There is Hope: I am Thawing. Here's what I did

Posted , 15 users are following.

I am officially thawing! I don't want to jinx this because I have a real fear my hips freeze one day (I've had some minor hip discomfort lately but that could just be because I go on daily walks and I just tweaked something), but my shoulders are thawing. I see light at the end of the tunnel finally.

Little background: in my 33rd year on this planet, my left shoulder became symptomatic on June 6th, 2016 (I keep a journal so I know the exact day this started) and has been in pain until about only 10-14 days ago. It's been thawing maybe for the last three months or so at least, but the thawing phase has been painful for me. They said it wouldn't be painful at this point in the process, but the "experts" are obviously clueless about this disease. The thawing phase has been painful for me.

As I said, the pain first started to go away in the left shoulder only about 10-14 days ago. I suddenly have some mobility again too, but not much: no external rotation still and I can't come close to lifting my arm above my head, but at least the shoulder "folds inward" now when I raise the arm. For a very long time (two years or so), the upper part of the shoulder did not fold inward when I attempted to raise my arm. The entire thing would simply move as one.

My right shoulder became symptomatic in early December 2017 and has began thawing in just the last one or two days, but is still mildly painful. It is clearly "folding inward" as well when I attempt to raise my arm up though, so that's a clear sign to me it's also thawing. I wish I knew the exact medical term for what I'm trying to describe. The right shoulder also has zero external rotation, but has more overall mobility than the left shoulder (probably because I realized with the second frozen shoulder to not listen to my doctors).

The treatments I've done: The first series of shoulder doctors I saw all insisted on intense physical therapy, so that's what I did for months from around March thru August of 2017. I did a short round of prednisone too during that time. The most aggressive procedure I had done was in June of 2017 when I had two PRP injections into the left shoulder: one into the bursa and one directly into the capsule itself. The executive summary of all these things is that they made everything significantly worse and if I had to do it over, I wouldn't have done any of this. These doctors were and are absolutely clueless about how to treat adhesive capsulitis. Prednisone didn't have any negative side effects, but it was totally ineffective for me I think. It was during this period where my left shoulder felt horrific every day. I describe the feeling as "rotting from the inside out." It was a very scary feeling. It felt like my arm would fall off every single day, and this intense pain lasted over a year.

On December 23rd, 2017, when my right shoulder was just in the beginning stages of freezing, was the day I realized that this is a disease and not an injury. I had read many blogs that said people realize after a while to do nothing, so on this day (according to my journal) I decided once for all to stop messing with it. On December 23rd, 2017, I decided I would officially "do nothing" and let the disease run its course. My doctors looked at me like I was an idiot. They treated me with disrespect. Numerous people in my life tried to pressure me into surgery and/or physical therapy, but I blocked them all out. At that point, I knew my best option had to be to "do nothing." I had to do what I had to do. Period.

Today is November 17th, 2018, and the pain in the left (first) frozen shoulder has finally gone. As I said, it's been thawing for several months already, but the thawing phase has been painful; not as painful as previous stages, but still painful, especially when "testing" it out. I wasn't sure if I was supposed to be rehabbing it when it started thawing too, but I ended up choosing to continue to do nothing. I think that was the right choice, but I have no idea. Keep in mind, a lot of what I'm reporting here is just my anecdotal experience.

The second frozen shoulder was still painful but not nearly as bad as the first. Why that is the case is anyone's guess, but here's what I did for the second one: I never once did any physical therapy for it. I did do a round of prednisone for six days early in the freezing stage, so maybe that helped, but at the time, I felt it was useless. Other than that, I just iced it when it hurt a lot or took a pain killer. I only took pain killers maybe once or twice a week to avoid dependence. It's a little short of a year since the right shoulder started to freeze, so clearly it's been much milder. The first frozen shoulder has taken 2.5 years to reach the same point. The second shoulder was still very, very painful and brutal but it never reached the extreme heights of pain or chronic length of the first one.

Starting in April of 2017 or so I began taking regular vitamins: a daily multi, magnesium, omega-3, vitamin D, and vitamin K. I did take MSM maybe once or twice a week. I tried glucosamine and chondroitin as well, but for maybe only two or three months before giving it up. I've been taking flaxseed oil with omega-3 pills over the last month or so. I've also drank occasional tumeric shots over the last month or so.

