Hi Colleen, I was diagnosed Ovarian cancer in 2016 and developed neuropathy early on during chemotherapy. Unlike most people, mine did not go away. I also have Hypothyroid, Celiacs, Osteoarthritis and Raynaud's. Because of the Raynaud’s, it was confusing at first; my symptoms weren’t completely the same as before. My feet are super numb, and they feel like I have something thick stuck to the bottom of them. On the upside, the burning and tingling from Raynaud’s is significantly reduced...which means I need to be even more careful about heat and cold. My shins and knees also hurt. My hands are now extremely sensitive, painful as heck and I lost a great deal of my dexterity and strength in them. I was a legal secretary; so, needless to say, the career came to an end. I used to be a musician, artists, seamstress, did extremely delicate embroidery work, smocking and loved gardening. I now try to find other creative outlets that require less dexterity or trauma to my hands.
Last year (2 years later) I went through radiation for breast cancer (I’m BRCA negative, go figure!) and shortly after completing treatment I thought I was having a major flare: Nope, i was diagnosed with fibromyalgia. They changed the AI I was on which helped a bit. I was already on gabapentin so they increased the dose to 2400mg. They also increased Cymbalta to 90 mg, increased the muscle relaxant and added an anti-inflammatory. They also increased the amount of Xanax I take on top of my regular meds. I think it helps the spasms in my hands.
To be honest I am not sure how much all the medication helps. I am still in a lot of pain. Movement helps more than anything. I try to keep moving by doing restorative yoga, or Qi Gong, TaiChi, walking, bicycling, swimming and lake kayaking. I also developed lymphedema which comes with its own set of issues, and does limit some of my activities. It doesn’t help that my immune system hasn’t recovered and I get everything that goes around.
I am stubborn, which I think is a good thing when you have any ONE of these diseases. If something doesn’t work one way, find a work around. Larger handled hair brushes, a stand to hold the hairdryer, gloves that help to hang on to things (I.e. my kayak paddle), shoes that slip on or have Velcro (yes it’s a bit embarrassing sometimes). My sweet husband paints my toenails for me and got me a robotic vacuum. I avoid small buttons, zipper pulls and snaps in favor of larger ones.
I have good and bad days, some days pain wins. Given my diseases, I am blessed to have more time. More time with family and friends.
I am also very blessed to live in Colorado. Four season, each with fun outside activities and the bluest skies ever. And, cbd is legal here. So, when a friend suggested I try It I thought, “why not”. After speaking with my doctor, I did a bunch of research, recruited a friend (five in fact) to go with me, and gave it a try. Finding the right product/blend is tricky but it helps. And it gives me more good days!
Hi Colleen, I was diagnosed Ovarian cancer in 2016 and developed neuropathy early on during chemotherapy. Unlike most people, mine did not go away. I also have Hypothyroid, Celiacs, Osteoarthritis and Raynaud's. Because of the Raynaud’s, it was confusing at first; my symptoms weren’t completely the same as before. My feet are super numb, and they feel like I have something thick stuck to the bottom of them. On the upside, the burning and tingling from Raynaud’s is significantly reduced...which means I need to be even more careful about heat and cold. My shins and knees also hurt. My hands are now extremely sensitive, painful as heck and I lost a great deal of my dexterity and strength in them. I was a legal secretary; so, needless to say, the career came to an end. I used to be a musician, artists, seamstress, did extremely delicate embroidery work, smocking and loved gardening. I now try to find other creative outlets that require less dexterity or trauma to my hands.
Last year (2 years later) I went through radiation for breast cancer (I’m BRCA negative, go figure!) and shortly after completing treatment I thought I was having a major flare: Nope, i was diagnosed with fibromyalgia. They changed the AI I was on which helped a bit. I was already on gabapentin so they increased the dose to 2400mg. They also increased Cymbalta to 90 mg, increased the muscle relaxant and added an anti-inflammatory. They also increased the amount of Xanax I take on top of my regular meds. I think it helps the spasms in my hands.
To be honest I am not sure how much all the medication helps. I am still in a lot of pain. Movement helps more than anything. I try to keep moving by doing restorative yoga, or Qi Gong, TaiChi, walking, bicycling, swimming and lake kayaking. I also developed lymphedema which comes with its own set of issues, and does limit some of my activities. It doesn’t help that my immune system hasn’t recovered and I get everything that goes around.
