Many Fibromyalgia sufferers have days where they can’t bear to have someone touch them. The other day, Polly came into my office and started to put her hand on my shoulder. I barked, DON’T! Polly knows when I say this that I am having a “please don’t touch me” day.
Most days, the nerves in my skin are quite sensitive. This sensitivity is part of the problem I have with chronic pain. I hurt everywhere, from head to toe. It has been over a decade since I have had a day where I could say, I feel pretty good today. Fibromyalgia primarily affects the muscles. I also have osteoarthritis, along with chronic low back pain. Fibromyalgia+osteoarthritis+back pain+nerve pain=unrelenting chronic pain. Fibromyalgia+osteoarthritis+back pain+nerve pain+narcotic pain medication+muscle relaxers=less unrelenting chronic pain.
As anyone who lives with chronic pain can tell you, pain medications do not make the pain go away. They lessen the pain spikes and provide a break in the pain cycle. When normally healthy people take narcotics to alleviate pain, they often feel a buzz from the drug. Some people become quite loopy. That’s not how it is for people who are on a long-term pain management regimen (as I have been for over fifteen years). Unless the chronic pain sufferer takes narcotics like Dr. House — by the handfuls — it is unlikely that they will feel a buzz or become loopy. They will feel a lessening of the pain, a break in the pain cycle, but otherwise, they will be as normal as normal is for them.
On “please, don’t touch me” days, the pain medications don’t work like they normally do. I am unsure as to the physical reason for this, but I know that I can double my pain medication on a “don’t touch me” day and it has little effect. I just have to tough it out, knowing that the next day will be maybe, I hope so, likely better.
This past Friday, Saturday, and Sunday, I worked in the office, took care of some remodeling projects, cleaned house, and trimmed trees and bushes. I worked far longer and harder than I should have, but since I am unwilling or unable to stop doing so, I must live with the consequences. And, boy, oh boy, do the consequences roll in like a freight train! Today, and probably several more days thereafter, I will have to contened with pervasive, unrelenting nerve pain. I am definitely in a “don’t touch me” phase of life.
Why I am telling you this? Perhaps you know someone who lives with chronic pain. If so, perhaps this post will give you a little insight into what they might be going through. Perhaps you have seen them grimace when someone touches or bumps into them. They might be having a “please, don’t touch me” day. If they are anything like me, they will endure the pain for the sake of not appearing crabby or difficult. Chronic pain sufferers want to be seen as “normal”, and often they will silently endure the pain unintentionally inflicted on them by others.
People who know me well will generally ask how I am doing before hugging me or shaking my hand. (COVID-19 has lessened such close encounters.) Some friends and family members know how to read my face. As much as I try to hide the pain, it reveals itself in my face and eyes. I normally have sparkling blue eyes, but when I am in a lot of pain, depressed, or physically having a difficult day, my eyes will turn gray. I don’t know WHY my eye color changes, I just know it does.
Bruce Gerencser, 67, lives in rural Northwest Ohio with his wife of 46 years. He and his wife have six grown children and thirteen grandchildren. Bruce pastored Evangelical churches for twenty-five years in Ohio, Texas, and Michigan. Bruce left the ministry in 2005, and in 2008 he left Christianity. Bruce is now a humanist and an atheist.
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Bruce, I wish you more good days than bad.
I had no concept of nerve pain until about one year ago when my wrists felt weak after a long work week. The symptoms progressed to ‘electric pain’ shooing from my elbows into my finger tips. It’s the worst pain by far because regular pain meds don’t help much. I’ve been diagnosed with bi-lateral cubital tunnel and had my right ulnar nerve transposed. Nerves heal very, very slowly so my hand and wrist are still weak at times. February 14th I have the same procedure on my left elbow and I’m looking forward to putting all the nerve pain in the past.
Good to hear from you Ashley and thanks for the kind words!
Oh Bruce…in some ways you are challenging the pain more than me. You go to more places etc. which is good. In winter, I just want to stay inside.
Sometimes my husband will poke me a little bit and it really hurts. I don’t want anyone to touch me when my skin itches and burns. A LOT of that went away with the spinal fusion, but not all. No, not all. Of course that affects our intimate lives. Your overall pain symptoms sound worse than mine, although when I have those pain episodes lasting a week to several weeks, it’s probably similar. I can also tell when a virus has got me (after the fact) because my jaw will start to kill me. It’s usually where the worst pain starts.
Right now my total fatigue is the biggest problem, which is good and bad. Good because I’m not suffering much, bad because I can’t do much.
Anyway Bruce, I was wincing when I read about your pain. I swear, I hate that other people suffer pain!! I would take all my son’s fibromyalgia pain if it would make him normal. Of course, life doesn’t work like that. And it was easier when I believed that God was in perfect control. Instead of comforting myself with “God works all things to the good” I’m now saying, “Dammit, I’ve had enough fibro for good. Isn’t it time for it to end?”
Thanks, Becky.
Do you try massages? Even once a month for an hour feels good. Because today was my birthday I went for an hour and a half. 🙂
You always amaze me when you share things, either I learned something weird/wrong with Christianity and today chronic pain. My fibro is screaming today. I took a nasty tumble yesterday because my knees aren’t working and whacked my head. I have never met anyone else whose eyes change color with pain. I typically have dark brown eyes when I’m in a lot of pain/under a great deal of stress my eyes turn gold, the lighter the color the color of my eyes, the worse the pain. For me don’t t touch me days are comparable to having a bad sunburn that someone rubs with sand paper. Spring is the season of pain I dread most, I can’t use my hands, and everything is misery. I know they are going to figure out why fibro happens, I just wish they would get on it already. Hope it isn’t a pain day for you today!
