Recovering from 2nd Frozen Shoulder. Here's what I did.
Posted , 8 users are following.
First off, I want to console you poor souls who are still in the grips of agony. It gets better.
I am a research scientist by profession, so when I got my first out-of-the-blue Frozen Shoulder (left shoulder) at age 47, I dived into the research. I read frozen shoulder blogs, learned about the newest treatments (Xiaflex), performed my exercises, joined this forum, pulled research papers, went to Physical Therapy, watched videos and did everything I could do to make the pain stop. And during that time, I lost range of motion, lost months of sleep, and, many times I lost hope. After about a year of agony, PT, a cortisone shot and a new appreciation for folks in chronic pain, I sloooooowly got better. And eventually regained all of my ROM back. Yay!
But I'm a scientist, remember? I took notes. The research states that for women who get idiopathic ("out of the blue") FS, we have a 20-50 percent chance of getting it in the other shoulder.:-( Knowing that there are conflicting approaches to treatment ("PT all the way!" vs "Leave it alone!"), I thought that if I ever got it again, I'd try a different approach and document those results too.
Four years later, after weeks of denial, I got it in the other (right shoulder). Oh, rapture.
This time, no PT. Cortisone shot early in the process. Another cortisone shot 3 months later. Many soft/gentle massages. No stretching during initial freezing or frozen stage.
And, here are my results:
In a nutshell: Both shoulders locked up ("Frozen" blue line) and recovered at about the same rate whether I did the exercises or not! But the pain ("Pain" red line) was A LOT less the second time around. Perhaps it was the early cortisone shot, or perhaps it was the "leave it alone" approach. All I can say is that, FOR ME, the exercises didn't seem to change the outcome much, but the cortisone shots really helped with the pain.
So, what does this mean for you? Read as much as you can and find what has worked for others and apply it to your situation. Idiopathic FS, like mine, is very different from injury-induced FS, and those often require some of the more aggressive treatments (like MUA or surgery). I attribute my sanity to the honest folks on this forum who shared their successes and misses. There are ages of real home-tested tricks that work. (The best being Frosty's helpful hints - do a search for that thread).
Take comfort that most contributors come and go -- because they got better! Chances are you will too. But until then, soldier on and find the gems in the group wisdom. (And, I apologize for the weird formatting!! This thing messes it all up!)
6 likes, 28 replies
Samhgt Hoosier
Posted
Hey
Very similar experience.
In the freezing stage pf my second fs (age 48, female, 3 years apart) right shoulder. resting, no pt this time, no shots, not as much pain. Not sure how much more painful, frozen I'm going to get but at least this tome I know the process
Hoosier Samhgt
Posted
I did a lot more massages this time and those really felt great.For me, I was so glad that I had kept a record of the prior one, since even though I knew I'd likely get better, I sure had my doubts at times. So sorry you're in the Freezing stage. But, at least you know what you're in for (or maybe that's a bad thing?!) I'm a big fan of Woodlock oil. It's a stinky ointment (like Tiger Balm on steroids,) but it takes the edge off the worst days. FS is such a long term problem that we run the risk of side affects from over the counter pain killers, so I tried to keep to the topical salves, and use ibuprofen at night. Good luck!! You'll get out of this.
Shalbourne Hoosier
Posted
Very interesting. My idiopathic FS was cured by hydrodilatation . The physio did not want to see me as she said i was in too much pain however her advice was critical. She said if i got this procedure that it would have instant results as she had preformed this many times. Eventually after pleading with my GP i had this done by a trainee radiologist specialising in this treatment . It hurt and he said that he had injected what he would have used in someone double my weight. They expected to see immediate results and were disappointed when this wasn't the case. It did work but took 2 weeks. It is a shame that i cant give them any feedback as this would help future patients and ultimately society generally. Research is so important and i think thats where it all falls down in medicine. Thanks for letting us know. I shall await my other FS in the future 😦
Hoosier Shalbourne
Posted
I know that the hydrodilation is saline solution, but does it also contain lidocaine? or does it contain a steroid too? They don't commonly do hydrodilations in the States - I don't know why. But I wonder if they are effectively the same if they both contain a steroid?
