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progress . . . of the wrong kind!


Posted by nancy s. on 7/07/01 at 08:29
hi,
i wish there were a shoulderpain.com run by scott r and full of people like you, but since there is not, i turn once again to the social/support board here for possible help. (help!)
my rotator cuff tendonitis has, according to my doctor, "progressed" to frozen shoulder. (two weeks ago my pt stopped therapy, concerned that the shoulder not only was not better but seemed worse; she sent me back to the doctor, but he was away that week; one night later that week the pain was so bad i went to the emergency room, where my arm was put in a sling and i was given pain med [tylox] and told that i should have an mri.)
so i did see my doctor yesterday at last, and he found the pain and range of motion so much worse than when he last saw me that he's quite sure it's frozen shoulder -- dreaded words! but he is scheduling an mri to rule out a rotator cuff tear.
i did a search here on frozen shoulder because i remembered julie and wendy discussing it a while back and, thank you julie, i found a very good website you'd given wendy. i've also looked at many others.
i have a few questions for anyone who has had or knows of anyone who has had frozen shoulder:

my doctor explained the three-stage theory to me and believes i'm in the middle of stage 1 (about 4 months long, while the process of freezing is taking place and pain is the worst). he says in stage 2, what he called the "plateau stage," the shoulder remains frozen but the pain diminishes. does anyone know from experience whether this is true? because this amount of pain is sickening, and i would love to hear that it will diminish before full healing, because . . .

he (and the websites) say frozen shoulder takes at least a year to heal! again, has anyone found that it really does take that long?

last question: the doctor has officially ended pt for now, at least until mri rules out a tendon tear, and also said to stop the isometric muscular exercises i was doing at home because they became painful (i'd already stopped them). he said wear the sling when i'm out or doing anything that might lead me to accidentally move wrong and cause the near-passing-out kind of pain i get when that happens. but he said not to wear it all day, and to be sure to move the arm some, even if only in small circles, to keep what movement i do have left. he believes i should keep taking the pain med, to try to relax my very unrelaxed shoulder (not to mention make life bearable). anyone familiar with this: does this plan sound right to you for now? some websites say pt is needed all the way through -- but i don't see how it would be possible at this stage.

please excuse me for going on about this shoulder condition here on the foot pain boards when you're all having foot pain! i took the liberty because i had bad pf and tendonitis here for a long time, and still do have minimal now (am in the jade balm trial to see if that affects the last of that pain); anyway, i do know what it's like all too well and am with you all the way.

nancy

Reply to above message #52395.

Re: progress . . . of the wrong kind!
Posted by wendyn on 7/07/01 at 11:05
Hi Nancy! Not that it's any consoloation, but my left shoulder has been acting up again a bit - not as bad as before but I'll be careful.

One exercise they recommended I do was to lean against a wall supporting yourself with your good arm, and let your bad arm hang down to the floor. Make little circles one way - getting larger and then the other way. This seemed like a very gentle way to increase the range of motion.

Anyone I've toaked to from the gym who's experienced a similar shoulder injury - consistently told me it took any where from 3 months to a year for full healing.

Unfortunate but apparently true.

I did injure my right shoulder last year - and it took about 6 months to get completely better.

When is your MRI?

Reply to above message #52401.

Re: progress . . . of the wrong kind!
Posted by JudyS on 7/07/01 at 12:38
oh Nancy - I'm so sorry for you! I've never had a shoulder problem so can't advise but I sure wish you the quickest possible recovery! What a drag! Why does it seem like PF mysteriously 'leads' to other, new, unrelated tendonitis's? My imagination, I guess!

Reply to above message #52403.

Re: progress . . . of the wrong kind!
Posted by Beverly on 7/07/01 at 13:15
Hi Nancy,

It seems incredibly unfair that your recovery bliss from foot/ankle pain was such a short interlude before this shoulder calamity! You must be at your wits end. I'm guessing that chatting with us online is hard on that shoulder.

I don't know much about shoulders. Worse thing I ever did to mine was a neck/shoulder strain. My Dad tore his rotator cuff some years back and he did recover. I don't know much about his treatment. I do know he went to PT. He seems ok today except he can't lift anything up over his shoulder and there are certain swim strokes he avoids. For instance, when I was hanging pictures, I didn't ask him to help me hang the big ones because I knew it would not be good for him to raise his arm that high, but realize he is 79 years old.

