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Author Topic: List of all symptoms / side effects of Hypermobili  (Read 4326 times)

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Stacey

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List of all symptoms / side effects of Hypermobili
« on: February 21, 2003, 01:00:21 AM »
Hi Everyone

After a unsuccessfull visit to my OS yesterday I am being sent to a rheumy.  Also I am doing some self teaching about Hypermobility (as my OS says i have this).  I am going to my GP tomorrow and was wondering if you could help me out with some of hte symptoms and side effects of hypermobility.  I know the main sympton is
the 9 or 11 breighton scale
I was wondering about side effects or other aspects such as ear problems, tiredness, iron defincany, faintness, nausea, medications having limited effects, asthma etc.  
I would like to discuss this with my GP tomorrow so any quick replies are greatly appreciated

SL99

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Re: List of all symptoms / side effects of Hypermo
« Reply #1 on: February 21, 2003, 01:48:24 AM »
Hi Stacey,

It's pretty difficult to give you a solid list of symptoms for hypermobility to be honest as an awful lot depends on the cause of your particular problem. For instance there is the Hypermobility syndrome, benign types of hypermobility, acquired hypermobilty from other illnesses/situations plus there are the major connective tissus disorders that involve ligament laxity and hypermobility too.

I personally come into the latter category, but that doesn't mean that anyone and everyone with hypermobility is going to have a connective tissue illness - so don't panic! The majority of hypermobiles come into the benign and acquired categories, leading to a diagnosis of Hypermoblie Syndrome or Benign Hypermobility syndrome.

Each of the different causes for Hypermobility have there own set of symptoms and possible "occurences" though including affects on other body functions, so it's important to find out if your other health worries are linked to it or not.

I guess one of the main things you need to ask your doctor about is the possible cause and effect of your hypermobility and that might help you find out more about the types of symptoms if any that can be linked with it. He may also be able to give you a better idea of that too. Other than that the best advice I can give you is to maybe do a search on the likes of Google.com etc for Hypermobility Syndrome as this will give you some more information about the condition and it's effects.

Hope this of some help to you and I hope to offer you more advice when you have a better idea of your situation. Take care and good luck with the appt.

Love........Jo
xxx

P.S. For more info about hypermobility and connected disorders check out some of the previous posts in this section as there are some useful bits of infomartion and also weblinks to helpful sites too. The  Beighton scale one is particularly good as it gives you a good indication of your hypermobile status.

Offline Shazinoz

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Re: List of all symptoms / side effects of Hypermo
« Reply #2 on: February 21, 2003, 01:29:15 PM »
Ok, Stacey
As Jo says there are many different reasons for Hypermobility and so never cause problems and others like the condtionds Jo, Rhea and I have cause many many problems.
The 9 Point Breight Scale is as follows.
* thumb to forearm (1 point for each arm so possible total of 2),
* Elbows Hyperextending to 10degrees or beyond (ie bend backwards 10 degrees or more in the wrong direction) (1 Point for each arm for a total of 2 points);
* Palms flat to floor with legs straight (1 point)
* Knee hyperextending to 10 degrees or beyond  (1 point for each leg for a total of 2 points);
* bending little fingers back to 90 degrees or more (1 point for each hand for a total of 2 points)
For a total of 9 poitns. a score of 4 or 5 or more is indicating of Hypermobility.
Hypermobility can be just that, the ability to move beyond the "normal" range. Ie. double jointed.
When you have hypermobility + symptoms such as joint pain then you are said to technically have Hypermobility syndrome, then with some of the "hypermobility syndrome's" can include things like ear problems, fatigue, (well fatigue comes with hypermobility due to the fact that you body has to work so hard just to hold itself togehter that it doesn't "rest" properly, faintness due to blood pressue issues and more, neusea due to many things including medications), Asthma, alleries and more.
There is a LOT that can go with these disorders and if you look up
Hypermobility Syndrome,
Hypermobility,
Ehlers Danlos Syndrome,
Marfans Syndrome,
Oseogenesis imperfecta Tarda,
and Connective Tissue Disorders on the internet you may find a lot more abo0ut these most if not all of these are Genetic , so chances are that other family members show signs and symptoms of it too, or it can be a spontaneous mutation starting with you.
If you look up under the "Useful Web Links" section int he index then under "Joint Hypermobility/ Ligamentous Laxity"  you will find a heap of web links/ URL's for Hypermobility and some of the Syndromes.
Hope this helps and I suggest that you print out the stuff that seems to fit "you and your symptoms" for me this is HEDS or Ehlers-Danlos Syndrome Hypermobility Type, I was diagnosed pretty mnuc with HMS (hypermobility Syndrome) but I have to many Internal and Other problems for it to be this most likely and it is most likely HEDS.
Hope this helps and if t=yoiu think it is one of the Genetic disorders then I suggest you ask to get a refferal to a geneticist and tell the rheumy all about it and ask there opinion. Take as MUCH medical information on yourself as you can and as far back as you can . Fo me this entailed trying to track down ALL of my medical records from GP's ER's Hospital and everything pretty much since I was born (A huge task but it can be done here under the freedome for information act)
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: List of all symptoms / side effects of Hypermo
« Reply #3 on: February 21, 2003, 04:01:12 PM »
Hi Jo and Sharon

