Anyone here dealing with peripheral neuropathy?
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@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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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.
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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.
Liked by John, Volunteer Mentor
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
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 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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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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@ 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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@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.
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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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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@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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