rwinney and all - thanks for posting ! I have felt red hot fireworks plus flaming swords bursting up through my feet into my legs, swarms of wasps stinging me, and raging forest fires but when I look at my body, there are no wasps, no fire anywhere, no swords or fireworks - nothing. I asked my nervous system "Why don't you send out false messages of pleasure instead of pain? I'm sorry you're dying, but we could have a good time of it just as easily as a bad time." I got no answer. Peggy
@pfbacon Oh Peggy...I hear you and love the conversation with your nerves. I think we've all had it. Doesn't seem quite right, does it, that our body's nervous system can have it's way with us. It infuriates me sometimes! Days I yearn for distraction so my mind can catch a break from the pain that always exists. Im hoping this evening finds you distracted. Be well.
Rachel
I'm trying something new: taking Aleve tonight, because it lasts 12 hours, it might mitigate the pain I wake up with every morning. I've been taking 2 aspirins and stretching while waiting for the aching (like fibromyalgia) to subside. Peggy
Just catching up with all the recent posts. I read this lady's story @johnbishop linked to his post about her success with the Calmare scrambler system. Since I became aware of it a few years ago through online research I have read a number of stories about this machine. Many people or maybe even most/all have gotten significant relief from it according to their testimonials. My wife and I have thought about having her look into it in Hartford where they have one, since we have family near there. The cost has always stopped us, something like $5000 or so if I remember right. That probably would not stop us but then we read that a followup treatment would likely be required after 2-3 months and who can afford the money for that along with the extra travel, etc.? Maybe if someone offers this near Nashville we might be able to consider it someday. I would think for anyone that can afford it that is suffering with PN it would be of tremendous interest to pursue it, but I don't read very many people discussing it so I can only assume hardly anyone can afford it. Too bad, it seems so promising!
winney, laura, jim, steeldove, etc. My heart goes out to all of you when I read your posts, especially during these trying times.I have only had SFN for 2 yrs. and have manageable pain so far. I do have constant anxiety about my future but want you to know that you are all in my prayers. I can’t imagine what it must be like for you all trying to cope in a daily basis. I just hope you are often surrounded by supportive loving family and friends. Helen
Just catching up with all the recent posts. I read this lady's story @johnbishop linked to his post about her success with the Calmare scrambler system. Since I became aware of it a few years ago through online research I have read a number of stories about this machine. Many people or maybe even most/all have gotten significant relief from it according to their testimonials. My wife and I have thought about having her look into it in Hartford where they have one, since we have family near there. The cost has always stopped us, something like $5000 or so if I remember right. That probably would not stop us but then we read that a followup treatment would likely be required after 2-3 months and who can afford the money for that along with the extra travel, etc.? Maybe if someone offers this near Nashville we might be able to consider it someday. I would think for anyone that can afford it that is suffering with PN it would be of tremendous interest to pursue it, but I don't read very many people discussing it so I can only assume hardly anyone can afford it. Too bad, it seems so promising!
@jesfactsmon Hi Hank, Wanted to tell you that I had Scrambler Therapy, here in Illinois. I had 2, 10 time sessions. The first group of 10 gave me significant pain relief for about 3 weeks. Then the pain came back. I then had 10 more sessions, and it did nothing to help. I asked for a reduction in the cost, before I started the second group of 10 treatments, and the cost was cut in half. The man who did my treatments is well known in Scrambler therapy, and people travel to him sometimes, when it has not been successful elsewhere. I met people there, primarily with CRPS, who swore by the treatments. One teenage CRPS patient had significant relief in one foot, but not in the other. Another said she could not walk without it. I have serious peripheral neuropathy in my feet, and I can be in agony sometimes. I wish it had worked consistently for me, but it did not. If you want your wife to try it, you might negotiate a price. Anyway, hope this helps. Sincerely, Lori Renee
rwinney and all - thanks for posting ! I have felt red hot fireworks plus flaming swords bursting up through my feet into my legs, swarms of wasps stinging me, and raging forest fires but when I look at my body, there are no wasps, no fire anywhere, no swords or fireworks - nothing. I asked my nervous system "Why don't you send out false messages of pleasure instead of pain? I'm sorry you're dying, but we could have a good time of it just as easily as a bad time." I got no answer. Peggy
@pfbacon I think you could talk to your nerves till you are blue in the face, and nothing would change. I tell myself I am ok all the time, and tell my nerves to stop screaming! I tell myself I am ok, I picture myself at the beach, my favorite place, and still, the stabbing, burning, throbbing....God, do I hear you, Peggy. Horrible stuff to handle.... Lori Renee
I'm trying something new: taking Aleve tonight, because it lasts 12 hours, it might mitigate the pain I wake up with every morning. I've been taking 2 aspirins and stretching while waiting for the aching (like fibromyalgia) to subside. Peggy
@pfbacon I hear you about our pain. Im like you have fibromyalgia and 2 back fractures that cause neuropathy in my thighs . What I have to do is take Aleve and Tramadol together to get relieve . Its sad that the feds wont let us have our pain meds that worked for us in the past We aren't junkies.