I have looked at the breighten scale and have a 8/9.  (The only one i cant do is the foot and hand on the floor with legs straight) It has only been this last month that myother joints have been giving me problems, and these last 3 weeks i have been tired, weak, feeling sick (even though nothing is wrong) and having spmtoms of depression.  I can hardly slep at night now due to a back ache and my shoulders, fingers and wrists all hurt as well.  I am on celebrex but that doesnt seem to do much for any pain.   Would I need to print out / find all my records to see the rheumy?  Can s/he make a HMS diagnosis?  What can be done for this?  Well I am off to my GP appt.  Thank you for all your help :)

Offline rhea

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Re: List of all symptoms / side effects of Hypermo
« Reply #4 on: February 21, 2003, 07:45:02 PM »
Hi Stacey,
The celebrex could be responsible for making you feel so weak and sick.  I am chronically tired, weak, nauseas, and have many many joints cause problems each day.  I'm not sure how much is drug related, but I have my suspecions.  I would not put much faith at all in your GP for any kind of diagnosis.  GPs deal only with very "general" stuff and are best really at reffering, and some are even lousy at that!  Don't expect a diagnosis the first time you see your rheumy either.  I did and ended up getting disapointed!  Likely you'll be examined and than sent for a huge array of tests.  I had nine vials of blood siphoned off me just for the blood tests alone.  And after that, two visits with my rheumy and three phone visits with her and I still do not have a definite diagnosis.  I have gotten an 'its probably ehlers danlos syndrome or marfans' syndrome' but am being sent to a geneticist to get the "official" firm diagnosis.  So perhaps you can skip a step and try to get your GP to refer you to the geneticist if at all possible.  I'm not saying the rheumy was a waste of time as she ruled out hundreds of other conditions.  Just be prepared to be super patient with all the tests, examinations, and endless visits with specialists.

Byes for now.  Here is to getting your body sorted out too!

(((hugs)))

rhea

ps, Im so sorry your OS visit did not go well! Has he given up or run out of ideas?  Can he do anything more to make your knee more useable?
« Last Edit: February 21, 2003, 07:46:13 PM by 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 AC

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Re: List of all symptoms / side effects of Hypermo
« Reply #5 on: February 21, 2003, 07:54:33 PM »
Just wanted to say, I am 8/9 on the scale too.

I also cannot do the touching floor one :-0
Lateral Release along with patella cleanup and bone spur shaving - Early September 2002 - Had a blood clot (DVT) as a complication.
TTT, Scope, and LR in mid June 2003.

