Lupus sucks!

[Rubylu]

Well it's Spring and the weather is fabulous but after a half hour stroll with the dog this morning, I have nausea, a puffy face, rash, blinding hum-dinger of a headache, pains in my hands and feet (that had cleared up) , chest wall pains and I have just abandoned Sunday lunch with the family and gone to bed! So much for a lovely day. I've been doing fairly well lately, so this has taken the wind out of my sails today. I love to see the sunshine but am truly scared of how it makes me feel. 😢

[EOLHPC]

Am so sorry rowan 😔....lupus is a GIANT downer🤦‍♀️...am not reduced to going to bed...yet.....I wish I could be outside today, but no way....we all know that pretty much everyone here is agreeing 👭👭👫👬👫👫👫👭👭👭👬👬👫👭👭👭👭 thank goodness for Lupus UK & this wonderful forum

🍀😘🍀😘🍀😘 coco

[Rubylu in reply to EOLHPC]

Thank you Coco, it's a good place to let off steam .... saves a few tears and being grumpy with poor hubby!

I really feel for everyone on here, having their own trials. Today has got worse and worse by the hour, so splice in the horizontal duvet position is what I have sought. An hour or two's rest might perk me up for later when it's not so warm either.

Sunday greetings to you and all from one very uncomfortable Lupie lass!

X

[EOLHPC in reply to Rubylu]

🙋🏼 YEP: this is why I'm here today too 😉 Sending you lots of love ❤️🌷❤️🌷

[Rubylu in reply to EOLHPC]

Thank you. You too. ❤️. Well I've managed some sleep, which was good, but I've definitely had better days.... my poor head ☹️

I hope your day was not too bad, even if like so many, you may have been trapped indoors! 🌻

[Loopydroopy in reply to EOLHPC]

So just wondering, do you not get the protection from the sun if you use 50 sun block? Can you still have issues? Thanks

Teresa

[Rubylu in reply to Loopydroopy]

Yep! I would be a whole jeep worse without f50. It depends how warm it is too for me. I have demyelination issues which means I am not so tolerant of heat either. So hot baths/showers have to be luke warm. Hot climates are very tricky too. Without f50 I would burn big time and I don't always flare, so it's a bit unpredictable. I had a headache fore three days, so I may have been heading for a gritty couple of days anyway!

[EOLHPC in reply to Loopydroopy]

Depends, I guess:

my version of lupus reacts to ambient heat as severely as it reacts to light. I can use factor 50 and still flare just from being on the warmish side of the heat scale. So central heating set to high causes me to flare. And to complicate things more: I struggle to find any creams my skin tolerates without hyperreactivity...eg I am prescribed ointment versions of topical steroids because I can't tolerate the cream versions (e.g. Dermovate & betnovate ointments for me, not creams). I've wasted loads of £s trying heaps of factor 50 sunblocks...still struggling to tolerate one. Puts me right off going out on sunny warm days! 🍀😘

[Rubylu in reply to EOLHPC]

I generally don't blister, some people do, but it takes very little indeed to get a malar rash reappear, and my upper chest is super sensitive.

I'm pretty good at tolerating products, so I feel for you if you struggle with that too. Most hot sunny days will reduce me to a floppy heap on the sofa or bed, and that's without actually going out in it. So it can be a bit of a battle.

[Lupiknits]

I'm joining in the here-comes-the-sun (hide) club 🎼😂. Well, it looks pretty outside, doesn't it? I'm appreciating it from a distance. Perks me up knowing it's there but I hide! I've spent the day much like every day for over a week, semi conscious, under a warm fleece ☀️

[Rubylu in reply to Lupiknits]

Oh, dear Lupiknits , this sunny week has been tricky hasn't it? I'm sorry you've been suffering too. Soooo frustrating. Thanks for your empathy. I hope you find some energy soon 💐

[maggielee]

It got me yesterday (fatigue) and I didn't last long before going back to bed all day, so great sympathy, all plans went out the window.. Overcast today where I am and cheered me right up and still stayed indoors and felt well enough to wash my car later (car sits in a shady spot and overcast helped)...so got a little housework done too. We don't ask for much just a little energy to keep moving 😀. Hope you feel better...ml

[Rubylu in reply to maggielee]

It's nearly 5a.m and after a few more hours sleep, I've woken with electric shocks going through by foot! However, my head hurts less and I think the 'storm' has begun to pass too. I am quietly hopeful that I may actually be able to get out of bed later this morning. I hope so, as my daughter is home from uni for just a few days and I hater her seeing me so debilitated, and I just want to be with her doing nice things.

