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Old 02-02-2009, 03:04 PM   #1
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Frozen Shoulder rehab & RSD

I just came back from an orthopedic guy who told me that I have a frozen shoulder and need intensive rehab on both of my shoulders. He said it would be very painful, but I have to do it if I want to regain the movement in my arms.

Is there any caution I should have in doing this rehab? He said to load up on pain pills and push through it. He also said that I don't have RSD in my shoulders, so that's good. I guess I'm just worried about the pain affecting the rest of my body.

 
Old 02-02-2009, 06:47 PM   #2
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Re: Frozen Shoulder rehab & RSD

Ummm...I have an issue with what he said....load up on pain pills and push through it?!?!?!? What I say to that is.......Are you freaking nuts?!?!?

Ok, that said, you may not have rsd in your shoulders but very hard pt like that could very well cause you more intense rsd pain and well....if they somehow cause a slight injury to your shoulder then it could cause rsd to spread to your shoulders! I agree you can't leave a frozen shoulder as is, but at the same time you can't go the "suck it up" route either. I guess all I would suggest to you is see how it goes at first. Do NOT let them put you in agony. Say, no I can't and will not do any more today. No one, pt or doc can "make" you do anything. If they don't like it that's their problem. It's not right for anyone to expect you to blindly do whatever they say when it could very well cause a worsening of the existing rsd or worst of all cause spread to the very spot you don't have it in right now.

I wish you lots of luck in getting that shoulder moving again. I really do know how you feel because I had one, the left side, years ago, before rsd. It was the result of a nasty car accident. Let us know how you get on with it.

Hugs,

Karen

Last edited by Gaollan; 02-02-2009 at 06:48 PM.

 
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Old 02-02-2009, 11:12 PM   #3
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Re: Frozen Shoulder rehab & RSD

Hey Karen,

So glad I have you guys or I would not have a clue what to do. How do you know which pain is RSD? I know why they are saying my foot and leg because it was after a break and I have had continued pain even though the xrays are fine. The constant squeezing, burning, etc can be indicative. My shoulder MRI shows some mild tendonitis and very little fluid in the joint and an abnormality in the rotator cuff. So there is a reason behind the pain - is that how you can tell?

It's on the same side as my foot and calf that are in trouble, so that's why I'm a little curious as I had read that it can travel up or down. I have a lot of pain and numbness in the same hand and arm as my shoulder, but that's probably due to the arthritis in my neck. It's very good news to me if it's not RSD.

I had a feeling that this doctor really wasn't familiar with treating RSD - he's an orthopedic surgeon so I guess he shouldn't be expected to.

I'm wondering how to rehab and not cross the line. Really any time I put my arms up or bend them behind me it's really sharp pain. So, I wouldn't be doing much before I said uncle. Add on to that the CFS - which in my case one of the worst symptoms is extreme exercise intolerance. I can stretch, etc and even enjoy it (I used to do ballet), but then the next day I'm not able to get out of bed and am running fever, have a sore throat, my nervous system goes haywire - it's not pretty. This can last for a couple of days or six months depending on if I don't pay attention to the relapse right away.

So I'm worried about major relapse from CVS and possible RSD aggravation from rehabbing my shoulder. But I don't want to live where I can't cross my arms or get dressed without being in a lot of pain. Maybe they could do a nerve block before I do the rehab?

