Vent about Permanent Neuropathy
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That is not bad, then. Mine are bluetooth compatible. When my dog is being whiney, I can get youtube dog music (repetitive, simple) on the tv, and listen to my own stuff from my phone.
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In addition to gabapentin, I’m taking vitamin D, B12 and magnesium oxide. Im under a neurologist care, so will get blood word every 6 months to check blood levels. I also have facial numbness and am taking different meds at night to help with that. I’m also been trying different essential oils, walking everyday, REIKI therapy and have just started acupuncture.
On the topic of hearing aids (maybe we need a new topic), I have had my Bluetooth enable hearing aids for 4 years and love them. It’s so nice to be able to hear conversations again. Love to listen to audiobooks too.
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Hearing loss is nerve damage, yes? I am also taking vitamin D3, but that was before, because of chronic infection. I was worried about losing my hearing more, but it did not make it any worse. I think smoking was a contributing factor, as there has not been much change since I quit (I switched to vaping, then quit-- the motor component was what I missed in previous attempts).
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MCBaker - Hearing loss can be related to nerve issues. My hearing loss isheredity. I’d been working with an audiologist for several years before finally getting hearing aids. I’ll probably get to rechargeable ones once I need new ones, depending on cost. I’ve been dealing with D deficiency for quite a while as well. I guess wearing a hat while outside is good and bad.
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Thanks for all the good input. I have a bit of numbness and def loss of balance, I have the pins and needles and some pain but don't notice it during day when occupied but very annoying at night, but my main issue is the wasting of muscle and weak legs.
I am opposed to meds unless absolutely necessary so I tolerate the discomfort/pain. At night I sleep with the TV on so I have something to focus on other than my legs and pinky of left hand. Since Gab won't help with my weakness I have not used. I tried it years ago and it did not help though I never followed up with the neurologist so maybe the concentration was not enough. Kamboka, I use the CBC creams and I think it helps.
McBaker, so are so very right, it is all about attitude. Sometimes happiness doesn't just happen so you have to make yourself happy. Some days I am depressed and my neuropathy is really bothering me. I have wondered which came first, my foul mood or the flare up of the neuropathy. I have found my mood affects how I cope with the neuropathy, though I will say stress def sets it off for whatever reason.
Moth, P-5-P? Never heard of that. Interesting.
Minus, thanks for your neurologist's thoughts. That is pretty much what I have been told but I also think doctors kinda dismiss the merits of holistic approaches to medicine. Sometimes personal experiences are more telling? For example on Amazon the supplement Neuropathy Support has excellent reviews. Out of 602 people, most of which are verified purchases, 81% give it between four and five stars. Seems to me there must be something to it, no?
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Two more thoughts. McBaker and Minus, I have recently given up smoking though I still vape just a tiny bit. I understand that should help with the neuropathy since better circulation and oxygen exchange. Minus, I have tried and failed so many times in the past but often I would remember you telling me that when i am good and ready it will happen. You were so very right! It is exactly how it played with me.
A couple years ago I was diagnosed with an esophagus issue. The muscles of the esophagus are weakened so it takes several swallows for things to go down. The specialist said probably neuropathy related. I try not to think what other organs might be affected but because I am pre-diabetic it was decided that my sugar levels may be contributing to an already compromised body so I am taking metformin to keep my glucose levels on the low side.
So that's me. Prior to BC I considered myself in very good health. My only issue was my smoking. I remember by oncologist during my first consult put my health at "Fair". I confronted him and told him I was in very good health and he responded "but you have cancer". We compromised and he changed it to "Good". 👍 Today I am afraid I might fall into the "Poor" category.
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Hi All,
It's been years since I've logged on here. Just checking in today because my foot pain (not even sure if it's neuropathy any more) seems to be worsening. Hopefully I remember how to even post this response :-)
I have some foot pain every day and have spent hundreds of dollars on creams, ointments, supplements, teas, shoes etc. The only thing that really helps is icing them. I take Gabapentin (900 mg) at night and that, in addition to listening to guided meditations, has helped me to sleep better. Oh yeah, also did a sleep study and was diagnosed with apnea so my CPAP helps me stay asleep.
I see my oncologist every 6 months and this past spring I complained the my feet were now getting achy with a lot of pain in the ball of my foot. He explained that it was likely arthritis and recommended Voltaren topical gel. This requires 3-4 applications each day and I have to say that I just don't have time for that. Especially since I'm not sure that my oncologist should be diagnosing arthritis! Anyway, now I'm wondering if the Arimidex that I've been taking for the past 2 years may be the cause of this pain. It's such a crap shoot knowing what causes what. Other than, for me, pain causes frustration and frustration causes depression. I'm supposed to do the Arimidex for another 3 years (to complete my cancer treatment) but I am considering just stopping.
I can't remember if exercise has helped me in the past, but it is too painful to walk far. I'm checking into our area swimming pool to see if it has re-opened since COVID.
Other than this pain - 8 years out is feeling pretty good!
Kathy
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BeanBean Have you been to a podiatrist? One helped me a lot. Diagnosing the cause, prescribing orthotics, etc. might help.
Really nice to see that you've had a good long time now past your treatment. I'm missing my swim exercise, which I did pre-covid. Deep-water, with resistance equipment. Not feeling very safe about going back to indoor spaces with other humans, but each part of the country is different on how successful Delta is right now.
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Thanks HikingLady. I did see one last year who, after a very cursory exam, suggested metatarsal pads. I now have an appointment with one recommended by my primary care doctor so I'm still hopeful. That the thing that I find about neuropathy - I get frustrated and down but I'm ever hopeful that I will find a solution to help me get back to being active.
