It only takes about twenty minutes to start relieving the pain and makes me very productive plus better than any antidepressants I’ve had. Saved my sanity.
My 88 year old husband was told he had stage 3 CKD about a year ago (he seems to jump back and forth between a and b). At the same time when the knee jerk reflex was done there was no reaction on either knee. He has been treated for some years for BP, Thyroid, gout, mood problem, sleep problems and enlarged prostrate. He has extreme fatigue. Constant pain in the back in the kidney areas. Shortness of breath, pressure around the chest area. Blood pressure is normal with meds - however when he showers it drops to 90/41! He has to lay down. He also has purpura. Hasn't had a blood test since last November. I suspect he might be in Stage 4 or close to it. He does not want dyalisis or tests done at his age and health. I'm assuming the lack of reflex means he is suffering from peripheral neuropathy. Thank you. I hate seeing him suffer but not sure what to do. He only wants to eat waffles - sweet stuff and will eat fruit (which I give him often).
A few minutes ago Bill had stabbing back pain on the left side high on the rib area. Different than the chronic pain he has felt in his back across the whole back in the lower rib area. He hadn't been doing anything when it hit. Bad enough that he gave in and took a pain pill. Waiting for that to kick in. Not sure if kidney related.
A few minutes ago Bill had stabbing back pain on the left side high on the rib area. Different than the chronic pain he has felt in his back across the whole back in the lower rib area. He hadn't been doing anything when it hit. Bad enough that he gave in and took a pain pill. Waiting for that to kick in. Not sure if kidney related.
Hi @billchitwood, I think only a doctor would know if your husbands symptoms are kidney related. In an earlier post @colleenyoung mentioned that Bill is might be having symptoms related to his health conditions and this might be something that a palliative care doctor or symptom management nurse can help you with. You responded that you wouldn't know how to find a palliative care doctor or symptom management nurse and Medicare doesn't cover it unless it's end of life. I'm wondering if you might want to look into palliative care just to see if you can get some assistance. Here are some sites that explain it a little better and may help.
Hi @billchitwood, I think only a doctor would know if your husbands symptoms are kidney related. In an earlier post @colleenyoung mentioned that Bill is might be having symptoms related to his health conditions and this might be something that a palliative care doctor or symptom management nurse can help you with. You responded that you wouldn't know how to find a palliative care doctor or symptom management nurse and Medicare doesn't cover it unless it's end of life. I'm wondering if you might want to look into palliative care just to see if you can get some assistance. Here are some sites that explain it a little better and may help.
Thank you. I checked out the site and put out a question to an agency that serves our area. Not sure if Medicare would cover if he isn't in end stage failure. Last we were told in 2020 was he was in Stage 3. He has not wanted to go out of the house for any reason.
Hello. My husband suffers from painful burning idiopathic peripheral neuropathy. Has anyone else besides Jim tried Imipramine or doxipene along with their Gaba to help manage the pain?
Hello. My husband suffers from painful burning idiopathic peripheral neuropathy. Has anyone else besides Jim tried Imipramine or doxipene along with their Gaba to help manage the pain?
Evening @greenacres
Since 2006, I have had Residual Peripheral Neuropathy, a result of Chemotherapy. I've been on several medications, including imipramine, doxepine, Lyrica, Cymbalta, and now Savella. I know that everyone is different, so with that being said, none of them has had a substantial positive effect that outweighed the negative side effects. While on Neurontin, I fell too many times and I think that will be the likely case with Savella. I just had my first fall on Saturday and I'm pretty sure that Savella was the cause. Anyway, like I said, everyone is different.
I've learned to tolerate the pain. Right now, my doctor prescribed Savella as an off label antidepressant...which so far is mediocre.
The neuropathy never goes away. I even have it in the tip of my nose and lips.. Some strategies that help decrease the pain in my hands & feet are: wearing gloves, such as Isotoner & even gardening gloves; hand braces with laces, fitted ankle socks, self-massage with cream that has MSM or Arnica, swimming, and distraction. Everything has been trial and error.