@jesfactsmon Hi Hank, Wanted to tell you that I had Scrambler Therapy, here in Illinois. I had 2, 10 time sessions. The first group of 10 gave me significant pain relief for about 3 weeks. Then the pain came back. I then had 10 more sessions, and it did nothing to help. I asked for a reduction in the cost, before I started the second group of 10 treatments, and the cost was cut in half. The man who did my treatments is well known in Scrambler therapy, and people travel to him sometimes, when it has not been successful elsewhere. I met people there, primarily with CRPS, who swore by the treatments. One teenage CRPS patient had significant relief in one foot, but not in the other. Another said she could not walk without it. I have serious peripheral neuropathy in my feet, and I can be in agony sometimes. I wish it had worked consistently for me, but it did not. If you want your wife to try it, you might negotiate a price. Anyway, hope this helps. Sincerely, Lori Renee
It's stories like yours that give me pause Lori. If you are going to go to that much trouble and expense you'd like to at least have some assurance it will be effective. Like you I have read of several people who have sworn by this, but even with that they still need follow up within a couple months or less which would not be terrible if the machine were located near where you live. Unfortunately there is not one near us as far as I know right now. Well for now we'll just keep this in our hip pocket to maybe consider again someday. My condolences to you on your poor experience and lost money invested. It must have been devastating to have 3 weeks of relief and then have to go back to pain city again. One thing, if it's true pain builds character then this forum must be filled with them. 😉
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@pfbacon Oh Peggy...I hear you and love the conversation with your nerves. I think we've all had it. Doesn't seem quite right, does it, that our body's nervous system can have it's way with us. It infuriates me sometimes! Days I yearn for distraction so my mind can catch a break from the pain that always exists. Im hoping this evening finds you distracted. Be well.
Rachel
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2 ReactionsI'm trying something new: taking Aleve tonight, because it lasts 12 hours, it might mitigate the pain I wake up with every morning. I've been taking 2 aspirins and stretching while waiting for the aching (like fibromyalgia) to subside. Peggy
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1 ReactionJust catching up with all the recent posts. I read this lady's story @johnbishop linked to his post about her success with the Calmare scrambler system. Since I became aware of it a few years ago through online research I have read a number of stories about this machine. Many people or maybe even most/all have gotten significant relief from it according to their testimonials. My wife and I have thought about having her look into it in Hartford where they have one, since we have family near there. The cost has always stopped us, something like $5000 or so if I remember right. That probably would not stop us but then we read that a followup treatment would likely be required after 2-3 months and who can afford the money for that along with the extra travel, etc.? Maybe if someone offers this near Nashville we might be able to consider it someday. I would think for anyone that can afford it that is suffering with PN it would be of tremendous interest to pursue it, but I don't read very many people discussing it so I can only assume hardly anyone can afford it. Too bad, it seems so promising!
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2 Reactions@helennicola Hello Helen. What a lovely message to wake up to. Thank you for such caring thoughts. I hope you have a pleasant day today. 🌹🌷🌺
Rachel
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2 ReactionsRachel, you are very welcome and thanks for the lovely bouquet, it’s not every day I get flowers!
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1 Reaction@jesfactsmon Hi Hank, Wanted to tell you that I had Scrambler Therapy, here in Illinois. I had 2, 10 time sessions. The first group of 10 gave me significant pain relief for about 3 weeks. Then the pain came back. I then had 10 more sessions, and it did nothing to help. I asked for a reduction in the cost, before I started the second group of 10 treatments, and the cost was cut in half. The man who did my treatments is well known in Scrambler therapy, and people travel to him sometimes, when it has not been successful elsewhere. I met people there, primarily with CRPS, who swore by the treatments. One teenage CRPS patient had significant relief in one foot, but not in the other. Another said she could not walk without it. I have serious peripheral neuropathy in my feet, and I can be in agony sometimes. I wish it had worked consistently for me, but it did not. If you want your wife to try it, you might negotiate a price. Anyway, hope this helps. Sincerely, Lori Renee
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1 Reaction@pfbacon I think you could talk to your nerves till you are blue in the face, and nothing would change. I tell myself I am ok all the time, and tell my nerves to stop screaming! I tell myself I am ok, I picture myself at the beach, my favorite place, and still, the stabbing, burning, throbbing....God, do I hear you, Peggy. Horrible stuff to handle.... Lori Renee
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2 Reactions@pfbacon I hear you about our pain. Im like you have fibromyalgia and 2 back fractures that cause neuropathy in my thighs . What I have to do is take Aleve and Tramadol together to get relieve . Its sad that the feds wont let us have our pain meds that worked for us in the past We aren't junkies.
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1 ReactionIt's stories like yours that give me pause Lori. If you are going to go to that much trouble and expense you'd like to at least have some assurance it will be effective. Like you I have read of several people who have sworn by this, but even with that they still need follow up within a couple months or less which would not be terrible if the machine were located near where you live. Unfortunately there is not one near us as far as I know right now. Well for now we'll just keep this in our hip pocket to maybe consider again someday. My condolences to you on your poor experience and lost money invested. It must have been devastating to have 3 weeks of relief and then have to go back to pain city again. One thing, if it's true pain builds character then this forum must be filled with them. 😉
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