The SPECIALIST'S OFFICE => Joint hypermobility disorders => Topic started by: Shazinoz on May 19, 2003, 05:19:54 AM

Title: What symptoms apart from Hypermobility do you have
Post by: Shazinoz on May 19, 2003, 05:19:54 AM
For me it is:
Hypermobility obviously
Perforated ear drums (3 times  ::) )
Torn Ligaments (easily)
Tibial torsion
chrondomalacia patella
Trivial Mitral and Tricuspid valve regurgitation
Increased peak flow across aorta
frequent chest and sinus infections
Nerve problems
foot drop
Increased Sweating
Hyperasthesia (painful reaction to light touch etc)
Muscle twitches/Tics and other movement disorders
Muscle cramps and spasms
loss of some hearing
easy bruising
easy scarring
optic nerves look like I have Glaucoma (but I DON'T)
photophoia (eyes)
migraines and headaches
1 leg 2cm longer than the other

and a WHOLE lot more.

I just thought it would be interesting to see what others also suffer from (as this way we tend to see that we are infact NORMAL for a HMS/EDS'er)
Title: Re: What symptoms apart from Hypermobility do you
Post by: Lizzie - UK on May 19, 2003, 06:11:20 AM
G'day Sharon

I don't have as many as you but I do suffer from the following:

Mild form of Eczema
Mild form of Asthma
Torn ligaments
Chrondomalacia Patellae
Irregular sleep patterns (just woken up after going to bed at around 12:00 am'ish)
Muscle cramps and spasms
Easy scarring (even scar from a paper cut or cat scratch!!)
Migraines and headaches
Depression (I think this is because of the HMS!)

Are these all attributable to HMS?  I was only dxd with HMS in December '01 and I've not been given much advice other than what you have written - a huge thanks BTW.

Love and hugs - not too hard though!! ;)
Title: Re: What symptoms apart from Hypermobility do you
Post by: Stacey on May 19, 2003, 06:38:36 AM
Hi everyone

I havent been around much (full time work and part time courses plus babysitting at hte same time is just way too much work!!) but found this post interesting as i was just about to start my list of 'ailments' to take with me to the rheumy on friday.  Here is mine so far (kinda copying and pasting from Sharon's and Lizzie's posts)

Allergies (environmental)
Asthma (mild though, well up until last week at least)
Tinnitis (occasionaly)
Ruptured Eardrum as a child
Dislocations (think my wrist dislocated)
chrondomalacia patella
frequent chest, sinus, ear and throat infections
'lightheaded / dizzy' frequently
easy bruising
easy scarring
possible depression (dont really want that diagnosis)
general fatigue and malaise constantly
joint and muscle pain
iron deficincy (dont know if this is related or not)
very clumsy (at least i have an excuse now :) )

Thanks for starting this post Sharon, it is making my list for the rheumy a lot easier :)

Title: Re: What symptoms apart from Hypermobility do you
Post by: Helen_uk on May 19, 2003, 08:36:22 PM
Very bendy (Tecnical terms)
Sinuses and ear infections 2 perforations.
Sore throats.
Numerous dislocations of:fingers
                                         hips(in embarassing situations need i say more)
                                        both shoulders
                                        neck probs
                                        back probs
                                        recurrant infections
                                        fatique and bad sleep patern
                                        bone fractures mainly chips
                                        pain problems
alergies to alcohol and sea food which i adore so i occasiionally have it but then I really suffer.
Inflamatory dissorder

All sounds very similar
H xxx

Title: Re: What symptoms apart from Hypermobility do you
Post by: SL99 on May 20, 2003, 03:29:37 AM
Okay here goes a list of things so far atributed to my connective tissue disorder:

Severe widespread hypermobility.

Subluxations and dislocations of all my joints from fingers and toes to hip, knees and even vertebrae.

Rare deformities of spine, pelvis, femur and knee/ankle joints plus tibial/femoral torsion and flat feet.

Scoliosis, causing pressure on my spine and rib cage.

Weakened and fragile ligaments prone to injury.