Thanks, Lara.
So sorry for your pain Bruce. I do empathize. <3
The other day I made the mistake of extending my hand for a hand shake. As my routine injections where off, I can't stretch my arm fully out; it's more at a 65 degree angle. But, i guess that wasn't noticeable enough the other day. Also my hands and wrists get weaker and more tender. I didn't have on my wrist braces, so the other person could not visibly notice my disability. Anyway, I survived the shake and reminded myself to not do that again. lol
The one thing I can do where I feel "normal" is ride my bike (which sounds so ironic with the widespread nerve damage I manage). I'm not recommending that for you or anyone…my point is…I "feel normal" when I ride my bike. One reason I like riding it; I feel confident.
(Typing that brings tears to my eyes. One of the biggest struggles I've had in accepting my disability is working through the feeling of being “abnormal” in social settings. I have recognized that at those times, I feel more like an object to be maneuvered around, than a person. I wrote about that
here. )
Thank you for sharing Bruce.
<3
Bruce, I just now noticed that this post must be a repost from 2015. Sorry I didn’t see that before!
Still I know the challenges remain and my sentiments are the same. <3
I also notice I spelled wear, where.
That's a new one for me! lol
That’s okay, I rotate old posts and put them on the front page. I WANT people to comment. ??
What I hate are the people who insist a good massage will make me feel better. I can barely stand it when my cat steps on me, and she is skinny. They have no idea how sensitive fibro sufferers are to touch. One good thing about the pandemic: I have asthma and cough and sniffle a lot. No one wants to be near me, which is just fine. I hate being touched.
An irritant, especially now that there is the stress of the pandemic, economic anxiety, and a narcissistic president, is when if Bob asks me how I am. How am I? I ask Henry (both me and Henry have fibro) and he also answers, “All right. Okay.” Except neither one of us is ever okay. If I tell Bob the truth, he can’t handle it too much due to what he is dealing with. So then it’s “Oh, I didn’t get enough sleep” or “Ok, I think I can do a little biking.” I’m weaker than I was a decade ago, due to numerous surgeries that did have to be done, but they take a toll.
Anyway, Henry and I take slightly different meds, as his fibro is worse than mine (albeit he doesn’t have osteoarthritis like I do). Those are daily. Then we supplement with a strong legal (for now) herb. And I can have 2 days and one of those days, my meds will help, and the next, like Bruce mentioned for himself, the drugs don’t do as much. I do also use lots of other things like massage, heat, spine rollers, and TENS units. I don’t do chiropractic anymore, as I had my neck muscles fused.
Bruce, I’m sure sorry that you have to go through this. I just hate that others suffer with it.
I have fibro, largely driven by chronic stress and many decades of insomnia and very poor sleep. Have gone down the SSRI/SNRI path when things take a turn for the worse, with duloxetine the most useful, but currently off all prescription meds because of side effects.
Currently going for a “keep it simple” strategy – a relaxed walk to and from work every day, half an hour of mindfulness meditation in the evening, and being out in the garden as much as possible. The most frustrating thing about FM is that it makes it hard to push through on physically demanding projects, which means that the projects stay on my to-do list, which increases frustration and mental stress. It does make me less likely to jump into new projects, though, which in the long run will simplify things as things get taken off the table.
It is hard not to know what to do. Worse, to know there is likely nothing that can be done.
We live in a society that wants, and is used to getting, cures. Preferably easy answers, silver bullets, a pill that cures. That was what the hydroxychloroquine was supposed to be. Trump’s way of thinking is that while HCQ was not a cure it was a foil for his positive thinking, which is cure for everything.
Failing an outright cure we expect treatment. A way to make the problem not show up on our radar. Take a pill and it is just like not having the disease. Old people dying from COVID-19? Don’t test, blame preexisting issues, deny and ignore them. If a tree falls in the forest and nobody is there to hear it …
Of course we can deny the unpleasantness of the pain of others by blaming the victim. Doesn’t do a thing for your pain but it reassures us, we of course never do anything to bring on our suffering which is why we aren’t in pain, and comforts us that we live in a just world where only those deserving pain feel pain. It also alleviates any need to treat or understand your pain. You probably hear this a lot. If you weren’t …
I don’t have any cure, or even any reliable treatment. Of course, try the usual alternatives: heat/cold, alcohol, meditation, medical marijuana, music …
All, in moderation, are worth a try. Perhaps one or more will serve to take the edge off.
When none of that works all I can offer is understanding, empathy, reassurance that you are not alone, and a wish that you feel better.
Hang tough. Don’t let the bastards get you down.
Good morning Bruce and Polly. I think about my own pain situations a lot, some from disease and others from injury, and recently I thought, it’s time for a passport. I never bothered to get one when they were easier to buy. Now I’m gonna. Brian had mentioned using cooked buds, up there in Canada. So, I’m wondering if you have them yourselves ? Are you up for trips to a dispensary on the border for a few days, so that you can try it in savory foods, or in smoking it, or using the oil on the body parts in question ? Having a passport is now being suggested a lot these days. I’m really motivated to go ahead with that goal. Also, in the list of modern countries and quality of medical care and doctors, America ranks very low, shockingly so. International insurance is also something to look into for my future use. I have friends who are from Scandinavia and are preparing to get out. They want to carry me away with them.
Americans aren’t allowed in Canada for leisure travel. It’s mostly truck drivers delivering cargo. Here is the list: https://www.cnn.com/travel/article/us-international-travel-covid-19/index.html