Visiting the Gastroenterologist 🍀

Yesterday, Friday 15th May I had two appointments... 

As some of you may know I have been having a lot of Gastro problems, not keeping food down and feeling constantly nauseous 😔

One of my appointments was with a Gastro Dr and Kingsmill Hospital, I was really nervous about the appointment as I had no idea what to expect or what was going to happen... 

In the last month I have lost a significant amount of weight and gone from a size 12-14 to a small size 8. 

Here is what happened... 

My appointment lasted around 40 minutes, the Dr was a nice gentleman but I feel he had no interest in Ehlers-Danlos Syndrome, probably due to a lack of knowledge which I seem to find a lot with Dr's at the minute. 

I explained I have been having a lot of pain in my upper abdomen, nausea and weight loss. 

At first he tried to say that it could just be my IBS but I explained that is not the case, I haven't had an IBS flare for a while and I'm not having toilet issues as I'm not actually consuming a great deal. 

I told him that I had been taken into hospital numerous times due to being sick to the point I am bringing up my stomach lining, my blood sugars dropping dangerously low and passing out. I mentioned that people with EDS are prone to gastro problems such as gastroparesis. He dismissed this saying that he doesn't believe EDS has any part in what I am experiencing and was more interested in whether or not I could make my thumb touch my wrist and how flexible I am 😡 this really annoyed me. 

After me expressing how worried I am about what is happening and how frustrating it is not being able to eat properly without feeling constantly sick and told him that my GP had already tried numerous anti-sickness medications, iv tried a soft diet, liquid diet, going lactose, gluten and wheat free, iv tried fortisip drinks to stabilise my weight to no avail and I'm really struggling, he then decided to book me in for the following tests, 

An endoscopy (urgent) 

A barium test 

Blood tests 

And gave me a different tablet to try for the meantime. 

He then said that between now and when we have the test results if I am still not keeping food down and my weight continues to decline then I must admit myself to a&e and then they will fit an NG tube until they can figure out what is happening. 

I feel like I am non the wiser after leaving the appointment but I am grateful that tests are being carried out and hopefully we may find out what is wrong. 

What is an upper GI endoscopy? 

An upper gastrointestinal endoscopy is a procedure to look at the inside of your oesophagus (gullet), stomach and duodenum using a flexible telescope. This procedure is sometimes known as a gastroscopy or simply and endoscopy. 

What are the benefits of an upper GI endoscopy? 

It is a good way of finding out if there is a problem, if the endoscopist finds a problem, they can perform biopsies to help make a diagnosis. 

What does the procedure involve? 

You are told not to eat in the six hours before the procedure and to only drink small amounts of water for up to two hours before. This is to make sure your stomach is empty so they can have a clear view and will also make the procedure more comfortable. 

The endoscopy usually takes around 10 minutes and if appropriate the endoscopist may offer you a sedative. (This will be given through a small needle in your arm or the back of your hand) 

They will usually spray your throat with some local anaesthetic and ask you to swallow it. (This may not be effective for those of us with EDS) 

You will then be asked to lie on your left side and a plastic mouthpiece placed in your mouth. 

The healthcare team will monitor your oxygen levels and heartrate. If you need oxygen, they will give it to you through a mask or small tube in your nostrils. 

A flexible telescope will then be placed into the back of your throat. They may ask you to swallow when the endoscope is in your throat, this will help it to pass easily into your oesophagus and down into your stomach. From there the endoscope will pass into your duodenum. 

The endoscopist will be able to take pictures and biopsies if necessary to make a diagnosis. 

The procedure is not painful but your stomach may feel bloated because air is blown into your stomach to improve the view. (Mr Simmons Parsons DM FRCS (Gen. Surg.) 

I will talk about the barium test in another post as I do not currently know enough or have enough information about the test itself in order to make a reasonable explanation. 

My second appointment was with the orthotics department... 

In my Braces post I talked a little about my Lycra suit, because I have recently lost a great deal of weight it is no longer supportive enough to hold my joints in place, so I had to have all my measurements taken again. 