Oh yea, I took aleve sometimes over the course of the last 2.5 years too. I'm not sure if that helped it heal, but it would reduce my pain sometimes.

I tried to eat healthy foods during the last 2.5 years, but I often just comfort ate bad food because that helped me psychologically. I gained 30 pounds in the last 2.5 years, so I comfort ate a lot and sat in a comfortable chair using my computer for many, many hours. For a long time, even just walking around was painful on my shoulder(s). Even in the last two-three months during my regular walks, there would be pain, but I could tolerate it. I knew it was just a symptom of the disease, so at this point, I just continued my walks. As soon as the walk ended, the pain would subside and go away within fifteen minutes. The only reason I would "push through" in this situation is because I came to the conclusion a few months ago that this type of pain wasn't making anything worse. I felt the benefits from walking and getting some sun outweighed the mild pain I would get while walking. I've since been able to lose 11 pounds in the last two months, so that's good.

Anyway, I have still very limited mobility in both shoulders. Hopefully they keep thawing. I have no idea what the next few years will bring with this and how much mobility I'll ultimately regain. But there is some hope now.

I have no idea if the things I did made this better or worse. It's possible that we all have varying severities of the disease and that our genetic makeup largely determines the length of the illness. I really don't know. But this is what I did and am continuing to do. I'll continue with my regimen of vitamins and (mostly) healthy eating. I enjoy going on daily walks so I'll continue that as well. And whenever I feel ready for it, I'll get back into the gym and gradually start rebuilding my upper body which has atrophied quite a bit.

Thanks for reading, guys. I will follow up this post with updates at some point. As I said, the right shoulder is still painful, but it's very very tolerable pain. It's nothing I can't handle at this point as I'm obviously used to much, much worse.

There is hope. You can't see it now, but there is hope. Please hold on to it. Don't let it go. Please don't let it go. I'm with you in spirit, wherever you are. A lot of us are.

PS- A small note on what I mean when I say "doing nothing." I let my arms swing when I go on walks. I was able to still carry grocery bags, but that type of action doesn't require any shoulder mobility. I did stuff like that, but I wouldn't move it all around or stretch it ever. If walking was too painful, I would just sit down and start icing it for twenty minutes to help it calm down. During the most painful stretches of the disease, I did as little as I possibly could. I've probably watched every good movie and TV show ever made in the last 2.5 years to the point where I ran out of decent entertainment a few months ago. I read so many books. Blood Meridian was my favorite during this span of time.

PPS- We are all connected by this disease. I will update my progress here one day, hopefully with more positive news.

3 likes, 22 replies

22 Replies

  • Posted

    It's absolutely necessary that I update this thread. My return to golf in the late fall of 2018 completely failed and it was only a matter of weeks until the pain was so great that I had to stop again. It was a miserable period of my life, but then again, since I first started getting symptoms of frozen shoulder in June of 2016, it's not like I didn't know that pain all too well.

    The pain finally went back down again by March 2019 after a couple months of "doing nothing" again (I stopped golf and activities in early January 2019 and only was able to hit golf balls twelve times in an eight week period before the pain was too horrible). But in March when the pain calmed down, I attempted to move my shoulders around again and nope, still frozen. In fact, my left shoulder started to feel like it did when the symptoms first started ramping up, as if I was back inside the first year again. My right shoulder was worse. Awful situation.

    I ended up getting really lucky and finding an amazing surgeon. He performed arthroscopic capsular release on the left shoulder (plus fixing bursitits) on June 27th, 2019 (yea it took me a while to mentally gear up for this). Like everyone says, rehab is horrible (I cried a couple times due to the pain), but in nine weeks, the shoulder felt great. Obviously, your mileage may vary and I'm still rehabbing it as I write this, but it's got nearly full range back and it gets stronger every day. My surgeon is amazing though (Nike sends a lot of their athletes to him). He then did the surgery on my right shoulder on September 9th, 2019. I'm a full eight weeks removed from that now, and the PT is still grueling (this Monday stunk ugh but I got through it), but it's getting better every week.

