3 years FS still have extreme tightness with scapula and side pain

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Hi, I was diagnosed with right FS 3 years ago and underwent 6 months painful physiotherapy. During this time my upper back became really tight like being in a straitjacket and I developed severe pain in my right scapula, right side and ribs. I cant sit back in a chair or lie down on a bed without being in severe pain. Every time I sit back I get severe pain in my scapula followed by pain in right ribs and under armpit. This has been the same ever since and I despair that I will ever get away from this pain. The consultant said this was all part FS.

After the physio my ROM in my right arm was quite reasonable so I was discharged by the consultant even though I stiil was in pain. 2 1/2 years later I am still suffering and dont know where to turn as I just cant rest because of the excruciating pain when I sit or lie down. Doctors seem to have forgotten that these symptoms were once labelled as 'part of FS'. Has anyone else had similar experience or can offer any advice as I am so desperate for help.

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  • Edited

    Karl really sorry to hear you are suffering so badly and for so long,I am only 6 months suffering with FS and I really find it a struggle.Have you tried any steroid injections?.I have had 2 so far but they unfortunately haven't worked for me but for a lot of people they do.I have an appointment for hydrodilation coming up that is meant to have a better success rate so I'm hopeful that I will get some relief from that,I have bad ROM too so hoping it will help that too.

    there are other people on this forum that have had FS longer than me and I know they will give you some other ideas to help you.

  • Edited

    morning Karl

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    welcome to our little FS gang.

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    was your frozen shoulder type 1 or 2, just happened out the blue or injury related

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    yup its a pain isn't it. strange that some people get FS and recover over 18 - 24 months. some people it just don't go away and pulls you down.

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    so your a three years old on this. like me just a handful of months away from 4 years. i just cut to the chase and paid for the full release and removed the capsule.

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    i have read up on PFSS. ever herd of it its persistent frozen shoulder syndrome.

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    I have really struggled with both shoulders freezing up within the first year of injury and all the associated aches and pains go with it.

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    I have an extensive sports physio every week since January 19. working on the serratus anterior rib muscles. latissimus dorse arm pit muscle and the scalenes neck muscles. and the mist important shoulder blades.

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    all these muscles are indirectly connected to the shoulder capsule in one way or another so if you have a frozen shoulder all these muscles show off in sympathy.

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    I call it the rack when I go to physio as it is so painful in the early days to break through the muscles and loosen them. my shoulders were like train tracks with knotts.

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    she using elbows and thumbs when I go to physio as it is so painful in the early days to break through the muscles and loosen them up in a good way using.

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    its been a very costly experience. lonely and personal and occasionally dark when you cannot see the light at the end of the tunnel.

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    tell us about your going on's over the 36 months as it helps everyone here.

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    also look back over the past posts for ideas.

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    fellow FS sufferer

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    colin

    • Edited

      morning piper.

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      this month for ya jab

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      sooooooon

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      colin

    • Edited

      so disappointed that Michelle only got another steroid jab and not a hydrodilatation.

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      so much more effective. ( had three ). 2 left and 1 right.

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      roll on the 23rd !!.

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      finally got to a good place now. asked the GP for another 8 weeks to recover. think he will do 4 at a time.

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      i have 4 weeks left using the 2kg weight. i just cannot get exited over the weight any more lol

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      then next 4 weeks rebuilding the shoulder core strength all over again

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      c

    • Edited

      sorry karl

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      piggy back your post talking to piper.

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      come on Michelle introduce your self as well.

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      c

    • Edited

      Morning folks, hi Karl, im Michelle, a fellow FS sufferer and in regular contact with Piper and Colin who are doing amazingly well.

      My problems started last year, menopausal, diagnosed with Fibromyalgia, under active thyroid and then came the shoulder problems.

      My shoulder felt like it was coming out of the socket. So much crunching, clicking and grinding, which I still have.

      The pain also started last year and then in Oct 21 the whole shoulder locked up. It is pain and discomfort I have never experienced before. Like Piper I had a steroid jab in November which did nothing. By this time I was literally crawling the walls. Couldn't sleep as couldn't get my arm in a position that would ease the pain. It's hell on earth. I was on 30/500mg co-codamol and Naproxen, it helped somewhat. Hubby had to sleep in the spare room. Night times I was surrounded by pillows trying to prop the arm up. Sleeping on my back became the only way I could get the slightest of respite.

      My hubby has been a great support, as Colin said, they are dark and isolating times and nobody truly understands the pain and frustration from the lack of ROM.

      Despite being in agony, my hubby pushed me to exercise it. I used a tension band and a selection of weights up to 5kg. There are loads of YouTube videos to help. I continued to power through the pain to try and release the shoulder and also to try and stop it getting any worse ( if that was possible)

      Last week I had another steroid injection guided with an ultrasound. It hasn't made any difference.

      As I have said to Piper and Colin I'm no longer in pain with mine, its still frozen, but not as bad and my ROM, like Colin is probably about 80%, which given where we've come from is nothing short of a miracle.

      I continue with my weights, my shoulder continues to crunch and grind but I'm not in pain, other than ached associated with my Fibromyalgia. I can sleep through the night I'm off the pain relief and living a relatively normal existence with the arm.

