For 20 years now I've had unexplained chronic pain in my upper body. It's been there when the autoimmune stuff is flared up, and it's been there when it's not, even when all my "lupus tests" are negative.
(Note: there's really no such thing as a specific "lupus test," but there are tests that show antibodies that are loosely linked to lupus and used as one part of deciding on a lupus diagnosis. You can have lupus even though your tests appear normal, and you can have abnormal tests and not have lupus... so they aren't the be-all and end-all for diagnosis. However, in my case, when I've been very sick, my tests were very abnormal- so, for me, a bad test just confirmed what we already knew- the lupus/autoimmune stuff was in high gear.)
But let's get back to the issue at hand: chronic pain that has no explanation. I've tried everything under the sun to eliminate this pain.
- Chiropractic. Went 3 days a week for a month, and the pain always returned within a few hours. He told me my neck was out of alignment, but the adjustments only made me feel better for such a short period of time.
- Acupuncture. helpful for other things, but not so much the shoulder pain. Still, no real explanation for the pain.
- "regular" medicine (rhuematologists, neurologists, GP, etc). Here I got drugs (advil, Aleve, aspirin, Saulsalate, percocet, vicodin) and pain creams and patches (biofreeze, icy hot, arnica, salonpas) (I'm sure I'm forgetting some- I've been at this for 20 years...). Sometimes I've taken so much percocet it made me hypothermic (because of all the tylenol in it), and the pain was... still there. And not to mention the constipation. Oh, I just mentioned it, didn't I? And of course, no closer to knowing why I was in pain. I just used the drugs to help manage it.
- a TENS unit (electrical stimulation). I also used this for much longer periods than suggested. Gave some relief, but only while it was on. And still no explanation for the pain.
- Heating pads and ice packs.
- Massage. this actually really helped- if i could get massage every DAY! Maybe if I were super rich and famous... Which led me to think ... muscle tension is behind this. But why so much tension?
-Physical therapy. Did this for 6 months. Thought I had found the "source" of pain- tendinitis in my right arm. So we worked on that for 6 months, 2-3 times a week. Every session, I got heat for 10 minutes, then massage for 10 minutes, then exercise for 15-20 minutes, then ice for 10 minutes. Sometimes I couldn't make it to an appointment because I was out of town, but I would continue to do my exercises at home/ on the road. But the pain would return. So... the exercises were not eliminating the pain. And I would heat and ice myself. Not enough. Clearly it was the frequent massage keeping things under control. That's what I learned from 6 months in PT. Something I kinda already knew- massage helps me more than anything. Unfortunately, the amount of massage it takes for me to be pain-free (3 times a week) is more than I have time or money for. But I did still want to get some massage, even if I can't go 3 times a week.
Sidebar: having the diagnosis "tendinitis" still doesn't give an explanation as to where the pain came from. It's just another label for my problems, but it doesn't tell me WHY I'm in pain. I was also told I had "adhesions," those things I call "crunchies" in my shoulder and back muscles, that feel like big lumps of salt that I can break up and dissolve if I work at it, or have someone else work at it (massage). OK, I have a new word: adhesions. But WHY do I have adhesions? It's kind of that circular logic: Why do I feel like crap? Because you're you're sick. Why am I sick? Because that's the label we give you when you feel like crap. Wow, thanks. What do I owe you for this bit of wisdom?
While my "why?" remained unanswered, I at least had a "how"- as in, how to get some relief: massage. I made numerous attempts to find a decent massage therapist (FYI, in New Jersey, you don't have to be licensed! Any schmo can put up a sign and sell massages!). Massage has become very popular around here as a business with people who just arrived here from China and the only English they know is "30 or 60 minute?" and "cash or credit card?" I had some AWFUL massages. One was so pointy, I think all she used were her thumbs. It felt like I was being walked on by a 30-pound cat wearing high heels. Now I know why they made me pay in advance.
Finally, I found Massage Envy, a national chain, and all their therapists are licensed and speak great English. Why do I care if they speak English? Because I need to tell them not to work on my upper arms because they bruise, but work hard on my back, and please don't yank down my underwear and leave my butt flapping in the breeze. Furthermore, I would prefer that you not get on the table and straddle me to get at my back muscles... especially while my butt is flapping in the breeze... etc."
Also, at Massage Envy, sometimes you get someone like my new favorite person, Michelle, who has further qualifications and works in physical therapy. She, after 20 years of no answers, traced the pain in my shoulders and arms to my neck. My neck doesn't bother me, but as she worked on it, I felt "referred pain" in my arms. Ah, so the pain in my arms is starting in my neck. Getting warmer. (For all this time, I've been wanting to get to the bottom of this, to know where the pain was coming from, and to put an end to it!)
"So this is starting in the neck- why is my neck so tight?" I asked myself and the universe. for starters, I've been watching TV from a loveseat that is at a 90 degree angle from the TV. So, I watch with my neck turned. I stopped that. I didn't notice huge improvements, but there's certainly no argument to be made in favor of such a habit.
Then, one night I was watching TV and in the dialogue someone said to their coworker "Are you a clencher? I can see you're a clencher." Meaning, do you clench your jaw habitually? Why yes I do. I already know I'm a tooth grinder when I'm asleep, but I've also noticed that if I open my jaw throughout the day it makes this awful crunching sound like someone crinkling plastic bags. If I wiggle my jaw around a bit, it will loosen up and stop making that sound.
So for the last few days I've been checking my jaw every 15-20 minutes and loosening it back up until it stops "crunching." And maybe it's coincidence, but I didn't need any pain meds last night. No percocet, no advil, not even aspirin. No pain creams, no heating pad, no TENS unit, no asking my husband to rub my shoulders to get the "crunchies" (adhesions) out. Could it be my healing answer came to me in the form of a rerun episode of "Crossing Jordan?" Well, it *is* a detective show...
I hope to report back to you in a week, a month and a year to say, "oh yes, that's all behind me now. I'm clench-free and pain-free still! Can you believe I suffered for 20 years and no one ever said 'Hey! unclench your jaw!'"
Here's something that backs up my theory of where my pain really comes from"When teeth are held together or the jaw is held tense over a period of time such as when concentrating, the facial and neck muscles become fatigued and painful. Morning and afternoon headaches, difficulty chewing, neck pain, and sore facial muscles are the most common reported symptoms. When clenching becomes chronic such as day and night, many severe muscle related symptoms can occur that can have dramatic effects on a patient's quality of life. This leads to a painful muscle condition called myofascial pain syndrome."from http://www.tmjtreatment.com.au/common_causes.htm
If you look up myofascial pain symdrome, it sounds a lot like fibromyalgia, something I was diagnosed with at one point.
I know a number of you who read this blog also experience chronic pain. It's draining. It saps you of energy, joy and sleep. If you suspect you're a chronic clencher, the only way to know is to unclench so you know what that feels like, because clenched feels "normal" to you.try it- open your jaw wide (don't force it), like a surprised ventriloquist dummy and see if you hear any "crunching" or feel any resistance when you do it.
If something here resonated with you, maybe you are a clencher too. Are you? It's just a habit, and habits can be undone!
Well wishes and clench-free jaws- Carla
The Singing Patient: Author, Humorous Songwriter and Entertainer
"I am reading Carla's book How Can You NOT Laugh at a Time Like This? and loving it. I LOVE Carla's songwriting, so I'm not surprised that her prose writing is as smart, funny, and insightful as her music." - Christine Lavin