What you said rang a bell in my head, "slow down, take your time and don't push it too much." . He been saying that to me for years, I was just too stubborn to listen. I started to map out a plan for me and it is not as easy as it sounds, but I am trying. So anyway, I just wanted to let people know that you can do it, all you have to do is keep moving forward. There's a light at the end of every tunnel, some tunnel are longer than others, but there's a light. Thank you for listening and have a wonderful pain free day.
Hi,@rivermaya34, I wanted to say thank you for your time. You gave me a lot to think about, and my doctor saying the same thing. I have been keeping notes from my doctor for years (WOW, it's been a long time), and I went back to look at some of them and there it was. What you said rang a bell in my head, "slow down, take your time and don't push it too much." . He been saying that to me for years, I was just too stubborn to listen. I started to map out a plan for me and it is not as easy as it sounds, but I am trying. So anyway, I just wanted to let people know that you can do it, all you have to do is keep moving forward. There's a light at the end of every tunnel, some tunnel are longer than others, but there's a light. Thank you for listening and have a wonderful pain free day.
@plakermike88 Yep, absolutely! And, when the tunnel seems long and dark, bring a flashlight and shine it around! I've had to do that many times, especially when I see glimmers of light from the end of my tunnel, then my train slows down and the distance moves farther away again. I have to constantly remind myself "why" I'm even riding this train, but then I remember that I'm the one piloting it! Everything is an adventure to me, and my inner archaeologist always sees things as just an adventurous detour. We envision the end point or result, but sometimes we get detoured, like Indiana Jones on Lao Che's plane or in Berlin or Venice, Italy. We'll get there, and it's all so worth it in the end, and even during! The lessons we learn are the content for "great books" or good conversation. Last night, my subconscious must have inserted this conversation into my dream, where a coworker of mine realized what I had going on and looked at me like, "How do you do it?" and I just nodded and said, "I guess you just do. You find a way." And, even tho I woke up with a migraine this morning and not feeling so great, that deeply encouraged me. And also waking up to your post 🙂 I needed to hear that to reassure myself. So, thank you! I'm glad you remembered your Dr's words and have kept notes all this time! I am massively failing in that dept, my memory gets worse everyday. But like you said, "I'm trying" and "moving forward." And, stopping to smell the roses or sink your feet in the mud or just look around at the gorgeous scenery is what's needed for a time. And that's OK too. Thanks for encouraging us here! Sending pain-free wishes your way also!
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 called the Mayo Clinic in Fl. Told them I have CRPS. They were able to direct me to the University of North Carolina to The anesthesiologist/pain management department. Check your teaching universities.
I strongly encourage you to find an anesthesiologist/pain management doctor rather than fooling around with just a “pain management physician”. I went to a pain management physician and he didn’t even spend five minutes with me before announcing he was giving me a Botox injection. He just herd the patients in and out. No questions asked. I left without the injection. I wanted to know what it would do to me. Do your homework. Botox weakens the muscle.
I have used a Sprint implant for 60 days and it helped immensely. It’s not a permanent “fix”. It was used to see if they could get the communication going in the nerves plus I got some relief. This company is out of Beachwood Ohio. Call them. I am currently waiting to get a Boston scientific implant into my spine.
Remember one of the best things you can do for CRPS is to make sure you get a good nights sleep. The other thing that I am being told is keep it moving. I’m working on it. Use a pool of you are able. Lose weight, too.
I'm slow in reading this-- but was hoping you could give more information about the Spring implant? My 17yr old daughter was diagnosed with CRPS after having surgery for TOS (that came about from competitive swimming).. she has been doing Ketamine every 9-10wks and that helps to give her somewhat of a life(she was able to pass school last year- but just barely- and we are again struggling with normal school- chronic pain really stinks)-- so Ketamine truly does lower the pain overall, but we would love to help lower it more. Her Anesthesiologist at VCU used to work for Mayo and he is one of the top doctors doing Sprint-- but we have been hesitant b/c he wants to put it in where she had TOS surgery and that area is so easily flared and when a ganglion stellate block was done in that area, it only made things worse.... So after the 60days with the Sprint, did the help in pain then stop? How low was your pain (on a 10scale)? Thanks for any help!