      At its worst my days were so dark, I didn't believe things were ever going to improve. It was a struggle just to get dressed in a morning. It really is an awful condition.

      Keep the faith Karl, push on through the pain no matter how much it hurts. You've almost got to try and show it who's boss like Colin has. He is remarkable and his story is worthy of an Oscar.

      We check in regularly with each other on here and support where we can.

      So that's my story, happy Saturday everyone 💪

    • Posted

      wow

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      you did have time to kill michelle.

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      war and piece lol

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      cocktail o clock

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      colin

    • Posted

      lol bit of bed time reading.

      Just wanted to try and demonstrate that there is light at the end of the tunnel no matter how bad it gets.

    • Posted

      Hi Colin, I have trawled through all 24 pages from this group trying to grasp something similar to my situation. I get severe pain from the serratous and latimus dorsi. I used to get pain in levatus scapuli but not so much currently. The constant is the pain behind my scapula and this is what bothers me most as it means I cant rest during the day nor at night. Have you experienced this pain with your scapula when sitting or lying down. Unfortunately I cant lay on my side because my ribs hurt so it is a big issue for me.

      I have spent a lot of money on accupuncture,physios,chiropractor and now osteopath but am still no further on. My GP has mentioned referring me to orthopedics but I dont know if a shoulder specialist orthopedic would be better ( there are none locally but would travel).

      I did pay to see a shoulder specialist 2 hours travel from home last month but he told me there was nothing wrong!! 3 days later I had ultrasound scan on both shoulders which showed really bad bursitis on both shoulders !!

      I have just seen a very highly respected osteopath who gave me a going over similar to your description so we,ll see how that goes. I am seeing him again next month. Any comments or advice would be most welcome as at times these issues have sent me into a dark place as well.

      Thankyou again

    • Posted

      hi Karl

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      ho Michelle i am not the boss

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      just suffered lots and lots.

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      its only the past 18 months that team colin as i call the have come together.

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      i have thrown the kitchen sink at my shoulder so to speak since 2019 jan .

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      i think getting the muscle to work in unison. and fire at the right time and place. i had two physiotherapist that worked alternate.

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      on the rack sorting the knotts and spasms. and i mean lots and lots with the physio boss.

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      then an orthopaedic sport physio targeting the group issues with specific exercises aimed at recovering posture in movement..

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      then i had the Harley street consultant. Alun yewlett from the armdoc gang and a msk specialist. he doesn't use the surgical stuff for shoulders he invents them . ( google shoulder mi eye)

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      then over seen by vipul patel at the SWLEOC shoulder hospital. also in the armdoc gang.

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      he removed the shoulder and sorted it all out . twice now tendon issues.

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      all these coming together have sorted it out alas at a massive cost. my shoulders are my living as a carpenter.

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      honestly i think you should seek a MSK specialist. muscles and bones are their area.

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      google all the name drop i have done and see what they can achieve. it may be a direction to go.

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      colin

    • Posted

      your on 5 kg so jealous. still 2 kg for next 3 weeks.

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      feel so inadequate lol.

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      better not give you an arm wrestle michelle.

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      c

    • Posted

      Hi colin, thankyou so much for your kind reply. Is an MSK specialist the same as physiotherapist? I dont know of any such in the area but there are physios obviously. Funnily enough I was going to see Mr Yewlett at Lincoln which is not too far away but someone recommended a different shoulder specialist which was a disappointing waste of time and money as I outlined earlier. Maybe I shall have to arrange a consultation if the current path doesnt yield any results. Thankyou for that information, most helpful.

      kind regards karl

    • Posted

      sod mate thats spooky

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      yes he works out of lincoln as well . a very clever man. well worth a visit. he kind of invented the mi eye procedure.

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      and a MSK specialist is kind of top of the pile when it comes to knowing whats up. with the interaction between muscles and bones ( your winged scapula)

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      he is a musculoskeletal ( msk) person. top division. a physiotherapist is kind if division 2.

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      cut to the chase would recommend him any time. he has a great team behind him

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      dont vanish. keep us up dated. as it helps so many people on here

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      colin

  • Posted

    Hi and thankyou all for your replies. My FS came on out of the blue, just a stiff arm and progressed. I had a blind steroid injection in the early days and have just had U/S guided injections in both shoulders for bursitis.

    After I was discharged for FS I wasnt seen by anyone all through the covid nightmare which I think has seen my problems get well entrenched. I had accupuncture for a year but it made little difference. I saw a chiropractor who said they could do nothing for me after 3 weeks and told me to ask my GP for diazepam! I have seen 2 different physios without success. My most recent physio said my scapula is winging and not held in place properly. My GP last week said it was fibromyalgia but I have had 5 professionals who said from their experience with fibro patients it definately isnt.

    I just cant sit back or lie down without pain behind my scapula and its associated muscles as described by colin.

    I have just seen an osteopath who said straight away my FS had never gone away and yesterday he gave me a really good going over similar to what colin described.

    I do feel it is due to scar tissue and tight muscles which is pulling everything out of sync but getting anyone to believe me in the first instance has been tough as has finding someone to sort me out. My osteopath has a very good reputation so I am hopeful he can help me.

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