Wednesday, December 16, 2009

Frozen

"Do you have diabetes?"

"Wha - What? No, no I don't" I say, looking up at the doctor's face— trying to breathe through the pain.

"Now, lie still and try to relax your arm," he says, taking hold of my right hand once again — then lifting my arm straight up toward the ceiling.

And again I try to breathe, as this time the doc moves my arm slowly back toward my head.

Only he can't get it anywhere near my head.

Like there's some large invisible wedge between my arm and the exam table.

"Well, this is a classic case," he says, bringing my arm back down by my side and then turning to the resident sitting in a chair next to the exam table — a young dark-haired woman wearing large white-framed eyeglasses. "No history of trauma, several months of rapid loss of motion... let's turn the arm inward."

Taking hold of my wrist and elbow, he bends my arm at a right angle and attempts to twist it down toward my stomach.

I cry out— because that tiny motion feels like he's just stabbed the top and front of my shoulder with a knife.

Breathe... breathe...

"Range of motion is lost in all directions," he says, with a note of finality that makes me queasy.

Placing my arm by my side, he turns once again to the resident. They continue talking about my symptoms, my history— while I stare at the ceiling, tears sliding down into my hair.

No, it's not just what they're saying, it's the damn pain still reverberating from the top of my shoulder down to my elbow.

Please just stop.

"... so we have a severe loss of motion in all directions, high level of pain... we're dealing with only one of two things, aren't we?"

"Yes," the resident responds tentatively.

"And what tests would you order?"

"X-ray."

"Yes— which was already done, showing healthy bones with some calcification on an otherwise healthy rotator cuff, meaning we can rule out... what?

"Arthritis," the resident says, sounding more confident.

"Correct. So what is the only other thing this could be?

"Adhesive capsulitis."

"Exactly!"

They smile at each other, clearly pleased that this resident gave the right answer.

I clear my throat.

Both turn toward me.

"Yes," the doc begins, "I'm very sorry, but what you have is adhesive capsulitis — a "frozen shoulder." It's a painful condition- "

"Yes, I know."

"... one with a very long recovery period. First, understand that you didn't do anything wrong. There's nothing you could have done to stop this. No one is really sure why this happens or how. We do believe that there is an autoimmune component to it— partly because the majority of those who suffer from the condition have diabetes."

"My son has type 1 diabetes," I say, distractedly, pulling myself up so that I'm seated on the table, legs dangling over the edge like a little kid's.

The doctor tells me I'll need physical therapy for as long as a year or more. He tells me about the three stages — "freezing, frozen and thawing" — and that to minimize range of motion and muscle loss, I'll need to do a lot of work. A lot of painful work.

"What about a cortisone shot?" I ask, hopefully.

"A steroid shot won't cure this, and we see mixed results when using it to treat frozen shoulder symptoms, but it might relieve some of the pain for a short time."

"Could you give me a ball park percentage of people who present like me and actually experience pain relief from the shot?"

"I'd say it's about 50%."

"Oh."

"It's always something we can try," he tells me, "if the pain becomes unbearable."

Three hours ago, when I arrived for my appointment with this specialist — this orthopedist who deals only with shoulders — I'd been so ready to plead for a steroid shot...

But now.

"Well, it's pretty bad at night and if I challenge it in any way..." my voice fades and then, "I think I'll hold off on the shot today."

So that's it.

I've heard about this thing, but could never really appreciate how bad it was until now.

Until I couldn't go to bed without waking repeatedly in crushing pain, simply because I rolled onto my shoulder.

Until I couldn't get my coat off without a struggle.

Until I couldn't reach my back pocket.

Until there was no sledding.

(Not even on the backyard hill)

No hugging my children without pain...

I don't think I've stopped shaking since yesterday's appointment.


22 comments:

Val said...

That sucks, Sandra! Sending gentle hugs your way. Hopefully things will clear up soon!

Journeywoman said...

Hope you feel better soon!

Colleen said...

I had a frozen shoulder before my T1 diagnosis. Did the shot - helped some, did PT - helped some. It eventually went away. Sleeping was the pits but with enough pillows I could find a comfortable position. Getting dressed was an experience. I hope it feels better soon.

Hallie said...

I'm sorry, Sandra. That stinks. No hugs???? I'll be praying it goes away quickly and takes all the pain with it. Hope you find some relief.

phonelady said...

this really stinks and I am off to the dr in an hr to try and get something to relieve this awfull super bug I have . take care dear i fear i will be well before you . thanks again my dear and thanks for sharing .Get well soon my dear .

Minnesota Nice said...