Yes, I agree that the GPs need feedback. I don't think they are malevolent beasts or anything, but I do think that our goals are different; We want to get better, they want to get us in and out to the next patient. The two goals can be beneficial to both of course, but not always! That's why we have this forum! At what stage are you in? How long have you had this?
Shalbourne Hoosier
Posted
Its steroid and saline. They prefer in the NHS to go for up to 3 steroid only injections. Private patients usually are offered Hydrodilatition more often. This is what ive been told.
Hoosier Shalbourne
Posted
Have you read Colin's hydrodilation success story? That guy had a miracle performed on him. I wish we all could have that happen. And the x-rays to show it, too. First x-ray, tight FS shoulder. Second x-ray (after saline injection), space between the ball and socket joint. Simply amazing.
Yeah, you don't want to do more than 3 steroid injections since it can damage your ligaments.
About 5 years ago there was an trial in the States and in EU where they were testing an established treatment for Dupytren's contracture and using it for FS. Xiaflex is a product that breaks down collagen -- the same collagen that binds our shoulders as what binds patients with Dupytren's.But they stopped short of granting license for use in Frozen Shoulder because they didn't see a large enough market. Instead they're using it for - get this - cellulite! Shoot it into your butt-dimple, and it pops out. I had read up on the trials and knew the effectiveness of it (for FS, not for cellulite) and asked my doc to use it off label, but I would have had to pay $3000 for the procedure! I'm out of the woods now, but it would have saved me so much agony.
What stage are you in?
colin1964 Shalbourne
Posted
hi shalbourne
thats right i have had to pay private due to the pain i could not wait. both shoulders cost me £1300 in total. NHS to me was a waste of time
colin
colin1964
Posted
and physio cost me £2000 over the year to date
Shalbourne Hoosier
Posted
Ive recovered now from a left FS. Ive regained probably 90% of movement which is good enough for me. I dont have any pain however I do have to be very careful carrying for example heavy bags of shopping as i know that hours later my shoulder hurts and feels week for a couple of days. I also have found its helpful to sleep with a firm memory foam pillow. I was lucky it was my left shoulder and hope that I dont suffer with the right side.
danuta45472 Hoosier
Posted
thank you so much for giving me hope
had cortisone yesterday after months of physio and increasing stiffness and pain
will read through you again and decide what to do next but hoping the shot will have made a difference
Hoosier danuta45472
Posted
Some report here that the shot didn't do anything at all for them. I don't know if that's due to the person's physiology, or the doctor's skill at administrating the shot. But I think it's a good first step to take before trying some of the other things.I tried a lot of things in desperation, but in the end, it was the shot, rest, and time that worked the best. May you be out of this hades hole soon.
danuta45472 Hoosier
Posted
sadly NHS moves very slowly in my area - GP referral to hospital physio in early june gave me a first physio appointment september. only 3 physio appointments from then to 27th december with stiffness and pain increasingly bad. saw physio privately - diagnosis frozen shoulder , recommend injection before more exercise. suggested ask for GP referral for injection - GP referred but first hospital appointment not till april
couldnt handle pain and lack of sleep any longer so went private - 36 hours later feels less stiff but consultant also recommended physio for next few weeks - £1600 + so far - a lot more to pay out for physio as NHS wont provide
my savings running down fast but hope worth it
NHS sadly needs so much more funding as totally overstretched . postcode lottery doesnt help
Shalbourne danuta45472
Posted
I do feel very fortunate to have had the hydrodilatation. Im sorry to hear about your story. I waited 4 months and it is a postcode lottery. They say the earlier you have it the better the outcome. If you have just had the steroid injection be aware that the pain could return. If it does it is the GP that can authorise hydrodilatation. Its a radiographer that carries out the procedure and not a consultant. So perhaps try to persuade them that you want this procedure as opposed to another 2 steroid shots. On a positive note eventually you will be ok and pain free.
