bilateral frozen shoulder Need advice

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I have bilateral frozen shoulder. Right is worse than left but both are in the freezing stage at the same time. I am 4 months in and the pain is getting worse instead of better. Had one cortisone shot (in the right (dominant) arm) and will have one in the left arm this coming week. It did not help at all. I am waking up at night with my arm jammed which is causing excruiating pain. I can't seem to find a comfortable position because I have it in both shoulders at the same time. I'm exhausted.

Eating has now become very difficult because raising my hand to my mouth is not only difficult but very painful as well, again because I have it in both arms I can't simply just use the other arm.

I'm looking for some help. I need advice on ways to make my life easier because I understand that the frozen stage will make things more difficult. Just how limited will my ROM be? Right now my hubby helps dress me, puts my deodrant on, etc. How bad is this going to get. I'd like to know so I can mentally prepare. I'm getting quite down over this. Luckily I'm a therapist so I'm busy pulling from  my toolbox and doing therapy on myself but man this is hard. I've had numerous medical setbacks over the past three years so I was pretty ticked when this hit me out of the blue. I still find this hard to accept and am researching it like crazy. I am a former nurse so I understand the medical jargon quite well but it is still frustrating to read all the medical journals and see idiopathic as the cause.

Any advice would be greatly appreciated smile

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  • Posted

    Oh wow.  My heart goes out to you.  What a challenge. 

    I've done a fair bit of research into FS and you know it is inconclusive.  If you look up Google Scholar there are clinical studies which acknowledge it's a poorly understood area. I've looked into clinical trials done on different clinical treatments and there doesn't seem to be much evidence supporting any of them.  Here are the exceptions as I understand it: Steroid injection can be helpful if done soon enough - but definitely not guaranteed.  Also, there's a new treatment now called Hydrostatic distension - hydrodilation which seems to be helpful.  I'm about to have this - in about 3 weeks time and will update people on it. 

    I did read that there's evidence that acupuncture can help.  Maybe you should give that a go as I've read this on google scholar and elsewhere.  Oh - and lastly - in my case - I did have some craniosacral therapy.  I did find that helpful.  She said it would help with the traumatic element and that does seem to be so.  There's another contributor to these discussions who has been very positive about 'energy healing' approaches (Reiki etc).

    There's someone in these discussions called Gerry the Neck who recommends rest and allowing FS to take its course - and there seems to be alot to be said for that approach.

    Sleeping is a real problem.  Here's what I did.  Sleep propped up against 3 pillows so you're semi upright with a nice soft pillow under your neck to support your head.  Under each arm (in your case you poor thing) have a small pillow to support the arm and take the weight off the rest of your arm. How difficult it must be for you.  Perhaps you do need some help from pain killers too and maybe other things (sleep aids) - given what you have to contend with.

    I'm a therapist too by the way - so I understand what you're saying about getting some therapeutic value out of this life challenge.  I hope your husband is good to you.  You need good support.  Some nice shoulder massages help I think as there's so much tension held there caused by resisting the pain.

    Good luck

    xxx

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  • Posted

    hi M. wish i could help. the only thing i would suggest u explore/research is the use of 'laser' for it. it sounds the least pain provoking. why not give ur local 'Chiropractic or other Physical therapist a ring. i had 'laser' to my knee some years ago when i did a lot of climbing and it worked a treat. a Chiropractic therapist told me laser had v. good results with FHS. presently, i've got one a half frozen shoulders. so i understand ur pain. my sympathies are with u.

    Caitlin.

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  • Posted

    I'm so sorry to hear that you have two frozen shoulders at once.  Good gracious....I am so sorry. I can only tell you my own story/experience, and from what I've seen different things work for different people.  For me, I've tried a lot.  My injuries started with a car accident, a broken collarbone. I started in gentle PT with the actual broken collarbone, because they were concerned with my arm and shoulder from the beginning.  I had taken the impact from a high speed car accident on my left side/shoulder.  I will never forget the "freezing stage" of FS.  Horrible....the devil.  There is little sleep, and there were times when I wondered how it was humanly possible that I was still on my feet during daytime hours.  I was one of the lucky ones, because I didn't have to report to a job.  How anybody works while going through frozen shoulder, I don't know.  Anyhow, I don't mean to be doom and gloom.  Continuing on, after 4 months of physical therapy (which did help my range of motion, but kept me in pain), my therapist felt that I had hit a plateau and recommended surgery (MUA and the keyhole surgery to break up scar tissue). After researching the MUA, and reading messages from different posts on here, I decided it was too aggressive for someone that just got over a broken collarbone.  The last PT session I had was mid December 2014.  It is now February, and I've tried a new approach of major resting at home for 6 weeks.  This is what has become of that:  my frozen shoulder is not as painful, I can sleep much better, but I have lost some of my range of motion.  What I have discovered in all of this, after a simple exam from my family doctor who insisted on ordering a neck MRI, is that I now have neck and /spine issues.  Someone wrote a post on here discussing how he believed that FS originates from a neck problem. I'm beginning to think this also.  Either that, or the frozen shoukder is causing neck problems. If you decide to go the total rest approach, please don't just lay there. You'll be sorry, because it will effect your back and neck. Is there anyone else on here that are having issues as I've described? 

