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2 shots, no relief yet!

Posted , 8 users are following.

karenus
karenus

I am brand new to this forum and have never participated in a forum before! I was diagnosed with frozen shoulder about a month ago after waiting about 4 months to go to see a Dr/orthopedist. Long story short: I happened to ask my OB/GYN if there was some connection between what seemed to be some perimenopause symptoms and the fact that I had been having back pain and shoulder pain at the same time. (Now my hip hurts too...) I wondered aloud if maybe it was all hormonal somehow and she gave me a funny look and a meandering answer that ended with "we really just don't know." I didn't think much of this until I told a friend that I was going to a Dr to see about my shoulder. She proceeded to tell me that she had rotator cuff surgery and while in PT for that, she developed frozen shoulder. She discovered that her estrogen levels were very low, she went on HRT and "within a few days" felt more movement and relief for her shoulder. 

I am upset and amazed that SO many women have had these experiences, yet there is very little information out there and the recommended course of treatment is always Physical therapy.

I completely understand what others on this forum have been sharing related to pain etc. I am a yoga instructor and need to be able to move my arms!!! 

I have some appointments in the future with some recommended health care folks and will post again if I get some helpful ideas/meds etc. I have some additional issues that may make taking hormones an issue, so I am hoping for some ideas related to diet, supplements and herbal remedies that might help me out.

 

2 likes, 35 replies

35 Replies

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  • alison41082
    alison41082 karenus

    Posted

    I had surgery in June for labrum tear and bicep then 2 weeks out of surgery got the worst froZen shoulder I am 47 and do feel hormonal things going on! I just had my physical I am interested to see if my estrogen is low! I'm actually going to be p*ssed if that is the reason I have been suffering for 4 months and now am headed back to surgery for mua and capsule release to find out it could have been prevented with a blood test and some estrogen control! Why can't they figure this out! Thanks for the info ! Is your shoulder really frozen I have hardly any rom and have already endured 31/2 months of physical theropy with zero improvement!

    • karenus
      karenus alison41082

      Posted

      I have had shoulder pain that has gotten worse (and my range of motion decreasing) since April...so a good 5 months. I have a horrible feeling that I am still in the "freezing" stage as PT has done nothing so far (and my PT has recommended backing off from most of the initial exercises as he feels it is aggravating and adding to inflammation at this point). I am a yoga teacher, so I probably started with more rom than most. Again, my PT states he has seen people much more locked up than I am, but it still hurts, as you are well aware!! My biggest pet peeve of the moment is the question "What did you do to your shoulder?" Answer: NOTHING!!! I have had some recent testing and estrogen is indeed low...so now I need to hear from my medical folks about what they can do to address this. This is no coincidence as far as I am concerned. Good luck with your recovery. I'm so bummed that this is so prevalent with very little that seems to be effective to address it.

  • hope4cure
    hope4cure karenus

    Posted

    Xiaflex is a protien that eliminates the extra collagen build up the system makes in the facia tissue in the shoulder capsule. The injection was given then two days later the dr manipulates the shoulder . After therapy and 8 months later I Have full ROM and no pain after years of disfunction and pain.

    Frozen shoulder (adhesive capsulitis) is an inflammation and thickening of the shoulder capsule causing a loss of range of motion in the shoulder. It is known to be caused by trauma but there are other unknown causes. I had many traumas to my shoulder. It worked for me . 

    For more info see online.

    • wall1409
      wall1409 hope4cure

      Posted

      Hi

      i live in the uk and never heard of this treatment. We are offered steroid injections which in my experience definitely don't work. Im finding out tomorrow what my options are

    • karenus
      karenus wall1409

      Posted

      I am in the US and have had 2 steriod injections...the second one was ultrasound guided. No benefit to either shot that I have noticed. I wish now that I had asked the Dr how many patients actually report relief. The pain and limited mobility have made me pretty willing to try anything! They were not cheap and a waste of time for me. 
    • jull
      jull karenus

      Posted

      i did two shots which also did nothing for me and i think the second actially made things worse.
    • hope4cure
      hope4cure wall1409

      Posted

      It is approved in the UK. See online under the name of the drug Xiaplex/Xiaflex and frozen shoulder.

      i also had cortisone shots it helped with swelling. 

      Look uner the manufacturer online for a dr trained in your area. 

      Thats all I did. 

      Good lich and hope your feeling better soon.

  • jull
    jull karenus

    Posted

    See if you can do mua. That will help get some range of motion back you will have less pain. Then you will need to do pt to get the rest of your Rom back. It is 4 months since I did it and I am mostly pain free and have almost full range of motion back.
    • wall1409
      wall1409 jull

      Posted

      Thanks Jull

      Seeing surgeon tomorrow but I know it's going to be luck of the computer with trial but I'm going to ask for operation or manipulation as I struggle already with an arthritic spine

  • sue35966
    sue35966 karenus

    Posted

    I was told by my Orthosurgeons assistant, FS is seen alot in women that are at the onset or the end of menopause, and it was hormonal.

    I think the medical community needs to educate women to this as she starts entering the menopausal stage. I too had FS for 3 months before my diagnosis- and during that time I seen 2 md's and 2 physical therapists.

