How do you cope with neuropathy in yo... - SHARE Metastatic ...

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How do you cope with neuropathy in your hands and feet?

SophSP
SophSP

Hello Everyone,

I have been experiencing neuropathy in my hands and feet every day for the last week. At first, I thought that perhaps I had been lying in a funny position at night, but it has been happening each morning. To begin with, it was both feet and hands. The last three mornings or so, it has just been my left hand. As I wake up, it feels numb, but then the numbness disappears by the time I get up. I am still able to move my fingers and I am not in any pain. I spoke to one of the oncology nurses yesterday and she thought it sounded a bit strange, but she didn't seem overly concerned, as I have no other symptoms and the numbness always disappears. I asked if it could be a side effect of Letrozole. She did not think so, as I have been on it since the beginning of June. But I think it is, as I had an unexplained reaction the day after I started Letrozole. My right hand seized up completely and I couldn't move it at all. My husband had to call an ambulance, as I was scared I was having a stroke (I wasn't, and all my vitals were normal).

I am seeing my GP tomorrow to get a referral for physiotherapy, I am having radiotherapy next week and then in September I am going to be starting complementary therapy. So perhaps all of these therapies combined will help. I wouldn't want this to happen while I am driving. I drink a minimum of 3 litres of water a day, I get lots of exercise and I try to eat a healthy diet. Is there anything else I could do? I asked the oncology nurse what I can do to prevent this from happening again, but she had no answers for me.

Thank you!

Sophie x

37 Replies
oldestnewest

How are your electrolytes? I have mild neuropathy in my feet which seems better if I drink green juice regularly.

SophSP
SophSP
in reply to nstonerocks

I'm not sure, to be honest. My last blood test results back in June were good. Nothing seemed amiss. I am having my next blood test this Friday. What do you add to your green juice? Perhaps I should try that.

Can you tell me what is in your green juice and where to purchase? Thank you.

I make it. You can juice or make smoothies. Juicing gives you more vitamins and enzymes per volume. It is more time consuming. With smoothies you throw everything in a blender and you get the whole fruit and vegetable. Added fiber and supposedly better if you’re diabetic. I have a loose recipe of one head of kale, about 1 inch pineapple wedge cut from whole pineapple, half a cucumber, half a lemon. You can add ginger and whatever else you want. This is a pretty green drink and if you don’t like greens you might have to alter it a bit. Kris Carr has recipes on her website that are more refined. You’ll pretty quickly figure out what you like.

An electrolyte imbalance could cause painful muscle spasms. A blood test would show this.

The juicing isn’t a miracle cure but provides lots of vitamins and enzymes . I juice a head of kale with a half of lemon, about half to whole cucumber and about an inch thick pineapple ring. There are many juice and smoothie recipes out there if you are not overly fond of the taste. Drop by Kris Carr’s website for some ideas. The thing is to keep a ratio of about 3 vegetables to one fruit. A centrifugal juicer is best. Less heat. If you don’t want to or can’t spend the money try making a smoothie with a nutribullet like blender. Good luck. 🍀Hope it helps.

SophSP
SophSP
in reply to nstonerocks

Thanks for the advice. I'll mention it to my GP when I see him tomorrow and see if an electrolyte imbalance could be to blame. I've got a magic bullet, so can use that to concoct a recipe! I've got Kris Carr's web site bookmarked, but have not had much of a chance to look at it. I will head over there to take a look. Thanks again!

JoyBe
JoyBe
in reply to nstonerocks

I've been wanting to do my own juicing, can you suggest a good juicer?

I'm clueless to the new kitchen tools that have been out in the market for years. All I have is a blender for smoothies.

Thanks !

nstonerocks
nstonerocks
in reply to JoyBe

The best kind is a centrifugal juicer. They don’t create as much heat as other juicers so preserving more of the vitamins and enzymes. I will check which one I have and let you know. They run 200+ not cheap. Kris Carr’s website explains all this if u want to check it out.

JoyBe
JoyBe
in reply to nstonerocks

Thanks for checking on the specifics, it will be well worth the investment. I really didn't want to just randomly buy one. I'll check out the Kris Carr's website, while I wait to see which one you using.

