New to Forum - FS started in Aug - boy does it hurt!

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Topic Title: New to Forum - FS started in Aug - boy does it hurt!
Created On: 12/31/2014 02:06 AM

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 04/03/2015 02:17 AM

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LizzyJean

Posts: 11

Thanks so much for your message, Tori, and sorry it's taken me so long to get back here. I really appreciated hearing from you.  Your message came at a time when I was feeling troubled and overwhelmed by my very stiff FS and it helped a lot.

I've had an MRI and x-rays, and I definitely have a classic FS - nothing else wrong with it.  The orthopedist I finally saw said I'm in the 90th percentile of bad FSs!  It was good to have someone acknowledge how bad it is, and at the same time depressing to hear that all my efforts to improve have gotten me NOWHERE.

The orthopedist offered me a cortisone injection, saying there was probably less than 50% chance that it would help.  But the pain I experienced when they injected dye into my joint for the MRI a couple of weeks before was so bad that I couldn't tolerate even 5 CCs (I was literally crying on the table), so I decided to pass on the cortisone shot. He also said that he thought my shoulder wouldn't get better without surgery, because it's so stiff, AND that it's better not to wait too long.

I'm getting a second opinion.

I've heard from people who had VERY stiff FSs and then went on to recover full ROM without surgery.  I've also heard a fair amount of miracle stories:  after having bad frozen shoulders for months, some people suddenly recover full ROM all at once.

At this point, I'm skeptical of everything.  Why intervene if the outcome is pretty much the same no matter what you do? I appreciate hearing from you, Tori, that in your experience people who have surgery take longer to heal.

But I need to do more research and get my second opinion before I decide how to proceed. 

I've been having sessions with a Feldenkrais practioner who does gentle manipulations and teaches me very gentle exercises.  This has really helped me sleep better and decreased my pain, but hasn't increased my ROM at all.  I would definitely suggest it to others with FS to help with the pain, with this caveat: steer away COMPLETELY from any manipulations which make your shoulder even slightly more painful.  Otherwise, you might have days of increased pain! The practioner will find ways to decrease the pain, but it will take some time and you have to keep speaking up whenever the pain flares up during a session.  (Tedious, but worth it.)

I also find that walking and other light exercise, while it might hurt more in the moment, decreases the pain for long periods afterward.

For Angelrobert, who says that ROM keeps getting worse no matter what, I HEAR ya.  For a long time it seemed like the exercises were MAKING it worse.

My strategy now is "No Pain, Most Gain".  I do what I can to keep the rest of my body in shape, but I steer clear of anything that really hurts my shoulder.  I cook less, I play guitar and piano less (even though I teach music for a living), I type less, I write less (it's the shoulder of my dominant hand), I rest often. Having looked at pictures of an inflamed shoulder capsule, it's obvious that it need lots of TLC, rather than stress.  So yeah, icecream, funny movies, and when the pain is bad I breathe into my shoulder and visualize cute and beautfiul things like puppies and ducklings and rainbows and butterflies and lying on the beach. Seriously. I've lowered my expectations for getting things done, and I've put saving the world on hold for now

My general pain is way better, and I'm sleeping well, though I still wake up once every few nights in horrible pain which keeps me awake for awhile. My ROM is really tiny, but I've learned to live with it (for now).

I really appreciate having this forum.  Sending warm fuzzy thoughts to you all.

LizzyJean

 

 

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 04/02/2015 03:17 PM

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angelrobert

Posts: 104

Hey Friends,  My ROM keeps getting worse, despite all my attempts at PT as well as exercise, please suggest me some solution, otherwise many people suggest me to visit orthopedic surgeon.

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 03/14/2015 11:20 PM

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tori

Posts: 244

 Hi LizzyJean!

I'd first like to say that I admire your attitude towards paying attention to the positive aspects of your body.  I do believe in mind over body, but the trouble is I have a difficult time taking the action when I'm in the midst of it all.

I've had FS twice.  The first one was about 16 years ago (my posts are somewhere on here since I practically lived on this site during my FS maladies) on my right side and the other was about 7 years ago on my left and I'm here to tell my tale and hope it helps a bit.

First off I'm fine and have full ROM.  Secondly, I didn't do much of anything that exacerbated the pain I was having and it was "down to my knees" crying pain.  Probably much like yours.  I went to a masseuse who was so good I remember him gently massaging my arm and talking softly to me for about 45 minutes and when he was done it was the first time in 4 months or so that I didn't feel pain from Saturday 10 a.m. until 7:00 p.m. Monday when it came back w/a vengeance.  I found frozen peas were my best friend for pain and sometimes narcotics helped me care a bit less even though I could still fieel the crushing pain.  Initially I went to an orthopedic who gave me a cortizone shot which did nothing.  When I went back he tried to talk me into arthroscopy or an MUA (Manipulation under anesthesia)!  I asked to speak to Chief of Staff because he was so smug when I said, "NO WAY!"  COS said, "It makes no difference whether you do something or do nothing.  FS (Adhesive Capsilltus) will run it's course within about a year or so, regardless.  I chose the latter and he was right.  PT hurt so badly I couldn't stand it.  I powered through it ONE DAY AT A TIME, one hour, 5 minutes...whatever it took to get me through another day and eventually my range of motion came back...completely.

