EDS && Stomach Problems...

Unfortunately I haven't been able to be as active as I would of liked to have been on my blog these past few days due to Stomach pain and nausea... 

It all started a few months ago, I had an intestinal impacted and was hospitalised until it had all cleared. It wasn't at all pleasant. 

After coming out of the hospital I started experiencing problems with lactose, gluten and wheat. After eating any of these I would experience stomach cramps and pain. It started to put me off of my food and I switched to lactose, gluten and wheat free products where possible. 

More recently I lost just over a stone in weight in just over two weeks.. A lot of people would be pleased with the weight loss but I wasn't as I hadn't been on a diet or done anything to assist the weight loss and it worried. 

Then last week I started being sick, the pain in my stomach was unbearable and I couldn't even keep fluids down. 

I went to see my GP and he said he suspected a stomach ulcer due to my medications and advised me to stop them completely, this caused more problems and the sickness got worse. I was beginning to pass out and feel really dizzy. I saw my GP three days in a row and he finally suggested I may need to go to hospital but I was reluctant. I was told if it continued and the pain worsened then I must call for an ambulance. 

The same night I went into hospital and was given fluids and sent home. The next day I was taken into hospital again, given more fluids and had blood tests which came back fine. There was nothing wrong but I couldn't keep anything down. 

I went home and battled the sickness as much as I could. At this point I hadn't eaten for three days but I was still being sick. That night I started bringing up my stomach lining and passing out, I don't remember anything. The next thing I knew I was in hospital. They put me on IV fluids 3 times, but I was still being sick. A nurse came in and took my blood sugar, it was 2.4 and that's when they started to worry. They put me on two lots of IV glucose, glucose gel in my mouth which I would bring straight back up but it wasn't changing my blood sugars. 

They tried to get me to eat cornflakes with lots of sugar on them, I really did try but it was making the sickness worse. Eventually my blood sugar put itself right and I was put on the emergency assessment unit overnight. The sickness subsided slightly and the next morning I was aloud to go home. No diagnosis was given, I was just told I would be contacted to go back for an endoscopy and further investigations. 

I haven't heard anything yet because it has been the bank holiday weekend so hopefully someone will contact me tomorrow.

I'm still in pain with my stomach and feel constantly sick. I really hope they find out what is wrong and do something to help put it right. My GP now thinks that it is linked to EDS, I guess we shall find out soon... 

I LOVE Art Therapy :)!

So we all have things we enjoy doing, but due to the effects of EDS we have to take a step back and do things a little differently. 

One of the things I have grown to love is colouring. I have accumulated a collection of adult colouring books and felts and pencil crayons. It is a great activity as it allows your mind to be active and creative but it's something you can still do on bad days whilst sat up in bed :) 

I struggle with the little bones in my wrists  dislocating and my thumb and forefinger dislocate more often than I would like lol. But this activity is still possible when wearing my braces and supports. I will do a post about all the different kind of braces I have shortly. 

Here are a few of the pictures I have enjoyed doing... 

I hope you like them :)! 

Pain, Pain And More Pain...

Okay so I may be feeling a little sorry for myself today but we're entitled to do that someday a right?! 

Before I went to bed last night my right knee started to hurt a lot more than normal and I knew it was going to be a long night ahead. 

In 2014 I had a lot of problems with this particular knee. I had had a lot of previous dislocations, starting around 6-7 years ago but the in March 2014 I tripped over my beautiful dog Jessie. This caused my knee to dislocate and I was taken into accident and emergency. They gave me pain relief and reduce my patella back into place and they stuck me in a full leg cast for two weeks. 

When I went back to have the cast removed my leg felt so weak due to muscle loss. Muscle loss begins very soon after immobilisation. At this point Ehlers-Danlos Syndrome was very evident and doctors had discussed that this was what I may have due to my complex medical history and severe joint hypermobility but it wasn't a definitive diagnosis. So because of this and lack of understanding by professionals I was free to go home, still undiagnosed and without a brace or any other kind of support. 

Just one week later I had a fall in the shower due to my knee spontaneously dislocating, I hit my head and bruised all of my face and fractured my scaphoid in my wrist. Again I was taken to accident and emergency and X-rays were done. They showed that the patella was sat very low down so I was taken in resuss given lots of analgesics whilst a doctor put my knee cap back in its rightful place. I was having severe muscle spasms that were causes my kneecap to further sublux so they kept me in hospital over night. 