I hope I offered some element of comfort.
Evening @greenacres
Since 2006, I have had Residual Peripheral Neuropathy, a result of Chemotherapy. I've been on several medications, including imipramine, doxepine, Lyrica, Cymbalta, and now Savella. I know that everyone is different, so with that being said, none of them has had a substantial positive effect that outweighed the negative side effects. While on Neurontin, I fell too many times and I think that will be the likely case with Savella. I just had my first fall on Saturday and I'm pretty sure that Savella was the cause. Anyway, like I said, everyone is different.
I've learned to tolerate the pain. Right now, my doctor prescribed Savella as an off label antidepressant...which so far is mediocre.
The neuropathy never goes away. I even have it in the tip of my nose and lips.. Some strategies that help decrease the pain in my hands & feet are: wearing gloves, such as Isotoner & even gardening gloves; hand braces with laces, fitted ankle socks, self-massage with cream that has MSM or Arnica, swimming, and distraction. Everything has been trial and error.
I hope I offered some element of comfort.
Hello @audriana Thank you for sharing your experience with me. It is very comforting to read. You're very brave in having learned to adapt. I haven't wanted my husband to join the community because some of the stories I'm reading are so frightening and he already has lots of fears regarding his condition. When my husband was taking a higher dose of the neurontin he also fell (I wasn't around) but fortunately didn't hurt himself. Currently takes 900 (300 x 3/day) He got himself down to the lowest possible dose of doxepine (has it compounded) so it knocks him out at night without to terrible of a hangover the next day. When he took a higher dose of the doxipene it seemed that his pain was not as bad but his body wasn't functioning in other ways which is why I wondered if possibly there was a version of that type of drug that wasn't basically a sleeping pill. I read about the Cymbalta but I know several people who had very bad experiences with that drug in particular, specially when it came time to get off of it.
His pain is currently mostly in his feet and we found these strange kenkoh sandals and insoles that help distract from the pain. He seems to do best when absorbed in some sort of distraction that he enjoys (music and walking) and I'm hoping he will get back to swimming. Your kind message has given me comfort. Thank you so very much.
Hello @audriana Thank you for sharing your experience with me. It is very comforting to read. You're very brave in having learned to adapt. I haven't wanted my husband to join the community because some of the stories I'm reading are so frightening and he already has lots of fears regarding his condition. When my husband was taking a higher dose of the neurontin he also fell (I wasn't around) but fortunately didn't hurt himself. Currently takes 900 (300 x 3/day) He got himself down to the lowest possible dose of doxepine (has it compounded) so it knocks him out at night without to terrible of a hangover the next day. When he took a higher dose of the doxipene it seemed that his pain was not as bad but his body wasn't functioning in other ways which is why I wondered if possibly there was a version of that type of drug that wasn't basically a sleeping pill. I read about the Cymbalta but I know several people who had very bad experiences with that drug in particular, specially when it came time to get off of it.
His pain is currently mostly in his feet and we found these strange kenkoh sandals and insoles that help distract from the pain. He seems to do best when absorbed in some sort of distraction that he enjoys (music and walking) and I'm hoping he will get back to swimming. Your kind message has given me comfort. Thank you so very much.
You're welcome @ greenacres.
Once a teacher, always a teacher...a calling. I taught in the public school setting as well as at the college level within the area of exceptional children.
I'm always on the lookout for finding methods and strategies that offer people a way to succeed. I would rather accentuate the positive and acknowledge the negative in order to problem solve. So, I understand the reservations you have had to reach out to others.
Surround yourself with nourishing people and take care of yourself. Encourage your husband to take advantage of the "good" moments and work together as a team--reliable alliances.
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It only takes about twenty minutes to start relieving the pain and makes me very productive plus better than any antidepressants I’ve had. Saved my sanity.
Julika, where do you get Red Mengg da ?
A few minutes ago Bill had stabbing back pain on the left side high on the rib area. Different than the chronic pain he has felt in his back across the whole back in the lower rib area. He hadn't been doing anything when it hit. Bad enough that he gave in and took a pain pill. Waiting for that to kick in. Not sure if kidney related.