    It was when I went to the Orthopedic I was diagnosed.

    I do take turmeric w/ black pepper  for mild arthritis and my FS, as well as a few medicines to manage my pain (for sleep, relief and therapy).  If you are interested in knowing more- post and I will let you know

    Patience is part of the FS experience per my PT.

    Sue

     

    • karenus
      karenus sue35966

      Posted

      I have read that tumeric can be helpful as it has anti-inflammatory properties. Others in this thread mention MUA...I don't know what that is? Surgery? From the little I have read, it seems that Estrogen is the oil that keeps everything supple, and I definitely feel like the tin man! In addition to FShoulder, I have had back pain and now knee and hip pain....all after NEVER having any of these issues until this year. I have had no injury and it simply seems that there is something else "systemic' going on. I have an appointment tomorrow with a holistic MD and I am hoping that she can provide me with ideas to address my concerns. I don't have other issues like hot flashes and sleep disruption (I have taught myself to sleep almost entirely on my back, so I sleep soundly until I move!) so the Drs seem to be confused about what to do for me. Seems bizarre when so many seem to have had similar issues.

      I saw a book title yesterday that had menopausal arthritis in the title....anyone have info about that? Is it related to frozen shoulder in any way?

    • jull
      jull karenus

      Posted

      mua is manipulation under anesthesia. they put you under for about 10 minutes inject pain meds and a steroid and manipulate the arm to break everything up that is freezing your shoulder. after you do pt everyday to get back your rom. for me it really helped. almost immediatley less pain and more rom. still in pt three months later to get 100% back  
    • karenus
      karenus jull

      Posted

      Good to know. I hope I don't get to that point. I am trying to be patient with the process, but this does impact my ability to do my part-time job as a yoga teacher. I work on my own, so I cannot simply have other people teach my classes. It breaks my heart to be unable to bend and move freely like I used to. Because I started out pretty bendy, I think I probably have more rom than some others with Frozen shoulder, but I have lost an amazing amount of movement for me. I tell my yoga students to modify poses all the time, so I guess I am providing them with a good role model for this right now!

      I'm trying to educate myself and learn as much about this and the various potential treatments so that I can advocate for myself the best I can.

    • karenus
      karenus sue35966

      Posted

      Sue,

      I wrote in another thread that I did see my new Dr yesterday and she agreed that my frozen shoulder was part of an inflammatory response and that my sudden drop in hormones was the likely culprit. I will be starting with some progesterone for now and she has recommended fish oil, another supplement, accupuncture for pain with the shoulder and an anti inflammatory diet. If nothing else, I will be healthier, but I am hoping that all this adds up to a quicker resolution to my frozen shoulder. That's probably why these ideas get no traction, as it is unknown how long my frozen shoulder will last and if it is shortened by these things I am doing or if would have resolved anyway.

    • hope4cure
      hope4cure karenus

      Posted

      I also wore a shoulder stretch brace at night see online for one piece type. It slips over shoulder and keeps it from moving.

      google shoulder stabilizer . Really helps with sleeping also Tylenol is a big help.

      i know it miserable lived with it for years. Xiaplex was a life savor. It was collagen build up in the shoulder capsule area than restrains ROM. 

    • beverly52803
      beverly52803 hope4cure

      Posted

      Have never heard that it was collagen. Was speaking with someone today who told me about calcium build-up in his shoulder that caused what sounded like FS, but I'm not certain. He said he had to have injections to counteract the calcium.

      I know scleroderma is a condition caused by too much collagen. I usually start learning about problems if I or someone I know develops them and FS was some time ago for me. I certainly was never offered Xiaplex which I just googled & learned is given to people with Dupuytren's contracture which I have in one hand! No mention of frozen shoulder that I saw Perhaps there's just more information available now thanks to the internet. I find it very helpful rather than depending on reluctant doctors to keep you informed.

    • hope4cure
      hope4cure beverly52803

      Posted

      Sent you a private message to help answer your questions to links for Xiaplex.
    • hope4cure
      hope4cure beverly52803

      Posted

      Sent you a private message for more info on a link for,Xiaplex and treatment for FS.
    • beverly52803
      beverly52803 hope4cure

      Posted

      hope, two P.M.'s arrived but both said the patient page wasn't working, try reloading, but that didn't work either.

      first time I've had that happen. not sure what's up.

    • hope4cure
      hope4cure beverly52803

      Posted

      I have the same issue. Sometime I write in email on mu iPad copy & past to pm page waiting. 

      Evev could go go to side bar to small X push on X then a page comes up from the forum asking to eliminate advertisements for $2.99 .

      adds & videos take up lots of rem. Also be sure all programs are updated to run properly and shut down your device . Sometime programs are running in the background take up time space rem and time out the page, then the page reloads on auto. Very annoying. So sorry everyone has experienced this from time to time.

      ill pm you.

    • beverly52803
      beverly52803 hope4cure

      Posted

      sorry, but I haven't a clue what you are saying here. I am anything but tech savy. your private messages were the first I have had a problem receiving.

      no interest in paying money to avoid ads. if ads eventually become a problem I would stop using the site, but thanks for your attempt to expain.

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