I'm slow in reading this-- but was hoping you could give more information about the Spring implant? My 17yr old daughter was diagnosed with CRPS after having surgery for TOS (that came about from competitive swimming).. she has been doing Ketamine every 9-10wks and that helps to give her somewhat of a life(she was able to pass school last year- but just barely- and we are again struggling with normal school- chronic pain really stinks)-- so Ketamine truly does lower the pain overall, but we would love to help lower it more. Her Anesthesiologist at VCU used to work for Mayo and he is one of the top doctors doing Sprint-- but we have been hesitant b/c he wants to put it in where she had TOS surgery and that area is so easily flared and when a ganglion stellate block was done in that area, it only made things worse.... So after the 60days with the Sprint, did the help in pain then stop? How low was your pain (on a 10scale)? Thanks for any help!
I had the Sprint temporary implant in my leg for 90 days. Oh my gosh it was wonderful! Once it was removed my pain came back. It took several months. Please contact them. http://www.sprtherapeutics.com. They are out of Beachwood, Ohio. I was able to walk out of the doctor’s office on my own. (My neighbor was so impressed with my results that he got one for diabetic neuropathy in his foot and has had success.) My pain did come back from CRPS. Meds just didn’t work. I’ve now got a Boston Scientific spinal cord implant. Got it on March14, 2022. So far I’m very pleased. Please contact them and learn about their product. 1-877-473-0844. It did take time for the implant to kick in because of the swelling around the implanted battery. About 90 days. On December 14th I should be back to myself. I’ll post if anything changes with my implant.
I hope this helps you. Glad you’re loved one is seeing a good physician.
I'm slow in reading this-- but was hoping you could give more information about the Spring implant? My 17yr old daughter was diagnosed with CRPS after having surgery for TOS (that came about from competitive swimming).. she has been doing Ketamine every 9-10wks and that helps to give her somewhat of a life(she was able to pass school last year- but just barely- and we are again struggling with normal school- chronic pain really stinks)-- so Ketamine truly does lower the pain overall, but we would love to help lower it more. Her Anesthesiologist at VCU used to work for Mayo and he is one of the top doctors doing Sprint-- but we have been hesitant b/c he wants to put it in where she had TOS surgery and that area is so easily flared and when a ganglion stellate block was done in that area, it only made things worse.... So after the 60days with the Sprint, did the help in pain then stop? How low was your pain (on a 10scale)? Thanks for any help!
I had the Sprint temporary implant in my leg for 90 days. Oh my gosh it was wonderful! Once it was removed my pain came back. It took several months. Please contact them. http://www.sprtherapeutics.com. They are out of Beachwood, Ohio. I was able to walk out of the doctor’s office on my own. (My neighbor was so impressed with my results that he got one for diabetic neuropathy in his foot and has had success.) My pain did come back from CRPS. Meds just didn’t work. I’ve now got a Boston Scientific spinal cord implant. Got it on March14, 2022. So far I’m very pleased. Please contact them and learn about their product. 1-877-473-0844. It did take time for the implant to kick in because of the swelling around the implanted battery. About 90 days. On December 14th I should be back to myself. I’ll post if anything changes with my implant.
I hope this helps you. Glad you’re loved one is seeing a good physician.
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!
Prayers for all of you, too. I can’t describe the pain I felt. It was terrible. I encourage you to look into as many as you can. I became my own advocate. The University of North Carolina was a blessing for me. Try talking to a nurse at Mayo and see if they can guide you like they did me. Good luck.
By the way…medicine did not help me. Watch the side affects!!!!
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Hi @rivermaya34 , I forget to tell people where my pain is located. I have it in my left arm and both shoulders, my right elbow. It's also in both hips and knees. Some days are good, but when I try to help around the house I get "put on the shelf" so to speak. Then I get a family member to say to me " you are not doing enough!" , That hurts. Now I am hurting and I want to protect myself and have a plan for me. Do you have any suggestions on this? If you do I would like to hear it, and I thank you for listening to me rant on about this. Again thank you.