SL99

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Re: List of all symptoms / side effects of Hypermo
« Reply #6 on: February 21, 2003, 09:54:51 PM »
Hi Stacey,

I really hope your appt with the doc went well, please let us know how you got on and what is happening. I've been thinking of you and sending good vibes!  :)

By the way, with Rhea mentioning the geneticist I just wanted to point out that you would only be sent to see one if your dr or OS thought the underlying cause of your hypermobility was a genetic issue i.e. down to one of the connective tissue disorders we've mentioned. That would depend on your symptoms, medical and family history and other criteria too. So it's by no means certain  that a genticist will be needed, and there's every possibilty that the Rhuemy wil be able to be more help to you than for the likes of Rhea and I who have the underlying conditions.

I'm not saying that you don't/wont need a geneticsit, I'm just letting you know that it's not set in stone that one will be nessary in tyour situation that all. What ever happens though be prepared for a lot of tests etc as it's often a long drawn out process pinpointing the causes of these things. Some times they don't find a reason for it and it's just classed as Benign Hypermobility, but it's important to rule out any of the other causes first obviously.

Oh and on the Bieghton scale thing I have 9/9 and with the other Carter Wilkinson (I think it's called - check the Out of Interest thread for more info) scale I have 2 major and 4 different minor criteria too.

Take care Stacey and I hope all goes well for you. Rememeber I'm always here if you need any advice or just some support and a hug - feel free to PM anytime too.  :)

Love........Jo
xxx

Stacey

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Re: List of all symptoms / side effects of Hypermo
« Reply #7 on: February 21, 2003, 11:11:40 PM »
Hi All

The dr appt with my GP didnt go too well.  He said all my bloodwork came back normal so that is good.  I asked him about the hypermobility issue and he said that it just maens your joints overextend and there are no other related problems.  he is very old fashioned adn I am not really to fond of him (but hte waiting list for a new dr is over 2 yrs and i dont know where i will be living at that time) so i just dismissed it and will wait to see the rheumy.  He did change me from celebrex to bextra as he says it is more powerful at pain relief then the celebrex is.  I dont think mine is anything to do with heredity since no one one either side has anything like it realy.  My dad has loose joints but nothing has come from it.  My uncle has some type of bone disorder as a child but those are the only two people that we can think of with any type of joint problem.   I am used to the endless tests and things being done.  Have dealt with that all my life.  Just thankfully I found a place to come and vent :)  Thank you again for all your replies :)  

Offline wriggley

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Re: List of all symptoms / side effects of Hypermo
« Reply #8 on: February 21, 2003, 11:19:53 PM »
hi guys,

a quick question, know bare in mind theres nothing wrong with me, i score i think about 8. Does anyone else have mild  to moderate hearing loss.  I didnt discover this until i had my pre-discharge medical before i left the Navy

wriggley
Paraplegic(inc. L5) due to a spinal cord bleed along with previous knee and hypermobility problems

SL99

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Re: List of all symptoms / side effects of Hypermo
« Reply #9 on: February 22, 2003, 12:52:37 AM »
Hi Wriggley,

I've had hearing/ear problems all my life leading to several operations and leaving me with conductive deafness in my left ear and reduced hearing in the right too. I've recently found out that the cause of my audio trouble lies with my underlying condition, as it can play havoc with the upper respiratory and audio canals. I have deformities and severe Ustation (sp) tube dysfunction due to the actual connective tissue issue and also the characteristic narrow face in my condition too apparently.

