My wife has SSD for Chronic Fatigue Syndrome. When she was going to apply, she found a very helpful web site that listed everything SSA would look for in her application before granting her Disability. She was able to complete her application perfectly & direct her doctors re: what their letters needed to say. She was granted Disability on her first app and began to receive payments by the time the decision came through.

I now find myself disabled by Frozen Shoulder Syndrome. Does anyone out there have it? Know anything about the progression? I am definitely disabled now and must apply. I cannot find anything on the web re: SSA's requirements for finding a FSS patient to be Disabled. I'm hoping someone on this list knows of such a site. I need to get going on my app ASAP and want to get it right first time. We have a new doctor, too, who is only one year out of med school. She's never tried to help a patient get Disability and is going to need all the instruction I can give her to get this done properly.

Hi Mikey...

Wow ! Kudos for your wife that is great ! Would you happen to have to link the SSDI site that you referred to ?? I was awarded SSDI in Sept of 2007.. but it was for RSD and TOS. BUT, I now have Frozen Shoulder Syndrome (left ) and SSDI supposedly is re-opening my case (got a letter in Feb.) but my lawyer said they have not done anything yet.. so I wait but I still collect so the FSS will most likely come into play at sometime. Sorry I can't help on applying with FSS .

But I can tell you that I have had FSS since Jan 2008 and I have found a number of websites that refer to FSS. Check the RSD and the TOS thread , there is alot of info there, and If you Goggle FSS a lot of them will show up. It can last up to 2 years before it "unfreezes" itself, but there are many things you can do to possibly "help" the unfreezing.( it is adhesions really, Capulitis I believe) . If you want to PM me I can tell you what I have been thru already.

I wish you good luck in applying for SSI and I hope this helps a little !

Dolfinz

Hey Mikey,

Like Dolfinz right now I too am dealing with frozen Shoulder or adhesive capsulitis. Its inflammation of the tissue in and around the shoulder capsule. It gets inflammed and scars down and forms adhesions that keep the shoulder from moving. Its very painful. And it can be related to diabetes.

It can take a long time to resolve but it is considered self resolving meaning eventually but it does get better on its own.

Not sure given the self resolving part if they grant diability or not but its worth a try.

THe best doc I thnk to go see would be an ortho. Can you ask for a referral? The ortho may know better how to apply for it since they deal with frozen shoulder the most.

If you have had it for a long time (a year or so) they can put you under and break the capsule adhesions very gently and then do pt to get the shoulder moving again.

Dolfinz is having better luck with PT than me I think. I just saw my doc again this week and I have actually lost mobility. He said there are no conclusive studies on frozen shoulder. SOme are helped by PT others get more shoulder aggravation from it. I also had a cortizone shot and it helped for a while.

Good luck in your search.

Thanks to both of you for responding so quickly. I've had right FSS since February. I thought it was something I'd done to my rotator cuff at first. As I began to lose ROM, I realized it was something worse. I saw my child-doctor in June, who injected a painful steroid into my shoulder w/o results. My wife's web research indicates this lasts an average of 30 mos & that most people have residual impairment even after thawing. I am unable to work. I can't drive; I can't reach the dashboard controls w/my right hand. The upper part of my arm is pretty well locked against my body. The web sites also state PT is largely ineffective until thawing (iffy then). I'm going through PT, but I swear it makes it worse. She "massaged" it last week, trying to break things up, & I've been miserable since then. My ROM has not increased in 3 sessions. We're going 2 more & then she'll give me back to my doctor. Child that she is, I know she'll refer me to an ortho. She simply would not undertake writing a Disability letter about something she knows so little. She's still scared of her shadow. I'm counting on getting Disability because I can't drive & can't dress myself. I imagine there will be a re-check in 3 years. My wife's doctors apparently made her sound all but terminal because SSA has never rechecked her status, but our severely disabled (from birth) eldest daughter receives a "review" letter every 3 years. I think these must be based on age. Since I'm almost 59, I'm hoping to get Disability as easily as my wife. Why would someone my age prefer Disability income to "real" income? My wife has 3 degrees & had a great career. We think SSA decided only a lunatic would give up what she had for Disability. I'm not in quite the same situation, but I'm hoping the end result is the same. If you're getting treatments for your FSS that you think help, please tell me what they are. I can't take another pummeling session by this PT. My shoulder felt "broken" when she finished with me. I will NOT agree to the surgical invasive process you mention, Shirley. Many web sites are very skeptical about it & it is nothing I would have done. The ultrasound treatments are good, but the rest is awful. W/o increased ROM, I see no point. According to the web sites, I seem to have moved from freezing to frozen and "all" the sites agree PT is worthless at this point. Dolfinz, you've had it a month longer than I have. Where are you in the process? Shirley, how long have you had it and what's being done for you? I know about RSD, BTW, because the doctors thought my wife had it before settling on severe CFS and FMS. She went through the tests. She said you should get Disability immediately for RSD. Trying to respond to both of you has resulted in a rambling message. I thank you both and would appreciate any more information you might have on effective treatment. My wife will continue to try to find out what SSA wants, but hoped to short circuit the research if someone had already gotten the info. Thanks. Mike

Hi Mike..