    Surgery was absolutely not just the right move but the ONLY move. I was going to be disabled for life with this disease had I not gotten surgery. Make sure your surgeon is legit and make sure your PTs are legit though first. Getting better from this long term disease is EXPENSIVE, with time and money. PT seriously I'm there like two hours each session quite a bit, and I have to stretch it on own everyday like 15-30 minutes at night (sometimes more), and since I'm also rehabbing my entire body now from the years of sitting in a chair because of this disease, I'm also rehabbing everything else. I devote a good three hours EVERY DAY to getting better. But I'm 100% all in mentally and even all these months later I have zero loss in motivation. In fact, I would say I'm more motivated today than I was four months ago.

    So yea, my left shoulder is legit back to normal just four months removed from surgery. It's amazing. My right needed a decompression and a slap tear repair too so it'll probably take a bit longer. But it's getting there. And I know rehab is constant and everyday, but hey, at least rehab actually WORKS now. That's gotta count for something, right?

    Um yea, so as much as everyone seems to like that famous Frosty post here where he writes "hey don't worry it'll get better in time," well, that's actually false. 10% of you reading this aren't going to get better unless you get this surgery. Sorry, but it's a fact. I'm one of them. I'm also one of the lucky ones who had successful surgery. Twice. I got the surgeries 10.5 weeks apart too, so you can imagine how intense that was for me. I got through it though. It helps to have loved ones who will help during those first two weeks post surgery btw. After that I was okay to do things on my own even though it didn't feel "good" until nine weeks post-op with the left. The right still doesn't feel "great" but it's progressing well. It feels way better now than it did when it was frozen though, that's for sure. Night and day.

    Oh yea, and the surgeon and his colleagues all said I was the worst case of adhesive capsulitis they've ever seen. "Thick as a ligament" they said the adhesions were. And that "no amount of physical therapy was ever going to solve this problem." Again, my surgeon is a super star, so I'm inclined to believe him. World #1 golfer Brooks Koepka just saw him recently and I spent some time rehabbing alongside him (Nike did their homework on this surgeon). I'm at an amazing rehab center too. Brooks is rehabbing his patella though. I rehab with MLB players too (like I said, this place is awesome). One of the other surgeons at this place is an Astros surgeon as well, and he's apparently great at capsular release too, or so I've heard.

    Anyway yea. If you've had this problem for over two years and there's no end in sight? You probably need this surgery. My surgeon won't even perform the surgery if you haven't had it for at least 1.5 years, and I concur with that since so many of you guys just seem to get better in time or with plain ol' PT. But the sad fact is that for 10% of us, this ain't getting better in time. You gotta burn off the adhesions arthroscopically. And knowing what I know now about this disease, I seriously question those who get better just on their own. That's not really how the disease works, especially if you understand the disease's cousin Dupuytren's contracture. Look it up, they're genetically similar. I get it, a lot of you guys do just magically get better, but if you're a legit severe case (10% of us), it's never ever ever getting better in time. There are so many poor souls who just have this thing for life. I honestly have no idea what a self-limiting frozen shoulder feels like. And if you had a self-limiting one, then you don't know what it feels like to have one that never goes away. Honestly, I wonder if they're even the same thing since a shoulder can lose ROM for many different reasons.

    Anyway, I'm not trying to make anyone mad here. This is just my feeling on the subject. Take it for what you will.

    Find an amazing surgeon... though to be honest, it's not that complicated a procedure for surgeons. Still though, you don't want some sociopath cutting into you. For us the patients, the recovery can really stink depending on a number of factors, but I'm doing amazing now. Nowadays, I eat the keto diet, vitamins, I get great sleep, and I've lost like 30 pounds over the last year. I no longer look like a lump because of years of frozen shoulders atrophying my physique due to inactivity. It's truly amazing how in a couple months I will be back in the gym for real and once again on the road to being strong, healthy and happier than I am now, but seriously, I'm the happiest I've been probably in my entire life these last few weeks. It's a new lease on life and I don't plan on wasting it.

    Forget the chiropractors, they're clowns. The quick fix stuff? Snake oil (although some Dupuytren's experimental injections could hold promise, but those aren't approved yet). Some of you just gotta jump through this fiery hoop called capsular release. But honestly, do the research yourself. This surgery has a really high success rate even though some of the posts on this forum may suggest otherwise. Just avoid the butchers and cowboys, find a surgeon who knows his business, and just schedule it and get it over with. Like I said, PT is almost a full time job, but hey, you want to be back to 100% again right? I've wasted too many years just waiting for this to go away, and frankly, I'm not going to waste any more time. Life is too short.