I'm sorry you were overcome too, it's such a horrid feeling isn't it? I do try and fight it, but once I start to feel faint and become slightly incoherent, I know now to give in!

Take care Maggielee and I hope you feel brighter today.

[misty14]

Hi row an

Lupus is a really hard illness to live with as it spoils so much!. Hope you feel a little better today, specially tough as you'd had some better days!. Take care. X

[Rubylu in reply to misty14]

Thank you Misty, I'm up and awake. I am as wobbly as hell and my ataxia is quite pronounced, but I don't feel as I'll as yesterday, so fingers crossed that the day will improve. I'm in less pain, so I'm hopeful!

It's cooler and less sunny here, so I hope everyone has a better day if they have the same today too. 🌷

[misty14 in reply to Rubylu]

Fingers crossed for you Rowan. Take care. X

[skylark15 in reply to Rubylu]

I'm sorry you have had such a rotten couple of days with the sunny weather, Rowan. What caused the electric shocks in your feet, I wonder? I have erythromelagia and mine feel like that sometimes too. I hope you have a better day today.

Tess

[Rubylu in reply to skylark15]

Oh, I have a demyelination disorder which came before Lupus. So I have neuropathic pain and neurological deficits associated with that. Saying that, I am under two professors for that (my local one and the specialist centre one) and it may be that it's an unusual presentation of lupus. To be honest I don't really separate them any more cos they blur into one anyway.

I have been getting repeated subluxation of some bones in that foot since a fall at the beginning of March, and my knee is exquisitely tender and swollen and didn't respond to steroids like my other joints did recently, so it could be any one of those kicking off! (I have just booked an urgent same day apt with a GP, as my knee is huge and so painful that I thought after the w/e do, that I shouldn't wait until May's rheumatology apt!).

I feel better in myself since getting up though, so I'm happy about that.

I hope you're ok (that's relative of course 😂, I know that no one on this forum is truly ok!). X

[skylark15]

Oh Rowan, I feel for you. Let us know what the GP has to say.

Tess🍀🍀🍀😘

[Rubylu]

Seen GP this morning- very proactive I must say. Currently now at local hospital waiting for knee x-ray as a baseline investigation, but he's referring me to orthopaedic knee assessment team for a full work up, which will assess for AVN too. Apparently that'll include autoimmune inflammatory, mechanical and vascular assessment. They'll do an MRI or ct scan depending on their suspicions too, so the ball is rolling anyway. Sat waiting for x-ray, which GP warned might not show much unless their is bones damage going on. He said MRI will be better but the pathway is via the knee assessment team.

I don't know how long that will take but hopefully not too long as it really hurts!

At least I've stopped procrastinating about getting it checked, and GP was surprised how swollen it was and that I'd not pitched up sooner! I guess we all get so used to joint pain that it's tricky to know when to make more noise!

I'm just sat twiddling my fingers for a while now! ☢️ 😐

[maggielee]

Gosh you are really going through the mill today, I hope you do get an MRI scan, etc. as that is much better than an x-ray to see problems, sorry your in so much pain and glad you are being seen by doctors..

I dragged myself out of bed this morning and was yawning at work (only my boss knows about my lupus, colleagues get to focus on folks illnesses and are not very discreet, lots of how are you feeling etc.)... few cups of caffeine to pep up (I am a decaf girl, except when I am dragging like this. So my day much better than yours, also cloudy yahhh...taking some time off for Easter and maybe I can get more rest till this tiredness passes. Usual a day or so of rest helps, I am on a seesaw of up and down, have energy then not.

