Anyone else have dual FS? How do you cope??

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This site is a godsend! January 2015 I thought I had tweaked my shoulder

By reaching to turn off a light. March I got a cort shot that did nothing.

Went to physical therapy with no benefit, just added agony. August 2015

I had mua and arthro release. October my other shoulder started to ache.

January 2016 tried a cort shot with horrible results. Excruciating pain.

Now here I am looking at having mua and Arthro release on my second shoulder

And I am so worried. My left shoulder(the first one) bicep area is still painful and clicks.

I don't know if I can go thru it all again. I always thought I was pretty strong and could handle pain.

But this has taken me past anything I ever imagined. Has anyone else gone thru similar with dual FS?

How are/did you cope?

Family and friends don't understand the toll this hell takes. I have not slept longer then three hours at a time for over 15 months

How do you sleep at all with two bum shoulders? How do you do anything???.

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  • Posted

    Hi ihavent had it in both shoulders, i say i have FS in left shoulder and stiff right shoulder i am having surgery in the morning the surgeon isnt sure if its the start of FS in the right or if its over compensation from the left. i sympathise with pain and at night thats all i got and it was morphine induced I had a few incidents at work where itvwas banged and i droppd something natural reaction to catch it OMG i was doubled over crying and nearly passed out with pain. Its an awful condition really awful hope you get some relief soon xx
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  • Posted

    Thanks for the reply Karen . Hoping you have a great outcome with your surgery.

    When my second shoulder started giving me pain ,my doc said the same thing.

    Was not sure if it was FS again or just over compensation. I pray yours is just that and you don't have to go thru this nightmare a second time.

    Check in when you can, let us know how you are doing . Best of Luck to you !

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  • Posted

    I am dealing with it for the second time too. It is very frustrating and very painful. When I got over it the first time, I was so grateful that it was over. I never dreamed that I would get it again! Yet here I am, dealing with the pain, the lack of sleep and the overall frustration of having to go through this again. I can totally identify with your comments about getting bumped or reaching to grab something. I can't hook my bra I can't take off my clothes normally or put my clothes on normally and it is a struggle to do my hair. I know I am whining, but I am so frustrated!!
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    • Posted

      Hi ThOmkat

      I am so sorry you are going thru this a second time.

      Did you heal naturally with your first one or did you have surgery??

      I don't think you are whining at all. To me,this goes way beyond normal

      frustration. It blows my mind that this condition exists with so little information.

      And doctors are just complacent to say , yes it is incredibly painful and well it could last up to 3 years.

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    • Posted

      i had surgery yesterday although stiff and it hurts to do exercises im so.happy i could cry the relief is unreal i know people dont like surgery but personally im so glad i did and if it mives into the other shoulder 80% chance it will i will opt for surgery again im more comfortable 24 hours after than i have been for 2 years xx
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    • Posted

      OHHH Karen I am so happy for you !!

      I hope this is the beginning to the end of this nightmare for you .

      I am scheduled for next week but still unsure. Last surgery I had the nerve block and it worked but kinda freaked me out.

      Did you have MUA and or Arthroscopic Release ? Nerve block ??

      When / if you feel up to it let us know how you are doing.

      YAY YOU !!!!!

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  • Posted

    Hi Karen and all FS sufferers past present and future...

    I am on my second round of this.  About a four year gap between - long enough to have forgotten how truely awful it was first time around.  This time is about the same, though I have a little more movement this time.  Also I think I have not suffered as badly as so many of you.  I can raise my arm out in front of me and up a little.  I can do my bra up around my waist and sort of on my hip.

    I did not opt for surgery.  My GP first time around said the recovery was as slow and painful as going through it naturally.  Reading on here that seems to be true for some, but not all.  It seems like this is a disease that is the same but very different in many ways.  where it hurts, how long it lasts and how we recover.

    The one thing that seems to be true for all of us is the pain of sudden movement!  I have suffered the agonies of dropping/catching and moveing suddenly.  oh my have I cried in pain.  The broken sleep. the toothacahe arms.  The throb. And no matter how understanding everyone is.... they really do not understand.  How can they?   I too would have dismissed as exageration anyone that had described my pain and symptoms.  Me who is never ill, and has little patience for the 'Flu' sufferers that really just have a cold.  

