My Personal Experience

My Personal Experience

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

13 Replies

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  • Excellent job!

  • thank you! :) x

  • Well done. I am recently diagnosed by accident after being in hospital for a stroke. I had seen my GP many months before and asked him if he thought I could have Lupus because of the many symptoms I had. He laughed at me, he isn't laughing now. Good luck xx

  • lol!...funny how the self assured air of confidence fizzles away when the docs realise we're actually not all crazy, attention seeking nutters with nothing better to do!

  • How I understand you, I've had similar experience, as had many of the contributors here. I think lupus used to be quite rare, so GPs were probably not seeing many cases in their consultation rooms during their practising time. But what with the pollution, stress epidemic due to this recession and redundancy and working every hour God gave us to make ends meet, what with the food full of chemicals and allergens that we are now ingesting, no wonder the incidence of autoimmune diseases has increased dramatically in the past few years. And it will continue to rise and there will be a point when the GPs will see so many cases that they will be bound to learn about it a great deal and they will not disregard/patronise any longer.

    Meanwhile just see ourselves as the pioneers of a revolution - others will benefit from our experience and that's good.

  • definately :)

  • What a journey and I fully agree that it's the process of diagnosis that makes it even more difficult. How can you tell people what is wrong with us when we are so very ill but have no diagnosis. Here's hoping the doctors of tomorrow are willing to learn more about this condition.

  • I have faith they will. The doctors I have seen have clearly been very intelligent but I suppose like 'Purpletop' said before that it is still pretty new to them. With our input as well I think we can make progress as time goes on. I believe they genuinely want to help but when patients symptoms don't neatly fit into their diagnostic criteria that's when they start to assume 'other causes'. I hope as time goes on and they meet more and more of us they will realise that the condition comes in a whole spectrum of forms. When medicine starts to become more holistic looking at the whole human being I think everyone will benefit for the better. :) Xx

  • as i began to read your post, i thought: this is so like my experience: uncanny!

    but it took me nearly 30 years to find a genius, lupus-experienced rheumy and finally be diagnosed and treated with hydroxy which is helping in many ways even though i am 59 now.

    your story moves me deeply. i'm very grateful to you for telling it here: reading your story comforts those sad memories of my younger self...that girl & young woman (who i guess i still am in a way) who went through such similar experiences to yours, alone, confused, distraught much of the time, but determined somehow to have as much of a life as possible, and not to loose hope

    i am vvvvvvvv glad you have begun competent diagnosis and treatment sooner rather than later. and i hope to hear more about your experiences here on forum. thank you so much.

    i agree with our sisters who have posted above: i feel a degree of optimism that we may

    live to see more understood about autoimmune conditions.

  • Hi Barnclown,

    I'm so glad sharing my story helped to comfort you. That is really the main reason I decided to share my experience. I know when I had listened to other's stories (rather that reading the symptom list on the lupus website...which is still helpful tho!) it helped me realise my experience wasn't as unusual as I originally thought it was and it helped me piece together my own experience.

    Thank you for your kind words, I am so grateful for the support I am receiving now and I hope you experience the peace, comfort and joy you deserve and that your treatment continues to ease your symptoms and your pain xxx

    My heart literally breaks when I hear that you and others have suffered so long, the thought is almost unbearable. But your pain wasn't in vain.....it was hearing how ladies like you (including my own mother - cervical spondylitis, whom I've been thinking lately probably actually really has lupus) had suffered for so long that made me determined to be heard. Hearing those horror stories I felt that I wouldn't have the strength to endure that process for 30+ years and that's what drove me to keep fighting. I watched how my Mum was treated and I was determined to be ready for anything they threw at me. It was the knowledge that I gained from strong ladies like you that helped me fight through. All the suffering in your younger years and all the wisdom I have heard from ladies like you before me, your stories...that's what fuelled me....I wouldn't have been such a little pit-bull if it wasn't for all of you.

    So....THANK YOU, it was you that kept me going and I did it for ladies like you xxx :)

  • ...and all the strong men out there suffering too! Xx

  • great reply, s.m.f: continuing to touch very sensitively, + with what seems to me great insight & compassion, on so many absorbing aspects of living with lupus. your last bit makes me chuckle: ok, stats indicate mostly women have lupus, but yes, there are guys who do too, and several guys are great contributors here on forum ....so, after i pushed the submit button on my post above, i cringed: shoulda acknowledged our 'brothers' even though i sensed none had replied to your blog....yet...so, am v glad you did!

  • Hee hee....me too! Only when I had hit submit did I realise, as I have never actually met a man with Lupus!....but wanted to tip my hat to our brothers!

    And a note about the word strong I've been using a lot....by strong by no means do I mean someone who doesn't cry or feel down. To show our emotion and pain is not weakness...by strength I mean someone who had had to endure suffering, just this in itself changes a person and deserves recognition and respect. Xx

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