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to be scared? :(

(16 Posts)
Icantstopeatinglol Tue 14-May-13 22:21:19

I've been diagnosed with psoriatic arthritis recently and feel like everyday a new joint is starting to hurt! I'm so scared of the future at the minute as I have my gorgeous little dc to look after and I hate the thought of not being able to do everything with them.
Think I'm just having a bad night as I'm in so much pain. I start medication on Thursday so trying to stay positive but I'm so scared and frustrated...and angry!!
AIBU to be pissed off?? I know there's lots of people worse off I really do but cant help being upset tonight. I'm only mid 30s sad

Cherriesarelovely Tue 14-May-13 22:24:51

Poor you, it is really scarey when you become ill and your future seems worrying and uncertain. I totally understand. I will pm you.

drivingmisspotty Tue 14-May-13 22:27:46

Hang in there. YANBU to be pissed off and scared but you have a diagnosis now and can get treatment. Also see if you can get refered to a pain management expert so you can find other tricks apart from drugs for managing pain.

mikkii Tue 14-May-13 22:28:48

My mum developed psoriatic arthritis when my brother was born 40 years ago. She was 32 at the time. I'm not going to tell you it will be easy, because it won't, but my mum worked full time until her mid 50's and still helps me by looking after her GC.

In addition, there are different treatments for the psoriasis too, so try to find one or a combination that help you.

My mum's condition went through various phases during my childhood, but we didn't miss out as a result.

Make sure your gp refers you to the relevant pain clinic and arthritis clinics. Ask if there are any support groups.

LST Tue 14-May-13 22:29:14

Don't be scared. No one is going to let you suffer in pain. There are so so many medications now. steroid injections are amazing. Your consultant will make decisions based on how you feel. They won't medicate you unless you agree with everything that say.

I have rheumatoid arthritis. I have had iy since I was about 14. it got so bad when I was 18 I was hospitalised. But now at 22 I have a beautiful Ds and we are trying for dc2. Albeit the dcs are ealier than planned but I too don't know how long I will be 'fit' for.

I try not let it get to me too much. The main issue is people jot understanding how poorly you can feel. At 22 everone thinks I should be fighting fit but it's not the case all the time.

Don't worry op. The docs will sort you.

Kormachameleon Tue 14-May-13 22:34:56

Message withdrawn at poster's request.

Icantstopeatinglol Tue 14-May-13 22:36:53

Thanks for the replies, I'm usually quite positive and I'm trying to stay fit for my dc but tonight I just feel like I'm getting worse everyday and my efforts are useless. I know they're not and everything helps but still feel a bit down about it all.
It's upsetting that when my dc just touch my hands and feet they hurt so much and I try not to show it cos I don't want to upset them.
Nights seem to be worse at the minute so fingers crossed I wake up feeling better!
You're all stars, thank you for the support x

Icantstopeatinglol Tue 14-May-13 22:43:32

Hi korma, yea starting dmards in a few days. I really hope they work cos its getting quite bad now and I too think I have a high pain threshold but this is bad sad
I feel for you being diagnosed at 30, it's shit isn't it! The only person I feel angry at is me which is hard but I feel like my body has let me down and if it wasn't for these drugs I'm hoping will work I'd be stuffed!
It's so hard with 2 little dc. I was panicking earlier cos thought dd was coming down with something and I honestly was thinking 'how will I cope?'
God, korma sounds like you've been through the mill! Big hugs and here's for more research and clinical breakthroughs!! X

Kormachameleon Tue 14-May-13 22:50:44

Message withdrawn at poster's request.

