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Shoulder—fibrotic bands?
Posted: 11 November 2012 05:17 PM   [ Ignore ]  
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Hello, my friends! Is anyone out there developing shoulder problems? Anything from thoracic outlet syndrome (TOS), to “frozen shoulder”, to deltoid contractures, to “fibrotic bands”? I believe that is what is happening to mine, and I’m trying to decide if I should have the bands cut or not… Yikes. It looks like this occurs secondary to chronic inflammation (yup, that would be us!), if not due to trauma. Does anyone have a GREAT orthopedic surgeon, or any experience with fibrosis of the shoulder? It looks like I have a small rotator cuff tear, too, but I think it is secondary to the fibrotic contracture (I’m guessing). I believe that many of us are prone to developing fibrosis of inflamed muscles. Anyone experiencing this? Big hug, Diana

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Dr.Diana, therapeutic optometrist disabled by EDS/POTS/ME/CFS for a decade, now recovered and practicing full-time at POTS Care cheese

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Posted: 12 November 2012 08:35 PM   [ Ignore ]   [ # 1 ]  
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[color=blue]You know, TOS (thoracic outlet syndrome) is very common with us. I certainly have that. I just wasn’t anticipating an almost immediate formation of fibrotic bands that contract. Reading, it looks like it may be deltoid contracture. Yike

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Dr.Diana, therapeutic optometrist disabled by EDS/POTS/ME/CFS for a decade, now recovered and practicing full-time at POTS Care cheese

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Posted: 13 November 2012 06:53 PM   [ Ignore ]   [ # 2 ]  
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robert elrod ii - 12 November 2012 09:25 PM

I will check it out. Something that has been really acting up lately is external pressure to the knee shoulder and finger joints causing shooting pain. Like crossing my leg moving it in the wrong direction, shoulder picking things up. Trimming my nails or writing. Also I’m experiencing my first bout of insomnia. About 11 he’s of sleep since last Tuesday. Surprised I am not so much tired as hurting and exhausted but not so much sleepy. Surprisingly feel ten times worse after any sleep than before. Then after several hours get back to the normal level of discomfort.

Just wondering if it is tasks that involve looking down (head in flexion) that worsen your symptoms, as I found this position exacerbates things. Have you ever had a head/neck MRI scan ? 

Also, regarding the ‘feeling worse when I wake up’ situation, I had 5 years of sleeping problems waking up every 2-3 hours at first with tingling, then numbness, then paralysis, developing into excrutating pain, waking up gasping, cold but wet through with sweat, and/or feeling like I had the worst hangover - when I don’t drink (because I’m alcohol intolerant), which took several hours to dissipate, once I was up and about. This was all almost cured by wearing a philadelphia collar on a night (I have to wear it 24/7).

What triggered your symptoms originally, can you link it to anything ?
Regards
Barbara
(UK)
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Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; GERD; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella Oct 2002 (worse by Oct 2004); Whiplash Associated Disorder (WAD); 3mm Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Mild Scoliosis; Ehlers Danlos (EDS) type 111; Osteoarthritis; Arrhythmias (Bigeminy and Trigeminy). . . and now Mitochondrial Dysfunction, Mineral (Mg,Mn,Cu,Zn,Selenium), CoEnzymeQ10 & Vitamin (C,D,B3,B12) Deficiencies!

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Posted: 13 November 2012 07:31 PM   [ Ignore ]   [ # 3 ]  
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Dr. Diana - 11 November 2012 05:17 PM

Hello, my friends! Is anyone out there developing shoulder problems? Anything from thoracic outlet syndrome (TOS), to “frozen shoulder”, to deltoid contractures, to “fibrotic bands”? I believe that is what is happening to mine, and I’m trying to decide if I should have the bands cut or not… Yikes. It looks like this occurs secondary to chronic inflammation (yup, that would be us!), if not due to trauma. Does anyone have a GREAT orthopedic surgeon, or any experience with fibrosis of the shoulder? It looks like I have a small rotator cuff tear, too, but I think it is secondary to the fibrotic contracture (I’m guessing). I believe that many of us are prone to developing fibrosis of inflamed muscles. Anyone experiencing this? Big hug, Diana

Absolutely…I’ve always had neck and back pain but now in the last 5 yrs. I’ve had shoulder pain into the deltoids and teres muscles and deep in the joints.  5 yrs. ago it was my right shoulder and it took about 3 yrs. to heal.  Now it’s my left shoulder and it feels worse than the right, like a tear.  Nothing helps.  My calves feel similar.  I feel like my muscles are ‘drying up’.  When I make a fist and then let it go, my fingers hold the shape of the fist.  If I flex my toes hard, they will cramp.  My back has been seizing top to bottom about once a week.

