Never ending lupus!!

[Sara_A]

I’ve currently been off work for just over a week now following a flare after being abroad in the sun (never had any problem with the sun before!)

I keep thinking I will be able to go back to work then another problem or symptom arises like lupus does and that’s it again! I was pretty much exhausted and drained and in bed for 5 days and got up yesterday as had no choice but to look after the kids (family had helped over those 5 days thankfully).

I only work 2 days a wk but was hoping to go back tomorrow tho prob not quite ready but yesterday both my hands became painful and hard to use again. ( this has happened before and I’ve had to wear a sling to rest it for couple days but can’t really do that with both!!)

It just feels like u get past one thing and another thing raises its head!

All I want to do is sleep I feel so tired 😥

I’m seeing a gp today who I usually chose not to see but she’s always the only one left with apps!! ( I wonder why!!) she always brings up the depression card!!! Aarggghhh!

Anyway does anyone else get this pain over the top of both hands at same time making it hard to grip or lift anything and has weakness in both hands??

Sorry for rambling just tired☹️

[Serser]

Hi Sara,

As you know we’re in a similar situation. I’ve flared since returning from a holiday in Portugal (where I spent most of the time either inside reading my book or in a disguise akin to an Edwardian lady having a day at the beach!)

I don’t get pain across my hands but I do get general joint pain especially in knee, hip, arm and front of ankles??

I also get a pins and needles sensation down my right arm.

I think everyone’s symptoms are as unique as the individuals themselves sometimes. I know I have odd quirky pains and sensations!!

I really hope you start to feel better soon. It helps so much being able to come on here and rant to those who you know truly ‘get it’.

The irony with trying to get help from the gp’s is that you almost need to have the stamina of a well person to be able to deal with them in the first place! I’m dreading arranging a follow on hydroxychloroquine prescription arranged!! I keep looking at my ever depleating supply and thinking I’ve got to limbo up to get it sorted!! In truth I also just want to sleep!

Take care chuck xx

[Sara_A in reply to Serser]

It should be on ur clinic letter for the gp to carry it on shouldn’t it?? So hopefully u shouldn’t have to do too much explaining 😬😬

Seeing the gp today was a waste of 15 mins of my life! She says that she wasn’t prepared to do anything and that I need to see the rheumatologist, yes I know that but that’s not gonna be tomorrow is it!!!

She said there’s no point giving u pain relief, ( I could have flapped her and said do u need any pain relief!!) ha sorry!! I didn’t even bother telling her I took oromorph to top up my slow release last night cos of the pain, what’s the point I don’t think she thinks there’s anything wrong with me ( she’s not my usual gp just the only one who has any last min apps now I know why!!)

Anyway will just crack on and alternate slinging my arms to rest my hands and joints and cope alone! Til I see consultant.

Her usual trick is to lean back in her chair and say I think ur depressed....at least for her sake she didn’t come out with that one today! My 2 little ones ran out the consulting room and I managed to escape her anyway so well done kids!

Take care hope u get sorted x

[Serser in reply to Sara_A]

I had loads of hassle regarding the shared prescribing protocol, fingers crossed it will be okay, but to be honest even the simplest request usually takes at least a day to sort out!

Thank goodness for kids eh!! It’s not often you’ll hear me saying that in the middle of the summer holidays!

I hope you start to feel better very soon xx

[Lilrosie1]

Yes since may i have woken up with my wrist hands and feet in pain and numb with flares. My joints hurt more and body and i get fever. I cant do the sun any more and ive broken out bad. The dermatologist says it my picking but not true. I have which rocks andd eggs or seems lime eggs pop out of my neck as well as white plastic stuff and brown specks. Im about to loose my mind

[Stina232323]

Hi, I can completely relate to the pain you talk about in your hands. I get the same. It starts in my hands and works its way up to my shoulders over about 2-3 days and then remains for anywhere from 1-2 weeks. I have no strength in my hands to grip or open things with. I also get the shakes and have no ability to do any sort of fine work with my fingers. The harder I try, the more I shake and it usually ends up with whatever I am working on flying out of my hands like you would see in a cartoon! Typing on phone or computer is all but impossible and holding anything made of glass or important to me is a big gamble. I hope you feel better soon and don’t get too down. There are many of us who understand exactly what you are going through!

[leslieliesel]

My symptoms are like yours...the hydroxchloraquin(sp) actually seemed to help with my hands and other small joint burn pain....right now I am barely able to sit here..I have to go lay down now...I hate it...and forget the sun,,,that is how I was DX'd HORRIBLE rash from the sun.....I understand Xx

[Lisalou19]

I’ve stsrted experiencing this hand problem since January,I really hit rock bottom. I thought I had Ms. I get very red hands with it, and blotchy palms.

Some days I drop things 😔 but the doctor I’m currently under thinks there can’t be any nerve involvement, I beg to differ but battling some doctors is like trying to communicate with King Kong (it’s never going to happen) I also get swelling in the fingers . One of my worst symptoms not being able to use my hands properly

X