I've had it in both shoulders - one day just realized that I couldn't move them like I used to.
Today, both have recovered to about 80% full function. I still try to do stretches throughout the day. FOr example, when I'm in the shower, I do the "taking money out of your back pocket" stretch. At night, when I'm making dinner, I put my hands on top of the fridge and bow to it.At my desk, during the day I do arm raises, etc. I asked the PT if it was okay to do them this way vs in a sequential routine and he said yes.
I had one session with the top acupuncturist in town and he said the condition was caused by the muscle groups sticking together (hence the "adhesive") and that he would bring in a couple of students who could sit on me and then "rip them apart" via manipulation. It would only hurt for a second, he said..........I did not go that route.
This will probably require some patience, Sandra. Also, massage will most likely provide some relief.

Rachel said...

Ouch - listen to MN Nice - she's a smart one ;)

I hope the pain goes away sooner rather than later.

Paige said...

I'm so sorry, Sandra.

Sandra Miller said...

Val -

I hope so too.

Journeywoman -

Thanks.

Colleen -

Thanks for sharing your experience -- yes, getting dressed has become quite the challenge. And sleeping? Well, I'm still working with those pillows...

It's good to hear from someone who's been through this.

Hallie -

Thank you.

phonelady -

I hope you got some relief this afternoon -- and that we both recover soon...

MN -

I cannot imagine this in both shoulders. Dang.

Will definitely heed your advice on stretching whenever and wherever I can. The patience part is gonna be a lot harder.

Oh, and on your acupuncturist's advice - I've read about that kind of manipulation being done to a frozen shoulder while under anesthesia -- haven't heard of it being done while you're awake (!)

With or without meds, the "manipulation" sounds positively medieval.

Rachel -

Thanks.

Hope you're feeling better too.

Penny said...

Sandra, if it's not one thing it's another. I'm so sorry to hear about this.

I hope you have a quick, painfree recovery.

(((hug)))

Nicole P said...

I had this, Sandra... Not fun.

They ended up having to release it with an orthoscopic surgery. it wasn't bad, actually. And the relief from the constant pain and inability to move was such a welcome relief!

Hopefully they'll be able to resolve it with cortisone and therapy... If not, don't fret, the surgery isn't bad at all.

art-sweet said...

Ouch, ouch, ouch! I'm so sorry.

Lyrehca said...

Oy, so sorry to hear about this!

Melanie said...

Hey Sandra,

I've had this, a few times in my right arm. Knock wood I haven't gotten again it for a couple of years now. I'm not surprised about the autoimmune link. We both have the same one!

Leighann of D-Mom Blog said...

Gah! That's horrible!

One of my coworkers just had a similar thing. They did a procedure, put her under, and manipulated it. But she still has to do lots of physical therapy.

I cam sympathize with you. I hurt my wrist over the summer. I had surgery 2 weeks ago and am now immobilized for 6 weeks with my elbow bent & palm up. I am so frustrated not being able to do anything. I can't get a coat over it. I can't change my daughter's pump. Luckily she's not on injections anymore!

I just launched a new blog called D-Mom Blog, which I hope is a resource to other parents of diabetic children. I hope to develop relationships with more parents.

D-Mom Blog http://www.d-mom.com

Take care & hope your shoulder gets better,
Leighann

Bernard said...

Sandra, sorry I missed this post. I had one frozen shoulder and then another one. After physical therapy and exercises I'm trouble free. It probably took about a year to get completely past both of them.

Trying the exercise my therapist called Bowing to the Fridge. Extend your arms and put your wrists on the top edge of your fridge, then bow forward. It does a great job of stretching that shoulder. I still do it occasionally today.

I wish you the speediest of recoveries and a great 2010.

bethany said...

so sorry ... hope you feel better!

elizabeth said...

Sandra

I am not sure if this helps you, but I have had some severe problems all related to stiff muscles - which are laying or rather wedged up against nerves in my neck. I play tennis and swim. I am told it is not diabetes related (not sure about that really) however, I am seeing a world class physio who tells me that this intense pain is really from stiff (hard as bone) muscles, inflammation, nerve pain (which echoes down my back). He has helped me immensely with stretching, massage and exercise (pilates like). I am definitely on the mend. I don't know where you are with this - but I would recommend seeing a physio before you do anything invasive. All best - Elizabeth

Shannon said...

Hang in there. I hope it clears up a lot sooner than the doctor expects.

Louiesa Owens said...

Hope you are feeling better soon!

lydia said...

My girlfriend is going through the same shoulder problem. She does have type1 and amazingly she is an OT. It is a long painful process.
hope it gets better quickly.

I feel a little less alone as far as our boys going through simalar patterns. Alex has been so bad about dosing for food. He also said the same thing as Joe, he is tired of the diabetes , he is tired of what he thinks is disappoint me, he is tired of hearing about the complications. I am frustrated too. I worry about him , I try not to nag. It is tough for all of us.

Ken S said...

As a frozen shoulder victim, I suffered from lost sleep, trouble dressing, and severe pain when I bumped my shoulder the wrong way. Physical therapy offered little success at a high cost since my insurance would only cover 50 percent.

The best relief I found was accupuncture combined with taking 500 mg tumeric three times a day. For two months, twice per week, I had accupuncture treatments and the results were amazing.