Frustrating !

[Debbiemay]

So for the past week or so my left elbow, wrist have been really aching which is not great when I have a desk job. I happened to mention it to my husband last night saying someone in work had mentioned carpal tunnel but I think it's just my Lupus. Well.... he had a bit of a pop at me saying that I can't blame all my aches and pains on Lupus and that it was more than likely something else.

Even when I said these aches where the main reason I was referred to Rheumatologist he still made an argument for it being something else rather than Lupus.

I'm finding it so hard at the moment and if I'm told to 'cheer up' or 'you just have to get on with it' one more time I swear I'm going to scream. It's so difficult living day to day with something like this but a whole lot worse when everyone thinks your just 'moaning' or making it up

Anyone else going or gone through similar ignorance from family/friends/work colleagues please tell me it gets better?

[Wendy39]

Hello. I know how you feel. I was diagnosed 10 months ago with subacute cutaneous lupus, I also have background hyper mobility and border line anaemia. Plus I have osteoarthritis in my hip and mild tendonitis in both my wrists. My rheumatologist hasn't said the arthritis and tendonitis are linked to my lupus but my gut feeling is that they are. There appears to be no other explanation and I have only just turned 40. I am not a typist / secretary / gamer etc so why tendonitis? My understanding is that it is an inflammation in the tendons and lupus causes inflammation, right? The last 10 months have been a roller coaster of emotions and I have a feeling that it will continue. And you are right, people's ignorance of the condition and disbelief is infuriating! It's bad enough having a chronic condition and dealing with symptoms every day and all the medical appointments etc! Good luck to you. I hope you get some answers re your wrists soon. Wendy

[SjogiBear]

Oh yes! All you have written sounds so familiar but I'm not sure what I can say that would be of any help. I have had lupus/primary Sjogrens or whatever they call it at various times of my life since I was in my teens and I'm now just shy of 50 (goodness that looks old to see it written down!). This disease has haunted my entire adult life causing various issues all the way. I've never even been able to settle to a career or even a proper job for any length of time either due to physical or psychological issues, all of which I believe are interconnected. Even my husband is fed up with me saying that this hurts or that aches or that I don't feel well. I just don't feel that I'm believed by anyone - I had to take myself off to A&E when everyone thought I was just overreacting again to find out that I had very severe anaemia, an abnormal ECG and pericarditis. I hurt so much of the time and worry terribly that it's not just lupus. My parents too are cold towards me with my issues and think that all I need are some more vitamins and to get myself a proper job. There doesn't feel like there's much support out there for these kinds of 'unknown' diseases. Thank goodness for forums like this where at least we can find out that we are not alone in all this and that it's not just us going mad!

[Mainshah]

Hay don't really nw where to start I'm 23 was dignosed just over a year ago, pregnent nw after a miscarrage ad then nowing i had lupus, one point to make clear no one understands anything untill they have deasese themself, not wishing it upon anyone coz it's it's not a pleasant illness to have. I bin getting elbow ake ad rist ake in my left arm to bin afew days nw taking pill relief witch don't help with the pain, pregnency not treating me well eather but then again no one understands , I personally don't tell anyone if I'm in pain I take pain killers and nock out and sooner or later someone does ask on the house what's the matter. Hope u get well soon

[JoJo0405]

Hi I'm 38 and was diagnosed with Hughes Syndrome about 12 yrs ago but my consultant thinks that I've had it since my mid teens.

I'm in the process of investigating whether I have Lupus as well. I ache all the time, same days better than others.

I agree, unless you've got or been through what we're going through, no one understands. As I'm typing this my fingers, wrists and shoulders are really hurting me.

Thank goodness we're on this forum to help and support each other.

Anyway, hope things settle down for you.

Take care.

Jo x

[Purpletop]

Ask your husband to try and visualise being in pain with his elbow 24/7. Then ask him to add to that another specific pain you have and then to tell you how he believes he'd work with that. Remind him last time he complained about a particular issue (whether a cold, or a headache, or a minor bruising) and ask him to imagine how it would be to have that pain/feeling but magnified 10 times. Don't joke about it but get him to seriously imagine it while you're there. Then say to him that until he is in the same pain every day and soldiers on better than you can at the moment, only then he can give you off hand suggestions about how you can cope. Until then tell him to be happy that you're not worse and to be thankful that you're still able to be there for him when he wants his dinner.

It is easy for others to dismiss our pain until they put themselves in our shoes, which they are reluctant to anyway. Visualising being in pain brings it home that it isn't such a fun thing to be resolved with some vitamins, which is why I tend to not say 'I'm in pain' but say 'I'm as well as you could be when you've just hit your big toe against the corner of the door times 20" or something similar.

[Debbiemay]

Thanks Everyone,

I think I may have had Lupus a lot longer, when I look back on life. I'm 51 had a triple pelvic osteotomy at 31 and have since had 2 x hip replacements. Was diagnosed with Osteoarthritis in my late 20s so I think medically all my GP's have taken the easy option of blaming my symptoms on this, hormones and depression generally.

Mum had RA and was in a wheelchair by the age of 55 and my eldest daughter has Crohn's which is also Auto Immune related so looks like there is a definite pattern biologically?

I was referred to Rheumatologist in May this year and she said I have Hypermobility, Fibromyalgia and abnormal bone structure in both knees. She did a wide range of tests and suspected RA or Psoriatic Arthritis anyhow when I went back to see her in June Lupus had shown up on the tests, she has said she can't put me on the steroids she would like to use due to the fact I have a leg ulcer that is proving very difficult to heal but has prescribed Hydroxychloroquine, Celebrex and Co-Proxamol in the interim. I'm hoping things will get better when she can prescribe a more effective drug ? fingers crossed LOL

In the interim, thank god I've found this website to keep me a little sane, thanks everyone who has replied. I hope everyone manages a good day today xxx