I saw my rheumatologist yesterday. A couple of weeks earlier than scheduled because I've felt very depressed. I feel no joy, no focus, no energy/vibe. My blood and urine tests were OK, but my skin is the worst he's seen it. 😫 He even, with consent, took a photo of my hands to show them to his medical students. I have a rash there too. I'm to see a psychiatrist to get medical help with the depression and to have a brain mri as he was to investigate the hypothesis of neuropsychiatric lupus. It was a lot to take in but of course, like an idiot, I googled it. It's not good and i got really freaked out. I've emailed him today to just clarify what he's said. I'll get the mri ASAP and hope for the best. Anyway still a super sun safe ninja, I'm just going to have to embrace that.... "This is not how I am" (Pink Floyd's Comfortably Numb)
This is not how I am 😕 : I saw my rheumatologist... - LUPUS UK
This is not how I am 😕
I am sorry to hear how things are for you at the moment. You have done the right thing by asking for help from your rheumatologist and for posting how you feel about it all on here. We will all be looking out for you and hoping that soon there will be some respite. You have had a lot to take in with your new diagnosis of Lupus and your sun sensitivity which is impacting on your previous lifestyle. It takes time to accept and adjust which you will do bit by bit. There will be a brighter side of the moon for you. x
I presume your rheumatology started you on steroids for your rash? Or a form of medication?
I've been on medrol and plaquenil for quite a while now.
Sometimes it is not just taking something it is also applying topical as well. And find the right tropical cream for a lupus skin can be very tricky. It can turn your skin black makes it worse or get better. When I had my lesion rash I was given synalar gel it work but it takes time . Any form of lupus lesion or rash they takes time as with our body . My lupus lesion stays on me for a good 3-6 months it varies some stays about 2 months . All depends on the size and how well /unwell I am. With every thing in our body we have to rest . Resting is very important. The other thing is try to focus on other things like what makes you happy . Doing things that makes you happy. What you think that you can do briefly with out thinking of the pain or the rash or the stress that comes with it. Having a hobby or several is very good it helps me to focus on things other than my SLE or my pain .
Try something that you were good at when you were a child . What were u really good at?
I have been knitting and I have a amount of plants - tomatoes, chilli, pepper, cucumber. I love cooking too. Just right now I'm not interested. I'm terrible at resting, but im forcing myself too. I think my rash was particularly bad yesterday because I was on the ferry for 4 hours without a hat ( I stayed inside of course but there's so much light and so many windows) and once I reached the city it was extremely sunny. If it gets any worse I'll contact the rheumatologist again. I'm back there in a month
X
Ah.. sun reflection off the water makes it worse ,my dear . As a lupus suffer I never ever go out without my hat And my sunglasses and my SPF 50+ (La Roche Posay). I think you have learnt a well deserved lesson there. Continue to cover your skin with SPF 50+ even though it is like it , it still needs protection. When my skin started rashing up I immediately started covering it up with SPF 50+ it reduced it rashed and continued to apply it to top it up slowly the rash cleared up . Occasionally get it on one side of my left hand but it is not bad.
I always wear spf50 I really should gave kept covered inside. I won't forget next time!
Ok focus on your plants and cooking try making up a recipe or dish or baking up something you thing you like to make some things special out of those you have planted and use additional items with those. Use some of that creativity make use of that use the bad and turn it in to good. Whilst you are sitting and rest or laying down resting. Sometimes things pops up in your head write it down. They will be useful someday. Or may be your knitting if you feel your creativity lays there . Try joining some knitting clubs / forums there are loads of them that are free which you can get help and advice they are great community build up as well.
I know it is not the easiest thing to make up a recipe or make a pattern up . Or create something out of nothing. Sometimes when we rest and not think of anything it is the time we are best and most creative at we get loads of ideas bubbles in our heads. So I suggest rest is the best medicine. And stay out of the sun if you are planning to be in the sun best time is very early mornings and late evening is the lowers UV. Pls do cover yourself with SPF 50+ or you will get covered with extreme rash that will burn your skin .