I am stubborn, which I think is a good thing when you have any ONE of these diseases. If something doesn’t work one way, find a work around. Larger handled hair brushes, a stand to hold the hairdryer, gloves that help to hang on to things (I.e. my kayak paddle), shoes that slip on or have Velcro (yes it’s a bit embarrassing sometimes). My sweet husband paints my toenails for me and got me a robotic vacuum. I avoid small buttons, zipper pulls and snaps in favor of larger ones.
I have good and bad days, some days pain wins. Given my diseases, I am blessed to have more time. More time with family and friends.
I am also very blessed to live in Colorado. Four season, each with fun outside activities and the bluest skies ever. And, cbd is legal here. So, when a friend suggested I try It I thought, “why not”. After speaking with my doctor, I did a bunch of research, recruited a friend (five in fact) to go with me, and gave it a try. Finding the right product/blend is tricky but it helps. And it gives me more good days!
My name is Betty. I have had peripheral neuropathy for about 8 years now. I take Gabapentin 400 (2 capsules) three times a day. I take Venlafaxine in the morning and ALSO 4 blood presure medicines and thyroid medicine.. My pain in my left foot and leg is constant. A neurosurgeon did back surgery on my back and fused L2-S1 with stress fractures at each end after surgery. He now says they have healed but I had constant pain in back and left leg and foot. Last time I saw him he dismissed me and that was 2 years ago. I also has stenosis, degenerative disc disease and the disc above and below fusion and bar in my back are callapsing. My primary sent me to a neurologist and he told me I have seen the best neurosurgion and doctor there are he can't help me. My right foot is now start to tingled and burn. i make myself walk evey morning first thing to help control the pain. I use walking sticks due to balance being so back. My primary is really the only dr. I see now and use my essential oils to supplement my medicines. I slowly am loosing all trust in medical doctors. I feel they don't really care except my primary who has sent me to the pain clinic. We have tried steroid shots which haven't worked, ablazion which worked for two weeks, a mixed compound which made me gain weight really bad and didn't help much with the pain. What do you recommend now. i am retired on medicare and social security. I can't afford to just continue spending money for no results.
Chris Trout, Volunteer Mentor | @artscaping | Oct 18, 2019
Good evening @betty1954, Welcome to Connect. I am glad you found this forum. I was just about to sign off for the evening when I saw your post. There is a note of discouragement and disappointment in your words. Since I cannot see you or hear you I have to depend on your words. I don't want to read too much into them......just sort of get the feeling that some frustration has you concerned.
You wrote, "he dismissed me". Do you mean that he refused to serve you as a patient? Or that your treatment with him was complete?
One of the most difficult things to hear is that there is no cure for neuropathy. Those of us so afflicted are sort of left to our own resources and the attention of patient-centered clinicians and practitioners. I see that you are using gabapentin and essential oils plus your blood pressure and thyroid medications.
I didn't count your orthopedic surgeries and yet I know you have undergone some extensive surgical efforts. I think you even have me beat. Only now do i know how my reckless lifestyle and resulting surgeries may have contributed to my neuropathy. You didn't mention SFN or small fiber neuropathy. Has that been ruled out?
If you could eliminate one disturbing symptom what would that be? Pain? Lack of mobility? Depression? Anxiety? Let's begin on the same page.....the page of what matters most. I look forward to hearing from you.
May you be free of suffering this evening and have a refreshing sleep. Chris
Good evening @betty1954, Welcome to Connect. I am glad you found this forum. I was just about to sign off for the evening when I saw your post. There is a note of discouragement and disappointment in your words. Since I cannot see you or hear you I have to depend on your words. I don't want to read too much into them......just sort of get the feeling that some frustration has you concerned.
You wrote, "he dismissed me". Do you mean that he refused to serve you as a patient? Or that your treatment with him was complete?
One of the most difficult things to hear is that there is no cure for neuropathy. Those of us so afflicted are sort of left to our own resources and the attention of patient-centered clinicians and practitioners. I see that you are using gabapentin and essential oils plus your blood pressure and thyroid medications.
