Sunday, 26 December 2010

End of 2010, where I'm at.

Its been quite a year bendy-wise.

I thought I'd do a quick recap just to see how far I'v come in just one year.

*Xrays and Mri of spine show curvature of spine and degeneration of SI joints :(
*Assessed for my 1st wheelchair - sad times.
*Start investingations for Crohns Disease - come back clear - Yey!
*GI dr and EDS dr discover my Gastointestinal system is now affected by EDS.
*Reffered to endocronologist for suspected thyroid damage from medication
*Begin physio and Occupational Therapy at Leeds.

*Recieve my wheelchair. Amazed how much freedom I now have. :)
*Getting physio back at hartlepool. knees and hips getting weaker. Walking less.
*GI nurse and EDS dr agree lower GI system failing. :(
Start wearing ankle splints and hip belt to help walking.
*Using wheelchair indoors at least 3 times a week now. Standing becoming difficult.
*Pain med review no.8

*Pain becomes much worse.
*Pain meds review no.9. Introduce Neuropathic pain medication
*Start working with new physio who is keen to learn about EDS
*Try accupuncture for pain which triggers major pain flare
*Reffered for hydrotherapy
*Stomach gets symptomatic. Begin part-liquid diet.

*Begin Hydrotherapy with great success. Pain reduced and core stability improved.
*Major hip dislocation trigging escalating hip and pelvis instability
*Hip continues to dislocate and subluxate evenutally causing impingement and nerve damage.
*Referred to Orthopaedic surgean for both hips.
*Walking deteriates to point of needng chair outdoors full time and indoors most days. Unable to self-propel outdoors and sometimes indoors. Refferd for powerchair assessment.
*Begin fainting and admitted overnight after paramedics called after bad fall. Blood pressure very low and heart rate topping 143bpm when standing and 110 sitting. Dr on duty suspects Postual Orthostatic Tachychardia Syndrome. Rheumy agrees continueing readings and symptoms suggest autonomic dysfunction and requests further tests with possible reffereal for POTS testing.
*Rheumy requests refferal to Prof Aziz in london for GI isssues
*Endoscopy booked for 5th January for upper GI issues.
*Reffered to pain clinic.

Looking back its clear in which direction my EDS is heading for now. However I have found that even though my condition may have become worse over the past few months, my abiltiy to cope with it and the amount it affects my ability to get on with my life is very differnt to what it was at the begining of the year.

I wish all my blog readers and fellow EDSers a wonderful and healthy 2011!


New Rheumy, New hope?

I recently saw my new EDS rheumy(rheumatologist)
For people with EDS, the rheumy is the top of the food chain when it comes to our long list of drs and medical professionals we see regularly.
He is the guy who is the EDS expert, the one who understands what EDS is, how it works and how it affects our different body systems...that's when we are lucky enough to finally find a rheumy who specialises in EDS!

The EDS rheumy is the wedding planner of our medical care. He coordinates all the other drs, decides what should and shouldn't happen and pulls all the other drs' tests, work and ideas together to get a full picture of what is going on in the EDS body. He then rolls out orders to the GP (family dr) to refer the eds patient to new specialists if needed, order more tests, start new or change current treatments and keep him up to date with what is going on. He will also contact other specialists working with the eds patient either directly or through the GP to discuss current treatment with the aim to either stop proposed treatment/surgery (an orthopaedic surgeon may think ligament tightening surgery will stop a joint dislocating but a EDS specialist may suspect that it will not with this patient), suggest treatment or avenues of investigation the other specialist hasn't thought of, or simply just to keep uptodate or create a new network with the specialist for future patients.

My previous EDS rheumy was one of the country's (and world's) leading EDS/HMS experts. Professor Howard Bird has made some of the most important discoveries and moved the research and treatment of eds/hms forward massively since he began taking a special interest in the condition in his early career.
His retirement shook the eds/hms community and the proposed closure of the specialist clinic that he had set up in Leeds, UK was feared.
I had been lucky enough to have been a patient of Prof Bird for 1 year before his retirement. Although I had received my diagnosis in 2007 I hadn't received any real treatment so was finally refereed to Prof Bird in December 2009 where I received a thorough assessment. It is here I found out how bad my body was affected, how much my joints had deteriorated due to lack of treatment and how I had developed scoliosis (curvature of the spine) and osteoarthritis of the SI joints (where the spine meets the pelvis.
It was also Prof Bird who noticed the obvious EDS characteristics in my Mum and due to taking such a detailed family history we discovered that both my parents had the EDS gene. My mother very affected, my dad only mildly. My mum has since gone on to receive treatment for pain and physio and is now waiting her initial appointment with my new rheumy.

So back to my new eds rheumy.