    My my advice for you regarding your sleeping is to surround yourself with pillows. Several in back of you, and several under both arms. With you having two FS, change your position aloit to try and avoid issues with your neck and back.  The freezing part will get better as far as the pain goes.  Hang in there on that!  It will improve. The movement of your arms will improve too, but I'm beginning to think that it just has to take its course because I've been like a human science project for all of you.  Also, the cortisone shot I had did absolutely zero for me. What does help during the freezing stage to sleep (so I hear...not speaking from personal experience)  is medical marijuana. That and a few bloody Merrys work  better than any pain killer....so I hear. Haha. I'm not kidding....dead serious and I am 51 years old.  Of course I'm in the good old USA, so I do t know if it's legal where you are.  I hope this doesn't get me kicked off the board here, but we're all desperate for answers and if it's available to you....and legal...do it. I think its a much better option, if legal, than getting addicted to Oxycodone or other pain killers (which frankly don't help after awhile). Anyhow.....God Bless you and hang in there. I hope I don't see any of you over on the Spinal message boards, because I'm worried that's where I'm heading. Keep in touch everyone..

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  • Posted

    Hello - please go and see a shoulder specialist. I had capsular release surgery and it totally worked. Sending my very best wishes to you x
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  • Posted

    Hi all, thanks for the quick replies. I guess I should let you all know what I have tried so far too. I am seeing a specialist (ortho). I live in Canada so it's all covered but the wait is a bit long and I've had to make quite a fuss in order to get in as quickly as I have. I am on Tramadol for pain and Ibuprophen however this rips my gut apart but as you know the pain in the shoulders is severe so I don't have much choice but to take it and take acid neutralizers for my stomach problems. I have been seeing a massage therapist, acupuncuture, chiropractor and was seeing physio but have been told by my physio that they can no longer help me because the inflammation is too high and have been told by three different specialists that physio is no longer recommened during the freezing or frozen stages as it may prolong the duration and increase inflammation. I have done lots of research in medial journals and they all seems to support this as well so I am just doing passive movement exercises to keep some ROM and not moving beyond the pain level. I have had MRI's, xrays and ultrasounds. I do have old shoulder injuries so there is other scar tissue there as well and a few small rotator cuff tears but those aren't really significant. I had sub AC bursitis but it seems to have cleared up with meds and rest and I have bilateral tendonosis (which is really just scarring from many old episodes of tendonitis).

    I knew that the injection was only a 50/50 shot because he was going in blindly and it really should be done under ultrasound guidance but again in Canada---long wait times and I was desperate so I said-I'll try anything for now. I am not sure if they will do hydrodilation here but I am definitely going to mention it on Tuesday. I have read lots on the capsular release so I am also going to ask about this because I had a similar surgery done on my hip about two years ago (labral debridement) and it worked wonderfully. They don't like to do surgeries here and wait times are about 2 years which means it will likely be over by the time I get a surgery booked sad I am going to push though if things go on beyond the normal time flow. I can get on a list and if it clears on it's own then I can cancel and some other lucky bugger will get my spot smile

    I am so thankful to find this site because I thought I was a big baby. I cannot believe the level of pain. I have been through 5 deliveries (no pain meds) and numerous surgeries and illnesses so I thought I could handle pain but this thing has literally brought me to my knees. It has been wonderful to find a community of people who truly know what this condition is like. I laugh and cry as I read the posts. It has been very cathartic for me. Thanks again all

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    • Posted

      Hello again - I'm so with you on this - I've had two children and child birth is nothing on this kind of pain! I was getting clinically depressed and I'm usually a sunny positive person. Not sleeping was torturous, and all the meds made me sick, morphine was the worst! I ended up paying in the UK £5000 for the op plus after care physio, the op was a 2 week wait rather than 4-6months. I'm not wealthy, we got a loan, but it was the best £5k I ever spent because after the capsular release surgery I am nearly,(not quite there yet) back to normal. I hope so much they can help you - I'm sending my very best firm England to Canada - Karen
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  • Posted

    Oh how I feel your pain!  I too have one shoulder totally frozen all the way round, with no hope of resolving with a) hydrodistillation b) physio c) wait and see - ortho said mine is as bad as it gets, so it is off to surgery for me on Friday.  It has been around 5 or 6 months since it all began as just a pulled muscle in my arm (or so I thought) months of discomfort and then screaming pain followed and then my other arm started to go the same way.  I tried the Neil Asher Therapy and physio, but it just made my arms hurt even more.  I have found that in the last month the pain has increased and my arm (left) and is more restricted it also now spasms even without sharp movement.  I am not sure which stage I am in as still have pain at night.  Thank goodness i work from home, but even then its hard going.

