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Who's had their FS the longest?

Posted , 8 users are following.

Chocolatebabz
Chocolatebabz

As I mentioned in another post this October will be the 4 year anniversary of my first Dr visit.

It begin with a dull ache that gradually got worse to the excruciating stage a lot of you have spoken about where every movement was painful and sleeping was near impossible.

Eventually it calmed down and I can now reach behind me to fasten a bra or get something from the back of the car.  I can raise my hand maybe 30 degrees stretched out forwards, less if stretched out to the side.  I can get a coffee cup from the second shelf (yay me!) and I can even sleep on it.

Apart from the loss of range of movement I can still get periods of pain, usually in the morning and very often when I have to drive or sit as a passenger in a car.  After one or two hours of having my arm by my side the pain usually dissapates and the rest of the day is OK albeit not raising it up past shoulder height.  Pain level can still be 6 or 7 out of 10 at peak.

I have learned to live with this and still hope that I will regain movement at some point.

Things I tried:

Couple of steroid shots, reasonably effective but short lived relief.

Physio until insurance stopped paying for it, helped with range of motion slightly and actually enjoyed going.  They always finished my session with a sports massage and were able to move my arm more than I could by myself.  Never overdid it, or caused me unbearable pain. 

Naproxen for maybe 6 months solid, helped while the pain was still bad and didn't have the heartburn effects of ibuprofen.

Self care - heat pads, every pain relieving cream, spray and patch out there, even got a home TENS machine.  All had slight benefits, none were a revelation.  Have now settled on Biofreeze spray as most effective and easy to apply by myself.

My doctor said that FS usually resolves itself in 9 months but could take several years so I still live in hope.  He was willing to do surgery which I declined out of fear (of the surgery and it not working) but also cost (Im in the US and at the mercy of my Health Insurers.

So anyone out there who has had this longer - anyone who had this awful condition just resolve itself.

I did something the other day to my other arm and felt a muscle twang, I immediately felt intense dread that I may have injured it and could get this in my other shoulder but think it was just a one off.

1 like, 14 replies

14 Replies

  • beverly52803
    beverly52803 Chocolatebabz

    Posted

    Mine took 3 years to thaw. My range of motion was good enough if not great at that point. However, there was a lot of residual discomfort. My neck on that side was always spasming, had  issues deep in my shoulder blade and could hold my arm up for limited periods (for instance drawing at an easel) for 9 years. I resigned myself to thinking this was as good as it would get until I tried a series of acupuncture treatments. The treatments themselves could get very painful, but as  massage and PT only brought temporary relief I stuck with the acupuncture. Happy to say I have no problems with that arm, shoulder or my neck any more. I did start to get a much less severe version of FS on my less dominant side and got acupuncture for that. Not sure if it prevented a full blown FS or if it would have resolved on its own in less time
    • Chocolatebabz
      Chocolatebabz beverly52803

      Posted

      That's good to hear.  There is an acupuncturist locally who seems to get really good reviews and I had been considering this as an option.  I just started taking the Tri-Flex supplement from GNC as someone else on here mentioned an improvement.  I'll give it a month and see if I notice anything then might try and get an appointment to try acupuncture.  Anything to avoid going under the knife.  

    • CynCash
      CynCash beverly52803

      Posted

      Hi beverly, I have been considering acupuncture.  I am on my second frozen shoulder, the left is 11 months in and the right about 6 weeks. The pain has resolved a lot on the left but still limited ROM.  The right is in the freezing stage and the pain is pretty rough.  It's a real bummer to have to FS's at one time.

      Did your acupuncturist use electrical stimulation with the acupuncture?  How many treatments did you have?  Was it a Chinese medicine doctor?  Thanks so much!

       

  • mari55790
    mari55790 Chocolatebabz

    Posted

    Wow thanks for sharing.  I’d prefer not to have surgery as well.  Someone mentioned they could sedate you and manipulate your arm, get the motion back, thus eliminating the pain.  Anyone heard of or tried this?
    • leya_xlll
      leya_xlll mari55790

      Posted

      Hi, that’s what MUA  manipulation under Anastasia  is. It’s a  short surgical procedure.   Whether it’s local or general  anesthesia is surgery.  They make a small incision, cut the adhesions/scar tissue, manipulate the shoulder, inject with  lidocaine,  steroids and Toradol  then you’re back to PT.
  • leya_xlll
    leya_xlll Chocolatebabz

    Posted

    Bless you, my right shoulder pain started in the fall on 2016, I bell if off until my left October of 2017. Miss Di with bilateral rotator cuff tears, I mean I new who tears both, but I had go Thur incorrect PT for it to get to an ortho. March 2018 DX with bilateral FS just by looking @ me, I got MRI to confirm. Back to PT. I’m now WAITING for MUA schedule. I think the orthopedic office staff is punishing me because they have to use my HMO rather than my PPO . I know how back office women can be.