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1 Reaction@plakermike88 Unfortunately, I can personally understand the widespread extent of your pain. My Drs explained to me that, often times, some type of trauma can trigger, or "jump start" the pain. The condition is there already in a dormant state, but sometimes (not always, every case is different) it gets suddenly put into motion, like at the start of a race when the sound is given. If that makes sense...I'll use my own life as an example here. Now, mind you, I have layers of conditions and symptoms that sometimes can be hard to distinguish from each other, but...I started noticing changes to my health/body in 2015. Initially, it was all subtle and I paid little to no attention to the signs because they weren't directly interfering yet. The next year, I got into a very bad car accident (a miracle I was spared, truly) and soon after that I started experiencing a plethora of symptoms that seemed to go from 0 to 10+ all at once, or so it seemed (perception, right?) Anyways, in 2018 everything changed again and went off the charts. In 2019, I had 4 surgeries in the span of 6 months that have left me physically devastated and worse than going into it all, but had I not, I can't even imagine that I'd still have any function. I had a major complication with one of my elbow surgeries, and developed a blood clot the size of a tennis ball (literally, no exaggeration, half of it was visible) and it ended up being covered in a massive infection. I woke up with a drain, and to this day I still have terrible post-operative pain in that arm and it feels like the drain is still there. Now, I have pain that makes me physically nauseous in both my arms and legs (not as severe there yet), no feeling in my limbs and not much strength left. And, I have to keep my arms compressed and covered at all times, or else the flow of air or any movement might make me vomit. I can't even touch my own arms in the shower or hold anything in my arms that touches my elbows. I can't rest my arm on the windowsil of my truck or on the arm of my couch. Laying my bed, my arms must be above my head. I have to keep a therapeutic level of Gaba in my system at all times just to be able to function, and sometimes that doesn't even touch my pain. But if I don't, it'll be a helluva lot worse! So, I'm very thankful. I say all this not to present a sob story or gain pity, but to offer hope and encouragement. I was a competitive athlete all my life til this stuff hit and even then, I fought the decrease in activities. But now, I have embraced a new way of life and I'm thankful that God slowed me down. He knew best about what I needed. Even though the days are hard and I can't do everything like I used to, or some things at all, I truly believe these things are a gift and a privilege to endure. Not everyone is strong enough to handle these things, but some are. With help, of course. And, if I wasn't experiencing such high levels of pain, then my pride could have taken hold or who knows what would have happened. How could I help and encourage other people if I wasn't wearing a similar pair of shoes? See, I have a whole new outlook on life and a deeper level of gratitude and appreciation for life itself and the people inside my circle. Though they may not understand, they are my support team. They are as long as I allow them to be, and I have to guide them along, just as they have to help me along many times, physically and emotionally. Those moments when you feel like you've been "put on the shelf" or sidelined, be grateful. For whatever reason, your body may need those moments to recover. Enjoy the breaks, even if only for a moment. Sometimes you have to keep the focus self-centered, and this is one of those times, when it comes to your health. When someone tells you that you're "not doing enough", depending on how receptive they are, remind them that your normal is not theirs. Your par is not theirs. You are now functioning at a different level and pace, and that is totally OK. Gently assure them that your body just needs a break or "can't do it" in that moment. I often get those notions too, because I am "too young for that." Well, there is no rule book and not one moment of my life has been textbook, according to society's standards, thus far. And that's the beauty of our lives being so individual and unique! If you are too discouraged in the moment to say anything back to them, just take a quiet moment to reflect and let your emotions settle. They will, I promise. Sometimes that might mean you physically have to get up and walk away, or say, "I can't have this conversation with you right now." And, as long as you are being totally respectful towards them, there is nothing they can do or say back that should rattle you. Remember, as long as you err on the side of humility, you will stay the higher ground. Keep doing what you mentioned above, that is, protecting your body and having a plan. Don't let anyone alter that. There will be ups and downs on this ride, so take each one as it comes and remember the moments are fleeting, they will not last forever! Everyday is brand new, and each hour has its own set of "unknowns." I pray you will find encouragement here, and remember you've got lots of people on your side, even if it doesn't always feel that way. No one is doing this thing called "life" alone. 🙂 Sending wishes for pain-free days and joy!
