rabbit10
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Anyone here dealing with peripheral neuropathy?
Anyone here dealing with peripheral neuropathy?
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Chris Trout, Volunteer Mentor
@artscaping
@artscaping
Posts: 540
Joined: Jul 11, 2017
@jenniferhunter @clayhere @johnbishop @artscaping
Hi Chris,
Yes you're absolutely right about MFR and the layers underneath the layers. It takes a long time to get that way, so unraveling that will take time too. I didn't know if it was OK to post the website link for the John Barnes website. My PT is an expert level trained there at Therapy on the Rocks in Sedona in addition to her doctorate in physical therapy. She told me that if you can't find a trained MFR practitioner in your area, call Therapy on the Rocks. They have to pay to be listed on the website, but if you call them, they can give you names of people who trained there. It was my physical therapist who said to me first, that she thought I had an issue with my cervical spine when my first symptom was a pain in my ankle when I turned my head that turned pain on and off with the position of my head. During the time I was treating TOS (thoracic outlet syndrome) with her, and my Cervical disc ruptured, and as time went on, I stopped progressing on my TOS therapy, and we focused on managing the muscle spasms as the spine issues got worse because of the spine problem. I did have spine surgery at Mayo, and had to recover and rehab from that during which my TOS pain got worse because of stopping therapy during healing of the incision and waiting for fusion, and because of the increasing tightness of the surgical scar tissue. I made a choice to stay in a neck brace for 4 months because I didn't want hardware on my spine and had to wait for the bones to fuse, and doing this weakens the neck muscles. I've been rehabbing, doing MFR on the TOS and scar tissue tightness, and rebuilding the muscle I lost before surgery because of spinal cord compression. I am now making progress on the TOS again. I have learned so much from my PT, that I can self treat and resolve a lot of things and we've been able to reduce therapy to once a week. I also build my core strength with swimming and horseback riding (slowly and safely with my doctor's permission) and that helps everything. Recovery is a slow process when there are a few things involved. I've had 3 years with MFR treatment and it does work wonders if you can be patient and help out with home stretching. She tells me that bones just go where they are told to go by the muscles and if those are twisted and stuck where they don't function properly, this is what MFR can help. With your comment about your feet, this is also what happens with TOS in the arms. My hands used to turn blue and purple and get cold when the circulation was compromised along with the nerve signals. I don't get this anymore. There are multiple compression points in the chest and variations on TOS, but it's basically not enough space in-between the collar bone and rib cage where everything needs to pass through. The fascia is like a spider web net that connects everything and I've felt it pull and release from my head down to my toes and even across the sides in my body. When it is off, it puts lots of extra pressure wherever it is too tight. Scar tissue forms in fascia too when it is cut or torn, and MFR can help that too. The fascia actually changes from a semi solid to a liquid state when it releases, and if reforms itself. Sometimes is takes some extra work to keep it after the remodeling. When you feel it release, it is like a slight tingle and this brings circulation to that area that was overly compressed. It's common to see areas of the skin blanch, and then turn red when circulation is restored. Once you get things moving correctly again, maintain it with stretching or something like Yoga which does also stretch the fascia. By doing this you also gain a 3 dimensional body awareness and can feel how things are connected and put together. I always feel great after my PT sessions. Chris, ask your therapist to explain what she does and make some suggestions for a home program to maintain what she has done. I have equipment recommended by my PT, foam roller, balls, things to mobile the spine, and reset the sacrum. You should ask for recommendations that would benefit your case from her. I have to reset my pelvis when it shifts because of fascial tightness. That can contribute a lot to back and sciatic pain. Releasing fascia also releases the toxins that have been stored there for years, and you can detox that with soaking in an epsom salt bath every few weeks or so for at least a half hour. My skin would get very itchy and irritated until I detox it through the skin, and I also absorb magnesium from the bath which helps the body in detoxing. I used to have a lot of fascial pain too. If you make this your habit, you will get past all of that and the fascia will be healthy again, and will have proper circulation of nutrients and oxygen as well as proper waste removal. You'll probably create some dark bathtub rings when you start this, and as more of the bad stuff has been released, it will happen a lot less when you soak in the epsom salts. Good luck on your journey and be well!