Very loose neck vertebrae that ocassinally presses on nerves that leave me unable to speak, move my arms or swallow.

Chronic on acute joint pain.

Muscle weakening and wastage

Mucular and Rheumatic pain

Pseudodystonia causing painful contractures and spasms of my ligaments especially in the legs.

Nerve damage to left leg similar to that of a partial paralysis injury.

Weakened blood vessels leading to easy bruising and bleeding..sometimes spotaneous rupture of vessels.

Stomach ulcer, gastric irritation , food intolerance and IBS.

Lung and breathing problem as yet undiagnosed but suspected down to connective tissue problems.

Erratic blood pressure and heart rate problems, still under investiagtion. Black out, dizziness and balance problems.

Major hearing problems since birth. Numerous operation on ears including ear drum grafts and reconstruction. Abnormal development of maxilofacial tubes, currently have perforated drums and 50% hearing loss.

Freaky eye symptoms from time to time where the white of my eye swell and fold over on themselves.

High arched palate, crowded teeth and fragile gums.

Numerous allergies to everything from medication to food colourings and perfume.

Sensetive fraile skin prone to reaction, tearing and scarring.

Frequent infections and viruses, lowered immune system prone to attack.

Insomnia and anxiety. Difficulty concentrating, difficulty in speaking properly at times and a mild word blindness.

Headaches, tremors and difficulty manitaining a body temperature.

Hmmm, I have a feeling I shouldn't have started this list....better leave it at that before I start scaring myself as well as bore you!  ::)

Love and bendy hugs......Jo
Title: Re: What symptoms apart from Hypermobility do you
Post by: rhea on May 21, 2003, 04:41:45 AM
Yikes where do I start...or I guess more appropriately where do I end?

Okay here goes!

LOTS of joint pain (lol the obvious one...)

3 fractures


hyper extending fingers, elbows, wrist, etc... that result in pain and soft tissue injury

inflamed/entrapped ulnar nerve in left elbow

GERD/ stomach upset and nausea


sensitivity to meat

mild lactose intolerance

spine bones 'slipping' (subluxing?  I don't know..) out of place needing to be cracked back into position

wacky, maltracking knee caps

stretched ligaments in right shoulder

subluxing R hip as well as clunking in both hips

dizzyness and vision interuptions upon standing up too fast

I OFTEN have verbal "descrepancies" where I can think the word fine, write or type it fine, but when I go to say it it'll come out all jumbled up.

poor immune system.  I'm always catching everything, get sicker than most people and take longer to recover

MULTIPLE sore throats.  It seems like every few weeks I have another!

MULTIPLE strep throat infections requiring antibiotics.  I think to date I've had six or seven bad infections

Something is wrong with one valve of my heart which I think can be related to hypermobility disorders but the dr. never told me what the thing was called...

I take FOREVER to heal from even small shavor scuffs

Weak hand grip

Poor coordination and am constantly dropping things or knocking them over

Light sensitive eyes

hypo/hyper glycemia


Low body temp. and am always cold

Poor circulation in my hands/legs and feet as well as some weird circulatory thing happening my my lower legs causing them to turn red/blue/purple with white and red blotches

Extreme drug sensitivity

Phew...thats all that I can name off the top of my head for now, but I know there are more.  Certainly puts it all in prospective for us doesn't it?  Hmmm..

