Does Hypermobile joints always lead to other probs

[AC]

Hey Guys,

I took a look at your gallery and was surprised to find out that I could do them all, plus a few extras of my own.

But as of now, I only have pain/subluxion problems with my knees.  Does being hypermobile ALWAYS mean you will have other problems, or can the pains just be isolated to knees, even thought other joints are hypermobile too?

Just wondering.

Thanks,
AC

[Heather M.]

Hi everyone.

I also was able to do everything posted in the photos, except for bending my thumb back.  I thought all people could do stuff like that....I also had an evaluation for my right shoulder in PT, and the therapist said both shoulders are extremely hypermobile and do all kinds of stuff they shouldn't.  This instability is apparently what's causing my pain, combined with a torn rotator cuff or labrum.  Basically, both my knees and shoulders are hypermobile, but I am extremely flexible in general.  I thought it was just years of doing gymnastics!

I was reading Rhea's post and all the responses the other day, and was blown away by something else as well--my teeth are horrible.  I have incomplete tooth enamel and basically have every tooth in my head filled, crowned, root-canaled, etc.  I've already had 5 teeth pulled due to ongoing abcesses that got into the bone.  In all, I've had over 35 oral surgeries!  And I'm only 33....

So strange to know there are others out there like me....welcome to the club, I guess.

Just thought I'd share.  Maybe I should take some pictures for the odd bod gallery as well.

Heather

[Linda]

Hi everyone.

I can move things in strange ways as well. I really haven't had any trouble due to it though. My knee could be a result of loose ligaments I suppose. I was wondering though, have any of you had eye trouble? I have had to wear hard contacts since I was six, and have had 7 eye surgeries. No contacts allowed now. I might be looking at corneal transplants since glasses can't correct my vision. Just wondering about the eue thing.

Thanks,
Linda

[Shazinoz]

OK,
* Firstly like M said you can be Hypermobile with NO other symptoms or problems at all, in fact for these prople it is sometimes thought of as a bonus. Then you can have minor problems with just one joint or say large joints or small joints and then you can have problems with both large and small joints, and a step further is to have chronic pain and other symptoms such as teeth, eyes, Gut, Skin and so much more problems, Once you have Hypermobility + Symptoms then the Hypermobility Syndrome or HMS is said to Occur (also known as Benign Joint Hypermobility Syndrome or BJHS), which is thought my some specialists to be a mild form of HEDS or EDS type 3. Then you can have one of  the genetic Connective tissue Collagen disorder such as Ehlers Danlos Syndrome (of which there are like 9 types), Marfans Syndrome, Osteogenesis Imperfecta (again a few types) and others too to which Hypermobility can be a symptom such as RA, .
Even though you are hypermobile you can still have a simple knee injury the same as the "normal" population and it could have absolutely nothing to do with your hypermobility.
Also there is Aquired Hypermobility( ie. Hypermobility that has been trained into yu, as in Gymnasts and Ballet Dancers etc, but then also Hypermobiles tend to gravitate naturally to these sort of sports as they are thought to be naturals).
* Secondly (for Heather and others) any movement beyond Normal is Hypermobile so if you are flexible in general chances are you have generalised hypermobility with Gross hypermobility in your shoulder and knees (which can occur due to injury).
* Thirdly (Heather and others) Teeth problems can be part and parcel of some of the connective tissue displasias (disorders), my sister is 30 and has had to have ALL of her teeth removed due to from the inside out, she now has false teeth, it is also common to have overcrowding, small mouths and jaws, and a high palate. My Mother and her mother also all lost there teeth at early ages, adn my 9 year old neice has had most of her teeth removed due to lack of enamel, and it is HOPED that her adult teeth come through with enamel. You can also have gum problems and TMJ problems and Hypermobile teeth too.
* Forthly (for Linda and Others) eye problems can also be part and parcel of hypermobility disorders, everything from dislocating lenses (especially wiht marfans) to long or short sightendness and much much more.

So Welcome to the Odd Bods Club Heather M, Linda and AC, it looks like you fit the bill.
If you are interested in the diagnostic criteria for HMS and others then I can give you the web sites for this. Look first under Useful Web Links (in the Index) and then under Joint hypermobility / Ligamentous laxity for a start.

[Heather M.]

Shaz,

One thing that stands out is the word collagen...I keep seeing it again and again.  As in, connective tissue disorders...as in excessive scarring, possibly due to overproduction of collagen (they think).  I wonder if the arthrofibrosis could be part of the whole package as well?  Has anyone mentioned this to you?  I wonder how many other odd bods out there have scarring issues in their joints?

As you said, I seem to only have problems in my large joints.  My left knee has been rotten ever since I started swimming competitively at age 13; my right knee was an angel until a wipeout on crutches 1 year ago, though the kneecap was always loose (just not symptomatic).  My right shoulder has bothered me since a car accident where I suffered a fractured sternum and collarbone at age 17, the theory being that I separated my shoulder/tore the rotator cuff at the same time.  I can pretty much pop my right shoulder at will, and often feel the need to do it to relieve pressure I feel inside the joint.  My left shoulder is apparently hypermobile as well (according to my PT) but has never caused me a second's difficulty.  Let's hope it stays that way.

