Just thought I'd share my story...I have never really shared what I've been through with outher Lupus sufferers but I am finally seeing how sharing our experiences can really help each other...so here goes!! ...
I first fell ill in 2006 when I was 26. I suddenly became very dizzy and stayed like that for 6 months. I became very anaemic (serum ferritin stores mainly), very weak had all sorts of skin reactions and my limbs started to swell up as well as my lymph nodes. The doctors couldn’t find out what was wrong and of course implied it could be in my head!...I eventually and very slowly got better but lost my job in the meantime and didn’t really have any treatment to speed my recovery.
I never really recovered my strength completely. I used to be captain of a ladies rugby team and competed in kickboxing, unfortunately I wasn’t able to compete at the same level again that I used to. I had never been that ill before apart from digestive issues and constant mouth/nose ulcers. I also had Raynauds but had it under control by wrapping up like an inuit everywhere I went! However I got myself another job, moved on and didn’t give it another thought.
A few years later I suddenly fell ill again in 2009. (I was due to go on a trip to Africa which I was really excited about and had just had all the vaccinations for the trip). My legs just started to give up. I think a lot of you on here call it ‘lead legs’…again when I’ve spoken to Rheumatologists they seem to be surprised when I explain the symptom?! My legs started to ‘cease-up’ when I walked and became very weak, it got to the point that I could only take a few steps or stand for just a few seconds. I also used to get ‘spasm’ like pains in my calf muscles. Within two weeks I’d gone from healthy to using a walking stick. The very first symptom when I look back was a right sciatic type pain that eventually moved into my calf muscles, at first the backs of my thighs and veins became very tender and sitting and hot showers became very painful. Few weeks after my legs gave up…pain moved up to my back and then the problems moved into my arms and they became very weak too. Trip was cancelled and signed off work as I was a support worker for disabled people and had become less able than my clients so I was of no use to them ?. The doctors struggled to work out what was happening and of course implied emotional issues!...I was very happy at the time I fell ill but some doctors believe what they want to believe unfortunately. Doctor’s kept offering me pain relief but as I tried to explain to them I was more concerned why my legs just wouldn’t let me put one foot in front of the other. They spoke to me like I should try and get out more but that was exactly what I wanted to do, which is why I wanted the doctors to understand the problems with my legs! I had to try and get on with life without their support and did the best I could to adjust, however I lost my job again.
Two years passed before any more progress was made and in that time I developed more and more symptoms. I started to suffer the fatigue terribly. I developed difficulty sleeping, restless legs and becoming really really overheated…nightsweats but no sweating to relieve the intense heat! I started getting really bad chest pains (doctors asked if I was anxious….starting to get irritating) couldn’t take a deep breath, couldn’t lie down (more exhaustion!)….turned out to be Pleurisy!....oh and dodgy heart trace…pericarditis! I eventually developed the butterfly rash although I didn’t know what it was. I develop new symptoms all the time and it seems when I get it the first time it’s really bad and after it eventually goes it comes back in a milder form and just gets added to my ongoing list of symptoms but sort of hangs out in the background in a weaker slightly more manageable sort of way!
Anyhow, I’d eventually had enough of not being listened to and wrote all my symptoms down and for the first time it did look like Lupus. In the doctor’s defence, when I first fell ill they did ask me the fatigue question but I wasn’t suffering with it at that time…however subsequent Doctors failed to go down that route again, probably because they’d seen the first Rheumatologist had ruled it out…it didn’t stop them revisiting the ‘it’s probably just stress’ diagnosis over and over again though!! I insisted that I go back to the Rheumatologist to redo all the tests and some weak positives were found. The consultant looked at my symptoms and said it’s ‘possible’ it could be Lupus/Sjogren’s and ‘what did I want to do next’?...He said “Well, we could either do nothing (?!!) or we could try you on some medication that we use to calm down the immune response and reduce the symptoms”. I was a bit shocked by the first option seeing as I had just finished telling him how much I’d been suffering, I couldn’t imagine why he’d think I’d want to do ‘nothing’…I wouldn’t be sitting in front of him if that’s what I wanted…I do sometimes wonder what planet doctors are shipped in from! I obviously opted for the Hydroxy and he booked another appointment to check my progress.
Well, within a month my legs, fatigue, skin, ulcers…everything had improved!!!....and it certainly wasn’t a placebo as none of the other medications I’d taken had done that! He was happy with the results but wanted to try me on just one tablet a day to see if that would be enough. After a few weeks I felt the fatigue and leg problems coming back. I didn’t even consider it could be the reduction in dose, I thought the previous improvement might have just been a coincidence and that I was going to have to go back to square one. My mother suggested I call his secretary and just tell them what was happening. He immediately said it was probably due to the reduction and that I should go back to full dose, he also said that given my response to the drug that he was now convinced it was Lupus. Finally I knew what was going on in my crazy body!!
During all this heartache and uncertainty I was studying for a BSc Hons in Psychology with the Open University! This has been without doubt the hardest few years of my life. There were times I thought I would not get through it, extreme pain, hospital visits, missed assignments (and not always given extensions by my tutors as I wasn’t diagnosed until 2011) But get through it I did and I graduated in April 2013 this year!
I still suffer with my health and each day is really hard but I know I can get through almost anything and it was Lupus that taught me that! Doctor’s assume we suffer due to the pain, emotional trauma of being ill etc but actually with me, I could accept all of that – the thing that caused me the most pain was not being believed. When you’re whole world is crashing down around you and you’re just about keeping you head above water, trying to be positive, the most painful blow is the kick in the teeth you get when the doctor speaks to you like your imagining it, when they’re disrespectful and when they make you feel about two inches tall…
….that, is the worst symptom of Lupus….
Thankfully my GP and Consultant now are wonderful. But I think it’s really important for GP’s and Lupus specialists to realise their impact…some practitioners seem so concerned with pointing out how our symptoms are exacerbated by stress but fail to realise that the majority of our stress often stems from the way we feel when we have been to see them. We don’t expect miracle workers, in fact, far from it. We just want human beings….and all we want above all else, is to be treated like human beings too xxxxx