(((hugs))) to my lovely odd bod friends


Title: Re: What symptoms apart from Hypermobility do you
Post by: Shazinoz on May 22, 2003, 05:27:31 AM
Jo, Stacey and Rhea have you both ever heard or had POTS or Dysautonomia suggested to you. This is quite common in EDS and the like (from what I have seen on the CEDA board and some research some of them have been involved in in the US). It can explain the dizzyness and fainting and greying out of vision etc. It is supposedly thought to occur because our veins and things are to stretchy and when we stand up etc the bood pools in the stretchy veins and we can faint or grey out or get dizzy or get palpitations etc.
Jo could you lung and breathing be dislocated ribs or even from your scoliosis ??
Rhea, the being able to think of words and write them but not say theym is something they were talking about on CEDA just this week. It is supposedly because our tongues and mouths too are hypermobile and we get literally <LOL> tongue tied.
Title: Re: What symptoms apart from Hypermobility do you
Post by: Shazinoz on May 22, 2003, 05:39:36 AM
OK here are some more for me:
Twisted pelvis and 1 side out permanently (the shorter leg in lower in the pelvis).
Irregular sleeping patterns
Very clumbsy (trip over , bump into things and drop things constantly).
Fatigue and Malaise
Raynaud's (a disease/disorder on circulation where fingers and toes are cold blue/white and sore when cold).
Nerve tingles in arms and legs
occasional nerve entrapments
Sebaceous cysts
PAIN <LOL> (yeah that was n't expected was it) <LOL>
and More again
Title: Re: What symptoms apart from Hypermobility do you
Post by: Stacey on May 22, 2003, 06:21:30 AM
Hey Shaz

I have never heard of the conditions you mentioned.  In december/ january i was actually passing out and my dr at school said it was because i was iron deficient but when my GP ran tests he said my iron was fine but it was that i had low blood pressure.  when the nurse at work took my blood pressure it was fine lol.  It would make sense to me since nothing else fits :)
Title: Re: What symptoms apart from Hypermobility do you
Post by: Stacey on May 22, 2003, 07:17:07 PM
Hey M

Its weird that you mention being able to read upside down (and any other angle)  I can also do this and all of my friends think it is weird!  I wonder if it is connected in some way :)

Title: Re: What symptoms apart from Hypermobility do you
Post by: SL99 on May 23, 2003, 02:36:51 AM
M - I've always been able to read upside down, sideways etc too! I wonder if it linked with the hypermobility at all? Our freakiness know no bounds does it?!  :D

Shaz - Thanks for the advice about POTS, that is basically what I was told when I had investigation earlier in the year, and it certainly contributes to my dizziness and black outs. Another cause is thought to be my loose neck vertebrae too though. One in particular was aggravated in a horrible riding accident about 6 years ago where I came close to paralysis. Now has a tendency to wiggle around, pressing on things it shouldn't. Normally when I'm feeling dizzy or can't focus properly, it's because the C2 vertebrae is out of joint.  :-/

My lung problems are partly caused by the scoliosis and made worse by the dislocating ribs, but I also have an undiagnosed condition where I sort of forget to breath or actually can't physically inhale/ if my lungs switch off almost. It tends to happen when my heart rate is erratic and skipping too so could be linked to that, I'm waiting to have more tests done on that.  Pretty wierd and rather frightening too at times as on one ocassion my fingers and face went blue and I had a pulse ox of only 70%.  :o

Anyway, some more symptoms of mine that I though of:

Raynauds Disease (thanks for reminding me of that one Shaz!)

Mild Scleroderma ( rare in hypermobility/EDS as skin is noramlly pliable and stretchy, yet mine is almost too tight in places)


Osteochondroma (benign bone tumour)

Wide, fragile scarring

Muscle atrophy

Visible and varicose veins

Low platelet count, thrombocytopenic purpura.

Just out of curiousity does anyone else have epicanthic folds? They are more common in connective tissue disorders than hypermobility syndrome..but I was just wondering if anyone else had them. I have and as a result the doctors thought I had a squint as a child.

Odd bod love and hugs.......Jo
Title: Re: What symptoms apart from Hypermobility do you
Post by: Shazinoz on May 24, 2003, 11:01:04 AM
I get migraine aura's and the sparkles and flashes and such.
I can also read backwards and upside down.
LOL Never thought it was ODD ;D
Title: Re: What symptoms apart from Hypermobility do you
Post by: Stacey on May 26, 2003, 05:20:32 AM

Just out of curiosity.  When i was a kid, during one of my sinus infectiosn they did a head xray and found out that i only had 2 out of 6 sinus nodes (I guess thats what you would call them).  I only have the ones under my eyes.  ANy one else like this?

