Ask your doctor or pain clinic

@jesfactsmon @faithwalker007 Hank. Interesting questions. I am particularly interested in the latter as I have been prescribed some painkillers that according to the MME dosage scale I feel should leave me in no pain but it still is unbearable for many hours a day,
Especially the bottom of my feet. It is not even half of the MME scale but if I ask for more it would put me there. Renee, is this me being unable to handle pain appropriately? If I still feel pain is it appropriate to ask for me if it puts me at the halfway mark? I feel so very selfish and hope the myofascial release therapy will eventually cure it but even if it does it could take up to a year. Is 3-4 hours out of bed a day acceptance? I still feel my quality of life is so poor I cannot do more than wash dishes or make the bed on good days. Thanks so much for both of your wise opinions.

@faithwalker007
Renee, with a 40% pain reduction, what would you say your overall pain level is on a 1-10 scale? Just trying to quantify how much residual pain your meds, stimulator, etc. leave you with. Another question, more rhetorical, do you think one person can handle pain better than another person? Is there anything to what I used to hear about how some people are more "stoic" than others, meaning they do not feel the pain as much as another person might? Interested in your opinion. Best, Hank

Hank,
Women have twice if not more the pain receptors than men biologically. It’s not fair or right to ANYONE to compare themselves to how another handles a pain load. That will drive them into depression faster than a speeding bullet. DO NOT DO THAT TO YOURSELF AND YOUR LOVED ONES.
As for me? I spend most of my day in my recliner, the equivalent to my bed. I spend 40% of my day (on a good day) doing things around the house that will help my husband and me be productive. I organize my craft room, paint, wipe down the kitchen and clean the kitchen IF it’s not overwhelming. I even groom my service dog! Not all of these and definitely not at once.
I spend time with my hubby and play with our dog who is painfully neglected by me on my down days.
This is my life and I have compensated not BECAUSE of the pain but in spite of it.
Pain does not control me. I live my life anyway and I’m happy. I breathe through it and have learned that it is another feature of me that people will either accept or not.
My quality of life is the defining factor and management of that factor affects it, yes.
Just like my seizures, migraines, and other diseases which I have affect it.
But they don’t DEFINE OR CONTROL who I am. I am Renee, child of God, wife of James, mother of Sean, and warrior.
That is who I have always been and will continue to be.
Please, people, don’t let an indicator, something your body is using to try to help you, overwhelm you into taking your purpose for life away.

Hank, my overall pain on a 1-10 scale depends on the day but for two hours of the day it rests at 6. As I told my pain specialist, it then climbs to a 7/8, I take my meds, it dives back to 6, four hours later it climbs to a 7/8 and stays there even with pain meds. By night fall I’m around a 8/9. I take my next long term pain med so I can try to sleep but by then I’m in so much pain, sleep is impossible. I take my next pain meds and I finally doze about 3am only to wake around 6 or 8am and start the day again!

Hank,
Women have twice if not more the pain receptors than men biologically. It’s not fair or right to ANYONE to compare themselves to how another handles a pain load. That will drive them into depression faster than a speeding bullet. DO NOT DO THAT TO YOURSELF AND YOUR LOVED ONES.
As for me? I spend most of my day in my recliner, the equivalent to my bed. I spend 40% of my day (on a good day) doing things around the house that will help my husband and me be productive. I organize my craft room, paint, wipe down the kitchen and clean the kitchen IF it’s not overwhelming. I even groom my service dog! Not all of these and definitely not at once.
I spend time with my hubby and play with our dog who is painfully neglected by me on my down days.
This is my life and I have compensated not BECAUSE of the pain but in spite of it.
Pain does not control me. I live my life anyway and I’m happy. I breathe through it and have learned that it is another feature of me that people will either accept or not.
My quality of life is the defining factor and management of that factor affects it, yes.
Just like my seizures, migraines, and other diseases which I have affect it.
But they don’t DEFINE OR CONTROL who I am. I am Renee, child of God, wife of James, mother of Sean, and warrior.
That is who I have always been and will continue to be.
Please, people, don’t let an indicator, something your body is using to try to help you, overwhelm you into taking your purpose for life away.

@faithwalker007 Renee I love the words you wrote.

Every time I am asked my pain level I cringe... a chart number just does not put it in perspective. You have the overall pain and then a specific area pain. .. shoulder, back, knee, foot, hand, abdominal, etc. How much do you let that pain take you over. ..