The next morning I was again put in a full leg cast (bright pink) and also my wrist in cast. This proved to be problematic as with my arm being in cast and me not being allowed to weight bare I needed to use my trusty crutches but this was not possible with my arm in cast so I had to see the physio therapists and occupational therapists and they supplied me with a walker but was told that I was only to walk when absolute neccessary. 

I spent the next 11 weeks bed bound with chronic pain and muscle spasms. There was a huge mix up at the hospital with my notes and doctors leaving and I was forgot about. I should only have been in cast for 6 weeks! 

When having the cast removed there was massive muscle loss and I couldn't do a straight leg raise, I had lost so much muscle that my leg just wouldn't work and I had to lift it to get in and out of bed.  This time I saw a Dr that actually listened to me and put me in a patella stabilising brace and was aloud to go home. It was less than a week until my knee dislocated again and I was back in a full leg cast. The doctor wouldn't listen to me when telling them how much pain I was in and my worries about my knee were dismissed and was told I would receive a letter in the post notifying me of a date to come and have an mri scan. 

The date of the Mri came around swiftly and I had the cast removed. The doctor would receive the tests results shortly. 

I never received a letter for an appointment to discuss the results and suprise suprise my knee dislocated again and I was taken into hospital, I saw the same doctor that had requested the me I scan and he was very rude and told me that there was nothing wrong, I was sent home in a brace. 

When my knee dislocated again I saw a different doctor in the fracture clinic and he asked if I would mind him taking a look at the Mri scans that were done and I said your more than welcome to as I feel I was treated unfairly and I don't actually know the results myself. He took some time looking over them and said that, the Mri scan has revealed a year of the MPFL, TGG distance was abnormal and the groove that the patella sits in was very shallow, this is causing the patella to flip out. Because of these findings a was referred to the Problem Knee Clinic. 

I saw an orthopaedic surgeon, Dr Kneedoff in the Knee Clinic on the 10th July. On arrival I was unfortunately in plaster again due to another dislocation so this was removed and I was examined. I could not perform a straight leg raise but the knee seemed stable. Around the patella there was discomfort medically and laterally and the was positive apprehension. Dr Kneedoff said that he would like to perform patella medial reefing and lateral release as this has a very good chance of helping the patella to stop dislocating. I was to come out of plaster and go into my knee brace again and come back in 4 weeks as the knee needed to settle down initially and regain some flexion before proceeding with surgery. 

I spent the next 4 weeks being extra vigilant and resting then I went back to clinic and was given the go ahead for surgery. I did mention that I had a questionable diagnosis of Ehlers-Danlos Syndrome but because this hadn't been confirmed it was dismissed. 

I went ahead with the surgery on the 24th September 2014, there was no significant bleed but the patella was still subluxing. Coming out of surgery I was in horrific pain because I had been talking morphine as a pain reliever for 7 months so it wasn't having the desired affect. I was put on a recovery ward and watching closely as my blood pressure was very low. They let me go home 3 days later in a immobilised brace and I was to rest. The pain was horrible and something I never want to experience again. 

Four weeks later I went back and my brace was removed, along with the staples. I was referred to physiotherapy, but after a few sessions I was discharged as my knee was again dislocation during session. The physio was appalling but I will leave that for another post. 

I never recieved a follow up appointment after then to see the surgeon and after a month of increasing pain I called the department and my surgeon had gone off sick so I saw a different doctor, Dr Machin. He was a lovely gentleman and after examining me and giving me a 9/9 Beighton score he said "have you ever heard of Ehlers-Danlos Sydrome" I said YES! There has been a questionable diagnosis since being diagnosed with joint hypermobility 6 years ago. 

He referred me to a Rheumatologist that had knowledge of EDS and she formally diagnosed me, stating that I had one of the most severe forms of hypermobility she had ever seen. She referred me to all the relevant people including a geneticist and gave me some information booklets . 

I am now back under another orthopeafic surgeon due to constant pain and swelling in my knee and abnormal muscle spasms. He says that surgery has made my situation worse and we are trying everything we can to try and get some relief but not getting anywhere at present. He said we could try surgery again but due to the EDS it's not likely that there will be a positive outcome. 