@jenniferhunter Thanks for your response. You said it all so well. By the way….it has been 5 days now and my feet still do what feet are supposed to do because of MFR last week. I do have a layer misbehaving in my rib cage so that may be where we start this week.
I did ask my MFR therapist here to look on her roster for Rochester and she said there were none at expert level before Maple Grove. She then offered to come in for me on Sat or Sun because she doesn't think I can get by without MFR for 7 weeks while at Mayo in support of the person who is sharing the aging process with me. He is undergoing a 7-week series of daily treatments M-F. What a stellar response! I am so very grateful for a gift of caring.
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Jennifer Hunter
@jenniferhunter
@jenniferhunter
Posts: 750
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@artscaping @jenniferhunter Thanks for your response. You said it all so well. By the way….it has been 5 days now and my feet still do what feet are supposed to do because of MFR last week. I do have a layer misbehaving in my rib cage so that may be where we start this week.
I did ask my MFR therapist here to look on her roster for Rochester and she said there were none at expert level before Maple Grove. She then offered to come in for me on Sat or Sun because she doesn't think I can get by without MFR for 7 weeks while at Mayo in support of the person who is sharing the aging process with me. He is undergoing a 7-week series of daily treatments M-F. What a stellar response! I am so very grateful for a gift of caring.
Chris, I'm glad to help. I'm happy that you are making progress, and keep up the good work! It sounds like you have a great therapist. I know how difficult my journey has been for me and how long it was before I found people who could make a real difference in my care. It was a lot of years. If I knew back then what I know now…..and I want to help others who are on similar journeys. I also know from my therapist that everything I am doing now to fix the fascia and strengthen will help me stay in balance as I age. If you keep things functioning and moving in the correct place, you avoid the uneven pressure that puts wear and tear on joints like knees. My mom went through knee replacement, and I'd like to keep my original set working correctly. Keep doing your stretching even when you are at Mayo being a caregiver. You can do stretches with balls, foam blocks, straps, and I even found a couple of curved (so you could reach around your shoulder) massage sticks with 2 rubber knobs (knob position rotates) at 5 Below that are great for holding to push the fascia and self treat. I use 2 at a time to stretch opposite directions. My PT is even recommending to other patients to buy them. It's like a mini version of a Theracane (which is bigger and hard plastic for deep tissue massage.) I think swimming helps me maintain what my therapist does in session as I keep moving what she has just loosened. I'm glad to hear from you and please let me know how your doing every once in awhile.
REPLY Sophia86. I have been getting worse with numb feet for the past.15 years or longer. Now am not driving my car because my feet have gotten so numb. I want to get better so I can drive car again, Ali.
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John, Volunteer Mentor
@johnbishop
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Posts: 4641
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@sophia86 Sophia86. I have been getting worse with numb feet for the past.15 years or longer. Now am not driving my car because my feet have gotten so numb. I want to get better so I can drive car again, Ali.
Hello @sophia86 — Welcome to Connect. Not being able to drive was one of my biggest fears also. I've had small fiber peripheral neuropathy for 20+ years with only the numbness and no pain in my feet and ankles. Learning as much as you can about your health problems and becoming an advocate for yourself is a great first step.
I'm tagging @steeldove who has talked about Kempf electronic hand controls for cars to help handicapped drivers who may have some experience to share with you. More on the hand controls can be found on their website at http://www.kempf-usa.com/.
@sophia86 can you share a little more about your diagnosis and any treatments you have tried?
John
John, Volunteer Mentor
@johnbishop
@johnbishop
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@susan24 Anyone have neuropathy from taking Anastrazole after dealing with breast cancer.
Hello @susan24, I'm not familiar with the drug but there is quite a bit of evidence available discussing chemotherapy induced neuropathy. Here are a few that may be helpful:
Common Side Effects of Arimidex (Anastrozole) Drug Center – RxList
— https://www.rxlist.com/arimidex-side-effects-drug-center.htm#overview
Peripheral neuropathies from chemotherapeutics and targeted agents: diagnosis, treatment, and prevention
— https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3480245/
Chemotherapy-induced peripheral neuropathy: an update on the current understanding
— https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4920214/
@susan24, I was going to recommend the following Connect discussion but I see that you have already posted in the discussion and have started meeting others with your symptoms. I would like to welcome you to Connect and hope you find answers to all your questions.