I've noticed that the people I talk with who've had FS (and there's a lot) and worked out, had surgeries etc. took the longest time to heal.  That's just my experience.  Sometimes in the shower I'd do a spider walk with my affected arm/shoulder, or in bed I would hold a 5 lb weight over my head and let it go back until it hurt and then stop.  There's a pendulum swing I would do in bed as well.  I'd watch hilarious movies, listen to movies, read, write and eat a lot of ice cream and I got well.  The second one wasn't fun, but because I had it before I wasn't so freaked out about it and did the best I could.  I'm fortunate in that I work at home...not so sure I'd do so well if I didn't.

Your question as to WHY?  You've been doing nothing wrong.  No one knows what causes FS or cures it...except time.  How can you know what's causng it if the doctor's don't...and they really don't.

Hugs to you and this too shall pass.  I promise!

tori

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 02/05/2015 01:18 AM

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LizzyJean

Posts: 11

Thanks for your post, Fitzroy.  And yeah. My ROM keeps getting worse, despite all my attempts at PT. At this point I am backing off from trying to increase ROM and just focusing on managing pain.  It seems like all manipulation makes it worse at this point.  But boy is it hard to be this immobilized!  Thanks for your words of encouragement.

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 01/24/2015 09:54 PM

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Fitzroy

Posts: 676

Hi LJ, It's quite common for people in their 50s and many times it comes on for no reason and with people that are active. This is the really cruel part of it because spend a bunch of time trying to figure out why, when there seems to be no answer. I too was determined to not lose ROM and I ended up in terrible shape. I had almost zero movement left by the time I hit the frozen stage. Keep at it is all I can say.

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 01/01/2015 08:05 PM

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LizzyJean

Posts: 11

Thanks for replying, Animal! Your understanding and advice to be patient really help a lot. And it helps to hear from another musician.

I'm self-employed too, and I can imagine how bad that must have been to be unable to work. It sounds like a very long ordeal for you and I hope, hope, hope, that I have an easier path.

But I'm really glad to hear that you eventually recovered and yes, I need to keep reminding myself that I will recover too - just not necessarily at the speed that I would like!

Take care and thanks again for writing.

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 01/01/2015 02:43 PM

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animal7

Posts: 91

Hi LizzyJean,

I hardly ever come on this site now as I'm 95 % recovered from my FS. I thought I'd reply to you though because I'm a musician too, a professional percussionist.

I had a severe FS three years ago; unfortunately physio didn't help & I resorted to surgery as I was completely unable to work...and I'm self employed.

It still took months to recover ROM and get back to work.

I'm not trying to depress you though! I did get back to work and my shoulder is almost as good as it was before FS now. You'll get there too, but you will have to be patient; easier said than done, I know. I was so impatient and angry...which didn't help in the slightest!

Good luck with your FS journey. You might have noticed that people come and go from this forum - and that is because we all get better eventually!

Good luck!

Animal



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 12/31/2014 02:06 AM

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LizzyJean

Posts: 11

Hi:

It's great to read the posts of others who have had a frozen shoulder. I've been feeling really alone and the pain just keeps on coming! It's reasurring to read about symptoms just like mine, including the shooting pains that completely incapacitate me, the lack of sleep, and the depression. It gives me hope that things really will improve some day. It's hard to feel hopeful when I'm in so much pain.

I'm a 53-year-old woman - a music teacher, musician, dancer, and usually very active.

I saw my doctor about the pain in my left arm about two months ago (I'm left handed) and she diagnosed FS. I've seen one physical therapist who hasn't helped it at all. I've had weekly acupuncture treatments, adjusted how I sleep, adjusted my computer set up, changed my diet, but the pain and ROM just get worse and worse. Sometimes there's no comfortable position for my arm. At this point, I can't pull shirts over my head, or even put my hair back!

When I found out I had a FS, I was determined not to loose mobility. I did ROM exercises every day. I also kept working out even though it hurt like hell. Then the PT told me to stop all that. He gave me only two exercises that don't really address the problem. I think it was a big mistake to stop the ROM exercises that my doctor gave me.

So now, after seeing my doctor again, I'm doing the ROM exercises once more and waiting to see a new PT.

Here's two things which I think are helping: 1) turmeric, which I make into a paste with honey and black pepper and take twice a day in tea, and 2) yoga. I used to do yoga in the past and now I'm adapting it to my situation (meaning that my left arm just gestures slightly towards whatever it's supposed to be doing, but stays within its tiny little comfort zone). Yoga reminds me of how good the rest of my body still feels - something I had completely lost track of while drowing in this sea of pain - and it also frees up my shoulder quite a bit!

My biggest question is WHY? What have I been doing wrong? How can I get better if I don't even know what's causing it?

I would love to hear back from anyone who has experienced FS, and espcially from those dealing with it right now. It would be great to have ongoing conversations about it.

(Thanks for reading my long post.)

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