Delta variant hasn't hit here yet (hope it doesn't), but I feel the need to be extra cautious even as things are opening up.
Nervous about my 17-year-old starting his senior year of high school.
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There's a Fasting benefits thread. We recently discussed fasting for nerve pain. I'm not certain it helped with my sciatica, but I've been fasting for years. Only one little numb spot from sciatica and no neuropathy from chemo. Hope it helps.
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Aug 24, 2021 08:44AM PAKNC wrote:
Chiming in here - I fast 14 hours overnight, this is a habit that was easy for me to adopt because I'm a night owl and never hungry in the AM. As they say, the best diet is the one you stick to. I've been doing this for about six months now and it's pretty effortless for me. I made the change to deal with the pre diabetes that spiked when on Tamoxifen. I have also read Dr. Longo's books. I did a few longer fasts a year ago using Prolon, but did these to combat some terrible nerve pain from bad dental surgery. I felt like it helped me to turn the corner with the chronic pain but those 5-day fasting mimicking diets were not a walk in the park for me!
I am pleased to see more and more research pointing to relationships between insulin/metabolic health and breast cancer recurrence. I have read some studies indicating that the prolonged overnight fast can help reduce recurrence risk so I'm hoping I may address two issues at once - high blood sugar and recurrence risk.
Aug 24, 2021 02:31PM NorCalS wrote:
Here's a 2019 article that discusses the possibility that fasting may help with neurological issues:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC68361...
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BeanBean - I am dealing with neuropathy but right now a stress fracture is my main problem and the Voltaren has really helped. Yes, I am using it four times a day but I will do anything to help the pain.
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I broke an ankle and have torn ligaments. I too was prescribed Voltaren. I only use it at night because that is when my pain is the worst or maybe that is just when I am more aware of it but I too find it very helpful. I was using the CBD lotions which also were helpful but expensive. Did you notice the warning on Voltaren? Apparently not for long term use and also pulled off market in other countries due to potential risk?
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Hey 'not broken' - So sorry to hear about your ankle. Hope you are doing OK otherwise. Sorry, don't know anything about Voltaren. I don't check in often since I can't deal with all the horrid changes to the site.
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I have used Voltaren for probably 15 years...I have never had any problems with it. Maybe some people simply use too much, but still I use a lot so who knows...I just know it works for me!!!!
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notbrokenjustbent - I use voltaren gel for small areas and arnica cream for larger areas. Been also using Doterra Deep Blue Rub that comes in a stick. I have used CBD cream for my neuropathy pain on my feet sometimes. I hope you feel better.
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I broke my knee (tibial plateau to be specific) around Thanksgiving time. When I need it Voltaren, I use it. Sometimes all it takes is a dab the size of a large Hershey's kiss. I ought to order another tube. Yesterday I got down on my knees and cleaned up my 3 ft x 3 ft mint garden. Most of my weight was on the other knee, and I used my arms mostly to make my way around. I am also now able to get upright from a kneeling position without excessive acrobatics. But yes, pain is amplified with nerve damage. Sigh!! And of course, with the injury that I had, further nerve damage is likely.
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Hi Minus, how are you? Yeah, what the heck is up with this site. Yikes.
Well consensus here is that Voltaren works well. I had always heard that topical don't work because they cannot penetrate deep enough but we have disproved that internet myth.
I started a supplement called Nerve Support. Figured it was worth a try.
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Hey not broken. Yes, the site is very frustrating. I think about you often. Are you still in your Mom's house? Have your boys grown up & moved on? I haven't even see my son's 'new' house yet since he moved the end of 2019 - just before Covid. Coincidentally I've wanted a smoke several times this week - but I KNOW I can't. Lots of annoying issues.
Great that you found Voltaren works. I haven't tried it but likely will. Let us know about the Nerve Support.
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Yes Minus, I am still at my mother's place. Meh, things aren't great but hopefully will get better going forward. I would PM you but this site makes me crazy. It takes me forever just to be able to log in and thereafter my "favorites" don't show up. I have little patience these days.
Minus, I think about you too often. After not having been here in months I was glad to see you here and doing well. 👍
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NB - agreed,this site is a nightmare. I'm not on as much & certainly no longer trying to navigate to help new members with their questions. Sigh - that was the whole point!!! We'll PM once it settles down later this summer.
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Has anyone tried timed released gabapentin? I was looking up the different dosages for gabapentin and noticed time released was available.
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I'm not sure if my Gabapentin is time released or not.
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timed release is much more expensive, and most insurances do not OK it. I was tired of nine capsules a day, and got switched to three tablets a day, then 1 1/2 tab three times a day, which is not much problem. However, I generally wake up at around 4:00 AM, sleepwalk to the bathroom to take morning meds, then use some voltaren, go back to bed, and wake at 6:30 AM.
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mcbaker - I checked my insurance and the time released gabapentin isn’t covered, so I guess I won’t broach the subject with my neurologist. I am concerned about increasing my daytime dosage. Don’t want to get too drowsy, so I’ll need to see if he can increase dosage by 100mg rather than 300mg.
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I just looked it up, and it is available in that smell of a dosage. A lot of people hate it and pass around horror stories about it, so it would be reasonable for your doctor to understand your desire for tiny increments.
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I switched to pregabalin ( lyrica) which worked so much better..
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sociallisa - did you need to stop gabapentin before starting Lyrica
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Thank you Mary
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the doctor had a schedule for me to switch...I started with only one lyrica at night and after a time had one in the am too. The lyrica was a lifesaver for. The neurontin really did nothing much for me except to make me sleepy.
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