I am fairly new on the RA front. And whereas a lot of the time, I feel I don't have enough to speak on or about, I think when it comes to managing pain, I've got enough to go on.
Pain was the first indication that something was wrong(before diagnosis). Ache was more like it. A dull achy feeling all over that wouldn't rest or let me rest. It was terribly obvious at night when I would try to sleep. I was in a lot of pain. After being told it could be Restless Leg Syndrome, among other things I disagreed with, my primary care doctor finally relented and prescribed Prednisone. Relief was almost immediate. I could sleep. I could get out of bed and put my feet to the floor. There was no more cane. I was referred to a Rheumatologist.
In my medicine cabinet was already an arsenal of pain relief. Prior to all of this, I RARELY took any that were prescribed for me. Not for knee surgery, gall bladder removal, tooth extraction, etc. MAYBE, the first day, but after...nope. RA, however, this was constant, relentless PAIN. I have a family with small children. We are active and I want to be present and involved.
My primary doctors has already given me 800mg of Motrin, but because if issues with my kidneys, I couldn't take that any more. He then prescribed Vicodin. I was terrified to take it because I heard that this is the stuff that moms get addicted to all the time. How? I am not sure. Because, it knocks me out! I started taking it maybe once a week at bedtime and promised myself I wouldn't take it any more that 2-3 times per week. My husband told me that ten minutes after taking it, I would let out this sigh and that he could actually see my whole body drop in relaxation. I was really sleeping. That little pill took the edge off enough so I could sleep. That hadn't happened in over a year. It was obvious that my body needed the rest. So I began taking the pill every night.
When it was time for a refill (6 months after the original fill date!), I was so nervous to ask. I was afraid the doctor was going to think I was an addict. This time, I asked my rheumy to fill it. He did. And I have been taking it for the past few months, at bedtime. At my last visit, he mentioned to me that I should try to skip some nights. I wanted to take his head off and defend myself.
I don't like taking all this crap. We are all on some sort of cocktail to keep this disease at bay. I went from taking a birth control pill (one pill!) at night, to...I am not even going to mention what I take in a day. Trust me doc, I wouldn't take it if I didn't need it! AND! For the record, doc, I have taken it upon myself in the past to adjust my steroids, when needed. I did that because you failed to recognize my desire to be with my family and FUNCTIONING on a camping trip(s). If I had a penny for every time in these past couple of years I have said to the doctors, "Do you have children?? Do you have any idea what this is like?" Two did not (one until recently) and one did, but the memory of how taxing being a mommy/parent can be seemed to be lost.
I was stunned to hear that there are docs who do not discuss or offer pain relief. STUNNED! Really? Everything that I read and hear talks of the pain of RA. I am fortunate that I was given something(even though at first it wasn't for RA). Lord knows, back then, I would have never asked. Pain is present almost always. Even at that, I sometimes realize how much I block out, or try to. It is evident in my short temper and difficulty speaking...and extreme fatigue (which is another topic that should be explored!). I have yet to figure out what to do about daily pain.
I have to admit, I am less than thrilled with my rheumatologist. I often walk out feeling like I haven't been heard. I know that sometimes, it is a wait and see. Why should I have to remind him how long I have been waiting and seeing? Why do I have to remind him that I have lost 2 precious years with my children? Sure, I am here, but not down in the dirt, hiking through our woods with them. They notice. They know that mommy hurts. Why should I be afraid to ask for more? More relief? For a documented painful disease? Why should anybody?
No. My pain is NOT under control. I am thankful for the ability to sleep. But what I would really like is the ability to move through the day. To kneel down and tend to my gardens and kiss a boo-boo. To navigate the stairs to get the laundry done. To clasp my own bra. Yes, Dr. ______, the inflammation is down. Yes, my joints don't feel as squishy. But I hurt. What are we going to do about that? What? You want to try weaning me off the steroids, again? Fine. But what are we going to do about the pain? And suddenly, I am at the receptionist desk making my next appointment, walking to the car and understanding that I am exactly where I was when I drove in this morning. I realize this as I grip the steering wheel and my less swollen, no squishy joints scream at me. I am in pain. And there never seems to be a plan for pain.
RA pain is real. And so are the lives that we are living or not living. Primary care doctors are generally not equipped to deal with the effects of RA, or don't want to. It is confusing to be between two doctors, hoping that one will recognize and hear, really hear, what is happening. What I would give to hear, just once, "lets get you comfortable". And to know that there is real effort and concern behind it. Not just when I am in your face. While I would never wish this on anyone, I wouldn't mind if the docs spent just one day...in our shoes.