Struggling

[Les2008]

Had DLE since 2008 and coped with this since then, didnt realise that for a while all the other symptoms ive been getting was actually SLE which I have been diagnosed with a few months back, painful muscles/joints. Mouth ulcers, hair loss in patches, just one day they appear. I have been on anemia tablets for a few years and now am B12 defiant too, along with dealing with Lupus you will know I'm exhausted. I have a very busy job about 6 wks ago I started to feel like I wasnt coping well at all, the tiredness left me unable to think straight, was getting a little confused, couldnt apply myself to do my job, started crying a lot when I got home, this got worse by the day, I have been signed off work 3 wks now. Cant say I feel much better really but less stressed, I feel frustrated that im feeling so low and will be returning to work on Monday. I am very apprehensive returning as I fear I cant cope even though work will help me as best they can. I have been on antimalarial drugs for about 2 weeks and have had no relief as yet but understand its early days. The symptoms ive mentioned are only a few I am suffering with I have about 14 in total. Can anyone tell me if they have felt the same and does the low moods pass and tiredness or could you offer some advice please. I am trying to stay positive as best can. Thanks in advance.

[Lula76]

Hi Les. I'm sorry to hear how stressed you've been feeling though it's good that you've been able to manage this with some time off work. I can understand your feelings of apprehension about returning to work. What expectations do you have of yourself when you return and is it possible to manage these expectations? I think one of the hardest things with Lupus is giving yourself permission to have an off day and maybe until the medication kicks in, you should give yourself the permission to go at your own pace. How understanding are your work and could you explain to them how you're feeling?

Many people on here understand the fatigue and the malaise that goes with Lupus so you are definitely not on your own.

I wish you all the best for your return to work on Monday. Maybe try and do something nice (but low key!) this weekend to distract you from worrying?

L

[Les2008 in reply to Lula76]

Hi Lula, work are very understanding and will help me as much as possible, im a team leader over two busy areas and a compliance officer so my job is so busy, I just worry I will be the same as I was before I went off, feeling so stressed and not able to apply myself as before, I felt like I was failing at my job, underetanding lupus will be better for me so least I will understand why I feel like I do and whats going on. I know things are going to need to change but not sure yet what those changes need to be. I guess I need to sort this out asap so I am able to deal with everything. I am hopeful all will be fine.

Blisters have started again today on wrists and the ulcers in my mouth are bad, eating hot food is not nice as so painful and sensitive to heat, hope they dont get any worse now. Thanks for the reply, much appreciated.

[Lula76 in reply to Les2008]

Poor you! That sounds painful. I would say don't be too quick to change too much, too soon. Suck it and see. And just go easy on yourself - being fearful and stressed will make your symptoms worse so just go at your own pace xx

[Buffy14]

Maybe more time off work is needed to give the medication more time to kick in , it can take up to 3 months for hydroxy to work properly , you could make things worse by going back , sounds like you have a helpful employer , you can get leaflets from here to give to your employer which will explain the illness and your needs .

[Les2008]

Thanks, dont really want to be off any longer as need to get back to it. I fear being off too long that I may not want to go back at all. I will look for some info leaflets though, may help.

[Les2008]

Does anyone know if this is anything to do with lupus. This can happen at any time throughout the day/night, my feet just go really hot then stops within a few mins, like when you get a hot flush. Other times they get that hot I have to place something really cold on them to cool them down, as the top of my foot itches like mad and could cheerfully chop my feet off( obviously that would do me no good) but at the time they really hurt, I end up taking anti histamine which works after about 20 minutes, also has anyone had issues with tendernitus with lupus, I had a bad case of calcification of the tendon in my shoulder and couldnt move it at all for about 4 weeks, my other shoulder feels as though the same thing is happening at times then eases, im then just left with painful muscles like they have gone weak, I also suffer with lower leg pain in the muscles and when walking its like the muscles seemnto go stiff. the doctor said its not shinsplint but due to see rheumatologist in a few weeks for the first time since my recent sle diagnosis and wondering if any of the above is connected too. Thanks

[Chanpreet_Walia LUPUS UK]

Hi Les2008,

Around 90% to 95% of people with lupus will experience muscle and/or joint pain. We published an article on our blog about pain management which contains helpful tips and information: lupusuk.org.uk/pain-managem...

Acidic drinks like fruit juice can sometimes be the cause of ulcers. We published an article on our blog about coping with oral and nasal ulcers which I hope you will find useful: lupusuk.org.uk/coping-with-...

Hair often thins and can become patchy when lupus is active however; when lupus is brought under control the hair follicles begin to regrow. We published a factsheet on ‘LUPUS: The Skin and Hair’ which I hope will be of help to you: lupusuk.org.uk/wp-content/u...

Also you may like to read our blog article on ‘Coping With Hair Loss’ here: lupusuk.org.uk/coping-with-...

It is important to bear in mind that antimalarial drugs like hydroxychloroquine can take from three to six months to exert its full effect.

If you need information about lupus and employment, including information about your rights and what support services are available, we have two booklets that you can read and download at lupusuk.org.uk/working-with.... If you need physical copies sent to you, please email me at [e-mail].

If you would like someone to speak to, we can provide you with LUPUS UK contacts who you can chat with over the telephone. These contacts are volunteers who mostly have lupus themselves; they are not medically trained but are there to offer support and understanding. If you would like a contact to speak to, you can email me with your name and address.

You may like to have a read of our blog article on stress management and relaxation here: lupusuk.org.uk/stress-manag...

Please let us know how you get on, wishing you all the best.