The only other issue is my so-called dowager's hump--the vertebrae in my back dip in at my neck, creating what will eventually become a hunchback situation if I'm not really careful!  I already have one aunt with this serious condition and I'm doing everything I can to prevent it.  On the plus side, I can do my own chiropractic adjustments simply by bending in a particular direction.....

Anyway, I'd be interested to hear any other hypermobility/scarring connections.  Maybe we're on to something here??

Heather

[Helen_uk]

I am going to borrow a camera to show you guys what my joints are like not as bad in some areas now but I am  in others.
I had sinus problems which was exasberated by my swimming but to go with the developmental abnormalities I developed at the end of my growing phase my nasal passage was crooked and on one side nearlly blocked so I had corrective surgery and I yell you what it is much worse thatn any knee op I have ever had.Yucky.
I am better stability wise as I have got older but the damage its caused over the years has contributed greatly to my aches and pains.
My neck is affected greatly and is very stiff and uncomfortable at times as is my jaw shoulders back and ankles my hips still sublux but not as frequrntly.
Oh the joys of being duff
H xxx

[Shazinoz]

Heather
Excessive scarring and keloid sp? scarring and very wide scars and fragile tearing open scars, and easy scaring, and such are all related to this funky collagen we HMS'ers (for want of a definiative diagnosis adn need for a term, HMS covers very broadly as HMS is Hypermobility Syndrome and an entity in itself (but it also stands for THE Hypermobility Syndromes of which all the others are ) EDS, OI and the others).
I am not sure about ahdesions and fibrosis etc, but I have both of these (I had the adhesions in my knee removed once befre my last reco in 1998 but none of my docs seem concerned about it) and I am sure I have more adhesions in there and also I am told the lumpy deformed bits above and below my kneecap (especially below) are fibrosis but again no one seems to care or tell me what to do about it.
A lot of hypermobiles get stiifer as they get older as we hypermobiles are more prone to OA, and microtrauma that causes like little scar tissue formations and decreases the flexibility in that area. WE tend to suffer microtrauma all the time from the "extra' movements our bodies do and the small injuries we seem to suffer constantly adn don't even thing about, like the slightly rolled ankle etc.

[Stacey]

Hi Everyone

Thought I woudl post to this one since i have been wondering about this question for about a year now.  My OS said i was very hypremobile and i figured it ended at that.  Howeverr after reading all these posts I fit most of the other things too (but not to any serious amounts).  I have horrible sinus problems adn usually end up with 2 or 3 sinus infections per month from october to march.  I have also grown into many health prolbems that you are supposed to grow out of (asthma, allergies, low iron etc).  My teeth and skin arent that great either.  Anyone have issues with their ears?  I have great hearing but get tinitus and ear infections very often.  Plus I scar easily but they do seem to go away.  I can still see where teh IV''s went in from my surgery last june.  I also bruise very easily.  I also looked at hte hypermobile pics on teh website and could do almost all of them but never really thought that was 'abnormal' until coming to this board.   Out of curiosity............. Any preemies here?  I was 3 months early and that is what most of my doctors attribute to my health problems. (BTW sorry for any spelling mistakes, I am home sick right now and the tylenol cold and sinus are starting to do me in lol)

[Heather M.]

M,

Regarding bad teeth--they run on both sides of my family, but I am by far the worst.  As an infant/toddler I had chronic tonsilitis, and the surgeons wanted to wait until I was at least three to remove my tonsils.  So, in 1970, I went on tetracycline for an extended period of time.  Of course, now doctors know not to give this antibiotic to children as it does horrible things to their adult teeth...at the time no one had any problems with it.  As a result, my adult teeth came in when I was in 4th grade with incomplete enamel.  I had poor protection against cavities, even though I brushed and flossed regularly.  

By the time I was a teenager, most of my teeth were filled multiple times, and because I grind my teeth this apparently set up perfect fracture lines.  So I'd get cracks in my molars, the dentist would do a crown, and inevitably I'd get a horrible abcess and the tooth would have to be root-canaled.  By my mid-twenties, all my molars and pre-molars had root canals, and I was starting to get recurring infections at the roots of these teeth, deep in the jaw bone.  This led to numerous oral surgeries (apicoectomy, it's called) in an effort to save the teeth.  I lost most of them anyway.  I finally had dental implants made of titanium put in about three years ago, and so far so good.  I just couldn't face the idea of dentures at age 30!!  I still have three more implants to be put in, but it's such a painful procedure, and I'm tired of hurting.  I keep putting it off  .

And as for meniscal cysts, they are not that uncommon.  Although I'm prone to cysts throughout my body--I'm just not sure if the meniscal cyst is related, because it's due to fluid seeping out through an incomplete tear in the meniscus, as opposed to cysts in the other part of the body--which are usually due to the immune system trying to isolate and deal with infection or irritation.  So I don't think you have anything to worry about.  Just mention your concerns to the surgeon when you get your knee taken care of, and make sure you are on an 'immediate mobilization' program in PT (though not necessarily immediately weight-bearing ;-)).

