My pain levels and joints have been much, much worse over the last couple of weeks, and as the days go on everything gets progressively worse. I’d been trying to figure out why everything has been so much worse but couldn’t come up with anything, until last week, then it all made sense. All of my joints have been more unstable, subluxing and dislocating, swollen and painful over the last couple of weeks. Every hour of the day, no matter what I do or don’t do, is more painful and harder to manage than it has been in a very long time.
I am in more pain when I sleep, which is making my sleep pattern worse than it already is. I struggle to get comfortable no matter how I lay because of the pain, so when I wake up my pain levels are far higher than normal, even when I’ve only been asleep for an hour or so. All of my joints are stiff and swollen where they have subluxed or dislocated overnight and I have not been conscious to deal with them. Even my hands and fingers are swollen to the point I’ve had to stop wearing rings as they hurt with the swelling, something I am not at all happy about.
During the day I have been continuing as normal, pushing myself too much and not taking it as easy, pacing or resting like I should, but that’s nothing unusual for me so my activities shouldn’t have been causing the continuous agony I’m in. As the days have gone on and the pain has increased I’ve drastically had to reduce what I’ve been doing. Even simple artwork, that I need to finish, has had to wait where I’ve been unable to hold a pen or paintbrush.
As I mentioned my fingers, thumbs and hands are swollen and all of the joints hurt, so using my hands has been harder than normal, restricting my abilities further. My shoulders have been staying out of joint, especially my right one, so I have been living in both of my shoulder braces, which I’m not meant to do as it weakens the muscles. My neck has been weaker and my head has been tilting to the right more, so I’ve had to wear supportive neck pillows to alert myself that I’m doing it and to straighten my head. My back hurts from top to bottom all day which had been making all positions difficult to stay in. I’ve had to start wearing boned waist trainer type supports to try to reduce the pain, but where my joints have been restricted to ‘normal’ ranges I’ve had more pain. My hips are popping more and seem to be more painful, thankfully not as painful as other parts of my body which is a bonus, although I have been experiencing a very weird sensation up the back of my hips. The only way I can describe it is as though I have electric shocks running up the back side of both sides of my hips. I’ve got no idea why I’ve started feeling it but they come and go when they please. I won’t keep on going into detail but both of my knees have been agony, swollen and giving away a lot more, and the swelling in the rest of my legs has been worse (I’ve actually had cankles!). Plus my heels are incredibly painful which makes the rest of my body worse where the pain shoots upwards. Anyway….rant over.
I had an appointment with my breast surgeon on Tuesday 16th to confirm/ prove that I’ve quit smoking and to get confirmation that I’m ok to proceed with my operation date. A couple of days before my appointment, I was thinking about what had been discussed in the previous one in case I had any questions that I wanted to ask. As I was thinking I remembered something, the answer to why I have been much worse than normal. As I’m booked in for an operation where I will be asleep for longer, and I have major problems with my legs, I have had to stop taking my contraceptive pill to reduce the risk of deep vein thrombosis.
I have been taking a combined pill for over 10 years and despite all of my operations, I’ve never stopped taking it for surgery before. The only time my body has a ‘break’ from the pill is during the 7 days each month that I have to allow for my period. I have always found, like many other female Ehlers Danlos Syndrome sufferers, that around and during my period my joints and pain are far worse due to the hormones in my body. I have researched hormones in EDS before and (annoyingly) there is a link between them. It appears that I am definitely not the only EDSer that suffers from worsening symptoms because of hormones. Within the research I did, there was also a lot of discussion about contraception that can help or worsen symptoms. Having been off the pill for a number of weeks now, and feeling the effects of hormone crazy town, I know I am definitely benefiting from taking the pill.
This week I’ve felt like I was going insane from the pain to the point that I almost got so desperate that I was going to start taking it again. The thing is I know I can’t. I tried to get a doctors appointment, or phone call, to ask whether to increase my painkillers, take my ‘bad pain’ painkiller or go back on the pill, but as usual I couldn’t get an appointment. Instead, I’ve had to manage the pain on my own, like I normally do. It is extremely frustrating when you aren’t able to get a five-second piece of advice from a doctor when you really need it. I understand that the NHS is struggling but it doesn’t help when people really need help.
One of the worst bits about the pain is that it has massively impacted my mood. I’ve been struggling with my anxiety and my emotions for quite a while, which is understandable with everything I’ve been through, but where my body has basically been failing me it has made me feel much worse. Being so restricted emotionally and physically has made me more insecure and feeling more emotionally vulnerable. I should be more excited about the surgery than going back on the pill, but I’m not, I just want my body to feel better than it has been.
I’m taking each day as it comes right now and keeping in mind that in just over three weeks time I’ll be able to go back on it. In the grand scheme of things, it’s not too long to wait.
The one other thing that has come up with all of this is that because I am having a breast uplift is that I won’t be able to breastfeed. I wasn’t too bothered when I was told, but having had this extremely high level of pain and the experience of not being on the pill for a couple of weeks has seriously made me wonder whether or not I will be able to have children. I’m not going to discuss the topic of children here as it’s not something I’m in a position to think about, let alone talk about at the moment.
arbezlife 