As promised as part of EDS awareness month here in the UK I am dedicating each Mondays blog post to the subject of EDS. However due to being hideously poorly this is being posted on Thursday instead.
EDS to me equals pain. Some people are really lucky (after all EDS is a syndrome with people affected to different degrees) and have very flexible joints and no pain. Others like me have a great deal of pain and others again have the added complications of gastroparesis and intestinal failure. Despite my pain I still consider myself one of the lucky ones.
I’ve had pain in various parts of my body for as long as I can remember. I don’t recall a day in life where I wasn’t experiencing pain of some description or another. As a child I assumed that everyone suffered with these types of pain and that it was normal. I limited discussions on it not wanting to appear weak, if no one else was mentioning it then there must be something wrong with me if I had to mention it. When I did mention my pain it was brushed off as growing pains or that I was just saying it to get out of something I didn’t want to do
From the age of 16 I had problems with my back, I regularly slipped discs up and down my spine. It wasn’t until I got much older that things took a turn for the worse with my life long companion EDS.
In 1999 I managed to injure my back quite badly, slipping two discs and I was in excruciating pain. I knew when I heard a very loud pop that I had done something bad. I didn’t make a fuss though as I was in an exercise class and we were lying on the floor stretching out after our workout. Yes I managed to slip two discs lying down. That is how much fun EDS is! I took myself off home after class, dosed myself up on painkillers and went to bed. The following morning although I could barely stand and the pain was so intense involuntary tears ran down my face, I sucked it up and went to work. My boss was not a pleasant person and saw any illness or injury as a personal failing. At every available opportunity he / she would bitch at me calling me a hypochondriac or saying ” they had never met someone with such bad health”. This person never had an ounce of compassion for another human being in their life. When I rang them and informed he/she I would have to go home as I was in too much pain the phone was slammed down on me. The previous attitudes I had encountered when I mentioned I was in pain were still alive and well.
Over the next few years I had a few more slipped discs. I regularly visited a chiropractor who practised the Bowen technique. I confounded her as the manipulations never held. She told me at the end of one session that she knew that there was something wrong with me she just had no idea what it was. She had never come across it in all the years that she had been practising.
I started to regularly pick up injuries plantar fasciitis in both feet at the same time, bursitis in both hips at the same time. All the time I carried on working with these injuries despite being in pain. My back was getting worse and worse. I could no longer stand in one spot for more than a minute without it seizing and locking up. Despite numerous visits to the doctors no investigations were done, occasionally I would be sent for physiotherapy but most of the time I was just given pain medications. The pain medications never worked they barely took the edge off. If I was using prescription medications I would be self medicating with over the counter drugs. It got to the point where I couldn’t not take pain medications, such was the intensity of the pain I was enduring. I wasn’t addicted to painkillers but without them life was miserable due to the pain being under medicated for years.
I never got on top of my pain until 2011 and I finally got my diagnosis of EDS. I had to fight to get a referral and even then I had to pay to see a doctor privately. Although this doctor did diagnose the EDS she didn’t appreciate the smallest amounts of movement above the limited activity I did perform daily would have me in agony. She objected to the fact I was using a wheelchair ( something I had used since 2008 as walking caused so much pain in my back, hips, knees and ankles on top of the dysautonomia I was also suffering with). Her reasoning was I needed to be more active and this would reduce the pain, what she didn’t take into account was the severity of my postural orthostatic tachycardia syndrome / dysautonomia. At the end of the appointment she made me walk from her consulting room to reception. A distance I hadn’t tackled for years. She walked behind my husband and I ensuring I didn’t get back in my wheelchair. I should have stood up for myself and told her to —- off but so pleased was I to have a diagnosis I was not going to let anything change her mind about what she was going to write in my official letter of diagnosis.
She proved her point with difficulty I could walk that distance however what she didn’t see was the three weeks I spent in bed recovering from her “wheelchair intervention”. Bursitis flared in both my hips, plantar fasciitis in both feet and my back has never been the same since. In tears I contacted my gp, who after trying me on every drug he could before starting me on morphine reluctantly had to admit defeat and write the prescription.
We had both held off from that day for so long. Once on this road there was no turning back. There is a lot of emotion about opiates, some people seem to think that if you take opiates and aren’t dying from cancer or some other dreadful disease then you are a junkie / addict. Let me assure you this is simply not the case, I do not and never have taken morphine to get high, I don’t get high with it. What morphine allows me to do is get out of bed and have a bit of a life. Without morphine I would be in bed unable to move due to the severe pain in my joints. I would have zero quality of life. I do not intend to spend the rest of my life staring at four walls because of peoples ill informed attitudes towards opiates. After taking the medication I spent the first time in as long as I could remember without severe pain.
People may argue that I could have tried various different things before “giving up” and taking an opiate painkiller. I would respond with “don’t you think I have tried?”. Here are just a few of the things that I have tried over the years acupuncture, osteopathy, Bowen technique chiropractors, massage, Tens machines, exercise, Yoga, applying heat and using distraction techniques. You see it wasn’t that I didn’t try, it was that nothing worked. I still use applying heat pads / hot water bottles and distraction techniques daily to manage my pain. I will always use these first before resorting to taking more medication. Its never a case of popping more pills I use my medication sparingly. I plan to live a long life and I don’t want to get 20 years down the line and be out of pain medication options.
Sometimes I get asked “what joints hurt?” its easier to reply with what joints are not hurting that day. Every joint in my body causes me pain. For the last few days every joint in my body has been burning. The pain has been so intense it’s been difficult to get comfortable as even the duvet ( comforter in the USA I believe) touching my feet has hurt. Its not always this bad most days its a 5-6/10 which is a level I can deal with. At the moment my back and hips have decided they would like to be the centre of attention, next week it could be something else! Some days its a constant battle to keep on top of the pain to stop it spiralling out of control other days I don’t need to touch additional pain killers however those days have been few and far between recently.
Like anyone with chronic pain there are days when the pain alters my personality. On a bad day I can become quiet and withdrawn. I can get really snappy, losing my temper at the slightest provocation. A dogs paw placed in the wrong place can leave me writhing in agony. I have a couple of these days a week and they are usually preceded by a night of poor sleep. Poor sleep is the chronic pain sufferers worst nightmare, for me it doesn’t only affect my pain levels but it also exacerbates my dysautonomia.
Over the years I have also noticed that changes in the weather can also lead to increased pain. There is a joke amongst the EDS community that we are human barometers. I have an increase in migraines and joint pain when the weather is stormy. Cold weather is the absolute worst for my joints as it makes everything feel tight and sore. If my legs get cold ( even just a draft on them) it can cause me agonising pain. They don’t change colour like in Raynauds phenomenon but they do go pale and until I get them warmed up the pain can be very intense.
EDS causes me a great deal of pain but I still try to get as much out of life as possible. One day when I was visiting my consultant I said ” I wish I had known sooner that I had EDS, I could have tried to protect my joints”. He replied “would you have lived life any differently?” my answer was “probably not.”
Me in bed on a bad pain day!