Hope this information helps.  It's strange how much we have in common!!

And Shaz--thanks for the collagen information.  I think I'll discuss it with my surgeon the next time I see him.....

Heather

[Linda]

WOW! Lots of info here. It is a bit overwhelming and hard to take it all in.

I guess reading all this makes me wonder how much the docs really know. Now I wonder how much of my past problems are related to my current problems. I have had 20 surgeries due to female and gut problems (they would like to work on that some more, but I have decided that it won't happen unless I wind up in another emergency situation). 7 eye surgeries. Terrible teeth problems. TOS, and of course the knee.

Makes you wonder what underlying thing created the beginning for everything to start going wrong.

Heather, I have had a terrible time with adhesions in the pelvic area. I think that counts as scarring.

Shaz, thanks for all the info!!!

I hope everyone is doing better.
Linda

[Heather M.]

Linda,

On a non-knee topic...what do abdominal adhesions feel like?  I had a botched laparoscopic appendectomy in 1999--ended up with a 6 inch Frankenstien incision going down vertically from my belly button because the surgeon accidentally severed a major artery with the scope.  I never did PT, and twice have had a recurrence of the pain that sent me to the ER in the first place (not my appendix, which was inflamed, but an ovarian cyst which ruptured and spread infection in the gut--not pretty at all).

Anyway, every once in a while I get a lightning pain in my side, and it takes my breath away.  I know it can't be the ovarian cysts because I'm on medication...I'm wondering if it's adhesions.  

Everyone is so perplexed by all my knee scar tissue problems, since I've had major abdominal surgery and no signs of adhesions there.  I wonder sometimes if my belly isn't a volcano waiting to erupt......

Heather

[Linda]

Hi Heather,

I have ovarian cysts as well. I am on strong medication and still manage to get them. Without an ultrasound, you can't rule those out. They can definately cause searing pain. As far as the adhesions go: for me, I get different problems. They are wrapped around my bowels and other parts, so sometimes cause restrictions, inflamations, and many other troubles. In a general sense, the ones that just get in the way during movement usually suddenly break loose causing a temporary "flash" of pain. This can be very intense! Once that happens, it usually feels better though. How do you know that you don't have any signs of adhesions anyway? Did they go back in and look? I have had a few visits in the hospital due to bowel obstructions caused by the adhesions. If it won't clear, I am forced into surgery. Lately I have been lucky though, and they have cleared. The last bout had me in the hospital for 9 days. They wanted me there longer, but I knew it was getting better. I can get inflamation and fevers from them if they irritate things enough. They have also encapsuled my overies, so when I do get cysts they are even more painful since there is no room for the cyst.

I am not sure if I helped you or not. Maybe you could ask me specific questions?  

Good luck!
Linda

[Shazinoz]

Linda,
I just read your post about the local anasthetics and that not working on you. I too have this probelms and I hate to say that this it can be a part of EDS, it is a known problem with us, all.
You may want to menton this to subsequent doctors and look at the following web site about it.
http://www.atv.ndirect.co.uk/Info%20Sheets/local_anaesthetics.htm
EDS III is now called Eds Hypermobility Form or HEDS

[Linda]

Shaz,

Thanks for the info. I hate to think that I might add this to my list of troubles!

I do tell the docs about my local anasthetic problem, but they usually ignore me. My dentist has learned to listen though. It always amazes me that many docs do not listen to their patients.

I hope you are having a good day!
Linda

[The KNEEguru]

Fantastic post. Thanks for taking all this trouble.
KNEEguru

Shaz,

One thing that stands out is the word collagen...I keep seeing it again and again.  As in, connective tissue disorders...as in excessive scarring, possibly due to overproduction of collagen (they think).  I wonder if the arthrofibrosis could be part of the whole package as well?  Has anyone mentioned this to you?  I wonder how many other odd bods out there have scarring issues in their joints?

As you said, I seem to only have problems in my large joints.  My left knee has been rotten ever since I started swimming competitively at age 13; my right knee was an angel until a wipeout on crutches 1 year ago, though the kneecap was always loose (just not symptomatic).  My right shoulder has bothered me since a car accident where I suffered a fractured sternum and collarbone at age 17, the theory being that I separated my shoulder/tore the rotator cuff at the same time.  I can pretty much pop my right shoulder at will, and often feel the need to do it to relieve pressure I feel inside the joint.  My left shoulder is apparently hypermobile as well (according to my PT) but has never caused me a second's difficulty.  Let's hope it stays that way.

The only other issue is my so-called dowager's hump--the vertebrae in my back dip in at my neck, creating what will eventually become a hunchback situation if I'm not really careful!  I already have one aunt with this serious condition and I'm doing everything I can to prevent it.  On the plus side, I can do my own chiropractic adjustments simply by bending in a particular direction.....

Anyway, I'd be interested to hear any other hypermobility/scarring connections.  Maybe we're on to something here??

Heather