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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.
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