The every day pain roller coaster

Hello friends and family! I need your help.

Every morning, when I wake up ( some of you know this ) I feel so horrible, that I feel like dying, and I think I can not keep going anymore.

I know it is a lot about my high levels of chronic pain, but I don’t know if there are also withdrawals or medication side effects, or my body just giving out after bad sleep nights, my 36 years of HIV surviving, and my history of cancer, I don’t know!

Then, usually- almost every day, I mean it - after a few hours, after taking my morning medications, about 2PM or so, my body and mind feel more balance, enough to do things on and off.

I then have during the evening especially a very happy almost no pain hour with lots of energy, when I do everything I can to catch up with life. And for that, I’m incredibly thankful to the universe.

It was important for me to write this because it gives me an eye view of my everyday life.

I had talked to my doctor, and we keep trying things, but is there anybody else out there who has similar experiences? Ideas? Explanations? I have to keep exploring options to have a better life.

Otherwise, I am thankful for what I have, I am incredibly lucky to be here.

LOVE YOU!

[
Jesus Heberto Guillen Solis

founder of the HIV LONG TERM SURVIVORS International network and simply a human.

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You’re on opiates, right? Are you familiar with ketamine treatments to restore opiate sensitivity? I had to find this out on my own. My doctors would prescribe more pain medicine when my pain increased. They didn’t understand that I was building up a tolerance to the opiates. My pain was worsening. Their solution was to double or quadruple my opiate dose. I don’t do that anymore. The ketamine treatments enable me to stay on the lowest dose of methadone for extensive bone cancer.
Wishing you success as you seek relief from pain.

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Ronda, is this treatment medically accepted in the present? wow, yes, I never heard of it, only in people who use it for pleasure. THANKS SO MUCH! I’ll find out more about it, and ask my doctor too. LOVE.

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AH! and Yes, I’ve been taking OXICONTIN and NORCO as needed.

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Yes, it is a recognized treatment and pain specialists know about it. Ketamine is used for pain control during surgery and also used to treat depression. I think it’s overused for depression. I’m explaining this, because if you mention ketamine to your doctor, the doctor may know about the overuse of ketamine and not know about this particular use.
My treatment was a one-time session. I’ve had it done twice, by the pain specialist at my oncology center. Here is a research paper that describes more. My pain doctor said that in some extreme cases, people need treatment once every 6 weeks. I’ve gotten 16+ months out of each treatment.
I was able to go back to my regular dose of pain medicine the next day.
I’ve had the least amount of side effects and tolerance build up, and the best pain management, with methadone.
https://www.jpsmjournal.com/article/S0885-3924(03)00047-2/pdf

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Thank you so so much!

do you walk much? I find a two-hour bird-watching stroll before breakfast sets the tone for my day. I’ve had a massive stroke as well asbeast and cervical cancer. Can you imsgine: I have friend who don’t walk more than a few blocks in a mo th. Why don’t their libs rot off from disuse?

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I have horrible chronic intractable pain that we are trying various procedures, treatments, etc. In the meantime I take opiates, Gabapentin, etc.
on July 15, 2020 my PCP told me to go to Northwestern ER here in Chicago.
I was given IV Ketamine.

I had a NEAR DEATH EXPERIENCE, which I am still trying to process. I was told I had a severe adverse reaction to ketamine Immediately after only a few drops in my IV.
I guess I will not be trying that ever again!!!

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Thanks Christine, it is just a reminder to myself and others, of who something works for one person, and for others can be a huge mistake. Still, is about trying options…sadly, if the health team is not checking well can put our lives in danger.