Icantstopeatinglol Tue 14-May-13 23:06:22

Thanks korma, yes we will be fine and I will get those dancing shoes on if its the last thing I do! (Although they'll have to be extra wide for my fat feet ha!).
Yea I've heard it can take upto 3months to feel the benefits. I start sulfasalazine on Thursday, how have you been feeling on it? I'm taking etodolac every night too for the inflammation too.
I'm trying not to do too much but then if I don't do much I seize up! Can't win can we!
Good luck, let me know how you're getting on as it will be interesting to see if it works for us both xxx

montysma1 Tue 14-May-13 23:19:43

This happened to me too. From having mild patches of occasional dry elbow skin for years, that I didnt even know was psoriasis, I had a baby last january and by march it literally covered my whole body, even my finger tips (that was actually the worst). BY april, overnight it seemed, I developed a painful knee, so bad that that i thought I had somhow broken somrthing without knowing it. Then it kicked off in the other knee and thats the first time anyone ever mentioned that pregnancy induced psorriasis was quite common as was the knock on arthritis. The pain and lameness was horrendous. the skin was horrendous and as it was everywhere, creams were pretty pointless.

On line forums all spoke about sun beds helping ( and i know a million medics will tell me its the wrong type of UV to help psoriasis and that its bad for you, but I was in dire straits). I sunbedded 6 times over 2 weeks, and I can honestly say that the skin began to clear from the first visit. It was gone by the time I got my dermatology referal. It actually felt miraculous!

The knees were still bad, and I was referred to rheumatology. The first visit showed no current joint damage (I can hardly credit the pain I was in for there to be no damage). 6 months on, with the skin still clear, I have been told that I have "the good kind" of arthritis, which probably wont progress to damage and it seemed to start getting better a few weeks after the skin did. I have dropped my antiinflam/pain killer to one per day and am back to running 25 miles a week. Just left with a little stiffness and I couldnt do anything weight bearing on bent legs , like lunges or squats. I asked if there was any chance that it would just vanish as quickly as it had appeared given that the skin is clear, was told it might, but then again might not as they just dont undrstand the disease process well enough. It has never appeared anywhere other than my knees.

I have also read with interest about the possible Vit D /sunshine connection. Funnily, this march (ie exactly a year on from when it all started), I noticed some patches appearing and immediately went for another 3 sunbed sessions. As before, it vanished almost immediately. I am now wondering if it was not pregnancy related but that it was infact after a long dark winter, 5 years of no foreign holiday and several crap summers on the trot and feeling a bit fat and keeping pretty covered up, ie, the Vit D thing. It just seems funny that this year it "tried" to kick off at exactly the same point in the year which last year, just happened to be immediately post pregnancy ,so pregnancy got the blame. Who knows?

Anyway, just wanted to post a positive outcome to this illness. I was probably never as bad as you, but it felt pretty dam severe to me, and one way and another , I am almost back to normal, so there is hope.

Icantstopeatinglol Tue 14-May-13 23:28:52

Thanks montysma, yea I've used the sunbeds for my psoriasis and it helps mine too. I'm on the waiting list for light therapy at the hospital but I think I just need to move abroad or something (I'm sure that would help!) smileI've had psoriasis since I was a child but only recently got psoriatic arthritis, glad I didn't get it any earlier so there's always a silver lining and all that!
I think my arthritis started after a bout of 'slapped cheek' syndrome which affects the joints in adults. I got over that but fairly quickly started getting random pains again which has developed into arthritis.
Glad you're getting on top of yours, it's lovely to hear a positive story. I'm sure in 6 months time ill be saying similar things xx

Kormachameleon Tue 14-May-13 23:33:22

Message withdrawn at poster's request.

Icantstopeatinglol Tue 14-May-13 23:36:58

Thanks korma, will do. I just want to get started in them cos I know it's going to take a while to take effect. I really hope yours start helping soon cos it will be amazing for you and something to aim towards for me.
Pm me if you need anything also, thank you smile

Kormachameleon Tue 14-May-13 23:40:58

Message withdrawn at poster's request.

Icantstopeatinglol Wed 15-May-13 21:00:50

Ah thank you, I've lurked on mn for years but not really needed to say much til now and you've all been lovely which is helping.
I'm going to gps tomorrow as he's apparently leaving the sulfasalazine and some instructions for me??
I'll let you know how I get on smile

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