I've had several lots of gromets, preferactiosn and failed grafts etc and I'm now at the nothing much else we can do but keep on top of infections and learn to live with it.  :-/

Stacey, sorry your GP isn't overly helpful - I have one like that too. I swear he puts paid to the idea that only blonds are dizzy!! I hope that you get more joy from the Rhuemy.  :)

Take care all..............Jo
xxx
« Last Edit: February 22, 2003, 12:53:23 AM by SL99 »

Offline Shazinoz

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Re: List of all symptoms / side effects of Hypermo
« Reply #10 on: February 22, 2003, 07:53:11 AM »
wriggley
I too have hearing loss, eardrums are made of connective tissue/collagen too and as most of these disorders are collagen/connective tissue related hearing loss can be a part of it.
Stacey,
Do you know what knind of Bone disorder your uncle had (was it brittle bones or Osteogenesis imperfecta???).
Celebrex is also the NSaid I think I read about that can actually INCREASE joint mobility (not a good thing in a hypermobile) I will have to look through my records to see if it was celebrex ( It tried it and found it useless). I take Vioxx now.
You don't Need to or HAVE to print out or take any medical records but everything you can take can increase the chances of you getting a diagnosis, the more information the better.
Your GP is W R O N G being hypermobile doesn't J U S T mean having joints that move further than normal it can mean a WHOLE lot more.
Also remember you can score a 9/9 on the beighton scale and have no other problems or score 4/9 and have so many problems that you can't lead a "normal" life and are permanently disabled.
On the Brighton Socre (that is what Jo was talking about) you can find it at http://www.hypermobility.org/diagnosis.shtml
I score 2 major and 3 or 4 minor major criteria 1 and minor criteria 1 are mutually exclusive, and major criteria 2 and Minor 2 are also mutually exclusive as well. In other words you can't count it as a major and a minor criteria.
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 +++

SL99

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Re: List of all symptoms / side effects of Hypermo
« Reply #11 on: February 22, 2003, 05:39:28 PM »
Thanks Shaz - I always get my bendy scales mixed up!  ::) Cheers for the info about Celebrex too, my dizzy GP put me on them and my joints have been more hassle since I started it. I'm going to see if I can get the referral to the pain clinic brought forward to before the final diagnosis (which could be another 6 months!) as I really need help getting this under some kind of control - my life revolves around the pain at the minute and i'm having to take things like Dihydrocdiene and Pethedine just to get any releif and that's only because I'm unconcious!!

Stacey, while like Shaz says there's no such thing as just hypermobility as it has far reaching effects even in it's most basic form, I think maybe what the doc was meaning is that you have the basic hyperextension problems or hypermobilty syndrome rather than the genetic conditions that cause hypermobility and lead to the major joint subluxations and dislocations.

A lot of hypermobility problems can be managed with correct physio, management and bracing and occasionally surgery so they don't ever lead to the dislocations and joint damage seen in the hereditary, progressive connective tissue problems. I'm in no way trying to trivialise or underplay your problem here by the way, just trying to reassure you that it's probable that you don't have some of the more nasty causes of the hypermobility situation. EDS, Marfans etc are rare and unlikely causes of hypermobility and the majority of cases fall in to the familial hypermobilty or benign hypermobility syndromes.

Obviosouly I can't sit here and say categorically that it isn't a connective tissue problem....but I just wanted to let you know that it is unlikely and that Rhea, Shaz and I are the execption rather than the rule with hypermobility.  :)

Fingers crossed that you find out more about your condition and manage to get it controlled Darl. Thinking of you and sending a hug.

Love.........Jo
xxx

Stacey

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Re: List of all symptoms / side effects of Hypermo
« Reply #12 on: February 22, 2003, 11:12:09 PM »
Hi All

Just wondering what exactly you mean when you talk of connective tissue/collagen.  How do you tell if you have this type of things?  As a sidenote I also have had ear problems my entire life.  I get infectiosn about 3 times a year at least, have tinnitus and have burst my eardrum as a child.  I realize I probably just have HMS or BHMS but just want to do my resaerch before i go to any specialist.  Also can someone translate this beighton scale into english lol.  I understand hte mojor criteria but not hte minor criteria:
Minor Criteria

A Beighton score of 1, 2 or 3/9 (0, 1, 2 or 3 if aged 50+)

Arthralgia (> 3 months) in one to three joints or back pain (> 3 months), spondylosis, spondylolysis/spondylolisthesis.