 
Old 02-03-2009, 07:57 AM   #4
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Re: Frozen Shoulder rehab & RSD

one thing that you really need better defined is just what that "abnormality" actually is in your rotator area? did your ortho have ANY clues as to just what this actually is? my ortho is very very knowledgable about the ins and outs of having RSD. you just need that level of expetise in your ortho, especially if you should end up needing any type of surgery. certain blocks just help reduce the possible risk of spread when you have RSD. i am thankful mine knows since he has had to do two knee surgeries(on my RSD knee) and just did about a year ago,a rotator cuff repair when i had two torn tendons in my right shoulder.

he could do a simple arthroscopic procedure to look at what that abnormality actually is too. it would not be an overly invasive surgical procedure. you just really do need some better definition of what that is,espescially since he is sending you for PT. better safe than sorry in this situation,you know what i mean?

i just wanted to mention a form of PT that helped me to fully rehab a hugely painful post op shoulder. i was already using this therepist even before i tore that tendon for myofascial release and craniosacral therepy. this has been the best poosible therepy for me with a ton of muscle damage and a deteriorating c spine that is constantly generating TPs like everywhere. this was the only therepy that has really worked at getting those TPs to stay minimal,or even go away in certain areas. it is a very gentla therepy that the therepist just lays his hands on certain key areas and your own energy beig forced back into your body actually does the releasing. its just insane feeling how my body just takes on a life of its own in response to that. but if you do have to actually go to PT,do it with a therepist who just does myo release and the cranio too if possible. my PT guy,like i said,does regular PT and integrates the myo into it. it actually brought a shoulder where i could hardly move it(at the start of my hands on rehab post op),to an actual good working shoulder where i was able to get back all my ROMs again. i just think from what you have described here,that a more gentle approach is needed for you to even be able to get anything out of any PT and not suffer consequences. i would seriously discuss with that ortho about seeing a good myofascial release therepist for this rehab he wants you to do. i also have some serious issues with any ortho who would tell you to just "push thru it" when you have what you have and with that undefined abnormality going on up there. you can always change orthos too to one that is much more aware and knowledgable about RSD.

i just wanted to mention the myo release to you since it helps me(been seeing my PT guy for well over a year now) soo much with alot of crappy things i have going on in a really seriously messed up body at this point. i just REALLY think this therepy could help tons with what your needs are right now. believe me,if this can help me it can help anyone. nothing BUT the myo has actually made a dent in any of my damage and pain in any lasting way. this would just be a great more gentle approach for you vs the standard nasty PT and what comes along with it. either way,i do wish you luck with getting this rehabbed and somehow getting that abnormality identified. please keep us posted,Marcia
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3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 02-03-2009, 12:27 PM   #5
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Re: Frozen Shoulder rehab & RSD

Marcia,

Thanks for such good advice. I am beginning to think my orthopedist is not the one I want to get physical therapy instructions from. He specializes in shoulders and I went to him because I heard he was conservative and I knew I couldn't do surgery. But maybe too conservative that he doesn't know much about RSD. Even though the MRI said there was a suspicion of a tear in the rotator cuff the doctor moved my shoulder around and said it wasn't a tear, but adhesive capsulitis. I'm sure he wouldn't say that unless that's the case. One bullet dodged.

But, now I need to worry about rehab. I have a PT who has helped me with my foot for the last 8 months. I like her as she understands my CFS and knows I just can't push it too far without me going up in flames. I will ask her about the myofascial therapy and see if she can do it. I really think I will hold off until I see this pain specialist and get his input. After reading what everyone here says I see that I need to be really cautious in what I do. A few extra weeks before I rehab won't hurt.

Thanks again for the info on myofascial therapy. It's so nice to feel like I am not alone and there is hope.

 
Old 02-03-2009, 05:56 PM   #6
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Re: Frozen Shoulder rehab & RSD

You can tell rsd pain from any other pain, at least I can. It depends on how your pain feels. For me.....I know the difference when the pain isn't stabbing, shooting, burning, bone deep, crushing, etc. LOL

It sounds like the pain in your shoulder and all is only from the problems you're having with the whole frozen shoulder/possible rotator cuff thing. I agree with Marcia and all that she said. She has more experience with this it sounds like. With us you have to know things to the last detail before going off on a tangent and doing something. What if the intense pt actually tears or rips your rotator cuff? Holy cow....the situation would definitely be much worse. I've heard some say that getting a block before pt is helpful because they're able to manipulate a body part better. First it's finding out exactly what is wrong before worse damage is done though.