    The only consolation for anyone that is getting this a second time... this should be the last time.  It will end.  It will go.  Don't push through the pain unless you have gone the surgical route and exercise is part of the plan.  Otherwise, rest, anti-infamatories, pain killers, gentle movement, heat, ice, tens and time.

    Eat healthy food, your body need the nutrients in order to repair. Walk, keep moving even when you feel like culing up in a ball and giving up.  Read these forums and support your fellow sufferers.  All of this helps in little ways.  It does get better.   One day you will wake up and realise the pain was a little less yesterday. but keep taking the painkillers/anti inflamatories, keep moving and keep going.

    Thinking of each and everyone of you neutral

    Colette

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    • Posted

      I'm going through round 2 myself. I understand that this condition won't reenter the same arm twice, so there must be some kind of immunity built up to prevent it. Having it in both shoulders at once would be really awful though. I wish I had an answer for that.
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    • Posted

      Hi Midonda

      I read somewhere online recently that it could be a virus - which makes sense in that it is rare to get it more than once in the same shoulder.  

      The hormone angle seems the most likely.  Male/female - diabites.  Insulin is a hormone.  links to thyroidism - thyroid creates hormones. A lot of us ladies on here 40 - 60 and a lot of hormones in action.

      A few seem to get it as a result of an injury - I suspect in the rare re-occurance in the same shoulder, it is injury related.  

      The rest of us look at what we might have done to cause this terrible thing.  Each of us can dig through our memory banks and recall some movement that might have torn something .  A catch, a throw or hand that goes out to steady ourselves when we trip.  We look for a repetetive movment to blame.  I firmly believe second time around that I didn't do anything to cause either occurance.  They just happened and would have had I done eveything differently.

      I live a fairly healthy life.  A healthy diet, and weight.  I am reasonably active and energetic.  I rarely get sick.  I am not diabetic nor do I have thyroid issues as yet.  I had blood tests about a year ago and all was good - except my Vitamin D was a little low.  My B12 was within ok range - but I have been borderline in the past and make sure I supplement sometimes.

      I know I have written much of this before. Forgive the repetiion! I write it more in the hope that some PHD student or Doctor will come along and gather up all of our information and find a cause and hopefully a cure for the next generation of sufferers.

      I felt this episode coming on last April or May 2015, minor twinges, and discomfort.  Nothing serious but I found I couldn't get comforatable at my desk at work.  I ended up swapping my mouse from my right to left side.  That helped.  

      By October my shoulder ached a bit.  By November I was losing ROM and losing some sleep.  Decemer I was up to a mix of 14 ibuprofen and paracetamol per day.  I was just coping.  January was dreadful.  

      February was bad but down to 8-10 tablets per day. March I woke every night but no longer had to get up for a paracetomol.

      April down to 6 painkillers per day

      April 24 2016 - one paracetamol before bed and one moloxicam (I have four left so will use until gone)

      April 25 - today - no painkillers so far and no significant pain.  I believe I have crossed into frozen territory!

      I expect I have now 6-12 months ahead of me, getting my right arm back to full motion.  As has been said on here before.  Every milimetre counts.  mark a spot on the wall and measure your progress daily, better or worse, and keep going. 

      I shall go easy on it for a week and then start to exercise.  I found a wonderful YouTube resource last time Shirley LeBed - LeBedMethod's channel.  Her exercises are gentle and seemed to do the trick.  It drove my husband nut's listening to it in the background - but hey, if ti works it works!

      Good luck all - my thoughts are with each and everyone one of you.

      Colette

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    • Posted

      Ive heard of a few virus ive not heard of.The thing is frozen shoulder is scar tissue, as with anything scar tissue can just grow. No one really knows what causes it. It could be the result of an injury, tendonitis hormonal diabetes. You look at the forums and the majority are ladies very small percentage are men they are ladies between certain age which could link to hormonal also my surgeon said their is a link in the diabetes i havent got diabetes but i got tested. Heavy lifting continuously; repetitiveness making the tendons becomibg inflammed resulting in scar tissue know one knows really what causes it.But i think more research needs to be done because of the painful nature of the condition
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    • Posted

      Fabulous out of sling since saturday morning ,no real pain although have taken paracetamol ibuprofen but that wa advised to help with the exercises but great, i start physio Thursday and get the stitches taken out just doing as im told but the pain has decreased big time im so pleased with it all i have slept great for the past 2 nights xx
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    • Posted

      Oh Karen !!!