The orthotist also gave me an aspen collar. I don't currently know whether or not I have chiari but I do suffer with severe migraines, pain in the base of my skull and I also have what they call "bobble head". I am to wear the collar for 1hour and 30 minutes a day to give the muscles in my neck a rest and to help support me.  

 Hopefully this will help to reduce the amount of migraines I am getting 😊. 

That is all for now, hope you enjoy reading and if you have any questions please feel free to message me and I will get back to you x 

Painsomnia

I think we all know what pain is, especially those of us who have EDS. 

But what is Insomnia? 

Insomnia is difficulty falling asleep or staying asleep long enough to feel refreshed the next morning. 

The most common symptoms of insomnia are: 

-  Difficulty falling asleep.

-  Waking up multiple times during the night. 

-  Waking up early in the morning and not being able to go back to sleep. 

-  Finding it difficult to function during waking hours.

-  Feeling irritable and tired. 

So what causes Insomnia? 

-  Stress

-  Anxiety

-  Medical conditions linked to sleep

-  Depression

-  Asthma 

-  Environmental factors and lifestyle choices 

- And of cause pain... This brings me to Painsomnia... 

What is Painsomnia? 

Painsomnia is insomnia caused by pain. 

Unlike Insomnia that is caused by environmental factors or lifestyle choices  that can be adjusted, there isn't a great deal we can do about Painsomnia except from trying to manage the pain and staying comfortable. 

I would advise anyone that is suffering from a lot of insomnia due to pain to contact there GP and see if there is anything that can be done to manage your pain more effectively as lack of sleep can cause you to be more prone to accidents and falls and heightened pain. 

What can be done to help with Insomnia? 

-  Avoid caffinated drinks later on in the afternoon. 

-  If possible try not to take naps in the afternoon. 

-  Avoid eating heavy meals too close to bedtime. 

-  Using blackout curtains/blinds or an eye mask to keep out light and ear plugs to block out noise. 

I have recently come across something called Sleep Phones, they are great for wearing in bed, whether you are using them to listen to relaxing music to help you sleep or if you are wearing them whilst relaxing in bed because the speaker is completely flat and you can lie on your side without anything pressing into your ear/head making you uncomfortable. 

These are the ones I own, there are a lot of different designs on the Internet. 

I am actually struggling with Painsomnia myself this evening and that's why I'm sat here writing a blog post at 12.15am! 

I hope this helps :) thankyou for reading! 

My first day out in forever!

So I woke up this morning feeling rather anxious and in a lot of pain on top of my current gastro problems but I was determined not to let this get in the way of my first trip out in what seems like forever! 

I am in a wonderful support group and this is who I was going on the trip with. I suppose you want to know where I went right?! 

Cadburys World !!!! 

Although I felt really sick I managed to muster up a smile and get ready to go! 

This was me on the way to the pick up point where I would be meeting the group and getting on a coach to Birmingham, 1 and a half hours away. I must say I really wasn't looking forward to sitting on the coach for all that time but the lovely ladies kept me occupied, involved in conversation. 

So here are a few photos I took :) 

This was the entrance. 

I didn't actually get a picture of inside the shop but it was huge and I brought lots of goodies including, a purple cadburys hoodie, a chunky pen, a broach and of course chocolate gifts. 

I made a little wish for all my fellow zebras :)! 

The chocolate smelt so beautiful!!

This is beautiful and was made to celebrate the birth of Princess Charlotte Elizabeth Diana.

This egg was huge and was made entirely from chocolate as well as everything inside! I wish I could of taken it home :) 

The old chocolate bars and advertising, it was amazing to see how things have changed over the past 100 years. 

There are a few other photos which I will post on my Facebook if anyone wants to take a look. 

So now I shall tell you about the day itself... It was a wonderful place and I am soo glad I managed to push myself to go, I had a great time and it was awesome to be out of the house for a day out for the first time in a long while. 

I was a little disappointed that I could not access all areas of the tour due to lack of wheelchair access and a lot of steps and I also didn't make it to the end of the tour as I started to feel really fatigued and my pain levels were pretty raised by this point. 

