I've Not Seen Much Discussion Here On The Subject Of Pain Management SPECIFICALLY Related To Using Opioids. Why Is That Do You Think? | MyMyelomaTeam

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I've Not Seen Much Discussion Here On The Subject Of Pain Management SPECIFICALLY Related To Using Opioids. Why Is That Do You Think?
A MyMyelomaTeam Member asked a question 💭

For instance, I've had severe CPIN for over a decade due to Velcade and the only pain med that helps reduce the pain is Percocet. Any folks here in similar situation? Are you using opioids for pain relief? If so, what is your daily dosage?

posted August 25, 2023 (edited)
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A MyMyelomaTeam Member

Steve,
I am a big proponent of pain meds, which gave my mother quality of life during her last 6 months with ovarian cancer. I had severe hip or pelvic pain and it was torture to sit on the toilet or in the car. I started taking MRM’s Bone Maximizer III (4) with D3 & K 2. It took awhile but my bone pain is gone. For neuropathy my mom took “ Tiger’s milk”. One tablespoon of Nutritional yeast with 5-8 ounces of dairy and a half teaspoon of unsulphered blackstrap molasses. She had 30 strong chemo’s and no neuropathy. None. I try natural first if I can.
Paula🌹

posted August 27, 2023
A MyMyelomaTeam Member

Hi Paula - Reading about the benefits of blackstrap molasses (BSM) for non-hemi iron, anti-oxidants and many others, I stumbled on this on healthline.com

"Blackstrap molasses contains very high levels of the chemical acrylamide, which may be carcinogenic"

BSM rates as very high since its the third high temp cook.

The article did say drinking plenty of water daily can help to flush it from our body. Also, though proven in mice and rats, they say no proof in people, only suspected.

I had been thinking of using it daily for non-hemi iron - I may just stay with nutritional yeast with OJ.

Thinking about it - For a while as I go through treatment, I expect I will use the blackstrap. It’s going to help keep my iron levels through a non-hemi source.

Do you take this 3 times daily and how long have you been using it.

I’m expecting with plenty of daily water, it should be fine

Thanks

posted August 27, 2023 (edited)
A MyMyelomaTeam Member

Hi Steve - When I went through my first treatment in 21' / 22', I noticed that plenty of my neuropathy pain in my feet and some in my hands seemed to be due to the loss of fat just under the surface of my skin. Very easy to see in my hands. In doing so, I lost the normal cushioning that we have that seems to be between our bones and our skin.

During the past 20+ months, I've always worn two pairs of thick socks and always wore slippers or very cushioned shoes. Possibly due to my Scrambler treatment or just time, though its very painful to walk barefoot on my wood floors or ceramic tiles, I'm taking the approach of trying to build up calluses on my feet that I might be able to tolerate being directly on my feet.

I do have the benefit of my daily oxy. I expect if I can do so, I'll be much better off.

Regarding your neuropathy, do you have significant cramping in your feet and toes?

I've had this cramping ever since treatment. I've spent plenty of time with my physical therapist trying to stretch my muscles to release the cramping. The problem maybe more with the tendons rather than the muscles. During the last year, I've spent plenty of time at the gym doing stretching to reduce this cramping, with little help, and I get plenty of water and magnesium daily but there was plenty of damage done with my first treatment.

Since I'm starting a new treatment, I'm trying to head off the severe muscle loss before it happens again.

Even so, for all my effort, even now before this next treatment, its very painful to stretch and curl my toes.

I do have a a very nice message gun - DDVWU - about $50 on Amazon. I just spent 45 minutes massaging my legs, calves, feet tops, and feet bottoms - that helped more than just massaging the bottom of my feet only.

I think if I can build up feet calluses and continue to loosen my leg muscles from the top down, I may make some real progress with my neuropathy - only a guess.

I feel this is really important since the new treatment (starting in 2 weeks) will start the muscle wasting all over again. In preparation, I've been back at the gym daily for over a month and I hope to continue through treatment if I can possibly handle it.

I realize from your Posts, you've had a miserable time with neuropathy. Your situation, may be very different than mine, making my suggestions less viable but just wanted pass on my thoughts.

Find a good GP - getting access to low dose (5mg per) oxycodone should be easy enough to do. My GP and pharmacist monitor me for my safety but they clearly understand my cancer and meds side effect make my use totally justified.

posted August 26, 2023
A MyMyelomaTeam Member

I take .25 morphine twice a day and pregabelin ( like Lyrica) twice a day. My life would be living misery without my pain meds. Marcia 🌷

posted August 25, 2023
A MyMyelomaTeam Member

I haven’t experienced a lot of pain, but when I do, I ask my doctor. I normally take Tylenol.

posted August 25, 2023

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