May in my EDS world is awareness month. As I’ve explained to you before I have got a bit of awareness month fatigue, there are so many of them and so many different days. However for me awareness month is how I found out about EDS and how I finally got some of my answers. OK yes it has also lead to lots more questions too, but I would still be disabled but searching for answers as to why I wasn’t recovering from something that others recovered easily from. If it wasn’t for awareness month I wouldn’t have seen my friends posts about the condition, I wouldn’t have put all the pieces together and I would still be being passed off as “making things up” or “a hypochondriac” or one of the many other things that I heard in my search for what was wrong with me. So this is one person who despite thinking that we have too many awareness months, still thinks that they can be very important!!! OK yes another contradiction from the many that make up me!
Anyway so this month someone has come up with a list of 31 questions about EDS to get to know and understand more about the condition and how it affects us all. I thought that it would be good to help with awareness of the condition, it’s many difficulties and hopefully be interesting to you too. So lets get on with them………
- What type do you have? Since I have been diagnosed this “official” title has changed I think 3 times, so please excuse me if I get it wrong. I have hypermobility Ehlers-Danlos Syndrome. I suspect that I have crossovers with other types but haven’t had the genetic testing to get these. Hypermobility type is currently the only one (I believe) which they have yet to have a blood test for.
- When were you diagnosed? I’m funny/weird with this one. I haven’t actually remembered the exact date that I remember being diagnosed. It took so long and was such a fight, but the first time that I was told I had EDS was an anti-climax. I was told that if I wanted to call it EDS then I could but originally was diagnosed with benign hypermobility syndrome. This was then confirmed at a London clinic to definitely be Ehlers-Danlos syndrome. I don’t mark the occasion, I don’t remember the exact year. I know that it was awareness month when I put the pieces together, but I don’t know exactly when. It was approximately 6-7 years ago!!
- Comorbidities? This is a debatable situation too, a lot of my “comorbidities” the doctors aren’t 100% sure are attributable to the condition. There just isn’t the research out there to know that the conditions that are anecdotally attributable to Ehlers-Danlos, are actually part of the condition. However, I have the following conditions as well as my Ehlers-Danlos syndrome. I have:
Asthma, Eczema, suspected POTS, suspected Mast Cell issues, suspected Autistic Spectrum Disorder, underactive Thyroid, Migraines, Irritable bowel syndrome, Polycystic Ovarian Syndrome or PCOS, Depression, Anxiety, Sensory Processing disorder, Fibromyalgia, Allergies which is why the suspected Mast cell issues, Arthritis, Non alcoholic fatty liver disease, urinary incontinence with 3 prolapses, GERD (which stands for something to do with acid reflux), Hiatus hernia, dry eyes, Gallstones lead to my gallbladder removal, carpal tunnel syndrome, chronic tendinitis and just recently I have been diagnoses with only one working kidney and lipoedema. I’m sure I’ve got more but I cannot remember and brain fog is always a big part of this, brain fog is not so much a diagnosis but rather a symptom. I am obese too and am currently awaiting both a supra-pubic catheter operation and a weight loss surgery, and also when I can not use my hands to walk (e.g be wheelchair bound) I need both carpal tunnel and tendon op’s in both hands! I don’t know which are the EDS and which my body just has decided to give me too. But whatever they are, this is the long list of conditions that I have to write on forms! They are what they are, some are a big issue some not so much, but this is me and what I have to cope with day to day. I am simply as I have been called so many times a “medical enigma”!!
- How Hypermobile are you? I am very hypermobile. I have been diagnosed from the Beighton scale, this is a scale of hypermobility and before my tendinitis and arthritis I was 9 out of 9. If it wasn’t for these problems I would still be 9 out of 9!!
- Are you stretchy? Yes, my skin is stretchy and my joints are!! All my scars have opened up and left bigger scars than they should because my skin has stretched them out. I can stretch my skin (although my obesity has reduced this a lot) and also my bladder has overstretched which is one of the problems that lead to my incontinence.
- Mobility aids? I use walking sticks/crutches, a wheelchair (but as I’ve told you before I desperately need an electric wheelchair as I currently have a manual chair which I can no longer self-propel) and a mobility scooter. I also use ankle splints and have knee and shoulder splints which help to stabilise my joints and help my mobility so I consider them part of my mobility aids!!
- Pain Management – I have pain relief, I have a LOT of pain relief options, however I am in pain 24/7. I am not going to go into the pain meds that I take, partly because I am not up for a debate on whether my pain regimen is the right one or if something else might work better. It works for me currently and is what my doctor has prescribed. If it stops working or I have an issue with it I will stop, if not I will continue. Partly it is because this pain regimen is mine, it might not work for others and I will not be recommending or discouraging anyone from following one. Everyone is different and everyone’s needs are different, this should be discussed with everyone’s individual doctor or team.