When it was time to come home I was definitely ready, it was a very long day out for me and I found it really exhausting. As soon as I got home I managed to get myself to bed at 5.30pm and had a little nap. Unfortunately that means I am now wide awake at 11.45pm. 

Overall it was a great day but thanks to EDS I won't be going anywhere else for a while again now and will probably spend the next few days bed bound recovering but it's good to get out once in a while! 

Much Love Everyone, Stay Positive xxx

Im Still Alive... Just!

So i haven't been able to do any blog posts for the past few days because my health has taken a turn for the worse.

I am still struggling with nausea and vomiting and of course loosing weight. So because im not able to keep a great deal of food down I am feeling very weak and tired Constantly! This has been happening now for around a month and I have been hospitalised quite a few times as a result because of my blood sugars dropping down to 2.2. The hospital in my area is pretty useless and doesn't ever seem to want to do anything in the here and now, they would much rather make referrals. 

So I have been seeing my GP a lot lately and he is rather worried about the gastro problems so he made an urgent referral to a gastro Dr who has knowledge of EDS over 3 weeks ago. One week in we hadn't heard anything so my GP sent over the referral by fax directly to the Gastro department, Week Two we still hadn't heard anything so my GP called the department and they said that they will get an appointment letter sent out to me. It is now Week Three and still no appointment letter. 

Yesterday I forced myself to have something to eat and shortly after eating I started getting intense stomach cramps, palpitations and sweating. I stood up to go to the bathroom as I felt really sick  but didn't actually get very far before i fainted and collapsed... 

When I came round both of my knees were dislocated, I was in soo much pain it was unreal. I managed to pop them both back in place but my right leg was having a lot of spasms and my left knee cap was sitting a little too low so I ended up having to go into hospital. They put my kneecap back where it should be and just told me to go home. 

The hospital in my area is appalling, they are really rude an arrogant! Before I was diagnosed with EDS they were really good but now I have a diagnosis they just don't want to know or just don't want to touch you!

Today I am feeling really sick and really weak and tired so I am literally doing nothing all day, I haven't even got dressed and I don't intend on doing so until I have a bath later and I will then only change over into some fresh Pj's. Im sorry this isn't a very interesting post, I will try and update my blog as much as possible whilst im feeling ill but obviously cant make any promises!

I hope your all feeling as well as possible, Much Love, Peace Out!

Ps. You will notice that from now on I will be making the writing a little larger and will also be putting colour behind the text. This is following a request made by a lovely lady with dyslexia that was finding it hard to read the writing as it was before. xxx

Lets Talk Pacing!

So what is Pacing?

Pacing is doing small amounts of regular activity guided by time rather that pain. A lot of people will carry out an activity using pain level as an indicator of when to stop. Pacing aims at stopping an activity before the pain increases and knowing when enough is enough.

People suffering with Chronic Pain tend to wait for "good days" in terms of pain levels to come around and then they will do a lot, pushing themselves to the absolute limit and as a result will end up in more pain and resting for a longer period of time. Pacing teaches you to do a realistic amount of activity so as to not completely exhaust yourself resulting in not being able to do anything for long periods.

It is very important to pace every activity up little by little, even things like sitting down and standing up.

Just standing up can be difficult for people with EDS-HT because it is a constant battle to 'just be'. We have reduced ligamentous support and proprioception so we spend time exploring with each joint just to get a sense of 'where we are', which is even harder when standing. What everyone does subconsciously we have to consciously think about all the time, which is why we become fatigued so quickly due to using up extra brain power.

So how do we measure Pacing?

When measuring pacing, two measurements are taken of a particular task or exercise.
For example, Standing... I would start off by measure my standing tolerance one day and then repeat the same thing again the next day, giving me two measurements. This is how we would work it out.

So if on Monday i managed to stand for 60 seconds and then on Tuesday i managed to stand for 90 seconds we would add the two totals together, divide by two and minus 20% to get a baseline reading.

60 + 90 = 150 seconds
150 / 2 = 75 seconds
75 seconds - 20% = 60 seconds

That gives us a baseline starting point for standing of 60 seconds. You may then decide to 'pace' up this activity by 1 second a day. So if you started at 60 seconds on day 1, by the following week you would be on 67 seconds.

