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Offline Lizzie - UK

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  • Fibromyalgia diagnosed Dec 2003 - OA in both knees
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Any of you suffering from not only HMS but also ..
« on: January 15, 2005, 02:55:34 AM »
from Fibromyalgia too.

I always wondered why I was in soooo much pain and I discovered that I have Fibromyalgia too, as well as bilateral OA in my knees and bicep tendonitis/impingement syndrome.

Luckily I'm on heavy controlled meds.

I would be interested to know if anyone else has this diagnosis.
Past History of L&R Knee
Bilateral OA
Medial Meniscal Tears
Lateral Releases & Medial Reefings
Ruptured LCL, MCL & PCL
Adhesions in the interconylar notch of ACL removed
Suprapatella plication
Deep chondral fissure in crest of patella
Awaiting MRI - LK

Offline hollilyric

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Re: Any of you suffering from not only HMS but also ..
« Reply #1 on: July 18, 2005, 09:01:05 AM »
my rheumatologist who diagnosed me with HMS said that i had fibromyalgia too. i'm in a huge ammount of pain and take 100mg tramadol, 50mg dihydrocodeine with 1000mg paracetamol 4 times daily and 100 mg amitriptyline at night and find that they barely take the edge off. i had more surgery two weeks ago and was having lots of morphine butit didn't help at all. what are you on? does it work?
there is lots of research that people with HMS have poor tolerance of pain killers esp. opiates.

do you belong to HMSA?


Right knee LR and TTT 1997
Bilateral arthroscopies, left knee LR June 2005
Left knee TTT December 2005
Bilateral arthroscopies & debridement Jan 2011
Ehlers-Danlos III
Grade 4 OA in patello-femoral compartment requiring bilateral TKRs

Offline Jeatmonkey

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Re: Any of you suffering from not only HMS but also ..
« Reply #2 on: July 19, 2005, 03:40:13 AM »
Hey guys,

I have HMS/HEDS and while researching I came across a lot of research articles trying to find out if there is a connection between joint hypermobility and Fibro.  Here are two links to some articles. Hope they help.

-Steph  :)
*LK and RK-PFS, tilit recurrent subluxations/ dislocations
*01/04/05-LK Fulkerson TTT, LR
*extreme hypermobility/connective tissue disorder
*Tendonitis-both elbows
*Pulled from PT-restricted to SLR's & treadmill only due to LR- ligament laxity-LK

Offline stgiles16

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Re: Any of you suffering from not only HMS but also ..
« Reply #3 on: July 31, 2005, 03:09:05 PM »
Hi Lizzie, I have been diagnosed with Fibromyalgia too. I have arthritus in both knees as well. I have not been diagnosed as hypermobile but I am pretty flexible. I tend to shock pts with my flexability so I suspect that I may be hypermobile.

I too am on pretty strong meds. some days I wonder if my knee pain is from the arthritus or the fibro. some days I know that it is bone pain, others,,,,,, I 'm just not sure.

2 ligament recons right ankle
2 arthroscopic,
5 open knee procedures
2 Plica removals
bone spur removal
2 microfractures
4 debridements
2 open LOAs all on left knee
Arthritis,both knees, ankles, shoulders, elbows, hands,spine
LOA & PKR 2/15/06
in pain mgmt
TKR JAN 2012

Offline NancyMich

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Re: Any of you suffering from not only HMS but also ..
« Reply #4 on: August 07, 2005, 04:32:18 AM »
Hi, I just joined today and was blown away to see HMS here in knee-dom, too.  And I thought I'd have to explain everything to forum folks like those fit jocks who I see in the surgeon's waiting room and make me feel even more like a fat, middle-aged, non-athlete!  But you in this forum will understand.  I am so glad to find you.

I have always had problems with joints, but it wasn't until two years ago, when my PT told me I had hypermobile joints (Benign Hypermobility Syndrome, he says.  I say how can something that causes all this pain be benign?!) that I had any name to put to what has limited my whole life.  I started out with dislocating elbows as a toddler just by holding my daddy's hand as I learned to walk.  He really felt bad when he dislocated it by playing "airplane" with me.  Nope, you just don't pull on this baby's arms, they learned.  Mom had the pediatrician's home phone number and he'd meet us at the ER because the ER docs once sent me home with a dislocated elbow when I was preverbal and I cried and screamed all night until Mom could get me to the doctor's office, where he gently got it back in joint.  I also had some kind of problem with my feet.  I remember having bandages on that meant I had to be bathed in the kitchen sink to keep my feet dry.  Mom was not the kind to question, so she never knew exactly why the doc bandaged my feet and what was wrong with them.  I learned to walk by going sideways - scizzor motion of the legs.  We have home movies of this.   45 years ago, no one put any of this together to get a Big Picture.

Throughout my childhood I remember being very careful about carrying things, keep that elbow flexed and would  bend and straighten it again anytime it felt like it was pulling.  At age 14 I had surgery for a torn meniscus in my knee.  In my late teens, my kneecaps were all over the place and I went on and off crutches so often that friends took bets on whether I'd have two legs or four each morning when I got to school.  I kept my crutches in the trunk of my sister's car (which I drove more than she did) and took them with me everywhere.

At 18 I had surgery to reallign my right kneecap, to tighten the inside ligaments.  It was a horrible recovery and the doc said I was such a bad patient that he would not do the left knee as planned.  I was fine with that!  Stan, my PT man and I discussed this the other day as he was pulling on my frozen left shoulder (go figure, six months ago we were treating it for bursitis and working to tighten and strengthen it!) and I told him how bad a patient I had been.  He said that those surgeries are especially difficult to recover from.

Okay, now I am 46 and have fibromyalgia, hypermobile joints, bursitis in both knees, both hips, both shoulders, tendonitis in both knees, both elbows.  I have had finger pain off and on for twenty years.  For no reason at all, the finger joints become achy and if I hit the side of my fingers (like to activate the turn signal in the car) I about jump through the sunroof!  I can dislocate fingers if I carry too much - like when carrying boxes when moving.  I also get very sore fingers from scrubbing pots and pans.  I have a real problem keeping my jaw open for dental work, it jumps its track.

And now I have a frozen shoulder (which is a relief - I thought I was dislocating it just by reaching for things).  I went from dislocating it too easily to having adhesive capsulitis withing a few weeks!  My rheumatologist was dumbfounded.

Now my knees.  I knew I would end up with arthritis.  That was a given.  But the right knee that got the surgery 30 years a go is my good knee, still.  It is the left one I have problems with.  Stan and I discovered by accident a few months ago that I have lost the ability to swing it straight from a 90 degree bend.  I have never asked much of my knees, so I guess I just didn't notice.  From a sitting position, the knee can arc up maybe 10 -15 degrees, then locks.  If Stan straightens it while I relax it, I can then hold it up and push against a downward push fairly well.  He discovered that my kneecap is not moving correctly and that is why I cannot swing it through the arc.  The rheumatiologist sent me to an OS and his x-ray shows the patella sitting on the outside knob of the end of the femur.  He thinks it is stuck there, that it has been ground down on the underside so that the patella has a groove that now keeps it there.  He is afraid the patella is very thin and could spontaneously fracture at any time.  I get a CT done on Tuesday.

So that is my HMS story.  Stan says that the medical field is just starting to understand all of this.  What have been your experiences?