Dislocation/subluxation in more than one joint, or in one joint on more than one occasion.

Soft tissue rheumatism. > 3 lesions (e.g. epicondylitis, tenosynovitis, bursitis).

Marfanoid habitus (tall, slim, span/height ratio >1.03, upper: lower segment ratio less than 0.89, arachnodactily [positive Steinberg/wrist signs].

Abnormal skin: striae, hyperextensibility, thin skin, papyraceous scarring.

Eye signs: drooping eyelids or myopia or antimongoloid slant.

Varicose veins or hernia or uterine/rectal prolapse

Thank you everyone.

PS Shaz,  I dont know what exact bone disorter my uncle had all i knwo if that it was a degenrative bone diorder and he ended up having to have steel rods in his legs for about 2 years.  

Offline Shazinoz

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Re: List of all symptoms / side effects of Hypermo
« Reply #13 on: June 18, 2003, 05:46:29 AM »
Sorry Stacey but I missed this when it was posted  :-/ :( :'(.
Lets see the english version would go something like this.

A Beighton score of 1, 2 or 3/9 (0, 1, 2 or 3 if aged 50+)
[The above means that you score a point if your Beighton score is 1, 2 or 3 out of 9 or using the lower scores if over 50 yeaes old (as some people stiffen up with age. ]

Arthralgia (> 3 months) in one to three joints or back pain (> 3 months), spondylosis, spondylolysis/spondylolisthesis.  
[Arthralgia is simply joint pain, so if you have had joint pain in 1 to 3 joints (or more) for more than 3 months you count in this one, or if you have had back pain for more than 3 months, or any of the above spinal diseases]

Dislocation/subluxation in more than one joint, or in one joint on more than one occasion.  
[This one is simply if you have ever had a dislocation or subluxationin more than one joint or in one joint more than once]

Soft tissue rheumatism. > 3 lesions (e.g. epicondylitis, tenosynovitis, bursitis).  
[soft tissue rheumatism is simply a collective term for the inflamatory soft tissue probles, like tendonitis, and heaps of other greater than 3 lesions simply means if you have had tendonitis etc in more than 3 spots or more than 3 different times (but mainly in more than 3 spots on your body (ie your thumb, ankle and knee etc)

Marfanoid habitus (tall, slim, span/height ratio >1.03, upper: lower segment ratio less than 0.89, arachnodactily [positive Steinberg/wrist signs].  
[Marfanoid habitus is a set diagnostic look of the human body the person with this is tall and slim and has unusually long arms (they are 1.03 or above longer than height of body (so this mans if your body was 1 meter tall and your arm span (finger tip to finger tip with arms at there widest)  was 1.03 meters then you would have this part of the habitus. arachnodactily is long fingers and positive Steinberg/wrist signs is the wrist sign is when the Thumb and index finger overlap each other when encircling the wrist and the Steinberg sign is when the entire thumbnail projects beyond the ulnar border of the hand ie when you cross your thumb across the palm of your hand and the entire thumb nail sticks out the other side (I think)]

Abnormal skin: striae, hyperextensibility, thin skin, papyraceous scarring.  
[Abnormal skin is just that skin that isn't "normal", striae are stretch marks, hyperextensibility is stretchy skin (where you can pull the skin on your forearm up more than 4 cm's or so), papyraceous scarring is paper like scarring where the scars are thin]

Eye signs: drooping eyelids or myopia or antimongoloid slant.  
[myopia is near sightedness, antimongoloid slant is a downward slant of the eyes]

Varicose veins or hernia or uterine/rectal prolapse

Hope this helps to de-mystify some of this list of symptoms for you. And I am SO SORRY that I missed it when you posted it
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: List of all symptoms / side effects of Hypermo
« Reply #14 on: June 18, 2003, 06:10:43 AM »
Hi Shaz

Thank you so much for clarifying this :)  It will definaly help when I go to my OS in august :)

Stacey















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