Working with CND/Lupus

[dotty2203]

Hi there,

I have been given a provisional diagnosis of CND/SLE as might symptoms fit, but my bloodwork is unremarkable. I have been started on Hydroxycloroquine and have been given another Steriod injection. Sadly I have had shingles and tonsilitis again so I missed out on the benefits of the steroid injection which only last a couple of weeks at best. I am a very busy person, I have two jobs and 5 children, so rest really isn't an option. I can't afford not to work, and as one of my jobs is as a dance teacher, I need to be active. How do you cope? The pain I can just about manage with, but the fatigue is really dragging me down. It's too early to see any bebefit from the Hydroxycloroquine but after having shingles again, I feel awful! I'm struggling with very simple tasks. Are there any coping stratergies I can try? A magic spell would be equally well received! Could this ramp up of symptons be related to the new tablets? I am so tried I just want to cry. I have always been a very positive person even in the face of adversity (and to be fair I have had more than my fair share) but I am struggling to keep things together. Any advice would be gratefully received.

[DenverKUK]

Sounds just like me! Unremarkable blood work but tick all the boxes but no firm diagnosis yet. I'm only 3 weeks in with hydroxychloroquine as well and noticing no difference. I work full time with 2 kids and cannot afford not to work. I had the worst week with pain in my feet, hands and hips and felt so exhausted I was in tears one day not knowing how I would get through the day. So far I've learned to ask for help from my partner (who doesn't live with me) with household chores and cooking dinner so I can just lie down and rest. I never feel rested really though and doesn't seem to matter how much sleep I get I'm still exhausted! Everyone says just try to pace yourself as best you can. Good luck, I really feel your struggle xx

[Hidden in reply to DenverKUK]

To both of you: it's hardly surprising you are both whacked out really is it? I feel whacked out just reading and imagining what you both have to achieve on a daily basis - let alone with autoimmunity biting at your heels!

Give the Hydroxichloraquine a chance I would say. These drugs aren't miracle cures and they can take 6 weeks to 3 months to make a difference. Hopefully it will help you both though. It also exhausts us when we don't feel that confident in our diagnosis because of the negative bloods. It's just more uncertainty and more that can't be planned around or fully believed in. This creates much added stress l know.

Getting good quality sleep and eating a very wholesome diet and drinking lots of water should help. Perhaps it would help to look into whether your thyroids are working properly and your vitamin D and B12 levels are optimal if you haven't already done so. Mine certainly weren't for several decades and rectifying these deficiencies (vit D and thyroid in my case) helped me a lot.

Your bodies are sending you the message that you both need to make some rest time too so try to build some in when the kids are busy at activities or socialising or doing their homework. Aim for some serious TLC or a quality nap.

I never did this unwinding properly myself when my 3 kids were little and have paid a high price for this failure. So I'm hoping my advice hits home and you can both find some time to chill with your feet up and let this new drug do its job hopefully. If it doesn't then don't panic - there are others.

Take care, Twitchy xx

[dotty2203 in reply to Hidden]

Thank you. I know I just have to stick it our until the Meds start working, but I haven't ever felt this bad, I have always managed to keep going. I seem to have a good consultant who is understanding and is frustrated by the lack of results too. I eat quite well and I excercise a lot due to my job. I am determined that I will continue doing what I love. I have already given up teaching Ballet as this was the hardest part of my job and the constant tendonitis was too hard to deal with. I am trying to rest more, I am learning to sit down, which may not sound like much, but it is a huge step for me. My family are also starting to help out more as they can see I am struggling. I can't afford not to work, but I have a very understanding boss (who is also my best friend) and as it is mostly desk based, it is manageable. I think it's time to speak to my older children and explain what's happening and let them know they may need to help out a little more. I appreciate your advice, it seems Hydroxycloroquine works well for most people, so hopefully once the shingles symptoms dissappear, and the meds start to work, I will start to feel like I can cope again.

Dotty x

[Hidden in reply to dotty2203]

Dotty I am on a closed Facebook Sjogrens community that I rarely comment on myself. But the other day there were a group of people discussing how long it took for the Hydroxy to properly kick in - and for most it was about 6 months.

And just for your interest 40-50% of those with Sjogrens are seronegative and it can affect the central nervous system too. I was diagnosed by lip biopsy and my main symptoms are neuro related.

Best of luck and cut yourself plenty of slack when you can.

Twitchy

[Paul_Howard Partner LUPUS UK]

Hi dotty2203 ,

We published an article on our blog last year about fatigue and collected loads of people's tips and experiences on managing the symptom. You can read the article at lupusuk.org.uk/managing-fat...