Wow it's been a long time since i posted. This will hopefully explain things better than my previous post.
Lots of things have happened. I've moved back into my parents home, changed drs and actually started getting somewhere with my ilness. I've also come to terms with the fact that even if in the future I will be well enough to return to university, it wont be for several years.
I'm very close to finally having a diagnoses. I first noticed I was really getting ill when I was 15. I came down with chronic fatigue, and all over joint pain. I ended up taking a month off school.
While I learnt to cope, this never actually improved. It looks like I may finally have the diagnosis though. My new physio has said the same thing the muskuloskeletal specialist did. That I am hypermobile. However, instead of then continuing with "so there's nothing we can do" she has started me on a long course of treatment which will hopefully over the coming year
improve my quality of life. I also hope to get this as a diagnosis on paper.
One of the biggest problems with not having a diagnosis is that I am constantly told off for making up excuses for everything. I don't make excuses, but without a name for my problems I have to explain in terms of what is causing me the problems on a specific day.
My range of problems inclues:
* Subluxing ribs
* subluxing shoulders
* subluxing hips
* dislocating ankles
* dislocating knee caps
* dislocating fingers and toes
* chronic fatigue
* chronic back pain
* Locking elbows and knees
Together these cause a range of problems. Everyday when I wake up I have to put all my joints back in their sockets. So I may one day have missed uni because I woke with my hip dislocated and it was all I could do to walk to the bathroom. The next couple I might have been stuck in bed with a migraine, which comes with the added fun of worsening my visual issues so I can't actually tell where the floor is or what way up it is. The following day I might dislocate my thumb so I can't hold a pen. To my lecturers it seems like I always had an excuse.
This is why I hope to get an official diagnoses. How great it will be to be able to just write, Hypermobility syndrome, as my reason for ilness. There's a very large chance that I will get diagnosed with Ehlers-Danlos syndrome, a genetic form of hypermobility (which nearly all hypermobile people fit into, just not all get correctly diagnosed, or arent affected enough to have a problem). I very much so match the criteria for the diagnosis, it just needs to be confirmed via tests such as a genetic blood test.
There are many forms of Ehlers-Danlos (EDS). The main varieties are types 1 to 4. Types 1 and 2 are known as classic EDS. These often present with less pain than types 3 and 4, and are characterised by the skin involvement. Their skin can stretch a lot further than in a normal person, while all forms of EDS have some minor skin involvement classic patients have distinctly different skin. The skin is described as velvety and smooth, and stretches far when pulled. Type 3 is the hypermobility type, Much like how classic types have an exaggerated form of skin involvement, hypermobile types have extremely flexible joints. This is a painful type to have, though along with types 1 and 2, is generally not life threatening. Type 4 is vascular. This type is dangerous, even more so if undiagnosed. Vasular sufferers are at risk of sudden rupturing of blood vessels, especially arteries, and many encounter heart problems as the structures of the heart stretch and rupture.
Personally I think I have type 3. My skin is stretchy, but not to the extreme. My joints are all very lose though. I score a 9 on the 9 point beighton scale which is a measure of hypermobility. The average person scores a 0, up to a 4 can occur in some people without EDS, but 4/5 and higher is a cause to get looked into. The points are as follows:
* 1 point for each pinky finger which can bend past 90 degreees.
* 1 point for each thumb which can be bent down onto the wrist.
* 1 point if you can place your hands flat on the floor whilst standing with knees straight.
* 1 point for each elbow which can hyperextend
* 1 point for each knee which can hyperextend.
There are also distincive featres such as extremely flexible ears, which can be bent and folded up on themselves with no discomfort or resistance. The joints of the fingers and toes tend to bend backwards, which is really painful when writing or using a knife and fork.
I'll be seing my dr on wednesday and hope to get referred to someone who can give me a firm diagnosis. I'll write another post tomorrow covering some of the daily things which being hypermobile causes me issues with. Right now I'm hurting too much to type anymore.
Thanks for reading :)