By Stacey on Friday, February 21, 2003 - 10:50 am:

Hello Everyone

I have had fairly severe knee problems my entire life and have had three operations on the right one. My OS cant figure out what else to do but he does say I am hypermobile. I have done the brieghten (sp?) scale tests and get a 8/9 (cant do the hand a feet on the floor with legs straigh thing). Over the last month or so I have been getting more and more health problems that no one can figure out. I am tired all the time, iron deficient, light headed, nausea, and my back hurts. The last few days my hands and fingers and wrists have been painful as well. I had been taking celebrex 200mg twice a day for about 3 years and my GP just switched me over to Bextra 10mg once a day. My OS also refereded me to a rheumotoligist but i dont know how long the wait will be for that yet. How do you go about distinguishing what is wrong? What are the key differences between EDS, HMS and Marfans? I have also had a lot of health problems in the past (and still for the most part) including chronic sinusitis, frequent ear/throat/lung infections, mild asthma, allergies (to my environment), low blood pressure (until taking the celebrex). I dont know where else to go to find out any information and any help that you can give is extremly appreciated

By Az on Friday, February 21, 2003 - 07:58 pm:

Hi stacey try this board http://www.ednf.org/looseconnections.php
It gives explantions on every type of EDS. Been light headed will come from your lack of Iron have you tried the supplement Spa tone iron plus? you can buy it from health food shops and mosts chemists. I would think a lot of ppl with HMS/EDS will have asthma due to our internal organs been made of the same lax material. in other words we just werent glued together properly. Hope you get some good info from that site
Az

By Stacey on Saturday, February 22, 2003 - 01:34 pm:

Hi Az

Just got blood work back and my iron level is fine (first test was wrong) plus i have been taking a supplement for over a month. Ive read through a lot of websites but dont understand most of the terminology. From what i understand i pretty much fit. I scar very weirdly, i bruise easily and dont heal well. I dont understand the collagen and connective tissue parts of all of this. Its all realativly new to me. I have had knee problems since i was 12 (i am 21 now) and it has only been this last month or soo that my other joints have began to actually cause me lots of pain. If someone can just help me decode all this it would be great. I am not sayin gi have EDS or one of hte genetic disorders I just want to rule anything possible out. Thank you

Stacey

By Mandy Birbeck on Tuesday, February 25, 2003 - 02:53 pm:

Hi Stacey
I`m new to this site having discovered the wonderful world of internet access ! Like you, i`ve had joint related "problems" since i was very young - broken/ sprained wrists & ankles etc.. i was the strange bendy girl at school. I`m 38 now & are discovering more & more info every day. I was diagnosed HMS a few years ago after suffering terrible pain for years. I gave up work 10 yrs ago cos of it. People have often commented about my soft ( velvety skin) - i have very few wrinkles !! Both my kids have beautiful soft skin like a peach also, & my son whos 8 has clicky joints. I`m keeping a close eye on him. I bruise very easily, finding bruises on my legs all the time but i cant recall bumping myself ! I`m waiting to see the rheumy (again) & this time i have quite a few questions for him -- thanks to this website & the HMSA one. Like you i am very confused about all this pain. My Gp said i could also have Fibromyalgia aswell as HMS, yet some people say its the same thing ! Yet when i read some stuff on here i identify with the EDS3 thing - which is HMS isnt it ?? I`m confusing myself now. Sorry to waffle on. I`m just so relieved to eventually be getting all this off my chest at last. soft hugz. Mandy. XX

By Ian on Tuesday, February 25, 2003 - 11:48 pm:

Hello Mandy.

Joints are created whenever two adjacent bones meet. They have fibrous bands of connective tissue called ligaments that stabilize the joint. Connective tissues also form the tendons that join the bones to the muscles. Ligaments and tendons usually restrict the movement of the joint, but in some people, these normally restrictive tissues can be quite flexible and allow a wider range of motion than is usual. Such a person is hyper mobile and may be called “double jointed” by friends. There are many people with hyper mobile joints and they go through life like this without any problems. Practice can increase a joint's natural flexibility just the way stretching can increase your muscles' flexibility so a person who regularly demonstrates party tricks to “freak out” friends will become more and more flexible and more and more amazing with these party tricks. But if the hyper mobile joints cause problems such as frequent pain or joint dislocation the person may have Hyper Mobility Syndrome (HMS). Living with HMS can be a major problem in terms of pain and mobility problems.

However, if the hyper mobile person has more than joint problems they may have Ehlers Danlos Syndrome (EDS). Various forms of EDS have hyper mobility as a characteristic but will also have skin stretch or other major problems that can even be life threatening. To a person who has hyper mobile joints and great pain, or even unintentional dislocations, the name given to their problem (EDS or HMS) will be of little interest to them as they seek a cure to their joint problems. As well, the medical folk tend to be finite in their definitions but a person with HMS or EDS can well have overlapping symptoms so they must explore the facts of what symptoms exist and accept these as a gene problem within their whole situation.

When a person has hyper mobility this is often found in a parent or grand parent because it is generally accepted as a gene thing related to collagen. A child born to a hyper mobile parent is not guaranteed to have this characteristic but often does.

By DebN on Wednesday, July 21, 2004 - 01:47 pm:

Hi:
The reason I'm posting this message is because I'm not sure if I have hypermobility syndrome or another condition. About a year and half ago I started to get severe back pain. The doctor told me I had mechanical back problem and then told me to quit my job, which was virtually impossible. I'm a stenographer, tend to sit alot. I ended up having x-rays and physical therapy and chiropractic treatment and ended up at a neurologist because in that six month period I was working and going to bed in severe pain. Everyone said there was nothing wrong with my back physically. The neurologist noticed by joints were lax told me to look hypermobility syndrome. I did and noticed I thought I had alot of the symptoms. I can bend to the floor, etc., I have Barlow's Syndrome ( a heart murmer}, I have irritable bowel and I have very soft skin. I punched in some of these symptoms and came up with a lack of magnesium. I started taking 500 milligrams of magnesium and a multi-vitamin and within one week I was 90 percent better and believe it or not from October to the spring no back pain. I recently have been having the back pain again, not as severe, no spasms but achy and very painful. I started looking up some of these diseases and I'm concerned I might have something that needs to be checked out. Does any of this sound familiar to any of you? Looking forward to your reply, Deb N

By Michelle Castle on Saturday, July 24, 2004 - 04:54 am:

Deb,
It sounds very familar indeed. Along with the Hypermobility Syndrome, you should be looking at Marfans Syndrome and the Ehlers-Danlos Syndrome. Some docs think the Hypermobility Syndrome and the hypermobility type of EDS are the same thing; others disagree. The presence of a heart murmur and skin abnormalities is consistent with both EDS and Marfans. Look at the National Marfan Foundation's website at marfan.org and the Ehlers-Danlos National Foundation website at ednf.org. I would definitely encourage you to get checked out. But be prepared for your doc to have no clue what you're talking about. Maybe print off some of the info from the websites to give to your doctor; I know the EDNF has leaflets you can download and print. The best thing would be for you to see a geneticist, but rheumatologist and orthopeds often diagnose EDS.

Email me if you have more questions.
Michelle Castle