I have been having hydrotherapy but this is causing me dislocations in other areas and I will be back in clinic in a couple of weeks to discuss how we are going to proceed. I hope there comes a day when the pain is more bareable. 

For now I continue to use KT tape and knee braces to support my knees. 

Please don't ever jump into surgery, as I have learned it is not a quick fix and with EDS it is more likely to have complications than positive outcomes. 

I hope I haven't drowned on about my knee. I would just like to think that my experience may help someone in the same situation before thinking about surgery xxx

Welcome to my blog :)

Hi, as you can see my name is Rebecca and im 24 years old.

I wasn't diagnosed with Ehlers-Danlos Syndrome officially until the 14th of January 2015, 2 days after my 24th birthday but it has been very evident all of my life and more so the past 6-7 years.
The journey to diagnosis is a very long one and it can be very stressful and a very lonely time but there is hope. I saw a wonderful Geneticists from the Nottingham Trent University Hospital, he helped me put all of my life into perspective. He explained that unfortunately I am one of the most severe cases as I present almost all of the possible symptoms of EDS but he says that he believes I am also a strong person, i would like to think so!

I have been diagnosed with:
Ehlers-Danlos Hypermobility Type
P.O.T.S
Fibromyalgia
Gastroparesis
IBS
Borderline Personality Disorder
Chronic Migraines
Photophobia, Osmophobia and Phonophobia
And all the comorbities that go along with these conditions.

I try to be a positive person. I believe there is always some good in the bad and that everyday is another day worth living.

My current situation:
I came out of hospital yesterday after a week of chronic upper abdominal pain and unable to keep food and liquids down. I dont really remember much of this last week as i was either being aggressively sick, asleep or passing out. I stayed home for as long as possible and it wasnt until 2 days ago i went into hospital when i was bringing up my stomach lining and unable to hold my own head up. It turned out that my blood sugars were only 2.4 and i was severley dehydrated so i was admitted. The doctors believe that this is due to the Gastroparesis, which is very common in people with EDS. I have since been aloud to come home and i am coping. I have to return in the near future for a endoscopy and further tests.

I seem to spend alot of my time in hospital. Most weeks I will have up to 6 appointments in a week. Theses consist of Physiotherapy, Occupational Therapy, Hydrotherapy, Orthopeadic Surgeons, Fracure Clinic (i have alot of falls), Opthamology, Cardiology, Orthotics, Rheumatology and many more.

At the minute I use Smart Crutches to get around, I cant walk very far due to chronic pain in all of my joints. At the beginning of the year I was using a self propelled wheelchair but as my joints have become even more lax this is no longer possible as it causes my wrists and shoulders to dislocate. I was assessed by wheelchair services and they have now come to the decision, along with doctors input that I now need to use an electric wheelchair. This was heartbreaking for me as I feel like my mobility is being taken away from me but I wont let it get me down. The property that I am in is not big enough for the wheelchair I will need so now I also have to move to an adapted bungalow.

Like alot of people with EDS I experience a lot of Dislocaions and Subluxations (partial dislocations) and this can be anywhere up to 15 times a day. It is possible for any of my joints to dislocate from my little toe, to my hip or my rib cage. There is no cure for EDS, but there are things that can be done to make each day that little bit more manageable.

Because I don't really get out much I love to keep myself occupied at home when I can.
Here are some of the things I love to do:
Reading - this is definitely one of my favourite things to do and im always welcome to new book suggestions.
Colouring - I find this very therapeutic.
Arts and Crafts - I love to try new things.
And hopefully blogging will now be a new favourite.

Im not sure what else to say so I hope you enjoy my blog and il will be back soon!!

My Letter "To A Normie From A Zebra Spoonie"

May is Ehlers-Danlos Syndrome Awareness Month and I would like to do my part in raising awareness. My disability is invisible, but just because you can't see it, it doesn't mean it is not real. It is very real.


Ehlers-Danlos Syndrome (EDS) is a rare inherited condition affecting connective tissue as a result of faulty collagen. The "glue" that holds our joints together does not work properly. This can cause problems in every single system of the body. A lot of people have never even heard of this condition or those that think they do are actually misinformed. This includes professionals and this is very distressing to sufferers.