If you could beat PF and assorted tendonitis all over your ankle, I bet you bounce back on the shoulder with the proper care and treatment.
Take care,
Beverly

Reply to above message #52404.

Re: progress . . . of the wrong kind!
Posted by Laurie R on 7/07/01 at 15:10
Dear Nancy , I wish I knew what to say to answer your questions ,but I don't. I do want to say that you sure did not deserve this at all. You have been through so much this past year.

Your right this is the best site in the world ,to bad they don't have other sites like this one for our other problems... Scott you are wonderful and we appreciate all your hard work on this site.

My advise ,take your pain pills even if you don't want to . I know they don't take the pain away ,but hopefully they will take the edge off of it.

I'm thinking about you .

Your friend and much love to you sweet lady ....Laurie R

Reply to above message #52412.

Re: progress . . . of the wrong kind!
Posted by Julie on 7/07/01 at 15:40

Nancy, hi

The plan sounds good to me. My little knowledge of frozen shoulder comes from the website you've looked at, and as I recall it said that during the acute, 'freezing' phase, exercise probably isn't of much use and is anyway far too painful to do. Just keep it movinggently and try not to increase the pain. And take the pain medication regularly, to keep the pain at a level: don't wait till it escalates when it is much harder to bring down.

Another friend of mine (whom I also met on line, on the Interkriti website a couple of years ago) has been going through this affliction for the past year or so. Like you, her pain was acute for the first stage, and it did get better during the plateau stage. The last time she mentioned it she said she thought she was in the healing phase, and that it was getting better. I will ask her how she is now, and report back. If she has any good advice for you I'll let you know.

Klaus had it, a long time ago, when neither of us knew anything about it, and he just bore it until it was over. It took about a year. It's a real bummer, and I'm very sorry you're having to deal with it.

I'll come back to you when I know something from Judy.

Love, Julie

Reply to above message #52417.

Re: progress . . . of the wrong kind!
Posted by wendyn on 7/07/01 at 16:26
Another bad typo.

I talk to the people from the gym. I do not toke or toak with them.

Reply to above message #52419.

Re: progress . . . of the wrong kind!
Posted by nancy s. on 7/09/01 at 02:31
so good to come back and read responsive notes from longtime pf etc. buddies.
it did relieve me to hear you think my doc's plan sounds reasonable, julie. all the websites on this agree on the (long) course that frozen shoulder takes, and the stages, but of course they don't all agree on the treatment. as you and laurie have advised, i'm now taking the pain med as prescribed. like you say, it doesn't get rid of the pain, but it does help to keep ahead of it, and it does take the edge off, at least of the constant at-rest pain. i can't figure out, though, why there's such a problem in this country with people who have no pain getting hooked on the feeling (hey, wasn't that a song -- a bad song?) these meds give a person. it's not pleasant, really. can't drive on them. sometimes feel nauseous on them. but i think i'm adjusting a bit. they usually do help me sleep, too. (not tonight, though, obviously! oh well.)
wendy, oh i bet you ARe toking at the gym -- freudian slip -- but i know you'll never admit it. please do take care of your sore shoulder! i know you will. you don't want this! there are so many things a person discovers are hard to do with pf, and now i'm finding a whole bunch that you can't do with frozen shoulder.
can't wear a seatbelt.
can't wear any clothing that goes over the head.
must spend 15 minutes putting on any other clothing.
reluctant to wear underwear because it makes the process of peeing one of the longer events of the day.
can't shake hands when meeting people, and some men think i'm being friendly in the wrong way when i offer my other hand.
can't turn out the light after the magazine i'm reading falls to the floor because i'm half asleep.
can't pick up my cats.
must spend two hours washing hair with one arm.
can't scratch my head or face if the other arm is busy.
can't cut vegetables or other foods.
ok, enough of these!
as beverly said, i've been at my wits' end -- but yesterday morning woke up with a small epiphany. i thought i just cannot let this keep coming between me and the rest of life; i can't pretend it isn't happening, but i don't want it to keep me from seeing the good stuff too. i can't not be aware of it, but i can try to live beyond it as much as possible, yes? it was a beautiful day here, and i saw and felt that fully yesterday, more than in a long time. i loved the yard and the birds and the air, and i thought other thoughts. i felt more accepting. i know that every day probably will not be like that, but i'm trying to stay open to the ones that can be and make them happen.