I do not like taking an opiate. I cannot take nsaids nor other meds for pain. I had to up the dosage earlier this year for some thumb surgery. I asked my doctor to lower the number of pills back down and here I am two months later asking him to up the number again. I am having another body issue. I am getting an injection on Monday that will hopefully calm the pain.

Friends tell me I am so strong and so brave. I feel weak and like I am drowning at times. At those times I say some fervent prayers to help me get through them and take one moment at a time. I try to distract myself from pain by occupying my mind with other things. Crochet usually is my go-to, but the surgery earlier this year was for my thumb. My thumb is only up to small amounts of the activity. So puzzles and games on my tablet. I cannot concentrate on novels, so short times reading scriptures, short stories and poems.

My husband starts telling doctors that I can tolerate more pain than he ever could. I tell him to hush up. I see him go through pain daily.. that I could not handle. He is no weaker nor stronger than I when it comes to pain. We all handle pain in our own way. Lately pain has slowed us both. We went for a drive last week. It was painful on our bodies.. but oh the good it did our souls!!

Always put Joy in your life so you will have Happiness in your soul.

ZeeGee

@fourof5zs @faithwalker007 The responses from you both echo how I feel. My sister tells me at times how strong I am, how brave I am. Chronic pain is something I have lived with for decades, and I don't have any choice except to work through it in order to survive. Each person is different, each person handles their pain levels in different ways, and each person respects or not how it affects us. For myself I cannot allow the pain to define who I am. Some days are good some days are bad, and I can't look at a calendar in forecast what pain level will be any day. Just as ZeeGee said, how can you say a single number for your overall pain level on a day? I usually stall and say what part of my body are you talking about! I applaud each of us, for researching what may help us, sharing our discoveries, and persevering through it all.
Ginger

I agree with the incredible difficulty of picking a number... any number to describe your current pain level.
It comes down to speaking the same language.
For example, the Lakota (Sioux) word for horse is šúŋkawakȟáŋ which means “big dog.” When the Spaniards brought horses to the Great Plains and introduced them to the Sioux, they had no word for the animal. So they simply used what they already had in their own language and knew and described the new animal that way.
Those Indians who understood Spanish and could speak to the Spaniards in their own tongue did so and translated for the Chiefs and Healing Men to facilitate trade and treaties when possible.

That is what we need to do during these almost impossible times of acquiring much needed pain management due to roadblocks and antagonisms from the government.

Learning the FIRST language of our adversaries and/or reluctant PCPs and Pain Specialists is the most effective way to communicate with them. Alternatively, using your own language but in translated, altered form so whomever you are targeting UNDERSTANDS what you are trying to ask or explain on their level, of sophistication or education without confusion or question.

It is wise to remember that you are the patient and the person who is TECHNICALLY in control of your healthcare. You are the guide and source of care. You pay his bills.
However, your PCP or Pain Specialist is the one in the driver seat. He is who drives the care to more or less relief with your guidance and direction and most of all, honesty.

Speaking their language works. Showing your pain and life struggles work. Don’t get dramatic or “freely.”
Be matter of fact, detailed, and specific with markers they can track and measure. Information they can chart and evaluate.

That is what they understand. It’s not that they are cold and unfeeling. Providers are taught to measure, evaluate, and treat.

@faithwalker007 @fourof5zs
Linda and I use the number system as a way for her to tell me to what degree she is suffering at any given time. Its subjective of course. It does not quantify the pain itself, just how bad her experience of the pain is at that moment. I know for example that when she is at what she calls a 4, she generally has more energy, appears like she is suffering less, and that is in fact what she tells me. I almost don't need to ask her her level when it's an 8 or 9. Its obvious just by looking at her body language and her face. It's not a perfect method, but it is a rough way for her to communicate to me how her pain is affecting her in the moment.

@jesfactsmon @faithwalker Hi Hank and Renee, as far as using numbers to describe pain level, I have reversed that, and now try to estimate my current "comfort level." I use 1-10 as percentages, and I will say, well, today, I feel a number 6, or a 60% comfort level. I used that example because I rarely feel better than a 60% comfort level. Today, I am at about a 70% comfort level, and I have no idea why. Yesterday, I swear, all day, I was at a .001 % comfort level, and just prayed for death all day. There really is no rhyme or reason for my nerves acting the way they do. I can't figure them out any more. I only know if I had a day like yesterday, today, I would probably have called 911, and told them to dope me up with whatever they could to block pain, if it even exsists. Now, today, not so bad. Go figure. I think maybe God is watching over today, as I was in an utter state of despair. Who knows. I give up. LoriRenee1