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
Constantine585
Posted
Yikes, my spacing between paragraphs was removed for some reason. Hopefully that's still readable for everyone.
MomGoneMad Constantine585
Posted
Thank you for your words of hope. I'm on my second FS. And I'm worn out. My husband has been great. But no one understands the unrelenting pain unless they've been through it. Just praying for time to pass by so it can thaw.
cjfrew MomGoneMad
Posted
I'm on my second too, worse in some ways as we know what lies ahead.....
melissa48549 Constantine585
Posted
thanks for sharing your FS story, and yes, keep us updated. It's been two years since my first FS developed in my dominate arm and just under a year that my second began in my left. Like you, my first was much more painful. Only treatment has been some very gentle physical therapy with some prescribed home exercises. I am much better with the first FS- still haven't regained full range of motion though- and still some daily discomfort and some mild pain in it from time to time. Still very limited RoM in left shoulder, but much less pain now.
What a process this has been, and truly no one really gets it who hasn't experienced it themselves. Good luck with your continued healing. Getting in pools-when I've had the opportunity- some hot and some cold, both spring fed, and moving to the extent that I am able in all directions- has seemed helpful for me. Castor oil and heat helped when my first FS was so severely painful. Take care.
cjfrew melissa48549
Posted
Try clary sage oil. It's helped me.... I think.
Constantine585
Edited
Thanks for the replies, guys. Yes, I promise I will update this thread. It's a pet peeve of mine when people go on forums with a post like this and do not update them. I don't want to be "that guy."
I also understand that reading a post like this can be both comforting and frustrating, especially if you've been in pain for years. Please understand that it is not my intention to make anyone in this community feel bad about themselves. We suffer enough as it is.
While I feel pretty hopeful my shoulders will eventually be some level of okay, I'm not out of the woods. The discomfort in my left hip over the last week has been causing a great deal of anxiety. If my hips start to go, I will certainly post about it. It's probably just a strain, but the bad thoughts are plaguing me tonight.
Anxiety and depression is an aspect of this disease that I don't think gets talked about enough. I've been plagued by a lot of dark thoughts over the past two years, primarily because of the chronic shoulder pain and inability to live my old life. I was a very active person before this happened.
I wish the frozen shoulder community had a better forum where we could all congregate and communicate. I'm grateful for this website, don't get me wrong, but a more elaborate forum would be a good thing, I think.
cjfrew Constantine585
Posted
Thanks. This is my second FS, the other shoulder now. Nobody listens. Nobody understands the pain. You can't if you've never had one. The pain is like nothing else you can describe. Like you I tried everything last time. I ended up seeing a shoulder specialist. He said "DO NOTHING!"
Thankfully listened to him having decided that whatever he said was what I would do! He was right. It cleared up in just over a year. Now here I am three years later with the other shoulder. I plan to do nothing. I am using clary sage essential oil. I've no idea if it is working but I am getting some relief. It could be the hot shower beforehand. Either way, I managed to sleep a bit. This FS is different to the first one. The pain is not quite as bad and in a little more tolerant of it. I'm scared as now I know the difficulty that lies ahead. I m in the freezing stage now, ironically I didn't recognise the symptoms of what was occurring!. I wish you all the best.
Guest cjfrew
Posted
I did recognize the signs in my second shoulder and promptly saw the doctor for cortisone shot and PT, as I read it could reverse in 4 weeks if caught early. Thought I had it. Unfortunately, after a stressful weekend, it hit me full on. I guess they just need to run their course, I was probably just prolonging it with the early PT
cjfrew Constantine585
Posted
Thanks. This is my second FS, the other shoulder now. Nobody listens. Nobody understands the pain. You can't if you've never had one. The pain is like nothing else you can describe. Like you I tried everything last time. I ended up seeing a shoulder specialist. He said "DO NOTHING!"
Thankfully listened to him having decided that whatever he said was what I would do! He was right. It cleared up in just over a year. Now here I am three years later with the other shoulder. I plan to do nothing. I am using clary sage essential oil. I've no idea if it is working but I am getting some relief. It could be the hot shower beforehand. Either way, I managed to sleep a bit. This FS is different to the first one. The pain is not quite as bad and in a little more tolerant of it. I'm scared as now I know the difficulty that lies ahead. I m in the freezing stage now, ironically I didn't recognise the symptoms of what was occurring!. I wish you all the best.
m.44051 Constantine585
Posted
Hi Constantine585
Thanks for your post. It is always good to hear from those who are seeing progress! How are your shoulders doing now? Have you gained more motion? What works for you? Have you been stretching your shoulders or doing range of motion exercises or just using them as you're able with daily tasks? I currently have 2 frozen shoulders, about 8 months in on one side and about 3 months in on the other. When you're in the midst of it, you feel like it's not ever going to get better, so it's good to hear about those who have improved!
Constantine585
Posted
I said I would write an update to this so I'm keeping my word. Unfortunately, I don't have a ton of good news to report.
After that post I returned to golf (I was an avid golfer before all this), but I only lasted about 6-7 weeks before I ended up shutting everything down again in early January. The pain in the right shoulder got worse and worse, and clearly I had come back too soon. I've been basically paying the price ever since, where my right shoulder has been in a lot of pain. This of course after doing everything right with it for eleven months. Oh well. Can't change the past.
