Ah youth. Where did you go, youth??
My Battle with Chronic Pain Part III: The Pain Returns
It reminds me of that song: “The cat came back the very next day; it just couldn’t stay away.”
Life was going well, and I was on cloud NINE, being finished with my very first year of home schooling! Wahoo! Summer! I made big plans.
But why wouldn’t I? I was young and healthy. I should be able to handle a cross-country flight and a few short road trips. Right? And don’t give me the, “You just need to be more active,” talk because I was being active. The problem was all the sitting and riding!
It started with the plane, it worsened with each car trip, and I took several.
When I first arrived in Florida, Alan called me from home, “I made you a doctor’s appointment.”
“Why?” I asked. I hate doctor’s appointments, and I had been doing so well.
“For your back!”
“My back is better. I’m good, Alan, I don’t need a doctor.”
“Ehhh, I think you do. Let’s keep the appointment, and you’ll probably be glad you have it by the time you get home.”
Heh? Did my husband just do a little soothsaying? Was he saying that he knew I’d be back to hurting by the time I got home?
I shrugged it off. I enjoyed my vacation. He joined us. We took even more car trips in the South.
fun in the sun
And Alan was right. I was happy to go to the doctor by the time I got home. What is it with airplane and car rides??? I don’t think this is normal.
The doc was a super friendly chap. He offered me a shot for my shoulders to loosen them up. I declined. I’ll never forget seeing my mom get a shot for a similar shoulder problem. It hurt much worse before it felt better. No thanks. My shoulders are more stiff than they are painful, so I’m not that desperate yet.
The Physical Therapy Phase
He sent me to physical therapy for my hip.
I tend to lean towards my left when I sit to keep the pressure off my bad hip. That hip hurts bad when it flares up.
“Why are you sitting like that?” the physical therapist, Ryan, asked me.
I’m so dumb. I went straight into defensive mode instead of patient-being-helped-by-a-doctor mode.
“What? Like how?” I asked trying to straighten my posture.
“All cocked to one side.”
“I don’t know.” Yes, yes I do know. Why didn’t I just admit my hip hurt? That’s what I was there for, geesh.
Doctors are always asking me questions that are probably super obvious, but I haven’t thought about it. So two days later, bam! I always figure out the answer to their questions. And that is why I am so thankful for physical therapy.
Yes, they made me do stretches, exercises, taught me how to squat properly, etc., etc. But the biggest thing was that I finally began to learn what I had begun to truly want to know: What is wrong with me????
Ryan would work on an area, and I noticed that he knew the exact name for every single thing he worked on.
“That hurts bad. What is that?” I’d ask him.
“That’s a muscle.”
“What muscle is it?”
“That’s your tensor fasciae latae muscle. It’s a compensatory muscle.”
I learned that the tensor fasciae latae, and several other muscles become inflamed when the more essential core muscles are weak, but I also learned that those muscles tighten down when they are protecting something that’s injured underneath.
“Yow! What is that?” I have more angry muscles, tendons, and bursa than I had ever realized.
“That’s your iliotibial band. You’d be better off if I don’t work on that. You need to roll it at home with a rolling pin.”
He was right. He did work on it right before Christmas break, and every where he touched it there were little bitty bruises for a couple of weeks.
Physical therapy was fantastic. My favorite part, besides just being so happy to get out of my house, was the ice therapy at the end. They laid ice over my achy shoulder muscles and that evil iliotibial band, which is a tendon that runs down the right side of the thigh.
I was able to learn so much from my physical therapist because he was actually able to see me enough times to know the real deal about what was going on. The doctors, on the other hand, only have that one visit to go off, in which I answer all their questions wrong but realize what I should have said days later.
And then I finally had a lumbar MRI and a shoulder MRI. The verdict was in: not a single thing wrong with my spine. Ryan was right.
And the shoulder: tendonitis and torn muscles.
I asked to see a rheumatologist. I did this because I had done some research and came across a disease that sounded so much like me. Yep. I’m guilty. Self-diagnosis.
Enter the Rheumatology Phase
Now you want to talk about life-changing self-evaluation questions. My rheumatologist asks questions that I simply go blank on.
“How long does it hurt in the morning?”
Ummmm I never thought about it that way. Some days it does not ever go away. Some days I don’t hurt at all..
So I said, “I don’t know. Once I get going, I’m okay.”
I hated not knowing, and why have I never noticed? Then he asked me which is worse, morning or night?
I have no idea!
So I’m making a chart. It’s enlightening. Every day really is different.
So let me tell you what I think I might have (but of course I’m not a rheumatologist):
Psoriatic Arthritis: This disease is hallmarked by joint inflammation, which I have yet to be able to prove, except for tendonitis. Tendonitis is also part of PsA, though. So is nail psoriasis. You can read more about it here. (rheumatology.org link)
Was I right? We still aren’t sure, but we’re working on figuring it out. I could be dead wrong.
In fact, I had a rheumatology appointment this week. I do like my rheumatologist. He wasn’t convinced of the PsA. My blood work did not help me any, as it was free of any inflammatory markers. The day they did the blood work I felt pretty good. But he has ordered a hip MRI.
What is the deal with all the torn muscles, tendonitis, and bursitis (in both hips) if it isn’t psoriatic arthritis? That IT band syndrome that I have in my legs is called “runner’s knee”. Only I’m not running anymore, haven’t run since JD was born.
Over Christmas, I figured I’d get rid of all of this. I would just rest.
“Rest will fix it all,” I assured my parents, as I spent the entire vacation, practically, laying in bed. I literally could not sit down. The pain was even radiating into my pelvis bone, when I was lying in bed.
I love this photo by Janet. I literally woke up, rolled off my ice packs, posed for this picture, and went back to my ice packs.
My internet research assured me that rest is the way to fix tendonitis or bursitis.
Of course, that didn’t work. I finally went to urgent care and got a steroid shot.
The nurse practitioner assured me, “This will help, temporarily, but if you’ve had bursitis for three years, a steroid shot is not going to take care of it.”
It did help enough to get me through that plane ride, but returning to a wet California did not help. By Wednesday, I developed a terrible limp. It was so hard to walk.
And guess what, by Friday I could walk completely fine again. In fact, on Thursday and Friday, the sun came out and I felt down right wonderful. I was so excited.
Maybe this flare up is coming to an end, and I am excited about that, but I’m desperate to get to the bottom of it. Now the whole family is telling me I can’t go on the cross country road trip in the spring because I never know whether I will wake up completely incapacitated or not.
I have a doc appointment on Monday. We’re going to address my anxiety level, my heart, and the renewal of my physical therapy referral.
This is getting personal. Rest didn’t work. Maybe exercise and nutrition will. It’s time to put this Humpty Dumpty back together again, and I mean business.
I do want you to know that while I was stressing out about this earlier this week, I am doing much better both physically and emotionally now. Even if I never find out “what’s wrong.” it will be okay.
“He, whose heart is kind beyond all measure,
Gives unto each day what He deems best,
Lovingly its part of pain and pleasure,
Mingling toil with peace and rest.” (from the Hymn Day By Day, my favorite hymn)
I hope you all have a wonderful weekend!
In case you missed it:
Part I: My Battle with Chronic Pain
PartII: My Battle with Chronic Pain