Yes, rsd can go wherever the heck it wants to. It uses the nervous system to travel throughout the body. It's the reason why it can spread in and out. It's why a simple injury to another part is a not so good thing. Hoping you can get through this without further problems from the cfs, rsd and any other three letter words as well. LOL

Hugs,

Karen

 
Old 02-03-2009, 09:48 PM   #7
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Re: Frozen Shoulder rehab & RSD

Karen,

Thanks, that really helps me figure out the difference. My foot and calf have lingered from when I broke them and the pain is burning, squeezing, pins & needles, pain, pain - and my shoulder just hurts when I move it, or lay on it.

I think my back might be RSD, as it is deep, painful, painful, burning, kind of like a vise grip, continuous and has migrated around a bit.

Now I'm questioning my doctor. The MRI said there was something that looked suspicious that it might be a tear in the rotator cuff. They suggested another kind of MRI w/ contrast that looks at joints - forgot the name. Maybe I should have had that just to make sure. It would be a disaster if there was any tear at all that could be aggravated. I need to find another doctor to get a second opinion I think. Hopefully I can find one that understands RSD.

Yes, those three letter words will really get you! LOL!
Judy

 
Old 02-04-2009, 08:59 AM   #8
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Re: Frozen Shoulder rehab & RSD

i just wanted to mention something about actual tears in the rotator tendons? if you ONLY have a partial tear and not a full complete,you WOULD still be able to do the ROMS,but it would hurt alot upon doing them. since part of the tendon is still there,it does the work, just not as good as it would if it were not torn. i seriously feel you do need an ortho who understands RSD,and is NOT quite so conservative. if this particular surgeon has not actually done alot of true surgeries,becasue he is so conservative,he probably has not actually dealt too overly much with RSD. RSD IS a huge risk with any orthopedic surgery so he SHOULD know what the heck its about,you know what i mean?

just getting that second opinion from another ortho who does alot of shoulder surgeries and understands ALL true risks of having ortho surgery done(including the overall knowledge of how RSD develops and how to do surgeries on RSD patients),that is who would be the best fit for you right now. quite frankly,your ortho scares me. even when my orthos office sent out all the pre op paperwork before my rotator repair,there actually was alot of info in this one brochure that spoke all about the risks of RSD occuring from surgeries,and mostly ortho type surgeries. go figure. you just deserve a much more knowledgabe(and caring??) ortho. you CAN ask when you call to set any appt with any actual surgeon just how knowledgable they are in any particular area,including RSD. you DO have that right as a patient.

any good ortho should be able to accomodate monitoring RSD too. mine does,and man do i ever feel lucky there.that was kind of the luck of the draw,but he came very very highly recommended by my physiatrist.

one thing you have to keep in mind here if you do happen to have 'just' a partial tear in there right now? geting it fixed BEFORE that sucker just snaps completely one day like mine did,its a much more invasive in depth and painful surgery to recover from. vs having a simple arthroscopic(very small incision like less than an inch)where they just slide a scope in and look around at the structures,find any tears and sew them up with teeny weenie(thats a medical term) little tools that are attached to the end of the scope. much much easier on you and much much less painful post op and the rehab would be much quicker too. you just have to find out what that abnormality actually is and do it with going to an ortho who is sooo much better than doc scarey.

believe me, i wished i had had my MRI BEFORE that little sucker completly tore on me and had it fixed then. i also had another partial tear right under the one i tore completely that my ortho said was much easier to fix. the thing about partial tears is they have nothing to 'keep them' from going all the way at some point,you know what i mean? it WILL progress without some level of intervention. doing it before it gets to that point is a much easier way for you,much easier.