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Posted: 14 November 2012 10:47 AM   [ Ignore ]   [ # 4 ]  
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I’ve had excruciating pain in my shoulder blades, on and off, for quite awhile.  Yes, my shoulders hurt too, no doubt.  The ‘stand out’ for me is really my shoulder blades (usually one at a time and I think my right side is usually the culprit).  My PT says to “use it or lose it” and that I have to keep it moving no matter how badly it hurts or how sick I get to raise my arm(s) above my head.  I can sit on couch to ease dizziness, balance issues, and nausea.  Are these symptoms caused by pain? or independently having something so do raising my arms?  Sheesh, don’t ask me - that’s for sure.

My grandma had shoulders replaced with artificial ball joint (one at a time) due to them freezing permanently and causing massive pain and disability.  She always told me that she had arthritis.  It was bad arthritis, obviously, I’d always thought.  As bad as her ‘arthritis’ was, it didn’t seem to ‘mangle’ her hands as severely as I’ve seen in other people.  I digress as I remember….  Anyway, my genetic doctor looked at me like I was crazy when I began to describe my grandmother’s ‘arthritis’.  He did not partake of the ‘arthritis theory’ as an explanation for the ailments that I described with regards to my grandmother.  I do believe she had arthritis as well as CTD (connective tissue disease). 

For quite a long while, I’ve suspected that I was having issues with early arthritis.  I took it in stride for sure and didn’t allow it to infringe on my life.  I’m now much more overrun with ‘arthritis’ as well as a plethora of other major issues with my health.  And, yes, I am well aware that I do, indeed, have arthritis.  I am just not sure what percentage of my health issues to label as being a result of arthritis versus CTD, GI, heart, CFS, etc etc etc.

Chicken or the egg…..

In a nutshell, yes, I do have issues with my shoulders.  I also have issues with fingers, wrists, knees, toes ankles, feet.  My right knee is now worse than my left after having that infection in my right foot that no doctor would address properly for the longest times.  Chronic inflammation in my R knee.  Anyone tried Nopalea?  It’s supposed to be a miracle for reducing inflammation.  If I weren’t so darn sick that I can’t work, I’d have discretionary funds to put toward health food aka alternative ‘medicine’ types of products.  AND to get to some of the micro-specialists who have an actual treatment protocol.  Ugh.

I have no recommendation for an orthopedic surgeon.  While I have been seen for dislocation injury, I have not had surgery by an actual orthopedic surgeon.  I’ve had jaw surgery for a diff acute dislocation.  Amazing surgeon - amazing!  He’s highly specialized and only deals in the temporal mandibular joint.

Please share any information that you might discover through your journeys, Dr. Diana.  My grandma ‘had it bad’ and I don’t want to ‘follow suit’.  I can’t track my mom, she died of organ rupture when I was 1.

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Ehlers Danlos Syndrome, Fibromyalgia, Cardiomyopathy and other heart abnormalities, IBS, Neuropathy, Osteoarthritis, Hypothyroidism, TMJ (bilateral disk replacement w/autologous fat transplant), Asthma, Chronic sinusitis (remediated by successful FESS), Reversed Cervical Lordosis, Spondylosis, Kyphosis, Thrombophlebitis, CFS, and it’s probable that much has slipped my mind.  I haven’t been diagnosed with Dysautonomia but, personally, feel certain that this is playing a part in daily struggles

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Posted: 17 November 2012 11:17 AM   [ Ignore ]   [ # 5 ]  
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I have had chronic shoulder pain which flares and worsens and then gets better but never quite goes away since the early 1990s, just a couple years after I was diagnosed with MS.  The orthopedist I saw at the time didn’t know what it was but was intrigued by the strange clicking and popping that occurred when he moved my arm behind and above me.  He even brought colleagues in to witness the strange occurrence.  He told me he had only seen that particular phenomenon in football players and the like from traumatic sports injury.  Oh, he had me feeling so special.  (Sarcasm should be noted.)  He tried different massage techniques and had me do different exercises and it did eventually get better but when it came back I didn’t bother making another appointment with him.
I suppose, from reading the description, it could be ‘frozen shoulder’ with the exception that mine never goes away.  Maybe because, with my MS, I now rely on my arms so much more.  (Have been in a wheelchair full time since 2010.)  So my shoulders never get a chance to rest.

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Posted: 19 November 2012 01:22 PM   [ Ignore ]   [ # 6 ]  
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Subluxation.  THAT is what the orthopedist called it when I came in with my shoulder pain.  I’ve been trying to remember.  tongue laugh

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