Title: Re: What symptoms apart from Hypermobility do you
Post by: Heather M. on June 04, 2003, 02:37:54 AM

I have all the sinus nodes, but mine are very unusually placed.  Some of the sinus canals actually overlap and surround the roots of my upper teeth--which makes for horrible dental problems when I get an infection or have a root canal.  It's very strange and my dentist said he's never seen this before.

Anyway, I find it strange that I've never been diagnosed with HMS but have TONS of the things you guys are reporting.  And my PT says I'm hypermobile in all of my larger joints--hips, knees, shoulders in particular.

Here goes my list of woes (I'm cutting and pasting from other people's lists!  That's how much overlap there is:

Allergies (environmental, skin, food, medications)
Mild Asthma (stress induced for the most part)
Frequent Ear infections, even today
Chronic tonsilitis as a child (tonsils out at age 3!)
Endless sinus infections
Propensity to lung infection/bronchitis, pneumonia and lung polyps
Chronic unexplained infections in my body:  teeth, abdomen, knee
Dislocations (not anymore--kneecap is too scarred down)
Subluxations (shoulder, knees, hip)
chrondomalacia patella
benign heart murmur
elevated heart rate--around 85 at rest
very low blood pressure (weird considering my fast pulse)
Nerve problems (creepy crawly spider feelings)
Insomnia/Irregular sleep patterns
Increased Sweating and hot flashes
Mild muscle twitches
Muscle cramps and spasms, esp after surgery
easy bruising
easy scarring (internal and external), arthrofibrosis
rashes (got some doozies right now)
migraines and headaches
chronic tiredness/fatigue/malaise
loose neck vertebrae (can crack my own back)
Heartburn/acid reflux
lactose intolerance
frequent gastric/intestinal irritation
the slowest metabolism on the freaking planet!!  Weight gain for no reason, impossible to lose it.
slow healing
propensity to form cysts in my body:  face, back, ovaries, teeth/jawbone
HORRIBLE teeth--most are gone, remaining are root canaled with crowns

Sheesh.  When I read this I sound like a wreck, but most of these are merely irritations.  I've just always been this way....

Beginning to wonder if I don't actually have HMS after all....

Title: Re: What symptoms apart from Hypermobility do you
Post by: Liz on August 01, 2003, 08:47:12 PM
Mine are:

Chondromalacia in left knee
VERY easy bruising
Easy scarring
Flat feet
Severe acid reflux (finally have it under control with Nexium, but if I miss a pill it's back instantly)
Food intolerance... we haven't nailed this one yet but I believe it's something to do with meat or protein.  I love steak but if I eat one I literally can't eat anything for 2-3 days afterwards.  It's like the meat doesn't digest in my stomach and I feel full.  We were hoping the Nexium might help, but it hasn't.
Gall bladder issues that we also can't nail down... had an attack that lasted over a week, but an ultrasound showed no stones, only an enlarged duct.  So I don't know if I'm passing them or what.
Bad eyesight (approx. 20/600, nearsightedness)
Bad teeth/gums (More fillings in my mouth than good teeth... sigh)
Piezogenic papules (they can REALLY hurt on occasion)
Anemia that shows up on a blood test one day, and is gone the next time, only to show up again later.  Very annoying.

I'm sure there are more... those are the current ones though.  :)

Title: Re: What symptoms apart from Hypermobility do you
Post by: Riciamarn on August 04, 2003, 01:07:59 AM
Osteoarthritis - knees & spine

Fractured Sacrum 1987 & it wasn't discovered until few years later, so I live with the consequences of this

Exhaustion, don't think it's ME

Depression - but am ok @ the moment
Title: Re: What symptoms apart from Hypermobility do you
Post by: wriggley on September 15, 2003, 03:29:20 AM
hi guys!

No i didnt go among the missing just been way busy, ask sl.
Anyway this is my lot start with the stuff that bothers me most:-

Spinal cord injury - incomplete at L5/S1 due to ruptured scar tissue from a previous motorbike accident

constently subluxing vertabrae and left shoulder and hip

difficulty maintaining body temp


mild asthma

lots of large scars caused by small injuries

Flat feet (somebody in my family was diffinitely a duck!)


