Wednesday, 18 November 2009

The symptoms I get with Ehlers Danlos Syndrome

The thing is with EDS, it seems to me that not many regular doctors know much about it. They seem to have given me lame excuses for all my troubles. When my SI joint (sacroiliac joint at base of spine)started to sub lax every morning, I went to the docs as I was in agony. He told me it was because I didn't want to get out of bed in the morning, oh how angry that made me. I asked to be referred again to a rheumatologist and he did, and so I was diagnosed with EDS. She was lovely...and for the first time, I had met a doctor who gave me no strange looks or fobbed me off as if I was crazy.
There are varying symptoms with EDS, they all vary from person to person. There are now only 9 classified types of EDS - some have recently been removed from the list, why I don't know. It can be in a form that is mild or severe. The severe type is the vascular type where it affects your heart amongst other stuff.  It even affects teeth and bowel movements. Following is a short list of some of the stuff I get:

Sacroiliac subluxation (incomplete or partial dislocation)
Hip subluxation (have to pop it back in)
Knee subluxation (have to pop it back on!)
Plantar fasciitis (inflammation in ligaments in sole of feet)
Costochondritis (inflammation of the cartilage and bones in the chest wall)
Pains and swellings of joints
Deep bone pains
Chronic fatigue and tiredness
Eye floaters
Dental and gum problems
Numb, prickling and painful skin
Stretchy slack skin(mild)
Soft velvety skin and extreme easy bruising, poor wound healing and scarring
Nodules in arms and shins
Flat feet
Hypermobility (scored 9/9 and completely bendy), muscle weakness, clumsiness
Intermittent pins and needles in arms/hands and legs/feet
Pain on exercising (this leads to extreme pain the next day)
Lack of core stability muscles, leads to weak ankles, hips and knees
Epidurals have no effect on me and a trip to the dentist can either be agonising as the injections do not work and I have even had a  seizure when given one of these damn things (EDS related I do not know)
Dizziness on standing, or standing too long, legs give way
Pains all over some days
Sleep onset difficulties
Dry eyes and mouth
Coldness of extremities and really feel the cold
Loss of sensation in legs etc etc etc!

EDS is a connective tissue disorder;our bodies are made up of connective tissues and this is the reason why it can affect the body in so many ways. It is not so well known but a lot more studies are being done into it. I will soon be going for genetic counselling and testing and will be involved in research too.

I won't go into the list that my family has - need to go to bed sometime tonight!! I hope that it gives you an insight into the various problems that I have had from a very young age.


Anonymous said...

I have been going to phys therapy for 4 years for SI joint/pelvic issues. Those were the worst, but so many joints hurt and were hyper-mobile. I just diagnosed myself with ehlers-danlos hypermobility type. it would have been nice if any of ydoctors had figured it out....with the GERD, flat feet, gum recession, constant subluxtions, chroic fatigue etc. I'm making an appt tomorrow to have this diagnosis verified (as i know it will be). could have used dr house on this one. I am sorry for your pain, but relieved to know I am not crazy & not alone.

jacqui said...

I have recently been diagnosed with severe type3. After a lifetime of failed surgerys to stabilise my joints I was tested & diagnosed by Pro Grahame in August 2010 and am now waiting to attend the pain management clinic at Stanmore, London.
I take Gabapentin and Fentanyl patches but the pain is getting worse now so hopefully the alternative therapy route might work. Its only in the last 6months that the pain has got such that I can't do much anymore and the dislocations are now many throughout the day. (I'm 43yrs) I've yet to meet or converse with anybody in a similar situation which makes it all a bit isolating.
I'm a very outgoing (or was) and active happy person but am beginning to find myself losing my sense of humour - cant have that so I'm wondering what to do to get it back!

Holland : ) said...

hi anon and Jacgui,
to sum it up...its a pain. Am attending UCLH next weel myself for physio and I want to ask so many questions about so many issues esp POTS related. When I stand my heart beat goes up from 74 to 120 etc and I want to know why. Hmm the gum recession....I have this and my dentist says I cannot properly care for my teeth....grrr....because of this I care for them more. Hope it all goes well for you both and you can get some relief x

Katie Pel said...

i'm only 19, and will be turning 20 next month, but i'm experiencing most of the symptoms you have enumerated in this post. i have always been complaining about my knees/kneecaps; they are ALWAYS popping. a chiropractor said that i have tendinitis and that i have to strengthen some of my leg muscles to prevent the pain resulting from it. aside from this and many other joint pains, i have been recently experiencing chest pains (at times, severe). and from my own research, i may have Ehlers-Danlos Syndrome of the vascular type that led to a thoracic aortic aneurysm. i was advised (through my mom) by one of my uncles, who is a doctor of different specialization, to get a 2D echocardiograph of my heart. however, i have not been able to do so due to lack of money.

anyway, upon reading your post and the comments, i'm glad to know that i'm not alone.. presuming i have the same syndrome. this is a very informative blog post. thanks again!