I didn't count your orthopedic surgeries and yet I know you have undergone some extensive surgical efforts. I think you even have me beat. Only now do i know how my reckless lifestyle and resulting surgeries may have contributed to my neuropathy. You didn't mention SFN or small fiber neuropathy. Has that been ruled out?
If you could eliminate one disturbing symptom what would that be? Pain? Lack of mobility? Depression? Anxiety? Let's begin on the same page.....the page of what matters most. I look forward to hearing from you.
May you be free of suffering this evening and have a refreshing sleep. Chris
Thanks for replying Chris. I am very discouraged I guess. My pain never stops. The spasms are ongoing and I try to always smile and tell everyone I am great. I know my primary doctor who is wonderful wants to help but he has also seen doors closed without any answers given. I will have to read up on SFN and small fiber neuropathy. That is something that I have never heard about. I sometimes feel like no one wants to take the time to just sit down and explain to me what to expect or how to deal with what is happening to my body. I feel shoved aside when it comes to doctors explaining anything. I print off each report after seeing a doctor and that is the way I learn more about what is going on than from the doctors. I guess I am looking for a plan on how to deal with this. I am a doer not a sit and let it happen person. I have yet to have someone tell me this is what you can do to get better or feel better or feel more informed. Everyday is more pain and more spasms and no answers.
Thanks for replying Chris. I am very discouraged I guess. My pain never stops. The spasms are ongoing and I try to always smile and tell everyone I am great. I know my primary doctor who is wonderful wants to help but he has also seen doors closed without any answers given. I will have to read up on SFN and small fiber neuropathy. That is something that I have never heard about. I sometimes feel like no one wants to take the time to just sit down and explain to me what to expect or how to deal with what is happening to my body. I feel shoved aside when it comes to doctors explaining anything. I print off each report after seeing a doctor and that is the way I learn more about what is going on than from the doctors. I guess I am looking for a plan on how to deal with this. I am a doer not a sit and let it happen person. I have yet to have someone tell me this is what you can do to get better or feel better or feel more informed. Everyday is more pain and more spasms and no answers.
@betty1954, Good afternoon. Oh, my dear....knowledge is power and you certainly seem to need some of that stuff. I have to leave right now and will return to your need to know questions later this evening. In the meantime, I am tagging @johnbishop so that he can share with you the video with the explanations of all types of neuropathy. Don't let the big words scare you away.
You may want to share with John and me, the medications you are currently taking. Do you have an exercise program that helps like gentle yoga? Do you practice mindful meditation? There are many feel better options. Let's get this wheel in motion.
Goodmorning @johnbishop.
If you have a minute will you help @betty1954 understand neuropathy better? Thanks....and may you both be free of suffering for even a few moments today @betty1954. Chris
Thanks for replying Chris. I am very discouraged I guess. My pain never stops. The spasms are ongoing and I try to always smile and tell everyone I am great. I know my primary doctor who is wonderful wants to help but he has also seen doors closed without any answers given. I will have to read up on SFN and small fiber neuropathy. That is something that I have never heard about. I sometimes feel like no one wants to take the time to just sit down and explain to me what to expect or how to deal with what is happening to my body. I feel shoved aside when it comes to doctors explaining anything. I print off each report after seeing a doctor and that is the way I learn more about what is going on than from the doctors. I guess I am looking for a plan on how to deal with this. I am a doer not a sit and let it happen person. I have yet to have someone tell me this is what you can do to get better or feel better or feel more informed. Everyday is more pain and more spasms and no answers.
Good evening again @betty1954, I hope the evening has been pleasant for you. Your story of discovery is frustrating and not uncommon. There is nothing wrong with you. For how long have you been in constant pain? What have you read in your patient reports that might give a clue about your next step or even a possible diagnosis?
Sometimes this disconnect happens when the patient doesn't know how to describe what the body is feeling in the terminology that the clinician uses. My journey took between 2-3 years to correctly identify and diagnose SFN (small fiber neuropathy). There is a skin test that pretty much seals the deal. Here is the medical language. "Demonstration of a reduction in the Epidermal Nerve Fiber Density (ENFD) on punch skin biopsy is a highly sensitive and specific test for Small Fiber Neuropathy (SFN)."
