Since coming home from work to shield in March this year my health has had a rapid decline. I've gone from managing daily activity, working 6 hrs for 5 days to mostly being incapable of doing much at all. My chronic fatigue is much worse, I've had constant sinusitis, insomnia for months which has thankfully improved now, I can hurt all over and feel like I have full on flu. I was lucky after a few months to manage to get out of the house once every ten days to pootle slowly in a supermarket. Whilst there very quickly my 'batteries went flat', I'd run out of steam & really slow down, weak with everything hurting, struggling to get back to the car & then get out of it once home. The next few days I'd be incapable of anything except having a bath and slinging on clean PJ's. Instead of three hours to get up, get bathed, hair washed etc it now takes me 5 as I'm so slow. Just getting out of bed to the bath is a feat in itself taking me at least an hour or so. My memory is shocking, I can't deal with talking or noise in the mornings. My breathlessness has got worse, x-ray normal, chest pains more frequent, awaiting results of heart scan here.
Now shielding has ended I have a minimal return to work, this is due to my work area in hospital being considered unsafe for me to return to as normal. I've been switched to working at the weekends for six hours both days, the other hours are paid to be at home. I'm supernumerary at work with nothing to do much whilst there but sit on a computer pretending to do stuff. After 4/5 hrs I'm done having to sneak out home. I can't manage the remaining hours as wiped out. They've changed the lighting to bright white led strips, they hurt my eyes, I'm light sensitive. Next day I'm a hurting, flulike mess again. I'm never going to manage to return to work properly like this, but not working is not an option.
My bloods are mostly normal, iron still low, I'm on long-term ferrous meds, quite low vit D, again on supplement, magnesium was slightly under normal. C3, C4, ESR, ANAs all normal range so I don't understand what's happening. Is this a long term flare I'm having? What do I do? I have to get my normal back. Sorry if I've piffle waffled, I'm at my wit's end and don't know what to do it why I'm so incapable these days.
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MandaM
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Hi.....are you under rheumatology? I would suggest you get in touch with them you may need some more meds.i cant work now it's just something I had to accept and put to bed.im currently going through a phase of extreme fatigue and sleep days but it's just the way it goes. What you describe is normal for most of us with lupus ...it is what it is just be kind to yourself,pace yourself and rest x
Thank you for your reply. As a transplant patient my immune suppression is prescribed & supplied by renal consultants and not by a rheumatologist. I do have a rheumatologist but due to Covid there's been no consultations of any kind this year and unlikely to be any for awhile to come. I'm lucky in that I work in the same hospital so I can obtain the blood tests by seeing the secretary. I've had negative tests so how come I'm in such a state as I'm am as this isn't normal for me? Usually I manage, with alot of help from my husband. No work, no roof over our heads, it's that simple, giving up and taking to my bed isn't possible and no life. There's a mortgage to pay! I have alot of money I have to find each month. I've been refused PIP, that comes nowhere near a living wage anyway, so until we can retire it's just not feasible.Can anyone advise me on how come tests are negative but all this is going on, a kind of exacerbated version of my norm? Even the summer facial Lupus lesions are only just subsiding. I was diagnosed Lupus and renal failure almost 21 years ago now and not ever having had a proper Lupus consultant I'm still not understanding the ins and outs fully.
Results can be flit between positive and negative mine are currently negative.i have continued to have all my appointments this year theyve just either been via telephone or video have you asked OT? I think you need a rheumatologist.. .. this is the nature of lupus I'm afraid
I'll try speaking to the Rheumatology sec again but as I said this department has ceased all types of appointments and are also very short staffed. When up and running normally it's so oversubscribed that appointments are once a year.
I've only ever had one positive test and that was in April 2000. My thinking is that the stress of Covid, shielding, the loss of all my usual pastimes, drumming, performing at events, the routine of work has caused immense stress bringing in this Lupus onslaught. It's just trying to overturn the effects.
They are very aware that I've been having a lot of problems that have required added medical treatment but again I haven't managed to get to speak with my GP directly. Covid really has had a bad knockback in getting t speak to the right people.
This also sounds a bit like fibromyalgia. Try n get in contact with rheumatology I'm sure with ur contacts in hospital someone should b able to speak to u on the phone at least. If u have been like that since march it sounds like it. Are you sore all over shoulders hands back headachy etc and the fatigue is awful. I have inflammatory arthritis and fibromyalgia and ur symptoms sound very like it. The not sleeping is the biggest factor as well as the overall pain I also have tender points on my body. If I do too much I pay for it. I was told to pace myself do a little n rest when u can. Also like you not good in morning. Also I got prescribed amitriptiline to help with sleep which helps. The memory thing is murder too. I get embarrassed sometimes. But like you I need to work mortgage etc. I really hope u can get in contact with someone to help you. Take care I can relate to you. Big hugs. Xx
Hi MandaM I am so very sorry that you are suffering so badly. Something is going on with you and you need help to identify and treat it. I know from experience that financial worries exacerbated my condition when I first became very unwell. Can you chase up your Nephrologist and Rheumatologist and a referral to Occupational Health? Please try to apply for PIP again. If you can get The Benefits and Work site it costs £19 a year and will give you advice and tips on putting your evidence in the best way. You are struggling badly and need help. I really thought that we would lose our home when I had to admit that I could no longer work. It was immensely stressful, we had to use food banks and melt down my jewellery just to get by. Eleven years on we still struggle but the mortgage is paid off now and that is such a massive relief. Sending you huge Cwtches and hoping that you can get the care and support you need and deserve xx
What is your usual way to manage a flare? Im assuming you took a round od increased doses of steroids? What happened aftee that? Did it improve your symptoms at all or no change? And sis you try highee sose od steroids if your usual dlare treatment didn't work?
Many non lupus friends and family are all experiencing symptoms like you are expressing. My personal belief is it is caused by the anxiety and depression of the pandemic. Many people are suffering PTSD from the state of affairs our world is presently facing. I am a firm believer in psychoneuroimmunology and see a MD/phd rheumatologist whose focus is treating the mind and body as one and he has improved my life immensely. Coincidentally as my energy increased and my symptoms decreased by changing sleep, eating and exercise regimens and also seeing a therapist to treat my anxiety disorder with CBT and EMDR my Ana and all other antibodies have stayed non detectable. What you described is more in line with anxiety or depression symptoms or maybe fibromyalgia than a lupus flare.
My heart breaks for you. So much going on. I don’t think blood tests are sensitive enough to rule out that many of your symptoms are due to lupus. As Roarah says, depression is also common and can be caused by lupus, the pandemic, the medications you take for your lupus. There are ways to ldetermine if depression is contributing to your symptoms.
The breathlessness alone may be a contributor to your over-all poor health. I learned after mild lung issues after Covid what a relief it is to breath normally. I know they will pursue the cause of this with you.
Can you get a telemedicine appointment with your rheumatologist? With your GP? Someone who knows you may be able to tell the difference between your usually joint symptoms and your all over aches. The flu-like feeling can be so hard and be from many things - your lupus, a virus, fibromyalgia.
I am sure you know this already but take your temperature regularly and record it.
Hang in there. This is your doctor’s job to figure out all the things that are contributing to your downward spiral. It may be several things. This is why those caring for you have to be on the ball.
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