    I hope they don’t ever get this....

    • Chocolatebabz
      Chocolatebabz leya_xlll

      Posted

      I had multiple x-rays and an MRI but it's been going on so long I’m at that should I go back and see the Dr or not stage.  Do let us know how the MUA goes, my Dr wanted to do actual surgery and go in and cut the adhesions.  I was hoping and praying this would just resolve itself if I waited it out.  Best wishes for a positive outcome and a quick recovery.

    • CynCash
      CynCash Chocolatebabz

      Posted

      There is a discussion on MUA on this Frozen Shoulder forum that you might want to read.  It seems that many did not really get the relief they were seeking from this procedure. 
  • FSconversations
    FSconversations Chocolatebabz

    Posted

    My first 'zingers' were in spring/summer of 2015, with a diagnosis & obvious "frozen stage" that fall. After reading TONS here, mostly during sleepless nights & in pain, I opted for the natural route of treatment without manipulation or surgery. I did have some guided cortisone & gentle physio (only to the point of pain for the purpose of retraining the muscles as the shoulder thawed.) My family doctor was super understanding & prescribed long-acting codeine for night and breakthrough codeine for day. I also used diclofenac gel (the prescription strength of voltaren), lots of heat, and tender loving care. 

    When the second shoulder stared to get zingers about a year ago, I knew enough to get guided cortisone right away! I've had several shots in it now too, as soon as I notice the zingers, and I still have full range. 

    My decision for choosing the "let-it-run-its-course" route was that it seemed that it was eventually just as effective over the same time frame as those who were healing from the more invasive treatments/surgeries. Another factor was that mine froze on its own, and not from some sort of major injury that needed repair. 

    • Kaptain
      Kaptain FSconversations

      Posted

      Thanks for the information.  Happy you recovered from this terrible disease.

      How long did it take for you to recover, and what muscles spasmed?

      I have had chronic spasms on my upper back for 6 months now and thus am trying to determine if I have FS too.

      Thanks.

    • FSconversations
      FSconversations Kaptain

      Posted

      Hi Kaptain - I didn't have spasms; my arm just lost its range, no matter what I did. 

      If you google frozen shoulder information, you'll see a 'parabola' shape of the process. This exactly describes my experience: the three phases - freezing, frozen & thawing. Freezing is the worst pain, frozen is the worst range, and thawing is the great hope as millimeters are gained. Keep in mind that I chose to let it run its course, which seemed to me from researching took the same time as with aggressive intervention...always months. 

    • CynCash
      CynCash FSconversations

      Posted

      What is guided cortisone?  Is it a regular cortisone shot?  I have two frozen shoulders, one 11 months in and one 6 weeks in.  The 11 months one has little pain but still limited ROM, the 6 weeks one is in the painful freezing stage.  I have read many people had cortisone shots that either didn't work or didn't last.  Thanks!

       

    • FSconversations
      FSconversations CynCash

      Posted

      Hi CynCash -

      The first time I had cortisone, it didn't work either. It was in the doctor's office & he did his best to inject it just by feeling around my shoulder joint. After reading on here, I then only had guided shots, meaning, they were injected much more accurately, under ultrasound or fluroscopy. Guided, the doctor can see exactly where the cortisone is headed.

      The other problem with my first shot was that the FS process was already quite far along, so it may not have worked anyway, even guided, considering all the adhesions. Cortisone seems optimal if given at the first signs of FS starting (aches & zingers) or during thawing (ROM returning). At least that's how it's benefited me! 

  • sarah72785
    sarah72785 Chocolatebabz

    Posted

    My first was about 5 years until it was acceptably better.  The second one I got hydrodilation after 2 months and this seems to have cured it (perhaps because I got it done early enough).  That was 3 months ago.  It feels better even than my 5 year old frozen shoulder.
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