Groups > Breast Cancer > Concerned about the side effects of anastrozole
— https://connect.mayoclinic.org/discussion/i-completed-all-treatments-for-breast-cancer-but-now-i-am-supposed/
John
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hosta, Eve
@hosta
@hosta
Posts: 117
Joined: Aug 09, 2016
@johnbishop Hello @susan24, I'm not familiar with the drug but there is quite a bit of evidence available discussing chemotherapy induced neuropathy. Here are a few that may be helpful:
Common Side Effects of Arimidex (Anastrozole) Drug Center – RxList
— https://www.rxlist.com/arimidex-side-effects-drug-center.htm#overview
Peripheral neuropathies from chemotherapeutics and targeted agents: diagnosis, treatment, and prevention
— https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3480245/
Chemotherapy-induced peripheral neuropathy: an update on the current understanding
— https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4920214/
@susan24, I was going to recommend the following Connect discussion but I see that you have already posted in the discussion and have started meeting others with your symptoms. I would like to welcome you to Connect and hope you find answers to all your questions.
Groups > Breast Cancer > Concerned about the side effects of anastrozole
— https://connect.mayoclinic.org/discussion/i-completed-all-treatments-for-breast-cancer-but-now-i-am-supposed/
John
Hosta here. I also have peripheral neuropathy and nerve damage in my left leg and foot. It is now beginning in my right leg and foot. I believe it started from the shingles in my left leg & foot. I also have a very bad back and the nerve damage is also from there. So far I haven't found anything that helps much! I know I hurt most of the time!
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John, Volunteer Mentor
@johnbishop
@johnbishop
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@hosta Hosta here. I also have peripheral neuropathy and nerve damage in my left leg and foot. It is now beginning in my right leg and foot. I believe it started from the shingles in my left leg & foot. I also have a very bad back and the nerve damage is also from there. So far I haven't found anything that helps much! I know I hurt most of the time!
Hello Eve @hosta, I wasn't familiar with shingles associated with neuropathy so went searching and found an interesting paper that associates shingles and neuropathy and closes saying "focusing on nervous system complications (including peripheral polyneuropathy) as well as pain are essential."
NIH – A Case of Herpes Zoster Peripheral Polyneuropathy Manifested by Foot Drop in Chronic Myeloid Leukemia
— https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3503951/
Eve, I read one of your earlier posts mentioning you were trying to get a pain pump to help with your pain but the doctor said you were not a candidate. Did the doctor tell you why you were not a candidate?
Hoping you have a pain free day.
John
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barbarn
@barbarn
@barbarn
Posts: 121
Joined: Mar 25, 2018
@hosta Hosta here. I also have peripheral neuropathy and nerve damage in my left leg and foot. It is now beginning in my right leg and foot. I believe it started from the shingles in my left leg & foot. I also have a very bad back and the nerve damage is also from there. So far I haven't found anything that helps much! I know I hurt most of the time!
@ hosta, Your symptoms sound so much like mine! only it is my right leg that is involved, now beginning in my left. Bad back, had shingles on the right thigh 1 1/2 yr ago, seem to have restless leg on that side which keeps me from ever having a good night's sleep. Balance problems also, so have had some falls which have also landed on that right side. My dr. has prescribed Tramadol and Gabapentin which are supposed to help with the pain, and Requip which is supposed to help with the RLS. The last few nights I have taken more of the drugs, and realize that they create more balance problems. What to do???
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oldkarl
@oldkarl
@oldkarl
Posts: 605
Joined: May 25, 2016
@barbarn @ hosta, Your symptoms sound so much like mine! only it is my right leg that is involved, now beginning in my left. Bad back, had shingles on the right thigh 1 1/2 yr ago, seem to have restless leg on that side which keeps me from ever having a good night's sleep. Balance problems also, so have had some falls which have also landed on that right side. My dr. has prescribed Tramadol and Gabapentin which are supposed to help with the pain, and Requip which is supposed to help with the RLS. The last few nights I have taken more of the drugs, and realize that they create more balance problems. What to do???