    I really dont know how you cope with two totally frozen ones.  You really need some help with this and I would continue to make a fuss if I were you until they sort you out, you surely must be a special case with two shoulders, it is like being disabled and waiting two years is worse than the NHS here in the uk.

    I am having arthroscopy capsular release on my left shoulder on Friday with a little bit of manual help and cortisone on the right in the hope of dampening down inflammation and stopping the formation of more.

    I will keep you posted on how i get on.  This might be an option for you.

    At only 4 months, I fear you have a long way to go, but you never know with this weird thing, it may resolve as quickly as it started.  Take care of yourself, get plenty of rest and dont take no for an answer with the specialists and get some help.

    Cheryl

     

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  • Posted

    I too have the same problem I'll about 9 months into it I've tried acupuncture its give me a little bit more mobility the the pain has been very intolerable on my arms
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  • Posted

    mamaelaine,

    WOW, I can relate.  At the beginning of April, my left shoulder started to ache and I noticed I was having difficulty reaching into the backseat of the car, undoing my bra, things like that.  A week later, my right shoulder started to throb.  Shooting sparks of pain travelling down my biceps muscle, sleepless nights...Very quickly, I had limited ROM in my right (right dominant) arm and was heading that way with the left.  After ultrasounds and xrays, I was diagnosed with FS in both shoulders and PT was suggested but only limited to exercised that did not hurt.  What a joke.  Walking hurts.  Most days, breathing hurts.  Like you, I live in Ontario, Canada and there is such a long wait to see anyone, this disorder will probably work itself out before I can get anything done.  But, I am still trying to keep a positive attitude, which is very difficult some days.  I bought spray deodorant the other day and was able to put my own deodorant on for a change, thank you very much (even though most of it was dripping down my arms). 

    Have you had any success getting help and have you had your hormone levels checked?  I am 50 years old and have been reading that this issue could be related to menopause and treating women with hormone therapy has been found to resolve FS for some within a couple of months time.  Wouldn't that be nice!!  I am making another DR appointment in the morning to talk about this and we will see.  I know my doctor is sick of me researching this and almost dismisses my questions, but I will keep pushing until there is nothing else I can do.  No one should have to live with this and just wait for it to go away.

     

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  • Posted

    I know this is an older post, but I am wondering if those of you with the misfortune of bilateral Frozen shoulders could give me an update on your status?  I have all the same issues you mentioned with sleep, difficulty with daily tasks & terrible pain.  The non-dominant side has been affected for about 9 months and the dominant side for 3 months.   I have had X-rays, MRI and an EMG to rule out other possible issues, but all reaffirmed idiopathic FS.  No improvement with PT or cortisone injections.  I see a surgeon in a couple of weeks for possible MUA.  
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    • Posted

      Hi Lisa

      I know you were on this forum 2 years ago but I am curious as to how you are now?  I too am suffering bilateral FS, now in the 5th month. I am due to have injections on Monday, they can’t do both sides at the same time. I am now off work for the last 5 weeks and I’m sure my employer thinks I’m skiving off work. People who haven’t had this do not fully appreciate the pain that we are suffering, not to mention the lack of sleep!  I actually hate nighttime now, I dread it with a passion. My husband has been good but even he is starting to lose patience with me which is not very nice. I feel really snappy as being in constant pain and exhausted. Please let me know how you are after 2 years. Thank you!

      Sarah 

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    • Posted

      Hi, Sarah.  I am so sorry you are going through this.  My case turned out to be a pretty difficult one because I didn’t respond to PT or cortisone shots.  They do help many people though!  I ended up having a manipulation under anesthesia on one shoulder after 2 years.  I wish I had done it sooner, because it’s the one thing that actually worked.  The other shoulder began to improve on its own around the same time.   I did lots of PT after the MUA, which was hard, but effective.  My range of motion is still not perfect, but it is still improving.   I have only very mild pain; nothing at all like what it used to be.  You are right, people do not understand how painful it truly is.  I wish you the best of luck with your recovery.   My one piece of advice is to try to stay busy.   Any distractions from the pain are a good thing!

      Remember, it WILL get better.

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    • Posted

      Hi Lisa

      Thank you for replying. There is light at the end of the tunnel then! I’m so happy that you are well on the way to full rebcovery.  I’m 47 but feel 77!  Will keep you posted. Thanks again.Sarah

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