Is it just lupus or is there something else too? Anyone else got lupus plus an arthritis type condition....

[Sara_A]

Hi All,

I have sle and aps and I'm really struggling with joint pain and stiffness, I've had it all for approx 20 yrs am now 41 yrs old. I am just really struggling with joint pain and stiffness. This has always been my major problem along with horrendous fatigue but I'm just wondering if there is something other than sle going on for me to be so bad with my joints. I dont get particularly swollen or anything just my wrists sometimes and my knuckles get puffy.

I have always suffered massively when its raining and can tell in the night when its raining, like last night my elbow was so painful and stiff all night.

When this all started for me at age 21yrs my fingers were painful and I couldn't move my hands and fingers and it started when it was damp and the rheum back then thought it was RA but I guess back then I was rheum factor neg and it went on for yrs and yrs as it does and finally got diagnosis of lupus and aps.

Could it just be the lupus or could it be something on top?? Anyone else have experience of this?

I've been in bed the last 4 days and a couple last wk as my hips are very painful and I cant stand or walk much I usually have injections into my hip bursa both sides and rang gp to say I was bedridden with it and felt really quite unwell too and they said they cant do injections at the moment but in a month they could so if I could just wait til then!! I know its because of covid but I'm shielding anyway and my consultant would do it its just I'd have to travel over an hr to him. I understand but I think they should be looking at things on an individual basis. During covid my rheum has increased my mtx and my steroids so what's the big deal on injecting some steroid locally so that I can get about, look after my kids, get up the stairs etc! They shouldn't let me suffer like this for another month.

I am on millions of meds already mtx, daily pred for over 10yrs, twice daily zomorph for pain with top up of morphine when needed, plus more for all the other delightful issues that lupus and aps brings!!

Thanks x

[DJK99]

Hi Sara - So sorry you are feeling like this - yes, totally empathise. I'm fed up with all this too... Have had similar stuff to you, although I live alone and doesn't impact on anyone else.

Changes in weather definitely don't help, especially those storms seemed to have an effect and I posted a couple of times the research on how lupus can flare during changes in pressure and adverse weather.

Had an MRI on my cervical spine a few years back which showed "florid"(?) damage to joints and facet something or others and general deterioration and then last year on my whole spin and hips as the latter and lower back had been so bad for so long, which showed same but they put it down to "osteoarthritis, wear and tear, widespread joint disease, synovitis, althralgia, myalgia" etc etc.

I try and stay active every day (as I always have since very young) and do stretching even when it's quite hard - although I must admit I have read that if you are flaring and inflamed not to push yourself as will make it worse. That would mean I do nothing every single day - which I know would mean I'd seize up altogether, and my fatigue would just get worse too, not to mention my mental health!

Lupus UK have some great information leaflets to download on their website - and have just posted an update on the website I noticed via their Facebook page, and this update also states we need to stay as safely active as is relevant for each of our abilities etc... plus keeping healthy in all other obvious ways ie nutritionally, mentally, rest etc. I totally get it though - you sound like you are stuck in bed and can barely get to the bathroom and back, let alone do any gentle exercises - if only you could get some advice on this from your docs?

I think you could ask for some MRI's and Ultrasounds maybe once they start again - just to see if there is anything else going on. You are on usual meds (methotrexate) as I am (or was when he put me on steroids/pred when flaring badly but cannot tolerate it) so maybe you could discuss some other type? Hope you are "seeing" them again soon - or could put another call in to get some pain killers such as codiene-type or similar? As you say, no fair to be going through all this. My gut isn't happy so I'm staying off more meds but I keep reaching for them when it gets too bad.

I do hope you get some more support - and hope the above was a little helpful. Always good to know you're not alone... and you really aren't. Take care x

[Sara_A in reply to DJK99]

I'm on mtx 20mgs just increased about 4 wks ago from 15mgs, I'm on 10mgs pred daily usually on 5mgs all the time as maintenance but i was getting so stiff on a morning my partner was having to lift me out of bed as i just couldn't move so i take a but extra on an aft so that i dont cease up in the night and early hrs.

I take 30mgs zomorph am and pm and increase it accordingly or decrease it if I'm exceptionally good! I have morphine tablets for any top ups needed as I cant take NSAIDS as I have gastritis probably from all the flipping drugs!!

When I'm flaring I usually have to increase my pred to 20- 30mgs daily, when I spoke to gp yesterday she said will get some bloods done monday see what's going on and then maybe have to increase, she said I'd know more about that than her!! Dont really see why I can increase that but not have a local hip inj but hey who am I to argue!! I'll just load myself with 30mgs of systemic steroids daily instead?!!