Here's the current situation. The left hasn't thawed one lick since November, but the pain is mostly gone still. I got an MRI a few weeks ago that showed the capsule is 10+ times the thickness of a normal one, hence why such limited mobility. Other than that though, the shoulder is perfectly fine. I found a new doctor who I feel good about who thinks I can just get it scoped and in six to twelve months I'll be back to normal again. I'll probably get this surgery done sometime this summer if I don't see much improvement over the next 6-8 weeks. Keep in mind, the left has had symptoms since June of 2016, so it's been a while for me.
Now, again... I really screwed up with my right (the other) shoulder's recovery. To remind you, this one began to freeze in December 2017 and I tried to golf again just eleven months later. It was JUST beginning to thaw then. Well, apparently, the thawing stage can be a fragile thing, and apparently, I was supposed to stay off it and not mess with it at all then. Oops. It froze up again around December because of all the golfing, I shut everything down on January 3rd as a result, and didn't notice it thawing again until early March. It seems I've set myself back several months at least by coming back too soon. It's a shame, but there's nothing I can do about it now. I'm obviously not the first person who has set himself back in his recovery because of this confounding disease with no clear guide how to navigate it successfully.
There is some positive news though in regards to some dietary changes that I've made. I also suffer from cluster headaches. I've suffered from those since I was thirteen. It's also an inflammatory based disease like frozen shoulder, and some part of me actually thinks these two diseases are related, but no one has proven that (yet). Anyway, in March I learned that the cluster headache community recently began adopting the keto diet to fight the disease. The keto diet is a high fat, low carb diet. On the cluster headache forum, I was convinced by the other users there to try the diet, and one of them even thought it might help with frozen shoulder. It's currently day 54 or something for me with it. I can report that I like the changes I'm seeing. It's definitely a cool anti-inflammatory way to live, and that's definitely something we all need in this situation.
I don't have diabetes or anything like that. Besides clusters and two frozen shoulders, I'm a healthy 36 year old man. But keto is helping me lose a lot of the weight I gained over the last few years, my head feels clearer and my sleep schedule is better. My right shoulder has gradually improved as well, but very very slowly. I'm not sure how powerful keto is for fighting adhesive capsulitis (and no studies as of yet support this), but I'm sure it can't hurt. Over the last couple months, I learned how damaging sugar can be, and since I stopped consuming it regularly, I really have felt a lot better.
I'm stretching my core and legs daily now as well as that part of my body has really atrophied over the last three years. That's improving as well. Keto seems to be helping me motivate to move around and take care of myself more (within reason of course).
In my notes, it says since I first noticed the left shoulder thawing, it was about three or four months before the pain was low enough where I could golf again. My right has been thawing (uninterrupted) since mid-March, so I'm holding out hope I only have a month or so to go before the right feels good enough to golf too. Keto, vitamin supplements, core stretches, and rest are all I'm doing now to combat this.
I get the sense however that these may never thaw on their own. If I don't see much improvement over the summer, I'm going to get them both scoped at some point in the next twelve months. I'll obviously provide another update on my progress regardless.
Sorry for the bad news with me, but I guess it could be a lot worse. Look into your diets as well, and make sure those are ideal for you because there's a decent chance a terrible diet exacerbates this disease. Good luck, everyone. I'll back with another update at some point.
m.44051 Constantine585
Posted
Sorry to hear about the setback with your shoulders, but good to hear that you're doing other things to feel healthy. I'm experiencing similar things - one shoulder is frozen and the other still freezing and really limited motion in both. I also notice that the more I rest the shoulders, the better they feel and the more motion but as they start feeling better and I try to do more, the pain returns and they stiffen up....so frustrating, especially when trying to keep up with work and home responsibilities! I've been using stationary bike which helps me feel better and the shoulders seem a little looser afterwards. Feel better everyone!
kate33358 Constantine585
Posted
hi everyone, im new to this group and just wondering how do you know what stage of frozen shoulder you are at? i have been having pain in my right shoulder and aem since DEC 2018, which has been getting worse, had mri in march which showed tear in tendon and was having physio for that, then saw ortho consultant on may 16th who diagnosed frozen shoulder and advised to stop physio as it was aggrevating shoulder., when do i know that the freezing stage has ended?? i have pain most of the time., cannot sleep with it worse at night., range of motion is very poor, cannot put my arm behind my back at all and only a little up to the side., shooting nerve like pains along with general ache most of the time., consultant said just to leave well enough alone , stop phsyio anf just let it take its course and have sone patience with it. ive been taking vimovo but not getting any relief from it., ice and heat seem to help a little to free it up!
any advice would be appreicated
Hoosier kate33358
Posted
Hey, Kate! Welcome!
So sorry you have this awful condition, but glad you've found this group. I'm on my second FS, started about the same time as yours. There's a ton, TON of great information on this forum. The advice here often contradicts itself, but keep in mind the formal medical community can't come to a consensus either. There are many ways to approach this disease, and you can bet that someone on this forum has tried it and written about it -- so you can get an honest first hand account of their results. ( I suggest you start with "Helpful Tips" by Frosty. Go to the "interesting" tab on the upper right, and hers is the first thread that will show up. )
IceCoffee Constantine585
Posted
So happy to have found this forum. Diagnosed with frozen shoulder for 5 months now. Pain is awful. Too fearful of going to PT that pain might increase. Shoulder doctor said my choice, go to PT, have manipulation under anesthesia or do nothing. He said it's a self limiting disease and has to go through the 3 stages. I have been doing the stretching exercises at home that I found on YouTube. Not sure if they speed healing but if I don't do them every day I get stiffer. Night pain the worst. There is no comfortable position and pillows in various layouts do nothing. TENS unit hasn't helped. Has acupuncture helped anyone?