Also check out the Lupus health unlock topic today about Neuropsychiatric lupus. There is an article about it by Cambridge University.
Thx
Depression is a common complication of lupus. You are definitely not alone in this experience. What the rheumy probably wants to know is whether lupus is causing depression on a biological level, or whether the depression is an understandable reaction to living with a complex and chronic illness. The MRI will show him if there’s any signs of lupus attacking the brain, and will help to guide him as to what the best treatment might be.
Sorry to hear you’re struggling. Depression is awful, and so is lupus. We’re here for you.
Thank you 😊 I really appreciate it
Hi Anonlupi
Firstly you are not an idiot we are all guilty I am sure of googling at some point for answers to the idiosyncrasies and wonders of lupus and other diagnoses. I am sorry everything is so full on for you at the moment . Depression is a difficult thing , I have had it and I still get what I call black moments , thoughts sometimes day . I can sympathise and empathise . I agree with what others are saying .
I find on a day to day basis trying to find something that makes you smile. It may only be a little thing but it will be there , Take every day afresh and please Be kind to yourself .
Take care M x
Thank you 😊
This made me smile, so passing it on! It was in my garden
Morning Anonlupi
Now that is adorable . I was having a bad morning but you have made me smile 😊 thank you # love hedgehogs 🥰
Take care
M x
Hi I am so very sorry that things seem so bleak for you and that life feels joyless. I think most of us can relate so well to the depression. It is not easy to live with chronic ill health. It is relentless and frustrating and painful. Your Rheumy is doing what he should do and checking that your depression is not neuropsychiatric Lupus. I think it shows that he is caring and thorough and not that he believes you have it but he wants to be sure to rule it in or out to get the best possible outcome for you.
I send you big Cwtches and sincerely hope the help with your depression helps you find some joy again xx
Thank you x
I’m sorry to hear you are suffering at this time, but the whole community here are wishing you well & sending love your way. I too am light sensitive & during my worst skin flare I also had photos taken of my body to appear in medical journals & also assist medical students in their learning. Not a pleasant experience at the time.
Sending you big hugs xx
Hello An update. I saw a psychiatrist last night and I've been diagnosed with clinical depression and prescribed Vortioxetine 20mg and min 150 mins walking a week. The psychiatrist was very happy that I'd asked for help and was impressed that my rheumatologist had acted immediately so I feel safe in his (rheumatologist) care. She gave me some reassurance that whatever happens I'm acting quickly and I have support.
My MRI is next week.
Thank you again for your caring and supportive messages, they really do help x x
Thank you for letting us know how you got on. That sounds a positive start . Being outside walking is very helpful I find, even when I don't feel like it! Wishing you all the best. x
I take photos with my phone of the small details I see, a new flower, beetle, lichen, a rusty bit of metal - anything that takes my eye. Slowing down to do this puts me very much in the moment and my cares and worries are put to one side. x
Brilliant! Sounds perfectly normal to me!!!! I enjoy the patterns and textures and looking at the 'other worlds' I can see in them. I draw and paint too and the photos I take give me inspiration for my art. If you dont already do that - give it a go! x
Have you heard of Zentangles? Because of your interest in pattern and detail, they would be a great way to start. All you need is pen/pencil and paper. Google Free Zentangle for beginners and you will find a wealth of youtube videos or other online information. It is so good for mindfulness and anyone can do it I promise you. It's all about enjoying the process and not worrying about any mistakes you make. Its not called ZEN tangle by accident.
Once you get a bit of confidence you might want to branch out into drawing the patterns in the things you photo. You could try tracing them or printing them out in black and white and colouring them in. x
UPDATE I received the written synopsis of my brain mri results this morning, I called my rheumatologist and he thinks there's nothing to be concerned about, he will check the actual scans when I visit at the end of June. I feel quite relieved 😀
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