Applying Pacing to a Task – The Rule of the 3 P’s

Prioritise -  Do you need to do the entire task today / in one go? Can you get someone else to help? Does the task need to be done at all?
Plan - Can you break the job into different stages? What do you need to carry out the job? What basic activities does each stage involve? (e.g. walking, sitting, standing)
Pace - There are 3 main aspects to pacing: 1. Breaking tasks down into smaller bits – Part of prioritising 2. Take frequent short breaks a. Do something for a set time b. This breaks the overactivity / underactivity cycle c. Helps to even out your activity over the course of a day d. ‘Taking a break’ does not mean stopping completely e. Change your position or do something else for a short while.

The benefits of pacing are that you will be able to do things more reliably, rather than being able to do a huge amount one day but then nothing for the next 3 days because you were recovering. 

I hope this makes sense :)

PROPRIOCEPTION...

One of the problems people have with Ehlers-Danlos Syndrome is Poor Proprioception.

So what is Proprioception?

It is the awareness of our joints in space, or should i say lack of awareness of our joints in space and the end range of movements. This is partly why we get into the situations that we do and are so unaware of how 'bad' our alignment looks because we cannot sense it.

Due to the collagen laxity in people with EDS-HT there is continual movement into an extra range of joint movement and means we are more prone to injury because of the poor sense of spatial awareness of joint proprioception. Proprioception is determined by the spatial awareness of one's joints. For people with EDS-HT this judgement is impaired due to their poor joint proprioception, particularly at the end range of movement into their hyperextension.

People have questioned whether or not EDS is a problem of the neurological system? I think not. EDS-HT is a connective tissue disorder, this affects the connective tissues that will indirectly affect the neurological system because there is connective tissue and collagen surrounding the neurological pathways but this does not mean it is a neurological disorder. Poor proprioception is as a result of lax tissues which result in the nervous system not getting the feedback from the joints or the tissues. The nerves cannot sense the end range because they are not getting the feedback required from the soft tissue.

A poor sense of proprioception could explain why people with EDS-HT are more prone to accidents and injuries, because they are not aware of there end range of movement. In females the onset of menstruation can cause symptoms of joint pain and instability to worsen, This is because menstruation increases the release of the hormone progesterone, which further relaxes collagen further impairing proprioception.

Poor proprioception is very debilitating because the proprioceptive system is such a basic system in being human and in most people it just comes naturally but if this system is not working properly, the sense of not knowing where your joints are in space is basically eroding a sense of identity.

This can result in a whole list of difficulties which are linked into EDS-HT. These difficulties can be, overuse, dislocations, subluxations, soft tissue injuries and poor healing due to constant re-injury.

So it is thought that people with EDS-HT are prone to have poor proprioception because of tissue laxity of the soft tissues.

Motor coordination is reliant upon accurate proprioceptive feedback, so as a result of poor proprioception there can be a delay in motor development. This means that children with EDS-HT tend to learn to walk alot later than a child without EDS-HT and may experience problems with coordination.

So how do we manage proprioception?

It is possible to improve proprioception through exercise and exercise will also improve muscle tone which is why it is important for EDS-HT patients to be gently and slowly rehabilitated with exercises because improving proprioception and muscle tone may potentially reduce the number of ongoing traumas.

The following things can help with the management and improvement of proprioceptive dysfunction:

• Joint stabilising exercises
• Avoiding hyperextending joints 
• Reversing the deconditioning of muscles which is as a result of muscle disuse
• Enhancing fitness and stamina through appropriate aerobic exercise ( please do not attempt these exercises without speaking to your physiotherapist first ) 
• Improving your core stability
• Using coping mechanisms and managing pain by pacing

It is no wonder that people with EDS-HT that are experiencing poor propriception also suffer from anxiety. It is like a constant battle of stability and can be very difficult being in a body that feel chaotic and out of control. It is thought that EDS-HT shares some of the genetic bases of anxiety but surely poor proprioception and physical instability caused by tissue laxity must also contribute to this.

