So, today marks a year since my rheumatologist appointment
where I received the confirmation that I do in fact have Ehlers-Danlos
Syndrome, Hypermobility Type.
While a year doesn't seem very long, I have of course, always had EDS. I was born with it, I have suffered chronic pain since I was a very young child and will continue to do so for the rest of my life.
While of course, in this age of the internet, I had done my research, and I was pretty damn sure I had EDS, you always have that niggle. It eats away at you- am I faking it? Just dramatic? This happens because in our society, disabled people are stigmatised and marginalised. We are made out to be liars, fakers, and drug seekers. However, I was relieved when I was told I have EDS. My pain and suffering was validated. I had a reason for it.
This of course has now impacted my medical treatment- after my third lateral release totally failed, I was referred on to a specialist: he is now going to perform an ACL hamstring tendon reconstruction on the 29th of March, so long as my date doesn't change, (note- not a repair, as I don't need the repair, which is how this surgery is usually performed, I just need the added strength in my knees) and I would not have had this referral, and subsequently this operation, without that diagnosis. If you are interested, this is a good video of the surgery. I am having two: left knee first, then my right to follow when I am recovered. We chose to do my left knee first as it's currently worse in terms of the condition when my surgeon looked over the MRI scans he ordered.
I am eternally grateful for the help my diagnosis has brought me. I also now have the trust of my GP to be on tramadol for my chronic pain, and the belief I need that sort of pain relief- we tried the alternatives such as SSRI's that are prescribed for pain, and nerve pain medication, and he believed me when I said they didn't work and he had no hesitations prescribing me tramadol, something I am so grateful for. It can be hard, very hard, to get any painkillers prescribed, especially as a young person as the age old "you're too young to be in that amount of pain!" follows you- well bud, tell that to my genetic condition. Of course, and correctly, they do fear the risk of addiction and other problems caused by painkillers like that, which I appreciate. Thankfully, the GP I prefer to see at my doctor’s surgery isn't like that at all, he listens to me and does his upmost to help me. Finding a doctor like that is a rarity and a very good thing for someone suffering a chronic illness. I trust him implicitly with my medical care.
Although it does seem ridiculous to say, I actually do think my condition has worsened considerably in the intervening year- this may be because I now have a marker as a starting date, and I have always worsened at this rate, or it may just be psychosomatic because I now know for sure there is something wrong. Whichever it is, I cannot make up the worsening crunching in my knees and especially my left that has happened due to the instability. As well, it seems whenever I have a flare up of significant pain that is much higher than my usual base level, it seems to be it then becomes my new base level. I do not go back to what my pain "used" to be- it becomes my new normal. Even though I know this is happening and will continue to happen, the continued support of my family, friends, and Jonathan, make it an easier ride than it would be if I was alone, and for this I am grateful.
While a year doesn't seem very long, I have of course, always had EDS. I was born with it, I have suffered chronic pain since I was a very young child and will continue to do so for the rest of my life.
While of course, in this age of the internet, I had done my research, and I was pretty damn sure I had EDS, you always have that niggle. It eats away at you- am I faking it? Just dramatic? This happens because in our society, disabled people are stigmatised and marginalised. We are made out to be liars, fakers, and drug seekers. However, I was relieved when I was told I have EDS. My pain and suffering was validated. I had a reason for it.
This of course has now impacted my medical treatment- after my third lateral release totally failed, I was referred on to a specialist: he is now going to perform an ACL hamstring tendon reconstruction on the 29th of March, so long as my date doesn't change, (note- not a repair, as I don't need the repair, which is how this surgery is usually performed, I just need the added strength in my knees) and I would not have had this referral, and subsequently this operation, without that diagnosis. If you are interested, this is a good video of the surgery. I am having two: left knee first, then my right to follow when I am recovered. We chose to do my left knee first as it's currently worse in terms of the condition when my surgeon looked over the MRI scans he ordered.
I am eternally grateful for the help my diagnosis has brought me. I also now have the trust of my GP to be on tramadol for my chronic pain, and the belief I need that sort of pain relief- we tried the alternatives such as SSRI's that are prescribed for pain, and nerve pain medication, and he believed me when I said they didn't work and he had no hesitations prescribing me tramadol, something I am so grateful for. It can be hard, very hard, to get any painkillers prescribed, especially as a young person as the age old "you're too young to be in that amount of pain!" follows you- well bud, tell that to my genetic condition. Of course, and correctly, they do fear the risk of addiction and other problems caused by painkillers like that, which I appreciate. Thankfully, the GP I prefer to see at my doctor’s surgery isn't like that at all, he listens to me and does his upmost to help me. Finding a doctor like that is a rarity and a very good thing for someone suffering a chronic illness. I trust him implicitly with my medical care.
Although it does seem ridiculous to say, I actually do think my condition has worsened considerably in the intervening year- this may be because I now have a marker as a starting date, and I have always worsened at this rate, or it may just be psychosomatic because I now know for sure there is something wrong. Whichever it is, I cannot make up the worsening crunching in my knees and especially my left that has happened due to the instability. As well, it seems whenever I have a flare up of significant pain that is much higher than my usual base level, it seems to be it then becomes my new base level. I do not go back to what my pain "used" to be- it becomes my new normal. Even though I know this is happening and will continue to happen, the continued support of my family, friends, and Jonathan, make it an easier ride than it would be if I was alone, and for this I am grateful.
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