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Author Topic: What symptoms apart from Hypermobility do you have  (Read 14164 times)

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Offline Shazinoz

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What symptoms apart from Hypermobility do you have
« on: May 19, 2003, 05:19:54 AM »
For me it is:
Hypermobility obviously
IBS
Allergies
Eczema
Asthma
Tinnitis
Perforated ear drums (3 times  ::) )
Dislocations
Subluxations
Torn Ligaments (easily)
Tibial torsion
chrondomalacia patella
RSD
Trivial Mitral and Tricuspid valve regurgitation
Increased peak flow across aorta
frequent chest and sinus infections
Nerve problems
foot drop
Insomnia
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
rashes
optic nerves look like I have Glaucoma (but I DON'T)
photophoia (eyes)
migraines and headaches
JRA
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)
Sharon
2 ACL 'reco's', 3 'scopes', Pain, JRA, EDS, RSD, CMP, osetochondral defect & #, synovitis, adhesions, nerve damage, foot drop, MCL damage, tendonitis, fibrosis, ligament damage AGAIN, dislocations +++

Offline Lizzie - UK

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Re: What symptoms apart from Hypermobility do you
« Reply #1 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:

Hypermobility
IBS
Allergies
Mild form of Eczema
Mild form of Asthma
Subluxations
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!! ;)
Lizzie
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
Debridements/Lavages
Deep chondral fissure in crest of patella
Awaiting MRI - LK
TKR - RK

Stacey

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Re: What symptoms apart from Hypermobility do you
« Reply #2 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)

Hypermobility
Allergies (environmental)
Asthma (mild though, well up until last week at least)
Tinnitis (occasionaly)
Ruptured Eardrum as a child
Dislocations (think my wrist dislocated)
Subluxations
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 :)

Stacey
« Last Edit: May 19, 2003, 06:40:01 AM by Stacey »

Helen_uk

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Re: What symptoms apart from Hypermobility do you
« Reply #3 on: May 19, 2003, 08:36:22 PM »
Very bendy (Tecnical terms)
Sinuses and ear infections 2 perforations.
Sore throats.
Numerous dislocations of:fingers
                                        knees
                                         hips(in embarassing situations need i say more)
                                        both shoulders
                                        neck probs
                                        back probs
                                        recurrant infections
                                        fatique and bad sleep patern
                                        excema
                                        ibs
                                        bone fractures mainly chips
                                        pain problems
                                        sweats
                                        depression
                                       
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















SL99

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Re: What symptoms apart from Hypermobility do you
« Reply #4 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
xxxx

Offline rhea

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Re: What symptoms apart from Hypermobility do you
« Reply #5 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

scoliosis

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

IBS

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

Fatigue

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

-rhea

7 yrs of knee troubles (maltracking, maybe plica).  
Finally found wonderful OS(#4)!
Diagnostic scope+biopsy schduled for sept 23,2003  
HMS/EDS III
Chronic joint pain,subluxations,microtraumas...

Offline Shazinoz

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Re: What symptoms apart from Hypermobility do you
« Reply #6 on: May 22, 2003, 05:27:31 AM »
LOL M,
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.
Sharon
2 ACL 'reco's', 3 'scopes', Pain, JRA, EDS, RSD, CMP, osetochondral defect & #, synovitis, adhesions, nerve damage, foot drop, MCL damage, tendonitis, fibrosis, ligament damage AGAIN, dislocations +++

Offline Shazinoz

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Re: What symptoms apart from Hypermobility do you
« Reply #7 on: May 22, 2003, 05:39:36 AM »
OK here are some more for me:
Scoliosis
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
Dermatofibroma
Sebaceous cysts
Allodynia
Asthenopia
PAIN <LOL> (yeah that was n't expected was it) <LOL>
and More again
2 ACL 'reco's', 3 'scopes', Pain, JRA, EDS, RSD, CMP, osetochondral defect & #, synovitis, adhesions, nerve damage, foot drop, MCL damage, tendonitis, fibrosis, ligament damage AGAIN, dislocations +++

Stacey

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Re: What symptoms apart from Hypermobility do you
« Reply #8 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 :)

Stacey

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Re: What symptoms apart from Hypermobility do you
« Reply #9 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 :)

Stacey

SL99

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Re: What symptoms apart from Hypermobility do you
« Reply #10 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/exhale...as 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)

Spheriods

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
xxx

Offline Shazinoz

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Re: What symptoms apart from Hypermobility do you
« Reply #11 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
Sharon
2 ACL 'reco's', 3 'scopes', Pain, JRA, EDS, RSD, CMP, osetochondral defect & #, synovitis, adhesions, nerve damage, foot drop, MCL damage, tendonitis, fibrosis, ligament damage AGAIN, dislocations +++

Stacey

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Re: What symptoms apart from Hypermobility do you
« Reply #12 on: May 26, 2003, 05:20:32 AM »
Hi

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?

Stacey

Offline Heather M.

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Re: What symptoms apart from Hypermobility do you
« Reply #13 on: June 04, 2003, 02:37:54 AM »
Stacey,

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)
Knock-kneed
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....

Heather
« Last Edit: June 04, 2003, 02:38:35 AM by hmaxwell »
Scope #1: LR, part. menisectomy w/cyst, chondroplasty
#2-#5: Lysis of adhesions/scar tissue, AIR, patellar tendon debridement, infections, MUA, insufflation
#6: IT band release / Z-Plasty, synovectomy, LOA/AIR, chondroplasty
2006 Arthrofibrosis, patella baja
http://www.flickr.com/photos/hmaxwell

Offline Liz

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Re: What symptoms apart from Hypermobility do you
« Reply #14 on: August 01, 2003, 08:47:12 PM »
Mine are:

Hypermobility
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.  :)

Liz















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