I myself have poor proprioception and it is not as easy as said to just 'put it right' or 'improve it'. I wear a lycra suit as seen in my braces post, this helps support my joints but it also helps with proprioception because it is tight to the skin and therefore gives immediate sensory feedback regarding the misalignment of my joints when moving. It also helps me to hold myself in a better position because with the suit on i am aware of where my body is.

Using KT tape can also aid you. I use tape on my knees, shoulders, elbows, wrists and hips, to help support my joints but because the tape will pull on skin during movement it also gives immediate sensory feedback.

I hope you find this post useful. I have taken alot of information I have read in Isobel Knights Living with EDS book and just conveyed it in my own words. The book is very informative and a good read :)

Let's Talk Braces!

Some of you may know that when having EDS - Ehlers-Danlos Syndrome joints are very lax and prone to dislocations. I suffer with multiple dislocations a day and they are horrendously painful no matter how many times it's happened you NEVER ever get used to the pain. 

I would like to show you some of the braces I wear on a daily bases to help support my joints, unfortunately it doesn't always stop them from dislocating but it does tend to help me when pain when my joints feel more stable. 

These are the supports/braces I am going to talk about today. Different things work for different people, so just because this is what works for me, it doesn't always mean they will work for someone else. 

So I will start off with my Lycra suit 

This was specifically made to my exact size. It is a Sensory Dynamic Orthosis. This helps hold me together as much as possible and helps me be more aware of my joints in space due to lack of proprireception (not sure if I spelt it right but I will do a separate post on this). 

The top half of the suit has reinforcements across the top of the back and shoulders, helping to keep my shoulders in there rightful place, the bottom half of the suit comes from the waist right down to the mid calf. They have reinforcements in the hip area and knee area, again to help keep my joints in there rightful place. The Lycra is skin tight and can become very warm on hot days, but is great as support and an extra layer in winter! 

Next are my ankle braces.

My ankles tend to roll very often when I am walking and overall feel really weak. These braces help to stabilise them and prevent them rolling too often. They are surprisingly lightweight and breatheable. They also fit nicely in your normal shoe size as they are not at all bulky. 

Next are my knee braces... 

I have tried many knee braces and they have failed to do what I need them to do. 

My knees are very hypermobile and tend to hyper extend a lot. My patella dislocated and subluxates many times during the day. 

They do give me a great deal of support but they do not stop my knees from hyper extending. These are patella stabilisation braces so have extra support around the patella to help prevent it from dislocating. 

What I don't like about these braces is that they have to be pulled on. This hurts and sometimes dislocated my shoulders and even my knee in the process. 

The positive is that they are very lightweight and not bulky so can be worn under clothing easily. 

Next are my wrist and thumb braces... 

These a two different kinds of braces. 

The black ones immobilise the thumb and are to help prevent dislocation and the nude colour ones have a thermo plastic insert that has been moulded to the shape of my thumb and these are worn after a dislocation to help support and protect the area. These braces I wear a lot and they have served there purpose as much as possible. 

I also have this, a thumb spica. My right thumb tends to dislocate more as I am right handed and I have to wear this when I have had multiple dislocations to fully immobilise my thumb. 

Next are my finger splints also known as O8's and my index finger splint. 

The O8's help support the finger joints and prevent dislocations. I have found these great and will be thinking about having some made in sterling silver :) 

The thing next to it is my index finger splint, and some self adhesive tape. The tape holds a thermo plastic splint over the top half of my index finger to stop it hyper extending when writing. 

Next are my resting splints. 

I wear these every night for bed as I suffer with severe pain in my wrists and a lot of cracking and crunching. These help keep the wrists/hands fully rested and prevents them from curling in whilst sleeping. They don't look pretty and they are pretty bulky but they definitely do the job! 

And lastly is my shoulder brace... 

I am not a fan of this brace at all. I personally find it very bulky and uncomfortable. It can be used to help support the shoulder and prevent dislocations.

All of my braces have been made and supplied by the orthotics department.

I hope you all found this useful, if you have any questions then please feel free to ask and I will do my best to answer :)