    I might not attempt golf until December 2019 though... Rehab is going so well, I just want to stay on course and get stronger for the rest of this month at least. Wish me luck, guys. Tomorrow I got 1.5 to 2 hours of rehab at the clinic, then I'll do a total body stretch for an hour whenever I get home later that day plus probably two more fifteen minute right shoulder stretches later in the day. Eating a sugar free, low carb diet I believe is helping recovery as well, but who knows. I'm not kidding when I say I am the happiest I've ever been though. I appreciate where I'm at now so much.

    PS- I live in West Palm Beach, Florida, and my surgeon's name is John Randazzo if anyone reading this lived near here and wanted to know. Good luck.

  • Posted

    I also want to add that I'm not out of the woods yet with my right shoulder. The left seems to be doing amazingly well. Like I said, after nine weeks, it felt great. I'm at 8+ weeks with the right and it still doesn't feel right. I feel fairly confident that by twelve weeks I'll be good, but I really have no idea. The range and strength keep coming back more each day but there are weird pains still. They did do a decompression and a slap tear repair though like I said, so maybe that's why this one is taking longer, but the left had far thicker adhesions on it than the right did. But the right is taking longer. Go figure.

    For the most part, the recoveries have been the same, but there have been a lot of differences too. Left I had a hard time regaining external rotation but I eventually did. The right I'm still having a hard time regaining vertical flexion and like I said, there's still pain along the deltoid. I thought this second recovery would take less time but it's taking longer. If I was giving myself advice here, I would say to recalibrate my expectations and to just ice as needed. There's still a really strong likelihood that by twelve weeks it finally reaches the point the left did at nine weeks.

    War's not over yet for me. For now, the primary battle seems to be managing my emotions as I navigate what I'm hopeful are the final paragraphs of this horror story.

    • Posted

      Fellow FS sufferers: This guy is right on target.It's true that most of us will get better with standard therapy and that a cautious approach preferable. But if you've had it for MORE THAN A YEAR OR SO, then it's surgery time. Some of us won't get better without more invasive means. I'm on my second FS, and have long been an advocate of letting it run its course -- because that's what worked for me the first time, and is working this time too. But this guy has really been put through the wringer, has done his homework, and I'm so glad he has found relief. High five, Constantine. High five.

    • Posted

      Thanks, Hooiser. Really appreciate the reply! And also, I hope everyone knows that my questioning of other people's FS is NOT related to all self-limiting situations. I absolutely believe that this disease is self-limiting for many, many people, especially those of you who've had it twice. So if you've had it twice or once but over a year, then I definitely believe you. I do wish a study was done to find out why some of us are self-limiting and some of us are not, but there's no question that this disease does vanish on its own for no apparent reason eventually. Even my surgeon says that it was still possible I was a self-limiting case had I waited another five years to find out.

      But I do think it goes without saying that people who claim to have gotten better in like eight weeks or something definitely never had this to begin with. People who are like, hey I took CBD oil and I was fine in four months! are definitely full of you-know-what.

      Sorry, I had to clarify that statement as my recent post makes it sound like I'm calling out 90% of the community here. My uncle had a FS that was self-limiting to about 12-14 months and all he told me he did was run it under the shower every morning.

      As for my PT and recovery, I'm at 10.5 weeks now with the right and 21 weeks with the left. Both are feeling much much better, and I've made great gains in vertical flexion in the past week. I'm up to 170+ degrees on both now. I was at 146 degrees in the right at six weeks, so I'll take it. It was definitely tough working through those last 20+ degrees though. ROM still not all the way there on either shoulder, but it's pretty close. I can almost reach all the way around my back on the right, but I still need about another 15-20 degrees there too. A lot of people say that one takes a while to come back, so I'm not worried. For some reason, it came back really quickly on the left, but the right is taking longer. This surgery is definitely unique to each patient.

      Currently, I'm doing blood flow restriction therapy now on both shoulders. Google it to check out what it is, but it's going to increase my shoulder muscles far more rapidly than just using traditional rehabilitation methods. I've had to build up for a long time to reach this point, so it's pretty cool I've come this far.