Constant reoccurent ear and chest infections

Some hearing loss

DVT and cramping (They love me on planes hehehehehehe)

on anti depressants until recently

and of course the standard joint problems/pain

oh and just to top it all of unrelated to the other stuff im epileptic to which can make life really interesting in oh soo many ways!  ;)

Wriggley ;D ;D ;D

Title: Re: What symptoms apart from Hypermobility do you
Post by: firefly on March 14, 2004, 12:51:41 PM
Urm I'm either a hyperchondriac :-[ or I've stumbled across something a little worrying :o. When I was 7 I was diagnosed as hypermobile by my GP and have never seen one particular specialist at all. However this is a list of symptoms I either put up with or have been to see various doctors throughout my teens and childhood. (I'm only 21)

scholiosis (was seeing some back surgeon but mum thought he was taking too many x-rays and its not that bad)
word blindness
No dislocations quite bad pain from joints being in the wrong place all over my body, I have to put them back myself (even my ribs) - sorry for the lack of medical terminology
flat feet - docs amased at how flat they are and that I still walk normally.
Thought back pain was normal till I was 12 and was told its not
mild IBS symptoms when stressed
ear and chest infections almost constant as a kid
difficult to keep warm or cool depending on temp
easy bruising & scarring
muscle cramp - have fallen down stairs because of it
dizzyness - GP told me it was "in my head" and thats a quote ::)
some blood sugar thing that no one can tell what it is
can read upside down even though I am dyslexic

Is this just a bunch of stuff? I know your not doctors but they often mess up anyway, or is that just hte NHS
Title: Re: What symptoms apart from Hypermobility do you
Post by: meses on March 27, 2004, 08:20:11 AM
i just found this board today for the first time.  my doctor has recommened knee reconstruction.  I am amazed that there are more people out there with hypermobility.  my knee pops out at the slighest.  it has popped out when i have been sitting on the couch.  I never even imagined that it coudl be related to other problems I may have.  I have chronic asthma and allergies.  socilosis, one leg is almost am inch off from the other.  I have already had bunion surgery at 25, and the doctor told me that I had really bad problmes.  he called it "Z feet"  all my joints in my feet are off basically.  and the knee problems I have had for over 20 years.  I am amazed that it could all be realted.  please let me know of any information about this.
Title: Re: What symptoms apart from Hypermobility do you
Post by: meses on March 27, 2004, 08:25:12 AM
i failed to mention my flat feet or my depression.  ok, I am not the only one??
Title: Re: What symptoms apart from Hypermobility do you
Post by: Femin3m on March 27, 2004, 11:39:08 AM
Mine are:
rolly eyeballs
i always crack
really long fingers
bad back (i think that has more to do with my big boobs lol)
slow runner
broken bones easily
long legs

i think thats it
Meses your not the only one with depression
and also what is IBS
Title: Re: What symptoms apart from Hypermobility do you
Post by: stgiles16 on May 11, 2004, 06:15:50 PM
are "really loose joints" the same as hypermobility? PT also says that I hyperextend every step that I take. Just curious. I thought everyone had "loose" joints.
Title: Re: What symptoms apart from Hypermobility do you
Post by: tiggy on August 28, 2004, 09:19:43 AM
It is amazing to find other 'rubber people' like me, people ask whats wrong and after 5 words they tune out.  Anyone been to the Hypermoblity Syndrome Association Website, alot of great information and forums.

Now for my 'gifts':