Am back to bed now after my partner had to pop out for my meds so I had to struggle round the kitchen to make the kids a sandwich and ended up crying!! Feel so useless what's the point in being here when I cant do anything like the everyday stuff! I'm not depressed or suicidal or anything like that but I just feel seriously what life is this sometimes x

[DJK99 in reply to Sara_A]

Oh Sara.. I know(well not that I have a family, sadly... but can try and imagine how dreadful you feel about everything). My life has completely changed(quite apart from the virus stuff) in past 5years... unrecognisable. And I've been asking myself the same question even more, more recently ie what is the point... you have quite a few points by the sound of things.. but you cannot be the person you were for them right now. So so sorry.

I had therapy last year and the year before that and it kinda helped... maybe you could have some family therapy too, to help you all get together and as ok as possible about it all. I was lucky I had it through work as I was in Social Work and they have to offer it to try and keep folks from falling apart in the role. I ended up with the "it is was it is" statement and I did all I could to help me in the end ie meds etc, gave up work, moved to smaller place, gave up cat and all sorts. I take it you aren't working right now.

You are seriously flaring right now and those bloods will hopefully reveal some kind of understanding for your clinicians to improve your current state.Drink lots of water all day (I always say that) as this can help...2 litres.. and just keep asking for help from your clinicians until things are under control - because they truly obviously aren't right now.

Sending gentle hugs, please let us know how you get on and what the bloods show/what they suggest to help. D x

[Sara_A in reply to DJK99]

No I'm shielding atm have been since 19th march, I'm a practice nurse in a gp surgery I only work 12 hrs a wk now due to health just cannot manage anymore than that. I do 10-4pm 2 days a wk work are really supportive and it was actually them that suggested I start work later as I used to start at 8am but I was so stiff etc that it was so awful for me. As it takes me a few hrs to get going on a morning they suggested I start a bit later and its really helped. I also have regular 15 minute catch up slots in my clinics so I see 3 people then I have 15 mins to catch up! Its really helped me to continue to work.

U are right, obviously, I do have a lot of points to keep going but when u are either soo fatigued or in too much pain and confined to bed to look after ur young family (my kids are only 4 and 7yrs) it's so hard to see further than that sometimes. I have had some horrendous fatigue this past few wks and at times i couldn't see past it when i was laid in bed at times unable to even get in the shower or climb the stairs. And u do think if this is how it is everyday why and what is the point it's no existence at all.

God that actually sounds so awful to read! I wish that other people knew that's how it feels and that's what we go through tho

I've kind of been in this flare for last 4.5 yrs since birth of my daughter really and the mtx is the 3rd med tried azathioprine and mycophenolate didn't work out for various reasons so this is the 3rd and hopefully the one!! My steroids go up about 4 times a yr for a 'flare up' and take quite sometime to reduce back down from 30mgs to 5mgs so I'm pretty much up and down all the time.

Who knows!! I think I'll ask rheum to look at my RF again as I think it was checked 21 yrs ago and I assume it was negative but not entirely sure?. It could just b the lupus and aps and that I suffer with my joints badly and that's it

Thanks for ur replies and support x

[Nvrenfhorses2]

I’m so sorry to hear your suffering in pain. I too had horrible hip pain. I was mounting my horse she took a step forward and I pulled a muscle in my right hip. The pain was so bad I couldn’t breath. But then the pain spread to both hips and I couldn’t cross or open my legs for two months! It was almost extreme reaction which shocked me. I also have bilateral wrist and hand pain. My elbow too. I have lots of numbness in hands and tingling when I get upset in my body. It’s very disturbing and disappointing that we don’t have more doctor

support. I can relate to what you’re going through. I have many other issues but that’s enough🙄 Unfortunately, and fortunately you are not alone in this!💗

[caramel7]

Hi Sara was just reading about your dilemma.. so sorry. I agree with some of the others, if at all possible keep active. I know you need the steroids but in the long range of things they wreak havoc on your joints! Please if at all possible make a list of questions and sit down with your rhemy and discuss your best options, of course that will take great effort! Wishing you the best... prayers up!

[Sara_A]

Hi, thanks for ur reply. In what way do the steroids cause problems to the actual joints?? I wasn't aware that they caused problems to the joints themselves??

B4 the lockdown I was walking daily with my dog and was becoming very active again with walking but have been less so with the restrictions but I have been out for a few walks since the gov have said we can go out for some walks so when I have been physically able to I have done for approx 40 mins