I had been given his details before my final appointment with Prof Bird by a fellow member of the Hypermobility Association (HMSA) who recommended him highly. I knew that with Prof Bird's upcoming retirement I would have to find a new rheumy experienced in EDS.
I was told Dr S. was a great dr and Prof B agreed that he would be the best rheumy for me.

My 1st appointment couldn't have gone better. Dr S. and his staff were very welcoming and pleasent and it didnt take long for me to relax and laugh at an unfortunate gramatical error on a recent discharge note with him.

We covered my current EDS issues, mainly my ongoing gastointestinal deteriation and
a new set of symptoms that some drs are suspecting could be indicative of Postural Orthostatic Tachychardia Syndrome (POTS), a form of Dysautonomia that can occur in EDS (see links at bottom for info on POTS)

I was in with Dr S for over an hour! I had to apologise profusely to the lady following me but she didnt mind 'at least he's thorough' she said. That he certainly is.

I then had lots of bloods taken.

I received a copy of the letter Dr S wrote to my gp within days.

He has requested a referral to Prof Aziz in London for my GI issues with a referral to a local GI consultant with knowledge of EDS for long term monitoring.
He has also requested that I have a number of tests done before I see my endocrinologist at the end of January. These are to look for other causes of my dropping blood pressure and raised heart rate that suggest POTS just in case.
Finally Dr S has requested copies of all correspondence from physio, orthopedics, pain clinic, endocrinology, past GI investigation and recent xrays, mri (hips and spine) and an endoscopy I am due to have next week. (To see if there is anything non-EDS causing my upper GI symptoms).

I will not be having regular follow-up appointments with Dr S as I already spend at least 1 day a week at hospital with appointments. Plus Dr S is trying to set up a eds/hms clinic and it is not financially viable to offer regular follow-up appointments to all patients.Instead Dr S said I can phone up and ask for an appointment if I have any serious issues or I can arrange a phone appointment.

I am looking forward to seeing the eds/hms clinic taking off with Dr S as it is very much needed in the North East of England.
Dr S admits he may not have the knowdlege and expertise of Prof Bird, after all he is only young and just starting his work with eds/hms patients, but he is very open and the most important thing is that unlike some drs, he will take the patient's suggestions and concerns when deciding on appropriate progression of treatment.

I am really looking forward to working with my new rheumy for the coming future and hope that as one of his patients that he will learn something from me.

links for further info :
Postural Orthostatic Tachychardia Syndrome (POTS) -

Thursday, 2 December 2010

EDS Awareness video. Get involved!

I am currently about to embark on a project I hope will help raise awareness of EDS, not only of the medical side of the condition, but also of the people it affects.

There are many videos on youtube that aim to raise awareness of medical conditions, including EDS. However they tend to either focus on the medical information OR offer a personal insight of someone living with EDS.

I aim to create a film that not only gets the medical information across but also shows the personal effect of the condition on many people, not just myself.
I hope that this film will offer a current and unique insight into the condition that can be shared with family members, friends and collegues. My ultimate aim would be that the film could be used as an awareness tool by EDS/HMS organisations to get across to medical professoinals, social care providers, schools and employers how EDS effects life day-to-day and the emotional wellbeing of the EDSer.

So I want to do the best job I can and to do this I need your help!

One of the biggest hurdles people face when trying to get drs to understand eds is that often the condition is seen as a 'one glove fits all'. That is that a hip joint of one EDSer will look pretty much the same as another EDSer. We know this is so far from the truth and that EDS never looks the same, not only from person to person but even for the same person the condition can change how it looks over time.
Its also a misconception that ALL EDSers have stretchy skin. I for one do not have stretchy skin despite having such severe EDS effects elsewhere.
Finally most EDS awareness information focus on the more common effects (loose joints, stretchy skin etc) but so many of us have serious digestive issues, related conditions such as POTS and crossovers between the different EDS subtypes.

I want to get these things across as much as possible. This film is not about repeating the same information that is already out there but is to dispell myths and start talking about the less common issues.

To help me do this I need photos, video clips, audio clips, quotes, etc.

Can you help?

Here is what I need:

Photos/video clips
*splints/mobility aids/medical devices such as TENS machines,
*GI treatment inparticular feeding tubes,irrigation systems, liquid diets, food intolerance, blending your food for liquid diets, bloating, GI surgery photos (scars, recovery etc)
*EDS skin - stretchy, super stretchy, non-stretchy, bruises, scars (typical eds scars and non-eds typical scaring), nodules, stretchmarks, poor wound healing, stitches/sutres pictures, visible veins/transparent skin/non transparent skin
*joint deformity - from reccurent dislocations, scarring etc
*actual dislocations, subluxations, sprains, other joint/bone injuries
*Spine - curvatures, kyphosis, fusion surgery, braces, flexibilty
*xrays - obvious eds xray abnomality and 'normal looking' xrays.
*baby and young children - floppy baby pics/clips, bum shuffling, late walking, clumsiness, easy bruising, easy injuries.
*fatigue/exhaustion - stuck in bed, looking exhausted, floppy/weak limbs, clips of trying to talk with brain fog etc