judy, yes, these multiple tendon-related ailments do make you wonder. At least two of the websites i found mentioned the theory that the frozen-shoulder condition "may be due to an autoimmune reaction. during an autoimmune reaction the body's defense system that normally protects it from infection mistakenly begins to attack parts of the body itself. the body thinks that the tissue it is attacking is foreign material. this causes an intense inflammatory reaction to the tissue that is under attack."

thank you all!
nancy
p.s. wendy, tomorrow the nurse calls me with the mri date (oh, i guess tomorrow has become today). as you know, i'm quite claustrophobic -- make that "very" -- and people have always said to me "boy i hope YOU never have to have an mri." but you know what? that just has to be one of my last worries now, i'm not going to let it get to me. my plan is to keep my eyes closed the entire time, i mean every second, and spend the time mentally re-living more pleasant times of life.

Reply to above message #52515.

Re: Nancy - your MRI
Posted by Julie on 7/09/01 at 03:30

Hi Nancy

It's lovely to see your longer posts again! I'm so glad you discovered how to keyboard two-handed. And I'm glad you saw and felt the beautiful day. It sounds as though you're beginning to get the measure of this thing. I knew you would.

I have a suggestion for you when you have your MRI. Focus your attention on your breath, and be aware of it. Notice its temperature, cool as it enters, warm as it leaves the nostrils. Be aware of its texture, its rhythm, its depth. Just keep breathing in and out, allowing the breath to flow easily and peacefully and naturally. I think you'll find that this keeps you centred and avoids any anxiety.

It would be a good idea to practise this in the days before the MRI. And generally.

All the best, Julie

Reply to above message #52520.

Re: Nancy - your MRI
Posted by nancy s. on 7/09/01 at 08:00
thanks, julie -- i could hear your soothing voice (from your tape) in my head as i read your post!

i just got the phone call: I'M HAVING THE MRI TOMORROW MORNING AT 6;45! sorry to shout. the med ctr didn't really have an opening until august but my dr got them to squeeze me in. so to speak.

i will practice paying attention to my breathing a lot today. any other tips much appreciated! thanks.
nancy

Reply to above message #52530.

Nancy - an open MRI?
Posted by Andrea R. on 7/09/01 at 08:05
Nancy,

I seem to remember that you lived 1/2 an hour from LL Bean. York Hospital in York, ME has an open MRI and advertises that you can bring a friend to sit with you. If you are really claustrophobic this might be a good option. Maine Medical in Portland should have one too.

Have you tried icing your shoulder? Also the pendulum exercise might help. You lean over and support yourself with the good arm. Let the bad arm hang down. Then swing your body so that the arm swings like a pendulum. This was one of the exercises I started the day after my shoulder surgery. I also did arm lifts just to shoulder height both with the arm out to the side and straight out in front.

Try going to sleep with a small pillow under your bad shoulder or roll on your good side and hug a regular pillow.


Andrea

Reply to above message #52531.

Re: Nancy - an open MRI?
Posted by nancy s. on 7/09/01 at 09:52
hi andrea, you have a good memory! actually, i live just outside of portland -- and i can't go to york, because i have special coverage at maine med right now due to prolonged inability to work. the mri wouldn't be covered anywhere else.
they know i'm claustrophobic but i'm signed up for the closed mri -- i think my dr wants it, apparently it's a slightly better image.
my shoulder is so frozen that i can get my arm only about 10 inches away from my body -- in other words, not even waist high. so the arm lifts are out for me for now. but i'll add the pendulum exercise to the circular one. thanks!
Nancy

Reply to above message #52537.

Re: Nancy - an open MRI?
Posted by Andrea R. on 7/09/01 at 12:12
Nancy,

We're practically neighbors. I live just outside Portsmouth, NH. When you need advanced medical care around here they either send you to Maine Medical or somewhere in Boston. It has a great reputation.

