Up until recently I've been powering through working 40 hours a week as a graphic designer.
I've been suffering significant muscle weakness from hydroxychloroquine treatment and although I've stopped taking them, the affects are limiting my activity and mobility significantly. I've been told by my consultant it'll be a slow recovery and could take up to 5 years for me to fully recover.
The problem is I'm really struggling to work. I started home working 1 day a week to reduce my commute. I've dropped my hours to part time. But still, I'm absolutely drained and I can't cope. I live at home with my parents so I can take the hit financially, but I've already lost so much from this disease. I lost my partner of 8 years, all my hobbies, my friends, my beautiful home, my identity and now I'm scared I'm going to lose my job.
What can I do? I feel so isolated and alone and like a burden to my family and colleagues.
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eescvc
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Hi, I've just posted something along these lines, in a similar situation to you. It's bad isn't it. Don't know what to do, life ruined, people judge, get called lazy! Really am fed up
Apply for disability get it stated it takes 2 t yrs 2 finally get approved, i was that way, just couldnt do it anymore applied in 2012 got it 2014/2015
Keep complaining to docs too tell them what u cant do anymore so its noted.
I feel u on the burden but try not to, they need to be schooled on the disease & its symptoms, here 4 u anytime , had lupus 15 yrs n always have worked ft up til 2012
Hi Eescvc
So sorry to hear abt your struggles. Why has doc said it'll take 5yrs to fully recover, from what? Didn't know it was curable. There are alternatives for hydroxycloriquine why hasn't the doc looked into tht. You suffering like this isn't going to help in long run you need to start pushing for help. There are so many options if you don't want to take any meds. This is an autoimmune condition unless there's a cure to correct that I'm afraid this isn't going to heal. I've had all sorts of tests even had 24hrs of monitoring my gut to help cure acid reflux. I was told my acid levels weren't high enough to get treatment what a waste of time that was. Funny that because conditions like ours start from the gut. If you look into it you'll find majority of ppl have acid reflux the gut, probs of all causes. I had been taking omerapzole for 6 yrs before I was diagnosed with lupus.
So don't listen it's your body and only you know what your going thru get help. So sorry for going on, hope you find whats best for you. Take care x
The 5 years of how long the hydroxychloroquine will take to leave my system. So the bad side effects I've got in the form of muscle weakness could last that long.
Did your consultant believe that the muscle weakness you were experiencing was the result of the hydroxychloroquine? Or is it possible that this was a symptom of the lupus itself?
Are you currently taking any medication for your lupus? Has your consultant offered any other treatments after you stopped the hydroxychloroquine?
It may take some time to find a treatment regimen which will help to get your symptoms more under control. Hopefully when you have, you'll be able to return to a more regular work pattern.
We have a couple of booklets about lupus and employment which you may find helpful if you haven't seen them. You can read or download these from our website at lupusuk.org.uk/working-with...
The muscle weakness was put down to Lupus for the past 2 years, until I was hospitalised over the summer and they did loads of tests including MRI, Muscle biopsy, EMG. Eventually they put it down to hydroxychloroquine and stopped that. I am also on Methotrexate and have been for a year now.
For my joints, yes I think so. My main issue is fatigue and muscle weakness. I told my Lupus nurse last week when I saw her that I've been falling a lot recently because of the weakness. (Quite badly a few times even down a flight of stairs) and she said it'll be a slow progress.
Sounds like you are having such a tough time. It's so awful to feel you have lost so much through illness. Have you seen a neurologist about the muscle weakness? Having to wait 5 years until your system recovers sounds kinda extreme? Would it be worth getting another rheumatologists opinion? Perhaps you can go part-time at work as it sounds like you love what you do? Really hope you can make some progress. There's lots of support and friendly listening folk here when you need to vent. S
Sorry to hear you are suffering so much but I haven't been taking the above medication and I feel so fatigued that I fall asleep whilst i'm using the laptop and i'm always sleepy but then toss and turn at nights and have to get up most night for between 2-4 hours.
You could apply for PIP, Personal Independent Payment which has two parts. Mobility and personal care. You can ring the DWP helpline for the application form. It is not means tested but you will need to be honest about how the lupus affects you daily. It is best to get someone from the Citizen Advice, the Welfare Rights Officer from your local council or even Age concern to help you with the forms.
All the best and I'm praying a cure will be found for all our symptoms quickly.
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