- Surgeries – I have had 4 major operations or at least ones under general anaesthetic. I have had a number more under local, which doesn’t work well for me and wears out too quickly. This is an EDS thing too. My general anaesthetic operations were: Wisdom teeth out (because they needed to be cut from my jaw!), gastric band in and then out and my gallbladder removal. As I have said before I am currently awaiting a supra-pubic catheter operation and a further weight loss surgery. I will have my hands operated on at a later date.
- Hospital stays? I haven’t been in hospital specifically for EDS related things, however I have stayed in hospital twice, once for my gallbladder removal and once for my back when I first became disabled. I didn’t know about my conditions when I had my other surgeries so I did not know that I am at a higher risk and so should be monitored more closely when I have surgery!
- What is “your normal”? There is no “normal” my condition changes minute to minute. I am always in pain, the degree of which changes. I always get fatigued and again the degree of this changes. This condition to me has no “normal” no day is the same as the other with regards to pain to brain fog or fatigue, I know that I will have some of them and I’m never 100% pain free.
- What is your flare like? Again for me there is no normal flare. A flare can be a spike in pain or fatigue, it could be a bad POTS episode or a mixture of all of them. Sometimes I get bad migraines with my flare, sometimes not, sometimes I can keep going and others not and I’m on the sofa for the day and barely move. It all depends, this is the problem with the condition, there is no one flare that we all have. There isn’t a normal or a standard flare, and there is no normal or standard day.
- What specialists or types of doctors do you have? I see my GP regularly, currently I’m under all sorts of specialists. I don’t have a “team” I don’t see even some of the people who them that know say we should see. I see people as and when things come up, but partly because of my Autistic traits and partly because of all the problems that I’ve had with doctors in the past I have a real phobia of specialists and even doctors. Until I trust a doctor I’m not comfortable going and it causes a huge amount of stress for me. It takes a long time before I trust a doctor or specialist.
- Funniest EDS Story – I’m sorry but I don’t think I actually have a funny EDS story!! I’m not trying to be evasive, I may have forgotten things but I really don’t think I have a funny story to tell.
- Worst Doctor Experience – For me pretty much every doctors experience isn’t good. I think one of the worst I’ve had though is when a specialist told me that I couldn’t have a prolapsed womb, bladder or similar because and I quote “I haven’t had a baby”. Now this is not even true for a “normal” person but because of my stretchy insides it’s even less so for a person with EDS. But I’ve come across attitudes similar to this for my whole life. Doctors and specialist’s who have told me that it’s “all in my head” or I’m “attention seeking”, I’ve had people who have believed me but haven’t been able to tell me why my symptoms aren’t what they “should” be. When I hurt my back I was told that I would be better in 3-6 months, over 11 years later I’m still having the after effects of tearing that disc in my back. I don’t want to be like I am, I haven’t chosen this, I don’t like attention so am definitely not attention seeking. I am what I am, but although I don’t particularly have a good experience of Doctors I still have to try and put my trust and faith in them!!
- Best doctor Experience – This is slightly easier for me as there are so few. One of the best experiences with doctors is simply my previous GP, he believed me. That is a big step with EDS, actually finding someone who believes that you have what you say you have and are suffering in the way you say you are. When he went I was gutted, and am trying to build a relationship with my new GP now. She seems to believe me too, but as I’ve said before it takes a long time for me to now trust someone. I am trying to with her, but it will just take time.
Now as you will have keenly noticed there are 31 questions and only 15 here. Well I decided that I was writing so much and that there was so much information here that it is simply too much for one post. It will have the opposite effect to the one I want and instead of spreading the message, it will turn people off and them not want to know!! I do hope that you will want to read the next post, I will try and keep the answers a bit shorter if I can!!! So to finish, EDS what is it in a nutshell?
According to the Ehlers-Danlos Support UK website:
What is EDS?
The Ehlers-Danlos syndromes (EDS) are a group of thirteen individual genetic conditions, all of which affect the body’s connective tissue. Connective tissue lies between other tissues and organs, keeping these separate whilst connecting them, holding everything in place and providing support, like the mortar between bricks. In EDS, a gene mutation causes a certain kind of connective tissue – the kind will depend on the type of EDS but usually a form of collagen – to be fragile and stretchy. This stretchiness can sometimes be seen in the skin of someone with EDS; individuals with the condition may also be able to extend their joints further than is usual – this is known as being hypermobile, bendy or double-jointed. As collagen is present throughout the body, people with EDS tend to experience a broad range of symptoms, most of them less visible than the skin and joint differences. These are complex syndromes affecting many systems of the body at once, despite this EDS is often an invisible disability. Symptoms commonly include, but are not limited to, long-term pain, chronic fatigue, dizziness, palpitations and digestive disorders. Such problems and their severity vary considerably from person to person, even in the same type of EDS and within the same family.
If you would like to find out more or you suspect that you or a family member have EDS please look at the website for EDS support UK which can be found here……. https://www.ehlers-danlos.org/
I hope that you find this interesting, next time I will explain why the zebra is an emblem for EDS, and will answer the last 16 questions of the “challenge”!