JoyBe
JoyBe
in reply to nstonerocks

Kris Carr's website is Wonderful!! Thank you so much for the suggestion. I'm definitely going to try some of her recipes, they are right up my alley.

What an inspiration !

SophSP
SophSP
in reply to JoyBe

I like the look of Kris' recipes too. I'll have to tell my sister-in-law about it. She has cancer too.

Hidden
Hidden
in reply to JoyBe

JoyBe, I have an Omega "Juice Extractor" its about 2 years old now. Model VSJ8430S. I am sure there are others. I did a little research and settled on this. It is a bit of a pain to clean, but so are all of them. Centrifugals are better for quality of juice than the other kind. Most of the parts can go into the dishwasher but you have to clean the fiber off the metal centrifuge part. Glad you liked Kris's website. It is packed with inspiration.

After I finished 26 rounds of chemo( including red devil) my neuropathy started in my hands and feet. During chemo my hands and feet were in ice packs to prevent neuropathy but still got it. My fingers toes and feet always feel numb I've kind of gotten used to it since it's been a year and half.recently had a problem with neck back and arm pain fro m degenerative disc disease, and put on Lyrica as one of the treatments. Well it's working well on my problem pain areas but my neuropathy is much less. I'm hoping I can stay on it. Hope this helps. Take care!

SophSP
SophSP
in reply to Mimiholl

Thank you for letting me know about your experience. I hope the Lyrica continues to help you. It sounds like the neuropathy is a side effect of your chemotherapy. I forgot to mention it to my GP this afternoon. I only get it when I wake up in the morning. Then it disappears.

Take care,

Sophie x

Sophie. I made an oil blend that really helps my neuropathy. Its 4 oz of coconut oil, 16 drops frankenscence (anti inflammatory), 12 drops cypress (benefits circulatory system, reieves sweling), 12 drops lavendar (assists cell renewal and healing). Ive shared this with a few others with similar type diagnosis and they claim it works also. Thought i would share

JoyBe
JoyBe
in reply to Aelgersma

Fantastic remedy! I'll try it. Thanks

SophSP
SophSP
in reply to Aelgersma

Thanks, Aelgersma! I will grab some paper and write down that recipe. Do you rub the blend into your hands and feet, or soak them? How long for?

Thanks again,

Sophie x

Aelgersma
Aelgersma
in reply to SophSP

I uae the solid coconut oil and melt it in the microwave. Add oils then it will solidify. Just rub it in. I find it helps. P.s. for this amount i use the little canning jars so the oening is big enough to get in

SophSP
SophSP
in reply to Aelgersma

Thank you!

Ok, here's my 2 cents... as a "former"deep tissue massage therapist for 26 yrs. clearly I have had hand neuropathy way before my MBC.

I still have it but it's intensified when it happens.

Here's what I have to do every night and it keeps my hand from going numb.

I have discovered from many years of experience that hand neuropathy during the night while sleeping comes from your neck cervical not having the support needed.

This lack of proper support using the night causes your neck muscles to be contracted and locked in a congested muscle pattern/too short while pulling on the skeletal structures.

The remedy would be to create enough support with pillows and or adjustable bed ( I hope to buy one soon).

By elevating your upper back, placing soft pillows as support under the neck as well as a soft pillow under your hand and lower arm if needed; the goal is too allow your neck to be completely supported with no contracted muscles.

Once the neck cervical is released from the muscle pulling it slightly out of alignment the feeling comes back in your hand.

If you can't afford a good down pillow, roll a towel to place under the neck as support.

If you try it, let me know how it works.

Hidden
Hidden
in reply to JoyBe

Hi JoyBe,

Since you are a bodywork expert, can you give your opinion about the best mattress for neck and lower back pain. I also have lt hip and random pains that I don't even pay attention to I'm so used to them. I don't want to sink into the mattress, as with a lot of memory foam. I was looking at a latex mattress, comes in several layers, Certipur certified. I currently have a foam topper over an innerspring which had deep quilting. I hate the deep quilting, it is so uncomfortable for me to sleep on. I just got back from a 2 week trip and I had no discomfort until I slept in my bed again. I've tried all kinds of pillows for my neck. When I was on vacation, this one hotel had a very hard pillow, not sure what was in it, but it was great. Thanks for any input.