i would be seeking out a second opinion right now before doing any PT. you just need a bit more in depth testing done before commiting to any real hard PT. that PT alone could finish off that tendon if it is indeed torn in some way. all mine took,honeslty, was one morning i went to pick my purse up off the fridge,and snap,there it went and boy did i instantly feel that pain difference. that was when i got my MRI. i lost ROM immediately right there. i could not lift anything with that arm til way after my surgery. i had torn the most commonly torn tendon in that rotator cuff,the supraspinatus. this is the tendon that runs across the very top of your shoulder to the base of the neck area. but my ortho said from the way things looked on the inside,i had started that tear a very long time ago. it simply progressed on over the years til it went that one morning. and it sure didn't take a whole lot either.

just get to a god knowledgable,less conservative type of surgeon for another opinion and furhter testing. just find out what ALL of your true options are at this point. that next ortho may actually even be able to tell you what that abnormality actually is too. not all surgeons are created equal,trust me on that one. after six seperate surgeries done to this old worn out body,i have had great luck with some surgeons and others i wanted to run as fast as i could out of that clinic they were in,yikes..

i do wish you lots of luck with this. but DO get thee to a much more knowledgable ortho and demand to find out just what that thing is all about. find out options,all options before doing anythig that could impact your shoulder in any way. please keep us posted. Marcia
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3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 02-04-2009, 08:05 PM   #9
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Re: Frozen Shoulder rehab & RSD

Marcia,

Thank you for such an informative post. It really helps to know what I need to be thinking of. My concern now is finding a good doctor to treat me. The MRI report suggested that I have a MR Arthrogram. If I could find a doctor to order that, at least I probably would know for sure whether there is any tear. If there isn't a tear then I could just go to a Pain Management doctor to advise me on treatment for the frozen shoulder maybe.

 
Old 02-05-2009, 07:58 AM   #10
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Re: Frozen Shoulder rehab & RSD

ya know,you mentioned your body going haywire? this too could be from your SNS damage that caused/triggered your RSD too. my sympathetic was damaged at the cord level(in the actual cord before it leaves it),right at the c 8 junction where that sympathetic chain comes out and then forms that SNS chain down alongside both sides of our spinal columns? ever since my spinal cord surgery,my body is insane in its response to certain things,really bizzarre at times. alot of "normals' are totally screwed up,as in body system functions? and my strange responses to things.

my myo guy said i have an extremely high overall body tone plus the spasticity that comes from spinal cord injury too. my body is also "stuck' in the 'fight or flight" mode now,just becasue that is also governed by the SNS. the only "good" thing that came from the SNS damage is i have hypo BPs and since i also have a kidney and liver disease,that lower than normal BP is HUGE for me and my kidneys. so that one is a big plus for me personally. if you just looked up everything that our SNS actually governs,it could explain alot of your body going "haywire" too, just like mine is. just a possible connection there.
i went back to recheck what the findings actually were onyour MRI report? do you personally have a copy of your own MRI report in your possession? if not,get one,i am willing to bet there are probably(this actually is sadly normal)certain findings in there that if you did not read thru this for yourself,your doc may not have bothered to actually mention to you,believe it or not,this crap happens alot. espescially with any level of specialist? i have had very important findings that were in my reports over the years(16 MRIs done on various areas),not actually ever told to me for various resons. it really does happen to way too many people. i now obtain every single clinic note made by my docs,every test result and the op notes and other generated stuff from any hospital stay or surgery i have had. believe me,there can also be many mistakes in anyones medical files too. i found that out the hard way when assuming when disability was getting all my stuff,that everything i had been Dxed with was actually IN my medical files from like five different specialists i had to see post op from the SCI. god what a shock. alot of real dxed info was not ever put into my file from amy doc,things tha he told me i had? very crazy what actually gets into and not into our own medical files over the years.

