i am 16 months into FS in my left shoulder. PT, injections, fluid distension and really no improvement. Now I think it's in my right. At first I thought maybe my right just hurts from over use as the pain isn't too bad and my rom is fine, BUT when I do those lovely fast movements, I get that crazy, debilitating pain. OMG, can this really be happening at the same time? Has anyone else experienced this at the same time? How in the world did you cope? Thank.
That definitely sounds like stage 1 creeping into your right side. There are a few people on this forum who've been there. I hope they reply, because that sounds absolutely horrible. I can only pray and wish you the best. I hope it isn't what it seems. 😢
I have had frozen shoulder it is very painful. The scan showed collagen build up on the top of my shoulder joint. The collagen continued to build up from an old injury and became unbearable. The dr used Xiaflex injections dissolved thru the cobweb like structure from the collagen build up in the shoulder joint area around the facia ligament tissue. Therapy and exercises helped get my arm movement back with no pain .
Im not sure if Xiflex injections will help you it worth checking into if your FS has the same causation.
TC&GB
Hi Slibby,
I don't have classic Adhesive Capsulitis (AC) in both arms. What I do have, is an old injury to my left, my non-dominant arm. I avulsed my humeral head at the surgical neck, basically I broke the ball off the long part of the bone, and it healed rotated upside down and backwards. After 3 years, it was eventually rebroken and plated and pinned. That was 12 years ago. It left me with extremely limited ROM and radial nerve compression. I learned to deal with it. Then started getting pain in my right arm a little over a year ago. I stuck it out until the pain became excruciating when I moved it the wrong way. I was diagnosed w/ the AC 3 months ago, but I have been warned to not use my dominant arm if I ever want to get back to normal ROM. I'm not coping great, so I can't answer your question, but sometimes it's good to know you're not alone.
Thanks for letting me know I'm not alone, but after reading these stories I kind of wish I was! We shouldn't have to just "deal with it", "suck it up" or "wait it out". I'm so sorry.
Hi sibyl,
keep going in for opinions there are options to help you thru this. Injections to cope with the pain to special arm and shoulder braces. keep the rest of your core strength strong wil help not add stress to your shoulder. I wen in weekly for pain injections. Helped thru the pain break thru. Then Xialaflex injection unlocked my arm.
TC&GB
TC&GB
It's hard for people to understand, I think. I'm a doer! Always have been. I'm sure you are too. I have four kids, their older now. I have two left in college. I used to be able to occupy myself with other things, one armed, but I did it. It took my mind off my other pain, but now it's impossible to take a proactive role in helping myself. I'm still in the pain stage, I'm getting my second steroid injection in a few days, and I already had a Toradol injection. We'll have to see how it goes. I'm lucky I have great providers. My pt is the same one I've been working with since my original injury. I'm in therapy 2x/week to keep neuromuscular spasm under control from my original injury. Patience isn't my strong suit. Hang in there. I hope you have overdone it a bit, and are not dealing with the AC in both arms. Has that been confirmed?
Michelle, no it hasn't been confirmed by my doctor but my physiotherapist did say it was FS. I have tried steroid injections and one injection with distension but it did nothing. I have three kids (4,6 and 7) so I just try to keep busy and forget about the pain.
My goodness, 4,6,&7! You have no choice but to keep busy. I was told by my doctors, that if I "overdo it" which really means just "doing", that I would run the risk of having limited ROM, in both arms, for the rest of my life. I'm used to working through the psin, but I've been told to stop. The hardest part is being a compliant patient.
I hope you have help, but I also know that asking for it is the hardest part. Reach out, if you ever feel the need to chat. I know sometimes I get tired of hearing myself say, "my arms hurt." When you're talking to someone who understands, and honestly someone who you don't know personally, somehow it helps. Finding this forum today has been a blessing. Knowing that someone else really understands, makes it a bit easier to unload. Thank you for that. I don't like that others are dealing with this, but we may as well try to help each other through it.
Be well.
It's important to rest and just THR weight of mr arm was painfu. I took a few days to rest wear a area sling and it was much better. Then carful protect your arms. It takes months to heel.xiaflex may be worth checking into for FS. It was approved by the FDA in 2014.