I am collecting my daughter for college, though she will be studying for exams we are both looking forward to the visit, she has already kindly offered to make me breakfast in bed if I am tired and some gardening (which is really hard to get to)...I don't want her to worry either, so best foot forward I hope... will have to look up some of your ailments which I am not familiar with..

feel better soon...ML

[Rubylu in reply to maggielee]

Awe thanks. I've had a cronky k Ed for ages and was hoping the steroids would help, but it seems like something else is causing it, so am relieved they'll look into it.

I slept when I got home and now feel premier than last few days. Just two days of work to get through and another rest, so I'm glad to be over the w/e blip!

My daughter is home too, so I appreciate your excitement. Enjoy your daughter's visit.

R x

[Wendy39]

I hope you don't mind me asking, but I'm sun sensitive. SCLE, the same as Maggielee. So the sun is my enemy. But this seems like a very severe reaction. Is that normal for you to be hit so quickly and in such a bad way? Has your sun sensitivity got worse? Best wishes. Wendy x

[Rubylu in reply to Wendy39]

I'd had a headache for three days so I may have been heading for a bit of a doo anyway. I can get a bit of a rash even with f50 in the winter on a cloudy day if I'm out long enough! I generally just get on with things, although a hot sunny day will easily wipe me out. I have demyelination issues, so I can get easily overwhelmed on a hot day. I was walking into the sun, which was hotter and brighter than I anticipated and I think I was caught out a bit. I'm loads better now though. I can usually manage it with little doses, hats and good clothing, but I had a sl t on and no hat! (I thought I'd get away with it as it was early in the day) My fault really.

[Wendy39 in reply to Rubylu]

Gosh, you are very sensitive! I have to cover up. Usually on my face (with big sun glasses) and my hands exposed. But with a hat and re applying my Ego Sun Sense to my face, I recently managed a lovely 3 mile Sunday walk with my family. I slept for 2 hours afterwards but it was uplifting to get out. Your post just made me wonder if some people's sun sensitivity progressed. Although lupus isn't officially a progressive disease it does seem to be for some people. As an aside, I was found to have a syrinx cyst on my spinal cord following an MRI last May. Although when I saw the neurosurgeon he said he thought it was an area of inflammation but not big enough to be considered a syrinx. But there were actually 2 areas of inflammation. I am currently waiting for the results of a 2nd MRI to find out if they are increasing in size however both Rheumy and neurosurgeon have told me that it is an incidental finding and I have no neurological symptoms. But it is one if the reasons why I am now seeing a lupus expert privately, as I have other CNS symptoms with my lupus and need to know from an expert if my lupus and this inflammation of my spinal cord are linked. There aren't many people here with these issues. I hope you have a better day today. Wendy

[Rubylu in reply to Wendy39]

My husband calls me a sensitive flower! Although to see me you'd think I'm robust, more like a weed!😂

I am over the 'all gone' bit and managed work yesterday. A colleague mentioned how tired I looked and the sun burn (malar rash!) in my face.

I was off sick for five months last year with a big flare that got out of hand in June. I am pretty sure the preceding few weeks of glorious weather contributed, so I am now on sun alert after this w/e! I have never blistered but rash appearance and increase joint discomfort, fatigue and muscle symptoms are not unusual when it is very sunny.

It'll be interesting to know if you do actually have a syrinx cyst or something inflammatory. Either way, I imagine they give some unwanted and troublesome symptoms.

It's easy to blame everything on lupus, cos frankly it seems responsible for so many problems, but I guess we're susceptible to other stuff too! I hope your appointment gives you some clear answers. I always feel I can cope better when I understand the cause and effect involved in my signs and symptoms.

On a brighter note, I improved quite quickly after Sunday's washout, and feel well enough for work. Thanks for you and everyone listening while I moaned my way through my blip. I did appreciate having somewhere to say I was feeling so grotty, get some helpful advice and tips and some lovely, lovely support. It stopped the doldrums that come with a bad day.thank you

[Loopydroopy]

Wow, I didn't realize some could be so sensitive. I do start getting a hive like effect even through the car window. I've become so paranoid about the sun, it's so intense here in Georgia and the heat OMGosh!!! I've been wearing 50 sunblock but now I see that may not be enough. Thank you for such great info ladies!!!

Teresa