you really DO need to start gathering all medical files from any doc you have seen and any surgeries from the hospitals and any test results from any types of testing just so you KNOW what is in them and have them at home. these do help alot too if you have to see more than one specialist? i keep the most up to date stuff and test results in a file i carry to all appts with any of my docs now. you just REALLY do need to get all of your medical records from good old doc scarey at this point just to really see what he thinks about your situation. believe me,getting your docs overall impression of just what he or she actually thinks about your situation/conditions is very useful just knowing whether they 'get it" or not? this does help tons for me.

the things that were actually in your findings of your MRI really look mostly inflammatory in nature,the tendonitis(anything you see with "itis" at the very end IS of an inflammatory nature)and alos the fluid accumulation which just occurs when anything is inflammed in a more consistant way. i had this horribly bad in my knee along with just the normal edema fromthe RSD. one other possibility for fluid to actually exist within a joint like this could also be froma synovial tear,that is the sac that surrounds every joint to keep it lubricated. this is what occured inmy knee which created a bakers cyst from hell. just finding out exactly what that abnormality is really is a very important thing for you right now. that particular finding 'could' possibly explain why the other symptoms are even there. something is just inflamming that inner joint of that shoulder right now and it could even be that unknown abnormaility. i do think that better scan you mentioned they wanted to do for you would possibly help determine what it is,or seeing another more knowledgable ortho,he may know immediately what that actually is. like i mentioned before,not all surgeons are created equal,not by a long shot.

but if you do not have your own MRI report and any of your medical records,you REALLY do need to start gathering things up. it helps me tons in just trying to stay on top of all my ongoing medical problems and keeping things straight. all you have to do here is make phone calls to all the docs offices you have been seen at, along with anyplace you have had testing and simply ask for the medical recrds dept,then tell them you need your medical records. they will send you out a release of information you just have to sign,then send back to them. in about a week or so,everything will just show up in your mailbox. for some insane reason,some places do require you pay a small fee and some dont. here in MN i have never ever had to pay one penny for any of the many records i have accumulated over that past like nine years or so? most places don't charge you anything and consider it part of your rights as a patient to actually have them and just give you them for free,which quite frankly is the right thing to do.

what you mentioned about that scan and having a doc to send you for it and everything else you mentioned? just getting in to see a brand new ortho would be able to get all of the required testing AND formulate a plan based upon their(hopefully) better opinion. your current ortho really doesn't seem to know much. a good ortho would do the right testing,find out what that abnormality is,ad then just either send you for a particular PT or possibly a small arthoscopic procedure to really "see' for certain what is going on in there. the BIG thing you have to keep inmind with ANY type of scan you have done,it its just that,a scan of an area and not a kodak moment,ya know what i mean? ALOT of things just wont or cannot possibly show up on any scan. certain things can actually be totally hidden from veiw becasue of angles or other structures just being in the way. my freaking brain aneurysm did not actually show up on an MRI of my brain. it only showed upon doing an MRA which looks only at the arteries within the brain and takes away all the soft tissue structures that hid it. so getting an exploratory type of artho really would show alot more of the 'real" inner structures.

there are many different types of scans they can do that can get a bit deeper ito certain areas too. a 3T scan(3 tesla) goes much deeper than a normal MRI only becasue it uses three times the magnestism to take pics. i had this too on my brain the same time they did the MRA. but one way or another,i think what you really need to concentrate on the most right now,is just getting to another ortho and he or she would take it from there. but until you actually find out what that abnormaility is,i would not do the PT thing unless its the myofascial release as this wont "do" anything to that shoulder or place it in jeopardy,like any savage PT person could do. been down that road too.owiee. any 'good' myo person just would KNOW your bodies triggers and it limitations. believe me, mine knows my body at this point much better than i do. he just knows when my body has had enough for that day and stops. it really IS an amazing therepy tho. kind of freaky in how our bodies respond when our own energy gets pushed back into it.

i do wish you so much luck in just getting to a good knowledgable and experienced ortho, doc scarey needs to go,soon. please continue to keep us posted. marcia
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
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