Anonymous said...

I don't know who or where you are but you have just blown my mind!! I have the same exact symptoms. To the letter! I was diagnosed with EDS about a year ago and the rheumotologist acted like it was nothing. I also have multiple autoimmune disorders which are complicated and you didn't mention that so I was just curious to know if you have that issue or if mine is unrelated? Crohn's Hashimoto's etc.I The inability to be anesthetized is maddening and the receding gums too. The pain is getting severe and my doctor treats me like a hypochondriac. All I take is Ibuprofen. I got a shot of steroid in February and it kept my pain away for months. It's back with a vengeance now,worst than ever! Thanks for comiserating1 For now I feel better just knowing I'm not alone(or crazy)

Anonymous said...

me and my sister are just researching this as we both suffer from facial assymetry and bowel problems, both of us have children with hyper mobility, and one with scoliosis, both of us have daughters with club foot at birth, my sister has scoliosis and sij pain and i have bilateral hip dysplasia me and my daughter have weak ankles and flat feet and need inserts in our shoes and my mum can dislocate her hip at will! i feel all the things you mentioned are so like us even the inability to get to sleep, dry eyes and mouth and lack of limb sensation! thnks you so much for sharing, if you would like to caat please contact me via facebook

Anonymous said...

Oh MY GOD! I cannot even tell you what it means to me that you all have the same exact symptoms. You are not kidding - to the letter! I cannot find one single doctor that would take me seriously and I am suffering horribly! I asked the rheumatologist I saw yesterday "who can I see for the EDS" and he said "nobody because there is nothing that you can do for it so don't bother" I am disgusted! I am not alone and I am not crazy now I know that!Thanks so much for sharing all of this! I need to do something because I can't take the pain and sickness any more. I gain lots of weight with the Lyrica and any form of steroid. Crohn's and Hashimoto's and LOTS of autoimmune crazy stuff.Epidurals don't work and nerve pain WOW! I feel so validated knowing others have the same things going on.I called the GARD (genetic and rare diseases) number today and they told me to look at their website so maybe they have more info about docs that might help?? How do you guys find your docs? where are you from? I still feel lost Thanks for the support!

Holland : ) said...

Hey you two.....gentle hugs to you both for a start!

I think what it is, there is something called BJHS which is likened to EDSH. Docs think it is 'just' hypermobility but do not tend to think along the lines that it is a collagen defect, which hence can affect EVERYTHING in our bodies.

I have pes planus (flat feet) along with pes cavus (high arch deformity), so the amount of pain and pressure that sets off in my feet, then turns to pain in ankles which then affects the knees and then the hips in turn.

You need to try to see a good rheumatologist but unfortunately there is not a genetic test to reveal EDSH. It is diagnosed on the symptoms you have.

I am now being tested for autonomic dysfunction, that often occurs with EDS. This is why that when I stand my heart rate increases and stays increased, leading to blood pooling in my legs, and syncope or near syncope.

I am in London Anon - where abouts are you? Be good to know then I may be able to point you in the right direction.

There is something you can do about EDS - correct medication, pacing and if you can get a DX, get some physio. This will improve your posture, and build up core muscles. People with EDS have to work twice as hard with exercise due to the laxity of the muscles and ligaments. I cannot even tense my calf muscles - they are just soft!

I do think that autoimmune problems can run alongside or coincide with EDS. Mast cell disorders, chiari, CF amd FM, and autonomic dysfunction can be found in people with EDS.

There is a website called and on there are some extremely interesting downloads.

Also check out this link

This is a pretty good site for information.

I do hope you can be seen by an understanding doctor. In the UK there is a specialist in London who I was seen by last year.

Just remember that you are not crazy and don't let them get to you.....

Anonymous said...

Just to let you know EDS has a horrible way of ignoring the pain killers that you take and they then do not work ? I am a fellow sufferer and find most medication does not work for me. I can suggest seeing a Chiropractor to help with some of your issues with your joints. I saw one and it helped me a little and my daughter also has EDS and has a lot of trouble with her bladder swelling up due to bruising. I find that most doctors do not know what to do. We both have to have our mitral valves checked regular because my grabs pericardium ruptured when she was asleep but she did live for 89 years, so try and keep going. Good luck for the future. Elaine UK