I sent you a message.. Hope today is doing a little better for you !

Dolfinz

Hey Mikey,

Wow it sounds like your frozen shoulder is quite bad. I think mine started in March/April.

I am frustrated with mine too but I can raise it shoulder height but no more and it does not rotate in or out. I can still drive and and I can dress myself and although painful I have a desk job so I I can work.

Right now I am doing PT but like you I think its is doing more harm than good. Last week the doc told me to tell the PT to scale it back as it was making it more inflammed and aggravating the nerve roots in my neck and then everything flared.

So I am back to ultrasound and stim in PT with very gentle exercises. Also working out with a trainer at the PT place and it often feel better when things warm up in that area.

I have started cellebrex since antiinflammatories apparently help. And if really painful I will take a pain killer but am not inclined to do so.

Some say that frozen shoulder can be related to diabetes and high levels of sugar in your bloodstream and it makes the joint inflammed and sticky. The adhesions are actually web like scar tissue that is very strong.

Since my is likley related to insulsin resistance I am also trying to change my diet etc.

My doc told me I will have to live with it for now. He won't touch it for the manipulation under anathesia for another 4 months as it could create even ore scar tissue After that I guess arthroscopic surgery and they can suck out the scar tissue.

BUt I am going to give it my best to do the exercises I have been given and try to bust it up because I think you are right the other procedures right now do not offer any better chance.

Good luck with the SSA, I hope you can make it happen. And I hope you find some relief.

Hi Mikey..

Just a note to see how you are doing ?? Hope things are getting there for ya !!

Dolfinz

this site says he {osteopath} has found a specific protocol of a hands on way to help with FSS, might be something helpful or might not...

just posting in case you hadn't seen it yet.
http://www.frozenshoulder.com/?cart=12194267787966045

his interview about it -
http://www.bellaonline.com/articles/art35162.asp

Jo...

Thank You so much for finding this for us ! I am so interested in it ! I think my therapist is already doing it ! I hope so.. I will find out Monday !!! Thank You.. My shoulder thanks you !!

Dolfinz

The Disability Secrets web site features just about every malady known to medicine. The point of the site is that SSA doesn't look at the diagnosis per se, but rather how you are "disabled" by the condition. I don't think that is actually true; partly true, but I do think your age, your education, and your work history has something to do with it. During the '70s and '80s, Disability was handed out carelessly, putting too many people on the "rolls" and things tightened up to the point of it being nearly impossible to get. That opened up an entirely new legal profession: the Disability attorney. I don't think anyone needs to spend the money on an attorney who is truly disabled. You just need to be able to fill out the forms (and sometimes you might need help with that) and be able to write a credible essay. If you have trouble writing, then paying for the help to put together your case is probably worth it because I believe what YOU write is just as important as what your doctors write. Your also really need a doctor that's on your side. My doctors wrote mammoth letters to support my year to year deterioration until I hit crash and burn at the end of 2000.

Mike's PT just about wore his shoulder to a nub. She did unltrasound treatments that seemed to help, but her manual massaging almost put him through the ceiling. He's now having trouble siting up for any period of time. Having been where he is, I think some of his problem is not eating properly, resulting in a drop in blood sugar, lying down too much, resulting in BP problems, and the two work together to make you bed ridden. I would have to sleep for 2 weeks, planning ahead, for a doctor appointment and I'd often think I'd not make it. I canceled many. 8 years later, I'm finally much better. I have bad days, but I'm no longer bed ridden. I'm also almost 58, haven't worked in 8 years, and I wouldn't consider even trying, not that I think I could find a job in this economic downturn. Why hire someone who hasn't worked in 8 years? But, I truly don't know that I could be "up" for an 8 hour day and do it 5 days in a row.

There's not much help on the particular web site I site above. The main point is that the degree of Disaibility and being able to document that Disability if what is important. I could document everything. I also developed Orthostatic Intolerance, one thing I did find on a web site that SSA does look for in CFS cases. It almost guarantees being found Disabled. But, I had everything else going against me, not to mention an obviously strong work history with every reason to want to work as NOT to work. Mike has that too. Before resigning in February, he had worked 12 years with perfect attendance, not even taking a vacation day. That should help him, too. He was hoping to find someone on here who had a) found an effective treatment for FSS, since I can't find anything encouraging on the web, and b) someone who had applied and gotten Disability for it. We're a real pair. Approaching retirement with both of us on Disability. We'll hit poverty level in no time. This is called a "low point".

I enjoyed reading all of your responses. Thank you for your input and I'll continue to check in. If I find something more useful that what I just posted, I'll put it up here and if anyone wants to ask me about my own Disability application process, feel free to do so.