The biggest thing I was told about my shoulder was when the doctor recommends exercises do them. I know your not at this point but hopefully will be soon. I think they know more about shoulders than they do feet. If you happen to have Ibuprofen Cream, rub it into your shoulder.

Andrea

Reply to above message #52544.

Re: Nancy - an open MRI?
Posted by JudyS on 7/09/01 at 13:32
Let's see, Nancy, when Laurie took her claustrophobic self off to get an MRI last fall, I made a deal with her that I'd go get my tattoo on the same day.....hence the Rose was born.
However! I love you, I adore you, I think you're swell......but this time it'll have to be a temporary tattoo - OK? Or could I just lift a Corona in your honor?

Reply to above message #52548.

Re: Nancy - your MRI
Posted by wendyn on 7/09/01 at 22:19
Nancy - just in case you're up late...

Iwill be thinking of you tomorrow morning...as Julie suggested - do the deep breathing thing and pretend you are somewhere else. You may be allowed to have someone come in with you - some people say it makes them more comfortable to have a hand to hold.

If it's realy bad - sometimes a sedative is in order.

I am not claustrophobic as a rule - but I know that it is a bizarre sensation - and I honestly did the deep breathing and meditation just so that I could stay fairly comfortable.

I have one other little tid bit for you......

With your shoulders the way they are - don't go swinging on the monkey bars at the park. I did on Saturday. Seemed like a good idea at the time. Evidently my body knows that I'm not 10 anymore - even if I don't.

My shoulders hurt now. Both of em.

Reply to above message #52602.

Re: Nancy - your MRI
Posted by nancy s. on 7/10/01 at 02:28
hi wendy, no, i'm not up late, but i AM up early! woke up at 1:30 a.m. by accident, and i don't leave for the hospital until 6. so, lots of time to take a shower, fool around on the web, and worry. no, i'm not seriously worrying. i'm quite calm, it turns out. i will take julie's advice, and will also listen to classical music through earphones and have them put a cool cloth on my forehead and eyes. if i keep my mind with me and don't look around, it'll be fine.
wendy, i guess i was wrong when i posted that "i know you will" take care of your shoulder! swinging on the monkey bars -- tsk, tsk. thanks for the advice; i won't try that, even though i WAS planning to stop at the park and do it on the way home from the mri. i hope your shoulders will be ok!
it's so early that i expect julie will start posting any second now. if so, good morning, julie!
nancy

Reply to above message #52615.

Re: Nancy - an open MRI?
Posted by nancy s. on 7/10/01 at 02:46
we ARE practically neighbors, andrea! it's nice to hear that maine med has a good reputation there -- even competing with boston, what a shock. my husband does a lot of work on SPNEA historic houses in and around portsmouth, by the way.
i think you're right that medicine seems to know more about shoulders than about feet. at least i hope so, after the fiascos i've experienced with the feet.

judy, you know what, when you begged to lift a corona in my honor instead of getting a tattoo like you did for our laurie, i thought you were offering to lift a CAR! then i remembered that corona is a beer. right? so that's a letdown, my dear -- i'd prefer that you lift a car. let me know how it goes, and please don't hurt your back.

nancy

Reply to above message #52618.

Re: Nancy - GOOD LUCK
Posted by Julie on 7/10/01 at 06:25

Well, Nancy, I WAS around on the board then (8.28 here), but there were over 100 messages on the 'All messages' page, so I didn't get around to Social before I had to go out (to Weight Watchers, where I am trying to remove the stone I've put on over the last year or so. Very helpful - especially following our gastronomic splurge the other day in you-know-where.) So I think I may be too late to wish you luck and joy

But if not, as it's only 6.30 am in Maine, and if you check in before you leave - GOOD LUCK NANCY! And that's not shouting. It's permitted for emphasis.

I'm sure you'll stay centred and be ok. The music is a very good idea. Wish we could all be there to hold your hand.

Wendy - monkey bars? Echo Nancy's tsk. You weigh more than you did at 10. I once gave myself tennis elbow by hanging off a bar. It's supposed to be good for opening shoulders and general stretching, but I let all my weight relax into the stretch, and when I came off - you guessed it. Tennis elbow. I was lucky it wasn't frozen shoulder. I hope your shoulders recover quickly.

Reply to above message #52628.