@barbarn Ya gotta remember there are thousands of diseases and disorders and accidents that can and do use and control neuropathy. Each one has its own timeline and pattern. In fact, there are almost 2000 known Amyloidosis forms, and each one is different. Even different forms of diabetes 2 have different patterns. And Tramadol and Gabapentin do NOT work for all of them. I have tried many drugs for mine, and none have worked any better for me than generic super strength Tylenol. Well, and some comfort food occasionally.
REPLY
hosta, Eve
@hosta
@hosta
Posts: 117
Joined: Aug 09, 2016
@johnbishop Hello Eve @hosta, I wasn't familiar with shingles associated with neuropathy so went searching and found an interesting paper that associates shingles and neuropathy and closes saying "focusing on nervous system complications (including peripheral polyneuropathy) as well as pain are essential."
NIH – A Case of Herpes Zoster Peripheral Polyneuropathy Manifested by Foot Drop in Chronic Myeloid Leukemia
— https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3503951/
Eve, I read one of your earlier posts mentioning you were trying to get a pain pump to help with your pain but the doctor said you were not a candidate. Did the doctor tell you why you were not a candidate?
Hoping you have a pain free day.
John
John, Thank you for the article, very interesting. Yes I thought I would get the pain pump. All that was told to me was no Other than the pain in my back and I have "Mild COPD" It seems it is my age. I am 82. My heart is good and other than the pain, I am in good health. I get so tired of the dr. saying "AT YOUR AGE"! I ask them, "Just because I am 82 does that mean I have to be in pain?" They just look at me! I am not one who sits in a chair all day feeling sorry for myself. I take care of myself, I can and freeze from the garden, I quilt, crochet, I am involved in my church. I don't want to give up. I can't stand long, lift, or reach high with my left arm. I feel that if I was younger, something would be done. I also fee that after you reach a certain age doctors don't want to waste time on you! Maybe I sound bitter and I don't mean to. I have a strong faith in God and I know he will get me thru this.
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hosta, Eve
@hosta
@hosta
Posts: 117
Joined: Aug 09, 2016
@barbarn @ hosta, Your symptoms sound so much like mine! only it is my right leg that is involved, now beginning in my left. Bad back, had shingles on the right thigh 1 1/2 yr ago, seem to have restless leg on that side which keeps me from ever having a good night's sleep. Balance problems also, so have had some falls which have also landed on that right side. My dr. has prescribed Tramadol and Gabapentin which are supposed to help with the pain, and Requip which is supposed to help with the RLS. The last few nights I have taken more of the drugs, and realize that they create more balance problems. What to do???
barbarn. I pray that you find some relief from your pain. I to have restless leg syndrome and it is under control now!
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oldkarl
@oldkarl
@oldkarl
Posts: 605
Joined: May 25, 2016
@hosta John, Thank you for the article, very interesting. Yes I thought I would get the pain pump. All that was told to me was no Other than the pain in my back and I have "Mild COPD" It seems it is my age. I am 82. My heart is good and other than the pain, I am in good health. I get so tired of the dr. saying "AT YOUR AGE"! I ask them, "Just because I am 82 does that mean I have to be in pain?" They just look at me! I am not one who sits in a chair all day feeling sorry for myself. I take care of myself, I can and freeze from the garden, I quilt, crochet, I am involved in my church. I don't want to give up. I can't stand long, lift, or reach high with my left arm. I feel that if I was younger, something would be done. I also fee that after you reach a certain age doctors don't want to waste time on you! Maybe I sound bitter and I don't mean to. I have a strong faith in God and I know he will get me thru this.
@hosta I have been looking at the world through your glasses for some time now. A while back I decided to do something different. I started writing up all the crap I was going through, including false dXs and everything. Now I have about 140 computer pages of notes and dX and responses. You can look at it or download it at https://bit.Ly/1w7j4j8 under "Amyloidosis". Free. It has really helped me think through this mess. I suggest it for anyone.
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yes i have pn Im taking gapapetin 1.5 at dinner and 1.5 at bed time 900 each time, Im okay during the day put after a few hours in bed I have pain around my shins, at time it feels like its cold it keeps me awake I play on the computer untill I can't stay awake, does laser therapy work has anyone used it?
@jjwest
Pain is not kind that is for sure and it is scary at times. I was wondering if you have seen a Neurologist. They have a wealth of information that I was not aware of.
Hope you get some answers soon.
Peace that passes all understanding fill you….JJ
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