I also want to get across that we are still people 1st and EDS 2nd so photos and videos of :
*celebrating milestones - birthdays, weddings, births, graduation etc
*family snaps, holiday snaps, having fun.
*Smiling and happy pictures of old and young.
*Pictures of the emotionally hard days.
*adapting normal situations to eds eg birthday celebrations in hospital, taking the kids to school on your scooter etc

I will also be using audio clips of quotes, thoughts and readings from EDSers rather than just having lots of text to read. For this I need voice recordings or video clips that I can extract the audio from.

Audio needed
*What does EDS mean to you?
*What are your worries about the future/hopes for the future?
*What bad experiences have you had re drs, schooling, general public,
*What gets you through the bad days?
*Quotes, mottos or something someone has said that changed your outlook or is your daily EDS mantra?

I would love to have some audio clips from EDS kids too. Even something simple like 'My legs hurt' or 'I want to play with my friends' etc Also audio clips from kids of EDS parents such as 'I help mum by...' etc

I would also like to have people reading some of the information in the film rather than having lots of text to read. I need people to volunteer to record themselves reading from a script once it is written. Again I want to get across the vast range of people this condition affects so if you have a child who could read a line or two, even a young child who could repeat a few words etc.

Finally if you have a video blog on EDS that you would be willing to let me use clips from that would be great.

This project will take a while to complete but I hope that the time and effort people contribute will be reflected in a film that is unlike any other EDS awareness material currently out there.

If you would like to be involved in anyway please email the project email

If you send photos, video clips or audio clips please include your full name, age and location so I can credit you.

If you would like to be part of the script recording please email and I will contact you once the script is ready to be recorded.

Finaly if you have any other ideas please email or comment below.

Email -

Wednesday, 1 December 2010

Deck the halls and all that stuff!

Hi everyone,

First thank you all to everyone who has contacted me to let me know that my blog is helping others to understand EDS/HMS and also offering comfort to fellow bendies.
Its hard sometimes to come on and write about the month I've had but now that I know that it is helping others I have more reason.

So how have things been since October?
Still waiting to be rehoused and currently living in my extremely bare flat having packed everything ready for my proposed move a few weeks ago. Still here and possibly for another few months but loving having very little to tidy or trip over!

I enjoyed a wonderful birthday, my favourite present was the entire works of Shakespeare found in an old 2nd hand book shop from my boyfriend.

So on to the health stuff...

As predicted the winter is hitting hard and its been an interesting few weeks trying to keep up with my EDS.

My physio became very concerned about my hips after they started to subluxate (partially dislocate) repeatedly during the day. An x-ray has shown 'some structural abnormality' but until the official report comes back from the radiographer they won't tell me what exactly is 'abnormal'. There are a few hip issues that are more common in EDS due to the increased friction from the movement in the joint or from the recurrent dislocations/injuries.
I see a specialist physiotherapist in a few days who needs to assess my hips and pelvis so they can refer me to an Orthopaedic surgeon who will then decide if surgery is needed.
The pain in my hips has become very bad and touching my upper pain threshold so I have finally be referred to the pain clinic.

Last week I passed out and fell badly in my kitchen. It was the first time I used my falls alarm and now realise just how essential it is. The nurses got to me quickly and I was sent to hospital for xrays and pain relief. I expected to be sent home that night but my heart and blood pressure weren't behaving and I was kept in overnight.

My heart rate and blood pressure were monitored through the night and in the morning I was told that I could possible have POTS (Postural Orthostatic Tachycardia Syndrome). This is a condition that basically means your body has become allergic to gravity. It affects the Autonomic system which controls heart rate, blood pressure, temperature control and other essential systems. There are various reasons people develop POTS including as a result of a primary condition, in my case EDS.
If the falls continue I will have to be tested for POTS.

Hearing this was not especially great as I know how bad POTS can get and also how it can cause more complications in EDS.

For more information on POTS see the links at the end of the blog.

Generally I feel really rubbish and think this has to be the worst I've been so far with EDS. However I have been through so much worse in the past and know that whatever happens it's how you approach the challenges that determine how they affect you. As usual I am staying positive (although a little harder than usual), and focusing my energy on just keeping safe and warm over the next few weeks.

I hope that you are all having a great snowy week. Please comment and continue to share your EDS stories. If there is anything you would like me to discuss in a future blog please let me know.

Hugs and prayers to everyone


More info:

What is POTS? - -POTS place. info on POTS and other types of Dysautomia.

POTsgirl's video - - great video explaining POTS simply and to the point.