By the way, this test is minimally discomforting. It takes about 45 seconds. Then it is sent off to one of the few labs that analyze the results.
So for tonight....just breathe....3 deep breaths. Accept that you are beginning a journey and it is too soon to be dismayed and discouraged. Your "homework" includes John's video and any tips you might pick up by perusing the SFN discussion on Connect. Here is the link. https://connect.mayoclinic.org/discussion/small-fiber-neuropathy-1/?pg=4#comment-266111
I do want you to know that I noted your comment about your retiree status and financial resources. I think we are in the same boat.
May you be free of suffering and the causes of suffering. Chris
Good evening again @betty1954, I hope the evening has been pleasant for you. Your story of discovery is frustrating and not uncommon. There is nothing wrong with you. For how long have you been in constant pain? What have you read in your patient reports that might give a clue about your next step or even a possible diagnosis?
Sometimes this disconnect happens when the patient doesn't know how to describe what the body is feeling in the terminology that the clinician uses. My journey took between 2-3 years to correctly identify and diagnose SFN (small fiber neuropathy). There is a skin test that pretty much seals the deal. Here is the medical language. "Demonstration of a reduction in the Epidermal Nerve Fiber Density (ENFD) on punch skin biopsy is a highly sensitive and specific test for Small Fiber Neuropathy (SFN)."
By the way, this test is minimally discomforting. It takes about 45 seconds. Then it is sent off to one of the few labs that analyze the results.
So for tonight....just breathe....3 deep breaths. Accept that you are beginning a journey and it is too soon to be dismayed and discouraged. Your "homework" includes John's video and any tips you might pick up by perusing the SFN discussion on Connect. Here is the link. https://connect.mayoclinic.org/discussion/small-fiber-neuropathy-1/?pg=4#comment-266111
I do want you to know that I noted your comment about your retiree status and financial resources. I think we are in the same boat.
May you be free of suffering and the causes of suffering. Chris
Happy Sunday everyone!
I keep a library of helpful links on my phone that I refer to periodically and thought I'd share on occasion. Here's one for today.
Rachel
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I wish you all the best Colleen -- I want them to find some remedies and cures for you! Peggy
You have inspired me!
Thank you.
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2 ReactionsMy name is Betty. I have had peripheral neuropathy for about 8 years now. I take Gabapentin 400 (2 capsules) three times a day. I take Venlafaxine in the morning and ALSO 4 blood presure medicines and thyroid medicine.. My pain in my left foot and leg is constant. A neurosurgeon did back surgery on my back and fused L2-S1 with stress fractures at each end after surgery. He now says they have healed but I had constant pain in back and left leg and foot. Last time I saw him he dismissed me and that was 2 years ago. I also has stenosis, degenerative disc disease and the disc above and below fusion and bar in my back are callapsing. My primary sent me to a neurologist and he told me I have seen the best neurosurgion and doctor there are he can't help me. My right foot is now start to tingled and burn. i make myself walk evey morning first thing to help control the pain. I use walking sticks due to balance being so back. My primary is really the only dr. I see now and use my essential oils to supplement my medicines. I slowly am loosing all trust in medical doctors. I feel they don't really care except my primary who has sent me to the pain clinic. We have tried steroid shots which haven't worked, ablazion which worked for two weeks, a mixed compound which made me gain weight really bad and didn't help much with the pain. What do you recommend now. i am retired on medicare and social security. I can't afford to just continue spending money for no results.
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2 ReactionsGood evening @betty1954, Welcome to Connect. I am glad you found this forum. I was just about to sign off for the evening when I saw your post. There is a note of discouragement and disappointment in your words. Since I cannot see you or hear you I have to depend on your words. I don't want to read too much into them......just sort of get the feeling that some frustration has you concerned.
You wrote, "he dismissed me". Do you mean that he refused to serve you as a patient? Or that your treatment with him was complete?
One of the most difficult things to hear is that there is no cure for neuropathy. Those of us so afflicted are sort of left to our own resources and the attention of patient-centered clinicians and practitioners. I see that you are using gabapentin and essential oils plus your blood pressure and thyroid medications.
