Have had FS for 18 months....when will it end.

Bones, joints and muscles
1

Hello,

About September 2016, I noticed pain in my left shoulder when doing certain exercises at the gym. At first I ignored the pain thinking it would go away. Bad decision. The pain didn’t go away, but instead increased, so I started massage therapy which helped tremendously. After 2-3 months of massages, every two weeks, I stopped because the pain stopped. I resumed my routine at the gym. 

Gradually the pain returned. I stopped doing the exercises and went back to massages. Both helped. I again resumed exercises at the gym.

Not only did the pain return, but there was a decrease of mobility too. Stopped massages and began PT, which helped gain some mobility. Continued PT for two months, but pain gradually increased and continued to lose mobility. 

About a year after initial pain, I went to a sports medicine doctor and was diagnosed with FS. Was given PT as the treatment. Did PT for another 4 months, which did improve mobility in some ways (lifting shoulder in front and to the side of body up to head), but not in others (external rotation and behind back). Towards the end of PT, ROM decreased significantly. My intuition told me to stop all PT and just stretch, of which I did. 

The first doctor and PT didn’t tell me anything about FS, and I didn’t do any research, so I had no idea what my diagnosis meant. I thought I had been misdiagnosed. I thought for sure I injured myself and would need surgery. In January 2018, I went to a different doctor, a shoulder specialist, who also diagnosed me with FS. He said I was in the ‘frozen’ phase and will start seeing improvements in about a month.  He told me about the options of injections and surgeries, but suggested I focus on the exercises he gave me, and eventually this would go away. 

Now after 18 months of dealing with this, and after two months from seeing the second doctor, I am unfortunately fully aware of my diagnosis and am sick and tired of dealing with it. I tried acupuncture, which completely took away the pain and increased ROM (unfortunately only during the treatment). I bought a heating pad specifically designed for the shoulder. I work from home most days, so I use this throughout the day. It does ease the pain. When not at home, I use the stick on heating pads, which help slightly. I take OTC pain meds when needed. 

I am now having pain in my entire arm, especially in my elbow and wrist. Has anyone experienced this?

I’ve read through most of the forum and have jotted down various things to try. I’ll let you know if any of it works. For now my motto is slow and steady wins the race. 

Im so sorry all of us have had and are dealing with this. I can’t wait to be done with this horrible ailment. 

My my best to all,

Michelle 

2

My GP never mentioned FS, the physical therapist that I saw a few times (before giving up due to excruciating pain) never mentioned it. The 1st orthopedist never mentioned the words, but did mention operating which I was highly suspicious of. Wasn't until I saw the 2nd Ortho that I heard the words and was given literature explaining what I had. He ordered an MRI to rule out any other possibilities then told me to expect it to thaw in 1-3 years. Mine lasted the full 3 years. 

It is a hideous problem that can have lasting effects. Dealt with them for 12 years till I resorted to acupuncture and was miraculously freed from them. 

It WILL pass, but it may take a while. Most people don't seem to have it for 3 years. Maybe if you continue trying acupuncture you will have some relief? 

3

Hi Michelle,

     Your issues are all too familiar and I wish I could give you an honest answer as to when this horrible problem will end for you. 

The reasons for your FS and the course it has taken sound a lot like my own experience.

  When it becomes frozen it is in the worst stage, at least for me it was. It seems like it will never get better. But there are some things that helped me and I have continued to use even after the OAT procedure. Although my range of movement has got back to over 80% my shoulder still  gets stiff and painful overnight. Granted it’s not the intense pain I had before.

So here is what helps (other than painkillers anti-inflamatoriesand sleeping pills).

  I sleep on my back with two pillows under my head and shoulders and a small pillow under my affected arm.

  I use a product called Livrelief Pain cream which takes away the worst of the pain, but doesn’t get rid of it.

If the pain worsens while the Livrelief should still be working I get up and perform  a range of arm dangling movements for 2-3 minutes using a 3lb weight. I am still doing the post OAT exercises every six hours and find I still need to get up after 3 hrs in bed to do the dangling movements.

I do both arms as I am concerned my other arm will also freeze.

If things get really bad overnight, I get up and sit in my reclining chair as it takes some pressure off my shoulder. Usually I can get some sleep doing that.

As per my previous posts I have now started on Serrapeptase 120,000 IU twice daily, but it’s too soon to know if this will help as this Just day two. But if it does help I will let everyone know.