      AWESOME !!!!!!!! So happy for you !!!!!!!!

      Remind me again - sorry - did you have both may and arthroscopic ???

      I wonder why some docs do slings and some don't....wish mine would ...

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    • Posted

      no i had subacromial decompression and capsular release brilliant they put you in a sling post op for 48hrs to help with pain and inflammation but they give you exercises to do as well. Its just how id expect it to be post op a bit stiff little pain x
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    • Posted

      Great insight and perspective. I think the viral connection is very likely. Hormones too play a major role, too bad science can't pin it down. I've learned if you want to gain insight and knowledge about this condition, forget the doctors, talk to people who've dealt with it. Thanks, Mike.
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    • Posted

      It's true the actual cause is unknown, but I've drawn a few conclusions on my own. First, I don't believe my type 1diabetes directly caused it. I believe I was more prone to it because of some kind of hormonal or endocrine factor that is probably also responsible for me getting the type 1 diabetes. The scar tissue definitely causes a lot of problems, but scar tissue is simply a response to some other underlying factor. To get to the bottom of it, it is probably programed into our DNA, then manifests itself into frozen shoulder, type 1 diabetes, thyroid problems etc. The fact that it is extremely rare to reoccur in the same shoulder twice makes me believe there is also some kind of immune factor involved. When I asked my doctor about it he said I think too much about it and I should just ride the condition out. Thinking about the cause won't make it go away he said. I told him more people need to put their heads together and figure this thing out, that way at least those affected would have an understanding why, even if time remains the only cure. Thanks, Mike.
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    • Posted

      Hi midonda,

      Gotta love these doctors ! Really ? What are you doing , thinking so much about a condition that completely disrupts your life. What are you thinking of ?? LOL ! Like the Doctor that told me to just go out and garden and I would feel better ! Seems there is no geographical limitation to the ridiculous.  I thought it was just goofy doctors in Washington. , Well and  the SF Bay Area  CA.  - lol  You are a better person then I in how you handle his comments - Keep on Keeping on !!

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    • Posted

      Thanks Karen. I'm actually thinking about switching to another doctor. We're just not seeing eye to eye. ☺
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    • Posted

      No, I think dotors are like that worldwide! Two of our's have said to me that 'it is presumed that most of the population are Vit D deficient'. One went on to say 'and we are only just beginning to understand just how important it really is'. eek Hello, can you hear yourselves?
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    • Posted

      i am very deficient, i spoke to my GP aboit this and policies and guidelines, of Vit D their is normal in range, then we have insufficient then we have deficient. i didnt have and miniscule amount most people will be insufficient.Im on a mega course i have to havev my bloods checked again in 2 weeks and may need a further course i was that low , but i was also B12 deficient and folate deficient all 3 doesnt bode well. i couldnt function i was sleeping for 16 hours a day waking up feeling like i hadnt slept i was also waking up every 2 hours tossing.and turning i had very bad brain fog skin was sore tingly pins and nedles blurred vision the list goes on. i put the sleep issue down to me not sleeping because of my shoulder and brsin fog because i was tired and morphine. i had been B12 Folate deficient before so went to my Gp started on inhections for B12 and forf olate tablets their was and initial improvement but i didnt seem to pick up so more blood test thyroid ok diabetes ok vitamin D none my GP said you must have been suffereing big time and hurt so im part way through and the difference is great see in the UK we dont get any sun hardly so most people in the UK are insufficient naturally. But as i recall i was in the Himalayas with my FS shoulder on a Geology field trip ascibtry not to let things get the better of me but i was up high altitude clear blue skies and strong sunshine andvi felt great almost hyperactive i had lots of energy was happy but even happier. 2 months of being back slippery slope back down now i hoping im.on the up where deficiencys are concerned and my shoulder has been operated on son i have everything is good i can get.my new rock hammer out and finally use it. The onlybreason i was also gettingb2 hours unbroken sleep was morphine induced sleep paracetamol ibuprofen didnt cut.it of a night time xx
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