I didn't count your orthopedic surgeries and yet I know you have undergone some extensive surgical efforts. I think you even have me beat. Only now do i know how my reckless lifestyle and resulting surgeries may have contributed to my neuropathy. You didn't mention SFN or small fiber neuropathy. Has that been ruled out?
If you could eliminate one disturbing symptom what would that be? Pain? Lack of mobility? Depression? Anxiety? Let's begin on the same page.....the page of what matters most. I look forward to hearing from you.
May you be free of suffering this evening and have a refreshing sleep. Chris
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Helpful -
Hug
3 ReactionsThanks for replying Chris. I am very discouraged I guess. My pain never stops. The spasms are ongoing and I try to always smile and tell everyone I am great. I know my primary doctor who is wonderful wants to help but he has also seen doors closed without any answers given. I will have to read up on SFN and small fiber neuropathy. That is something that I have never heard about. I sometimes feel like no one wants to take the time to just sit down and explain to me what to expect or how to deal with what is happening to my body. I feel shoved aside when it comes to doctors explaining anything. I print off each report after seeing a doctor and that is the way I learn more about what is going on than from the doctors. I guess I am looking for a plan on how to deal with this. I am a doer not a sit and let it happen person. I have yet to have someone tell me this is what you can do to get better or feel better or feel more informed. Everyday is more pain and more spasms and no answers.
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Hug
1 Reaction@betty1954, Good afternoon. Oh, my dear....knowledge is power and you certainly seem to need some of that stuff. I have to leave right now and will return to your need to know questions later this evening. In the meantime, I am tagging @johnbishop so that he can share with you the video with the explanations of all types of neuropathy. Don't let the big words scare you away.
You may want to share with John and me, the medications you are currently taking. Do you have an exercise program that helps like gentle yoga? Do you practice mindful meditation? There are many feel better options. Let's get this wheel in motion.
Goodmorning @johnbishop.
If you have a minute will you help @betty1954 understand neuropathy better? Thanks....and may you both be free of suffering for even a few moments today @betty1954. Chris
Hi @betty1954 -- I shared a short video by Matthew B Jensen Assistant Professor of Neurology, University of Wisconsin that gives a good explanation of how the different neuropathies are diagnosed in an earlier post in this discussion. Here is a link to the post with the video: https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/?pg=101#comment-321457
He also has many Youtube videos that you can find by searching using his name. Chris @artscaping is right that the more you can learn about your health condition, the better you can advocate for yourself. I shared my story of my diagnosis of idiopathic small fiber peripheral neuropathy and what has helped me in an early post here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985
Good evening again @betty1954, I hope the evening has been pleasant for you. Your story of discovery is frustrating and not uncommon. There is nothing wrong with you. For how long have you been in constant pain? What have you read in your patient reports that might give a clue about your next step or even a possible diagnosis?
Sometimes this disconnect happens when the patient doesn't know how to describe what the body is feeling in the terminology that the clinician uses. My journey took between 2-3 years to correctly identify and diagnose SFN (small fiber neuropathy). There is a skin test that pretty much seals the deal. Here is the medical language. "Demonstration of a reduction in the Epidermal Nerve Fiber Density (ENFD) on punch skin biopsy is a highly sensitive and specific test for Small Fiber Neuropathy (SFN)."
By the way, this test is minimally discomforting. It takes about 45 seconds. Then it is sent off to one of the few labs that analyze the results.
So for tonight....just breathe....3 deep breaths. Accept that you are beginning a journey and it is too soon to be dismayed and discouraged. Your "homework" includes John's video and any tips you might pick up by perusing the SFN discussion on Connect. Here is the link.
https://connect.mayoclinic.org/discussion/small-fiber-neuropathy-1/?pg=4#comment-266111
I do want you to know that I noted your comment about your retiree status and financial resources. I think we are in the same boat.
May you be free of suffering and the causes of suffering. Chris
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3 ReactionsYour reply is so very encouraging
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2 ReactionsHappy Sunday everyone!
https://www.foundationforpn.org/living-well/lifestyle/managing-peripheral-neuropathy/I keep a library of helpful links on my phone that I refer to periodically and thought I'd share on occasion. Here's one for today.
Rachel
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