I hope things get better for you soon. Just realize you are not alone in this.

4

Hi, happened to be online and had the time to read your post. I do not have a medical background, but like you, learned things through a combo of having injuries, reading, talking to others, and trial and error. Have you considered you might something like tennis elbow (tendonitis/carpal tunnel)? I seem to get these types of injuries(?) without much trauma to the site. Just last Thanksgiving, I drove for about 14 hours in one direction, and about the same on the return. By the next day, I suspected I had, for lack of medical knowledge, something akin to carpal tunnel/tennis elbow. When it persisted, I went to the sports med doc I like, she confirmed it. In the past, I would go to PT, this time, she gave me a simple set of exercises. I did the exercises and my elbow/wrist are back to normal. Hope this helps. (I have a kind of simplistic theory about why I seem to get carpal tunnel, FS, and other minor injuries.)

5

Hello beverly52803,

Thank you for sharing your story and encouraging me to continue trying acupuncture.  I think I haven't given it much of a chance and will go back for a few more rounds.

I'm sorry your's lasted a full 3 years.  I really hope mine doesn't.

Take care

6

Hi jim 5066,

Gosh, I'm so sorry to hear the pain that you have and I'm glad that you have found some things that work for you.  I'm fortunate in that the pain does wake me up some nights, but most nights I'm able to sleep decently.  When I wake up in the morning I usually am in lots of pain and have found massaging using a tennis ball against the wall eases the pain.  I sleep on my good side or back, using a neck pillow for my bad arm to rest on. Thank you so much for the information.  I hope you get better very soon.

7

Hi hoku,

I haven't considered any injuries to my elbow and wrist.  I've been chalking it up to my elbow and wrist overcompensating for my shoulder.  If the pain continues in these areas I will definitely see my doctor.

Thank you for responding.  I appreciate any and all information.

8

Has shoulder arthritis been ruled out?

9

Hello MIchelle 

I like you have pain/ discomfort down my arm into my wrist and hand .. 

I have very recently had a arthroscopic sub capsular release. I am exercising  4  times daily , having weekly physio, initially I thought my pain had improved ( must have been nerve block)  but now the discomfort and night pain back , however I can move my shoulder a fraction more. The fatigue from constant discomfort is draining . I would love my life back soon 

Best of luck Michelle 

10

Michelle,

I can relate to your frustration. I am in my 16th month of this awful condition. What's most frustrating is that around December it actually started to feel better...greater ROM, fewer of those breath-taking zingers when making a sudden movements, sleeping ok, etc. I really thought I was entering the thawing stage!

And then a few weeks ago my shoulder started to hurt a little, kind of like a muscle strain, when making movements like putting my hand behind my head. And it hasn't subsided. I'm so dejected. I don't want to do the MUA or other release procedure so I'm just doubling up on my at home exercises and stretches -praying that it will begin to heal again.

I desperately hope more research is done on this condition so we can learn the cause and best treatment for a speedy recovery.

I'm very grateful for this forum and if I come across any special tricks that ease the pain I will certainly pass rhem on. Stay strong everyone!

11

Once I started thawing I did feel the pain down my arm and into wrist. I thought something else was starting or it might have done nerve damage but that pain is almost gone now and I am almost back to normal

12

I don't think I have arthritis because I had x-rays taken, of which the doctor reviewed and said everything looked good.

13

I'm glad that you have gained a little more mobility. I hope it continues.  I too can't wait to have my life back.  This is getting old.  Take care.

14

Oh man!!  I would feel the same way!!  I'm so sorry for the setback.  The fact that you had a point with less pain and more mobility gives me, and hopefully you, hope that improvement is possible.  I too don't want do the MUA or other release procedures.  One day at a time . . .

15

How long did you have this before you starting thawing?  I think the pain in my elbow and wrist is associated with using the keyboard and driving, as the pain decreases when I rest.  It is so nice to know that someday this will end.  Thank you for your encouragement.

16

Sorry to not get back sooner and I hope by now u r at least thawing. I had it for about 5 months and then started the massages and started thawing right away after that. It took another 5 months to get most of the mobility back and now 5 months later I have almost all mobility back with very little pain. Just sometimes when I am laying down I can’t get my arms totally under my head like I used to. I don’t have daily pain anymore and I can do my hair and undo my bra the right way. There is hope.