JoyBe
JoyBe
in reply to Hidden

I don't have a lot of experience with buying a mattress, I would think your weight and muscle conditioning would play a pivotal role in what kind of mattress suits your comfort.

However, I am definitely getting an adjustable base mattress, here is an example: mattressfirm.com/mattress-s...

Hi JoyBe,

That's really interesting. I hadn't thought about my neck support during the night. I did actually try to use a pillow to elevate my arm during the night last night (I don't know what made me think to do that!), but it didn't work. But if I try to support my neck, back and arm, maybe that will help. I'll give it a go tonight.

Thank you,

Sophie x

JoyBe
JoyBe
in reply to SophSP

FYI ..Be sure not to place the pillow under the upper arm that would make the muscles in the shoulders contract. You want to have the shoulders totally relaxed so that your clavicle is not extended, that's why your supporting your lower arm and hand.

You'll know exactly when you have the neck supported. That will be when suddenly your feeling in your hand returns.

IF YOU HAVE A GOOD CHIROPRACTOR, I WOULD TRY THAT.

SophSP
SophSP
in reply to blms

I've never been to a chiropractor before, but thanks for the suggestion.

I have a great one here near D.C.. But, research for one and ask an orthopedic if you have one for a referral. They can make all difference in your discomfort.

I had severe pain in my hands and feet after a few years on Letrozole. The doctors didn’t think it was the medication causing the pain, so my primary tested me for Lupus, among other things. Then the Letrozole stopped working. I stopped the pills and the pain was gone. I took so much ibuprofen, and it didn’t really help. Now I’m on Ibrance and I get some numbness in my fingers. Good luck. I wish I had more to offer.

SophSP
SophSP
in reply to kkrouse

It does sound like it's the Letrozole causing the neuropathy. I wonder why the medical team are reluctant to admit it could be that? The oncology nurse I spoke to seemed sure it wasn't the Letrozole. But I've not had such a reaction to anything else before. x

That’s where I was. But after taking 3 days off the pill, the pain was gone. My doctor seems to believe me, but now that I’m off the drug, it’s a moot point for me. See if you can take a short break to find out if it’s the culprit. My team let me stay off for an entire vacation, 17 days, which was great. Then we started a new protocol.

SophSP
SophSP
in reply to kkrouse

Thank you. I'm glad you no longer have that problem.

letrozole totally did that to me after being on it for about 18 months. It became unbearable so my doc changed me to Aromasin which is the same drug, different maker and the neuropathy went away within just days.

SophSP
SophSP
in reply to BeckyHobson

Thank you, Becky. I don't find the neuropathy unbearable. It just feels like pins and needles and then it goes when I get up in the morning.

I have had the neuropathy in my feet for over a year. I was told it could happen after radiation at any time. I also developed lymphedema in my right arm also about a year after treatment for b/c. I tried naturally to handle the neuropathy with 600 mg of Alpha Lipoic Acid and it helped tremendously. It also helped lower my glucose and A1C which had risen since I started the Ibrance/Letrozol. I am now on Gabapentin for the neuropathy as the symptoms got so bad that I could not sleep and I had to walk on a cold tile floor to relieve the attacks. I could not stand the feel of sheets on the bed. So the new meds have helped to avoid these nerve attacks. I feel tingly at times, but I can live with that. Walking everyday is a great exercise for the feet and massage is good. I can feel the bottoms of my feet now on the carpeting. I don't feel like I am wearing socks or pads on the bottoms of my feet.

Thanks for sharing your experience. The neuropathy I have been feeling is not as bad as you describe. I just feel it when I wake up in the morning and then it quickly disappears. But if it gets worse I will certainly see what can be done to control or stop it. Are you diabetic?

Oh, and I walk a lot too! I walk for many miles each week (I've never tracked how far I walk, but it's a lot!) as I run my own pet sitting and dog walking business. I think that is what helps me with what I am going through. My oncologist told me not to give up my business, so she must appreciate the health benefits.

I have it bad in my feet so I have started a all natural supplement called nerve renew. I ordered it online, after just three days my pain is half what it normally is. I am not one to normally buy this kind of stuff but I was at the end of my rope with the pain .They offer a free trial so i went for it and am glad i did.Just search for it and you will find it. good luck ladies with whatever you try.

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