This post was inspired by a fellow scleroderma patient on Twitter. Thank you @MS_Crest!
Dear Scleroderma, Please stop messing with my friends.
Okay, so that “love” note is entirely ineffective, but I must admit that that note is a giant improvement of how I communicate with the scleroderma that insists on attacking my body. Yes, I do talk to all of the diseases of my body as if they are separate entities. I do that because I once thought of myself as scleroderma, and treating scleroderma & sarcoidosis as unwanted house guests just feels good. So, about that transient or inconsistent unexplainable pain…
Transient pain is where the pain feels like it’s shooting or moving. Inconsistent can be many things, but I will define it for our purposes here as: Pain that shows up out of the blue. One day its your hand, another day it’s your wrist and then you feel pain somewhere else. The funny thing about inconsistent pain from my own personal experience is that it’s not that one pain goes away and another pops up. No, we would be expecting that.
Allow me to give you an example of what I call, inconsistent pain.
Two days away from a routine follow up with your rheumatologist, your left hand hurts. Not just your whole hand, the pain is in your palm. It feels like their isn’t enough room inside your hand for your bones. You take whatever is prescribed by your doctor and the pain persists. Then you wake up in the morning and your wrist hurts on your right hand. Here is where this gets weird: It’s not that the pain went away in your left hand, it’s just that the pain in your right wrist is worse than the pain in your left hand. The next day is your doctor’s appointment and you can’t wait to tell your doctor about your wrist and your hand and because there is actually pain present. Your doctor mihjt be able to see what’s going on, so you go to bed that night in pain, but a little reassured because you have something to tell your doctor that’s new and help clue him/her to what course of treatment to take. You go to sleep, with the aid of pain medicine and look forward to some information from your doctor. And yes, it is normal to feel like you are part of the mystery solving team of Scooby Doo and friends.
Unexplainable pain. Now, I’m just going to get freaky on you.
You wake up the next morning and the heels of your feet are in excruciating pain. You have trouble walking barefoot on hard floors. It hurts with every step and pain medicine is as effective as Tic-Tacs at this point. You manage to get yourself to the doctor. You see him/her and discuss your feet. He makes arrangements to get you wedge pillow or advises you to go purchase one so you cam sleep with your feet elevated. What may have happened is that just the simple weight of your own feet put enough pressure on your heels to decrease blood flow to your heels, leaving the tissue in your feet sensitive to every movement of every cell in your foot. (Cut to cheerleader yelling, “Goooo Feet!”)
Other good times with scleroderma.
You leave the doctor’s office relieved there may be a simple solution to your foot problem. Then you get behind the wheel of The Mystery Machine in 38 degree weather and remember the pain in your hand and wrist. Disaster, right? Time to panic? NO. You go back into the office or call as soon as you get home. Let the receptionist know you forgot about your other issues. If you happen to be in the office, ask if you can see the doctor after the patient he/she is seeing already for just a quick question, or ask her to leave the doctor a note about your hand and wrist. Then if you do not hear from your doctor’s office by the end of the business day, call your doctor’s office the next morning to follow up or do “the pop in”. I have done “the pop in” on severe occasions. If you do the pop in, just remember you will most likely not see the doctor or will have to wait to see the doctor if it’s even possible. You will most likely pick up a referral for an x-ray, MRI or OT, which will be very helpful.
Speaking of Occupational Therapists…
If you feel your hands, wrists, elbows or feet are changing because of scleroderma, anytime is a good time to ask to be referred to an occupational therapist. Occupational therapists will annoy you at times because they will give you exercises to do consistently. Make the exercises a part of your daily routine. We can’t always stop a freight train, but it is possible to slow it down enough so that it feels like it has stopped. And if you are able to keep your range of motion through exercise, don’t let that lull you into a false sense of security that you may stop those exercises, especially if you are experiencing symptoms of depression. Depression and loss of mobility will feed each other- and that’s a whole other post.
Put the hammer down and step away.
So, your body will have pain in different places at the same time. It’s confusing, like treating a headache by hitting your toe wth a hammer. Your toe hurts like hell, but your headache is gone. Then when your toe feels better, the headache comes back. You think it;s a plot. It probably is on a cellular level. Mitochondria gone mad. There is no way of knowing and the idea of a plot could distract you from your pain. Be creative and let your freak flag fly.
Does Scleroderma have you confused? This video won’t help with that, but you will learn what the show “Soap” is. This is very useful if you find yourself playing TV trivia. Never underestimate the power of useless trivia. I’m a helper and you are welcome. Confused? You won’t be after this episode of Soap