Ok, so I probably should have started doing this a long time ago but I have been busy reading endless medical journals, health forums and social networking disease pages in an endless quest for answers..
I have been in pain for five years and four months now. It has become 'the norm' for me and I honestly do not know what it is like to not have pain somewhere in my body every single day. Despite this I remain positive and live an active life with my Husband and two children. I am not religious but I hope and pray with all my heart that my kids do not ever have to go through what I have been and still will go through for the rest of my life.
It all started when I was pregnant with my first child. Very early in my pregnancy I started experiencing joint pain in my pelvis, in what I have since learned is my sacro iliac joint (SI).
My GP told me it was pregnancy SPD and not to worry since it will disappear when I have given birth. Well a bit of pain turned into excruciating radiating pain that every time I tried to walk stopped me in my tracks. Since I was pregnant I was not allowed to take strong pain relief or anti inflammatories but when I ended up going to hospital in an ambulance one day when I couldn't make it back to my desk from the toilet because the pain had literally seized up my pelvis they gave in and let me leave with codeine. I was to take this as needed only when I was absolutely desperate. I left on crutches and as my pregnancy progressed and I got heavier the strain on the joint got worse and I had more painful than pain free days. Finding something that helps take the edge off can be a challenge, but more about that in another post...
That nine months felt like it lasted forever and because of this I did not enjoy being pregnant. I would love to tell you that when I gave birth at 37+1 weeks that it all disappeared....sadly this was not the case. It did improve however. I put this down to the massive immediate weight loss of giving birth.
My GP reiterated that it will go away I just need to wait until all the pregnancy hormones are out of my system.... Anything up to six months!!
Within those first six months I started to get very stiff when I woke up in the mornings. It took a couple of hours before I could move around freely and bending and stretching became very painful. I found I had painful areas down my spine and it felt like a rod had been taped across my back. The codeine was becoming less helpful as the areas of pain increased and I started to get really worried. The list of symptoms started to grow and now included debilitating fatigue, muscle weakness, frequent headaches and sinus infections, inability to regulate body temperature, raynauds, digestive issues, dry eyes, mouth and vagina, painful sex, facial rash, photosensitivity, mouth ulcers, hand cramps, plantar fasciitis, enthesitis in ribs. I would wake up many times a night in pain. Top count was eleven times turning over because of the pain in my ribs and hips.
Like most people I turned to the Internet to find out what was going on and how I could help myself.
I decided I was going to be sensible and not scare myself by thinking I had every disease that came up when I 'googled' my symptoms. It turns out that my specific symptoms, the stiffness particularly come up in less than a handful of illnesses. That made it so much easier to pinpoint what was wrong with me. The next step was convincing my doctors. I worked out I have an autoimmune disease. At first I thought Ankylosing Spondylitis but now I believe it to be Lupus and Sjogrens, the problem is many of them are not easy to diagnose especially in the early stages. Blood tests can be inconclusive and do not always match the symptoms. I also have fibromyalgia which complicates things as many doctors cannot see past this.
Soon I was pregnant again and as my baby grew it became harder for me to walk and I had to use my crutches for most of my pregnancy. My doctors, physics and consultants would not commit to a diagnosis or treatment plan. I learned by experience that this is the norm when it comes to healthcare professionals but if you want to know more about my feelings on this matter I will have to start a new post! ....I have a lot to say! :) .. My fight for answers continues...
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