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2 ReactionsHi,@rivermaya34, I wanted to say thank you for your time. You gave me a lot to think about, and my doctor saying the same thing. I have been keeping notes from my doctor for years (WOW, it's been a long time), and I went back to look at some of them and there it was. What you said rang a bell in my head, "slow down, take your time and don't push it too much." . He been saying that to me for years, I was just too stubborn to listen. I started to map out a plan for me and it is not as easy as it sounds, but I am trying. So anyway, I just wanted to let people know that you can do it, all you have to do is keep moving forward. There's a light at the end of every tunnel, some tunnel are longer than others, but there's a light. Thank you for listening and have a wonderful pain free day.
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3 Reactions@plakermike88 Yep, absolutely! And, when the tunnel seems long and dark, bring a flashlight and shine it around! I've had to do that many times, especially when I see glimmers of light from the end of my tunnel, then my train slows down and the distance moves farther away again. I have to constantly remind myself "why" I'm even riding this train, but then I remember that I'm the one piloting it! Everything is an adventure to me, and my inner archaeologist always sees things as just an adventurous detour. We envision the end point or result, but sometimes we get detoured, like Indiana Jones on Lao Che's plane or in Berlin or Venice, Italy. We'll get there, and it's all so worth it in the end, and even during! The lessons we learn are the content for "great books" or good conversation. Last night, my subconscious must have inserted this conversation into my dream, where a coworker of mine realized what I had going on and looked at me like, "How do you do it?" and I just nodded and said, "I guess you just do. You find a way." And, even tho I woke up with a migraine this morning and not feeling so great, that deeply encouraged me. And also waking up to your post 🙂 I needed to hear that to reassure myself. So, thank you! I'm glad you remembered your Dr's words and have kept notes all this time! I am massively failing in that dept, my memory gets worse everyday. But like you said, "I'm trying" and "moving forward." And, stopping to smell the roses or sink your feet in the mud or just look around at the gorgeous scenery is what's needed for a time. And that's OK too. Thanks for encouraging us here! Sending pain-free wishes your way also!
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!
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1 ReactionI'm slow in reading this-- but was hoping you could give more information about the Spring implant? My 17yr old daughter was diagnosed with CRPS after having surgery for TOS (that came about from competitive swimming).. she has been doing Ketamine every 9-10wks and that helps to give her somewhat of a life(she was able to pass school last year- but just barely- and we are again struggling with normal school- chronic pain really stinks)-- so Ketamine truly does lower the pain overall, but we would love to help lower it more. Her Anesthesiologist at VCU used to work for Mayo and he is one of the top doctors doing Sprint-- but we have been hesitant b/c he wants to put it in where she had TOS surgery and that area is so easily flared and when a ganglion stellate block was done in that area, it only made things worse.... So after the 60days with the Sprint, did the help in pain then stop? How low was your pain (on a 10scale)? Thanks for any help!
I had the Sprint temporary implant in my leg for 90 days. Oh my gosh it was wonderful! Once it was removed my pain came back. It took several months. Please contact them. http://www.sprtherapeutics.com. They are out of Beachwood, Ohio. I was able to walk out of the doctor’s office on my own. (My neighbor was so impressed with my results that he got one for diabetic neuropathy in his foot and has had success.) My pain did come back from CRPS. Meds just didn’t work. I’ve now got a Boston Scientific spinal cord implant. Got it on March14, 2022. So far I’m very pleased. Please contact them and learn about their product. 1-877-473-0844. It did take time for the implant to kick in because of the swelling around the implanted battery. About 90 days. On December 14th I should be back to myself. I’ll post if anything changes with my implant.
I hope this helps you. Glad you’re loved one is seeing a good physician.
By the way…my pain scale was a 10! This disease is very painful!!!
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!
Prayers for all of you, too. I can’t describe the pain I felt. It was terrible. I encourage you to look into as many as you can. I became my own advocate. The University of North Carolina was a blessing for me. Try talking to a nurse at Mayo and see if they can guide you like they did me. Good luck.
By the way…medicine did not help me. Watch the side affects!!!!
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