Hi @billchitwood, I think only a doctor would know if your husbands symptoms are kidney related. In an earlier post @colleenyoung mentioned that Bill is might be having symptoms related to his health conditions and this might be something that a palliative care doctor or symptom management nurse can help you with. You responded that you wouldn't know how to find a palliative care doctor or symptom management nurse and Medicare doesn't cover it unless it's end of life. I'm wondering if you might want to look into palliative care just to see if you can get some assistance. Here are some sites that explain it a little better and may help.
-- Medicare and palliative care: What to know: https://www.medicalnewstoday.com/articles/does-medicare-cover-palliative-care
-- What is Palliative Care (and how to get it): https://getpalliativecare.org/whatis/
Thank you. I checked out the site and put out a question to an agency that serves our area. Not sure if Medicare would cover if he isn't in end stage failure. Last we were told in 2020 was he was in Stage 3. He has not wanted to go out of the house for any reason.
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1 ReactionHello. My husband suffers from painful burning idiopathic peripheral neuropathy. Has anyone else besides Jim tried Imipramine or doxipene along with their Gaba to help manage the pain?
Evening @greenacres
Since 2006, I have had Residual Peripheral Neuropathy, a result of Chemotherapy. I've been on several medications, including imipramine, doxepine, Lyrica, Cymbalta, and now Savella. I know that everyone is different, so with that being said, none of them has had a substantial positive effect that outweighed the negative side effects. While on Neurontin, I fell too many times and I think that will be the likely case with Savella. I just had my first fall on Saturday and I'm pretty sure that Savella was the cause. Anyway, like I said, everyone is different.
I've learned to tolerate the pain. Right now, my doctor prescribed Savella as an off label antidepressant...which so far is mediocre.
The neuropathy never goes away. I even have it in the tip of my nose and lips.. Some strategies that help decrease the pain in my hands & feet are: wearing gloves, such as Isotoner & even gardening gloves; hand braces with laces, fitted ankle socks, self-massage with cream that has MSM or Arnica, swimming, and distraction. Everything has been trial and error.
I hope I offered some element of comfort.
-
Like -
Helpful -
Hug
1 ReactionHello @audriana Thank you for sharing your experience with me. It is very comforting to read. You're very brave in having learned to adapt. I haven't wanted my husband to join the community because some of the stories I'm reading are so frightening and he already has lots of fears regarding his condition. When my husband was taking a higher dose of the neurontin he also fell (I wasn't around) but fortunately didn't hurt himself. Currently takes 900 (300 x 3/day) He got himself down to the lowest possible dose of doxepine (has it compounded) so it knocks him out at night without to terrible of a hangover the next day. When he took a higher dose of the doxipene it seemed that his pain was not as bad but his body wasn't functioning in other ways which is why I wondered if possibly there was a version of that type of drug that wasn't basically a sleeping pill. I read about the Cymbalta but I know several people who had very bad experiences with that drug in particular, specially when it came time to get off of it.
His pain is currently mostly in his feet and we found these strange kenkoh sandals and insoles that help distract from the pain. He seems to do best when absorbed in some sort of distraction that he enjoys (music and walking) and I'm hoping he will get back to swimming. Your kind message has given me comfort. Thank you so very much.
You're welcome @ greenacres.
Once a teacher, always a teacher...a calling. I taught in the public school setting as well as at the college level within the area of exceptional children.
I'm always on the lookout for finding methods and strategies that offer people a way to succeed. I would rather accentuate the positive and acknowledge the negative in order to problem solve. So, I understand the reservations you have had to reach out to others.
Surround yourself with nourishing people and take care of yourself. Encourage your husband to take advantage of the "good" moments and work together as a team--reliable alliances.
-
Like -
Helpful -
Hug
2 Reactionsunder the skin of the soles of my feet is the feeling of cardboard getting worse year by year.Is there a treatment that actually works.