There is a famous saying "Never judge a book by its cover", I think people should definitely bare this in mind especially when it comes to people because you have no idea what's really hiding behind a smile. I would like anyone that wishes to judge me to first take into consideration some of the following things I go through on a daily basis.


Every morning when I open my eyes, if I have managed to get those mere 4 hours of precious sleep I wonder why me? I feel like my body is trying to destroy me and I feel trapped. I can not just simply get out of bed and start the day I have to do a once over to find out which joints have dislocated whilst iv been sleeping, have they all gone back in or is my hip still subluxed? If I just got up with out doing this I could end up in a pile on the floor and an ambulance on the way.


I am scared of what the future holds for me, or whether I even have a future. EDS is very unpredictable. Will I really have to start using that electric wheelchair or will I be one of the lucky ones and be able to carry on using my crutches for a while longer? Are the 5 hospital appointments a week going to be forever? Maybe, I just don't know. So when I'm distant and quiet, please take a minute to be patient with me, I'm not upset with you. I'm trying to overcome my fears.


Growing up I had so many hopes and dreams like everyone else does but gradually I feel like I have lost the person I once was. I struggle to do some of the most simple daily tasks that some people don't even have to think twice about. Having a shower is exhausting, brushing my hair can cause me to dislocate my shoulders and that's all before iv even attempted to get dressed. I can no longer do many of the things I enjoyed doing. EDS has taken so much away from me, there isn't a second that goes by that I can be free from this as I am always reminded by the constant chronic pain. So if I appear angry, it's not you I'm angry with, I'm angry with EDS.


Unfortunately I have to think about everything before I actually do it and be careful how far I push my body due to multiple dislocations/subluxations. You may not think I am capable of doing certain things but only I can make that decision, only I know my body. I still want to be included and invited to do things. I am still human after all, EDS can not take that away from me. EDS has affected my joints and my internal organs, not my ability to think for myself so please don't think you know what is best for me. If I make the wrong decisions, it is I who has to deal with the consequences.


I refuse to live my life being miserable everyday. If I was to live my life being miserable because I have an incurable condition then I would become severely depressed. But I just want people to understand the difference between being "happy" and being "healthy". When you see me/speak to me and I seem happy, it simply means I am happy. That's all. It does not mean that I am healthy. I am still in pain. I am still struggling. I could even be sicker than ever but I just refuse to let it win.


Please please please don't suggest "cures". I have probably tried everything you could possibly suggest anyway and I know you may only be trying to help but Ehlers-Danlos Syndrome is incurable. It is a Genetic disorder. So unless you can change my "genes" I'm stuck with it. All I really want from anyone is understanding and support.


There is a lot of misunderstanding of the pain, instability and dislocations of EDS. It is so unpredictable, one minute the pain could be severe in your knee and the next it could be in your hip or shoulder, it affects the whole body and can move around. We can suffer from bad flare ups causing us to be bed bound for days on end, in severe pain. Then other days we may be able to manage to do that little bit more. So just because I could do something yesterday, or earlier, it doesn't mean I will be able to do the same thing today or even later. Standing for just short periods of time can cause me to become fatigued and cause a lot of pain and in some cases I won't be able to anything for the rest of the day.


I don't want to be told you know how I feel. You don't. I'm not after sympathy, that's not what I want. I don't want your pity. I know sometimes i look perfectly healthy, but looks can be deceiving. Please understand that I am dealing with invisible pain and fatigue. When I do have all of my braces on and they are visible, don't stare. It hurts. I already feel like a freak.


Getting out and doing things does not always make me feel better. Sometimes it's impossible or just too stressful, please understand that. Telling me that some fresh air and some exercise may make me feel better is not correct - if I could possibly do it then I would. Some days I just don't want to do anything apart from curl up in a ball on the sofa in my pjs. How would you feel if you had a body that could you pain 24/7 and could spontaneously rearrange itself through no fault of your own?


It's important that when I say I need to sit/lie down, need to take pain relief or I need to go home, that you listen to me. I need to do it now. It can't wait because I'm doing something more exciting. EDS is not forgiving.


I am still the same person I was before I was diagnosed and before my symptoms started to progress so please try not to treat me too differently and leave me behind. I still have feelings . I still laugh, cry, love and hate. I am me not my disability. EDS sucks but I'm a fighter and I won't let it win.

All I ask is that you understand, support and love me Written by Rebecca-Katie Burton-Thompson