      I actually shot some baskets on a nearby court the other day. First time in eight years, but more importantly, first time since the surgeries. I'm so weak and can't even reach the basket outside of ten feet, but my form is like 85% there! I used to be good at this game, so it's a bit sad I'm so terrible now, but hey, I never thought I'd be able to shoot a jumper ever again. So while it was a reminder of just how weak my shoulders still are, it's also a huge milestone and a passed test with the surgeries and rehab. Right shoulder feels good this morning.

      Overall, it looks like still I won't get discharged from PT for another two months or so. Three and half years of sitting in a chair does a number on the entire body and I'm not leaving until my patella, left hip flexor, neck, and elbow pains are resolved as well. I'm progressing every week though, and it's a priceless feeling getting better. It's also invaluable knowledge knowing how to stretch, maintain and properly rehabilitate my body at home. So while this investment in myself has been ridiculously time and energy consuming, it has been well worth it and I'm happy and upbeat about where I am currently.

  • Posted

    I am going through my 2nd fs. Back in late 2015 I started to get symptoms, but decided just to let things happen naturally. I just went with advice from the Internet. 10 months later & a lot of pain, it left me with no lasting effect.

    Fast forward to Aug 2020, and one day I got this pain in my other arm that I knew all too well & knew it was happening again 😢. It was much worse this time. I went to the doctors & was sent for physio. The physio told me it was tendonitis & we started work on it.

    Feb 15th 2021 - the arm was getting better, but started to get stiff again & terrible discomfort. My physio said I had developed fs, and had to put excerises on hold . I have a little movement in my arm now but pain & cramping still there. I know there will be a day when all will be well, but for the moment I shall just soldier on.

  • Posted

    Hello, I am also in the third phase and I want to reassure you that there is really hope and in the third phase of a frozen shoulder the pain decreases and the mobility gradually increases. I can finally sleep in a slightly more varied position, also dress more normally and perform my usual daily activities better. one of my hands was so bad that I couldn't even work with a computer and the mouse was in terrible pain. I even learned to work with the other hand so that I could do at least some of the necessary activities on a computer. what I would like to share and I think it is important that in order to recover faster. I reached the third phase in seven months which I think is a good result as really during these seven months the pain is terribly unpleasant. I started going to physiotherapy in the second month where they showed me the right exercises and applied different machines that could possibly improve the situation. to tell you the truth i would personally recommend you not to use any machines low electroimpuls treatment and so on. what really helped me and I didn't have any side effects from it is gymnastics. it should be done gradually with a very small amplitude of increase but me very regularly even for a short time but regularly. all I would like various tonic supplements but I can't say if they have any effect even more that I don't drink them regularly. which for me was really key to the recovery and I highly recommend it is a mineral bath. I do not know if you have knowledge in this area but this is a water therapy with mineral water in a mineral pool. I visited a special place where I did gymnastics in the water of the mineral pool which is designed specifically for arthritic and rheumatic and traumatic diseases of the joints, muscles and tendons. if you do not have the opportunity to visit mineral therapy then I would advise you to at least try to do water gymnastics in a pool or at sea. this gymnastics cannot be compared at all in comfort with dry gymnastics. try and you will understand me. in water gymnastics the exercises are made much easier with a much better range and there is no such great pain that there is in dry gymnastics in an air environment with much stronger gravity. this is what i wanted to share them with and it is extremely important. postscript: I was also offered different types of injections and surgery, but despite the great pain I had, I gave up these options and endured this pain because I read various reviews in which it is clear that these things also have side effects and is not clear whether they will help. go persistent in your gymnastics and you will get the desired result faster. wish you health and success and may God be with you!

  • Posted

    My left should is freezing up, I dealt with my right one doing this almost 4 years ago. uuugghh.

    The first time, I went through months of painstaking physical therapy before and after finally having a manipulation surgery. I really don't think I have the energy for all that again. I never took steroids, though the Dr's tried to give me some, I'm a type 1 diabetic, so steroids read havoc on my blood sugar. I'm thinking this time, since I know more about what's going on, I may just wait it out. I'm 53 and this is the most painful thing I have ever had happen, like you said, people just don't understand. I'm wondering what we all have in common and why is this happening to us?? I know there is a light at the end of this extremely long tunnel!!

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