Samhgt Hoosier
Posted
i had hydrodilation done on the NHS . Last shoulder started in the September, froze December with only 20% movement left, had hydrodilation in the begining of Feb, was back to 95% movement by March and no pain
Shalbourne Samhgt
Posted
Were you referred to a specialist to have the procedure or did your GP just send you to a radiographer to it done?
danuta45472 Samhgt
Posted
hope you appreciate how lucky you are in your area to have treatment so quickly - am jealous of course but good for you
Samhgt danuta45472
Posted
Thanks, am on my second frozen shoulder now so not that lucky lol
but yes, i was lucky it was sorted quickly, the first one was horrendous, high strength painkillers, time off work etc referred from my gp also had physio but i dont think that made any difference to recovery. Luckily my second one is not as severe and hoping it doesnt freeze too much as its my right
Hoosier Samhgt
Posted
Samhgt --Ug, I'm so sorry you're on your second, and your right shoulder to boot. Well, at least you know what you're in for. I still had many of my coping tricks and "gear" from the prior one, so at least I was kind of prepared. Had a drawer of head bands for my hair, since I couldn't do ponytails any more. And one of those finishing touch micro shavers so that I could shave under my arm. I think the most useful thing was a rolling backpack to carry my purse and whatever else (lunch, workout stuff). Putting a purse on either shoulder was just agony. I didn't get time off work, so I had to make do.
colin1964 Shalbourne
Posted
AAAARRRRRGGGGHHHH
got that shout out the way. update on me arms. went to Harley street yesterday sent by the company as its a work place injury. spent an hour on the bed. he found a chip inside the ball joint and a dent on the ball due to the inpact
this is what set all this malarkey off in the first place
been through all the sleepless nights all the zingger shocks. no movement. actually a really s**t year up to the injection. and then the other arm falls apart
injections sorted it
now he turned around and doubted FS . i have been to 4 docs and specialist told it was. could have punched his lights out.
i left there very dissapointed in this. i now have to have a AP1 and 2 on the joint to look down into the joint.
and he wants to look arthroscopially with a camera. thats a big needle.
and i have to see a shrink as well . i think its because i am so grumpy with this
AM I STILL ALLOWED IN THE FS GANG LOL
Hoosier colin1964
Posted
Not FS? You've got to be kidding. Of course it is. I saw those before and after x-rays: First x-ray, no gap. Second x-ray after fluid injection, clear-as-day gap.Ok, I'll give you that there's a difference between "out of the blue" FS and injury-induced, but it's still the same agony, and treatments fall along the same progression. But it doesn't matter because you're all sorted out now? Your shoulder is still ok since the hydrodilation? Are they afraid that the chip is going to cause problems in the future?
colin1964 Hoosier
Posted
hi hoosier
yes he thinks its a problem with the chip. going to mail him today. lots of questions here.
he wants to do ACR into the joint to have a rummage not particually interested in that as recovery is longer.
if i chipped the ball on the origional left hand. why did the right hand fall apart as well.
just to p**s me off some more i was give a kitchen to fit. 4th floor no lift. dragging 3mtr worktops up the stairwell and 1000 bases. been up all night with the shoulder i just had done. banging all night even with 2000mg. like a hero i did it. hind sight complete idiot.
physio 4pm and rest this weekend. got to have a meeting with boss about this
colin
Hoosier colin1964
Posted
Colin, you sound like a real hoot!!! Serves you right working all night dragging kitchen sinks and countertops! That would kill me! Well, at least you have the weekend to rest up! Happy Brexit!
colin1964 Hoosier
Posted
lol
yay to wonky bananas. stilton not made in stilton
and a better economy i hope. with this comment where are ya based. UK or USA
been physio one the rack so to speak. she went right up into the skull following the muscles. it was me being an idiot.
do companies care for their workforce.
bottom line NO they abuse us.
hard lesson learn here. look after your self first as your body needs you later.
its no the wall of the physio place
colin
Shalbourne colin1964
Posted
so true look after no 1
colin1964
Posted
hi stranger
just tagged on to your message 8 months ago.
finally getting the AP1/2 x-ray in two days on the left shoulder. taken 8 months . he also wants do do another hydro dilation on the left shoulder as well.
that will be the second in that joint. last one july 2019 plus a couple steroid jabs along the way. still giving small amount of pain some days.
right shoulder i knew its freezing up had the jab january 2020. you saw the pics posted. that helped and worked. now some 9 months down the line and two steroid jabs and a sub acromial decompression surgery. which i am laying here recovering from. so i cannot move me shoulder at the moment. HEY GUESS freezing up again. due to the operation sept 18th i have not slept a full night. the op and the frozen an enemy apart. one you have to stay still the other side of the coin frozen you need to move pergatory to say the least
colin
how you finding the new sign on with no alerts ( bad )