Hi,
I saw your post on the Xiaflex. I've already been looking at studies. I will mention it to my doc and pt. It's good to know that it is FDA approved. The few sites I saw were dated in 2013. I would imagine that I have to get through the pain stage first, before that is an option. Correct?
Great glad to hear your looking into it. It reall helped my shoulder, fingers and wrists.
TC&GB
OPPS.... forgot to address the pain ? I don't know how much pain you are coping with. I think that would be best addressed with your doc.
TC&GB
I already am. Like I said, I am very lucky to have some excellent providers whom I can trust. I like to stay informed, so it appears I have found a gold mine with information and support when I stumbled across this forum today. Thanks
I'll bring up Xiaflex to my doctor. I am in Canada so although seeing an ortho specialist is covered, I'm told the wait can be 6-8 months if I'm lucky. My gp won't refer me until I'm 18 months in (im 16 months now) so that by the time I get in I'm 2 years with FS. Not sure if my GP will help much on the Xiaflex front or if I have to wait to speak with an ortho. Physio doesn't seem to be helping much. Doesnt seem to be making it worse either though. Physio is out -of-pocket so I'm mainly just doing rom excersies at home and seeing Physio every 4-6 weeks to get new exercises. I may go back to the gp soon to see if I can get something more than over the counter pills for pain and maybe she'll start the referral process early. Fingers crossed.
I'll keep my fingers crossed for you. We actually delayed moving so I could stay near my doctors. One if my blessings is being close to Boston. We have some of the best hospitals in the world, that are often on the forefront of medical advancement. That's if they believe you. My fracture healed and stayed rotated for 3 1/2 years because I had 1 doctor tell me my pain and disfigurement was all in my head. I, finally, got the right imaging study and the correction was made. It's always something, isn't it?
Hi slibby:
I'm also in Canada. I had read on the forum earlier that Xiaflex was approved by the FDA (USA) so I wrote to Health Canada last week. It was approved here November 2015, but not for us: "As per records and Product monograph, XIAFLEX (DIN 02388316) is approved for the treatment of adult patients with Dupuytren’s contracture with a palpable cord." It will be interesting to see if your doctor is open to it anyway.
I needed to be on codeine for 3.5 months so I asked for it without Tylenol. That way I could choose to take the straight codeine with either Tylenol Ultra for day (it has caffeine) or a muscle relaxant at night. My doctor offered me regular codeine & long-acting too, both in the lowest dose, so I could manage the pain as needed. Such a difference once I got that prescription, though it's better to be done with this altogether of course!
Liane
Liane, thanks. It will be interesting if my doctor will consider using Xiaflex for my shoulder. Unfortunately, I cannot take codiene. And NSAIDs trigger my colitis so I'm really stuck. I started Tylenol arthritis today as the pharmacist said it should last longer than a normal Tylenol. I think I'll have to see my doctor soon for something else. But I don't know what she'll prescribe other than a narcotic which I'm not so sure about.
Oh sorry, yes, I recall now your saying that about codeine. If you can't take oral NSAIDs, you might get away with Diclofenac gel. It's the stronger prescription strength of Voltaren for rubbing on the shoulder to reduce inflammation locally. I hope your doctor can think of a pain patch or remedy of some type to give some sure relief. Keep us posted. Liane.
Hi,
I was wondering if you could let me know what type of injection you received on a weekly basis? I recieved a cortizone injection, specifically depo medrol, 1 month ago. Within a week of having the injection I went from having non-stop excruciating pain to almost complete relief. Unfortunately the pain started slowly creeping back in about a week ago and it is steadily getting worse. My orthopedic surgeon is very conservative with steriod injections and will only give them every 6 months. If the pain comes back full force again, I cannot fathom waiting 5 more months to have another injection :-/
Also, you mentioned a shoulder brace? Is this something you can get over the counter or did a Dr. provide it?
I have been suffering with FS in my left shoulder for a couple of months and I feel it coming on in my right shoulder. Trying to learn as much as I can now so that I'm more "prepared".
Thanks so much!