I can do everything on the scale (can't think of the name at the moment) for testing for HMS.
Dislocated 2 ribs (costochondral separation) at work.
Everything from my pinkey, to my jaw, to my toes sublaxs, just about daily.
My husband says "I'm like a bowl of Rice Crispy's" with the Snap Crackle and Pop I do.
Frequent jaw lockups, usually when I'm eating.
Heart Murmer
Possible Mirco Value Prolapse
Pinched Nerve in my left shoulder
Missing cartilage between 1 & 2 bone in my left wrist (on the top), my thumb is permentaly numb on the side, and part of my index finger as well. Always dropping things.
Spatical (spell?) Awareness, this is a HMS thing most people don't relize, you don't know where 'you' are in reference to other things. I.E. running to corners of doors, or tables.
Bone deposits on the top of both hands, both shoulders, and inside of both ankles.
Normal temp of about 95, I'm always cold and almost never sweat.
In my wrists I have 1 normal size vien, and one that is half the size it should be, causing cold hands.
I can move several bones in my neck in and out.
Cronic hip sublax, severe pain in my hip at age 12 from running long distance.Growing plates banging against each other is what I was told.
Tilted right knee cap
Tendontis in both knees (patella), and my left wrist.
Can sublax shoulder at will, pop in or out. Same with pinky and ankle.
Ankle mal-alignment (sublax not going back in place) lasting for weeks or more.
Plica tissue removal right knee
Solf MFC right knee
Can read backwards and upside down
Don't need a back scratcher   ::) No parts I can't reach
Elbows that bend 5-10% backwards (or more depending on if it is in or out)
Bending over sometimes my lower ribs hit my hips (not something that feels good)
Strechy skin, tissue paper scars (some that don't heal beyond the skin level)  I have one that I did at age 8 that sometimes bleeds under the skin on my right knee.
Horrible teeth, just up and decided they didn't want to stay together (loosing enamal)
And last but not least (most painful surgery ever) Posterior Colpoperineoplasty at age 22.

Forgot to add high tolerance to pain meds and usually takes 2 or more doses of anthesia to knock me out.
Title: Re: What symptoms apart from Hypermobility do you
Post by: smelton5 on September 15, 2004, 03:21:34 AM
I can definetly relate to many of the problems that you all have listed!  Even being able to read upside down!  But I suffer from very severe TMJ, does anyone else suffer from this too?

Title: Re: What symptoms apart from Hypermobility do you
Post by: Vudija on October 23, 2004, 09:09:29 AM
I found this through searching for something that recently happened to me.

I haven't been diagnosed for any of my symptoms, so I can't really tell you WHAT I have, or do not have. I can just tell you that I understand all of this very well. Maybe I'll get checked out now; I've never found something that encompasses all that is wrong with me.

I have a lot of these issues, but I don't see the connection. Does anyone know why all of these symptoms might be related to a joint problem?
Title: Re: What symptoms apart from Hypermobility do you
Post by: scinarie on November 05, 2004, 11:36:00 PM
I was searching for information on dysautonomia and something brought me to this site.  I read many of the posts on this line, and was struck with how many people had similar symptoms to mine which seem to be all appearing under the umbrella of Dysautonomia.

In response to one poster, if you are experiencing fainting, and don't have a dx for it yet, be sure to check into having a tilt test.  This is for diagnosisning Pots, but is also for other types of syncope (fainting).

Also, another symptom that I have been having for a long time that I recently found some other people to be suffering from is a pain in the area of the liver.  It comes and goes and changes in severity.  Sometimes it feels like I might have a tumor the size of a cantaloupe, and others it doesn't bother me.

I found a group of others with it in an IBS board.

I hope this helps someone.

Title: Re: What symptoms apart from Hypermobility do you
Post by: HK_Aubie on December 15, 2004, 10:03:29 AM
I think a couple of people mentioned iron deficiency, which can cause faintness (so presumably fainting as well? I don't know), and it can cause depressive symptoms.

I am amazed at how many others list depression.  This is something I have battled since I first began having knee problems at age 8.  

It never occured to me that other health problems could be related to my hypermobility. That's something new to chew on.
Title: Re: What symptoms apart from Hypermobility do you
Post by: shadehawk on December 15, 2004, 02:32:26 PM
Some of the things I have noticed over the years

food allergies
sinus problems
miagraine headaches
tibial torsion
flat feet
chrondomalacia patellae
tore ligaments in both ankles
hypoglycemia(sp) low blood sugar count (when this was discovered my count was 2 and dr said I should be unconscious, I had just driven to hospital)

I always run a low temperature instead of the norm (my father always was this way also) usually freaks out nurses at the hospital.