Psoriatic arthritis newbie and struggling

[Hels1989]

Hi all. I'm 28 years old and I live in Manchester. I am still having tests to be diagnosed with psoriatic arthritis even though all the docs know that's what I have. (Also has psoriasis for as long as I can remember on my scalp). I don't know what I'm asking for, maybe just someone to make me feel like my life isn't over? I started with symptoms in April this year and have been pretty much down and depressed since. I'm affected in my knees (prominently my right knee) and my ankles (mostly my Achilles' tendons). I have 2 children (son 6 and daughter 4) and I quite literally feel like I will never come to terms with this. I struggle walking and even the school run is a struggle for me and that is only from the car to the school yard and back. I feel like I'm letting my children down. Also my partner and I were lucky enough to get a decent tax rebate and want to surprise the children and take them to Disneyland Paris next year. But I can't book it yet because all I can think is 'am I even going to be able to walk?!' Also keep thinking shall I wait till I'm started on some treatment first so I know where I am a bit better? (Currently only taking naproxen and cocodamol). Myself and my children have been through a horrendous 18 months and taking them on this holiday and seeing their faces when they find out where we are going is honestly the best thing I feel I can give them at the moment. But I just can't look forward to booking it or going as I worry how my disease will affect me. I feel very alone ( although I do have some good family support) in this and my thoughts. My mum had inflammatory arthritis (she died 10 years ago at age 39) but not 100% which type and as you can imagine she's the one person I'd love to speak to right now but I can't. I just need some friendly people. I know things won't ever be the same again but right now, as I said, I feel my life is over. I just want someone to tell me that's not the case and that I will at least be able to enjoy my holiday next year for my children's sakes if nothing else. Thankyou in advance. Helen xxx

[Superfloozie]

Hi Hels1989, I'm so sorry you're having a rough time, it can be very demoralising when you are first diagnosed or in the middle of diagnosis. I was diagnosed at 34 which is now 18 years ago! Scary how time goes. I have PSA as well although no psoriasis. Firstly one of the reasons you're feeling so rough is that you're not on any proper drugs yet for your disease so you are in an uncontrolled state, when you start your new drug regime then it should give you some relief. Realistically it will start with methotrexate and although some people get side effects it can be really good in helping the joints. It may well be worth waiting to book such a fabulous holiday until you are a little more stable and have your drugs in place. You didn't choose this but now you need to be kinder to yourself and your family I'm sure will love and support you through this. It's tough, it took me a long time before I admitted that I couldn't do everything anymore, some days it still pees me off that I can't but I've learnt a lot about how to cope and have asked for help in all the places its available! Some of the newer drugs can make an enormous difference, some folk end up back to relative normality so it's important you start this as soon as possible, I assume the hold up is confirmed diagnosis although that shouldn't be preventing you from access to drugs.

Anyway good luck, keep us posted and don't beat yourself up! It will get better x

[Hels1989 in reply to Superfloozie]

Thankyou Hun, I think the feeling of being completely out of control is such a big part In how I am feeling definitely. To be honest I've lived with the psoriasis for approx and 10 years and although a bit of a nuisance it doesn't bother me much, it's not like the psoriatic arthritis which stops me getting on with my life! But I know some peoples psoriasis is a lot worse.

Yes the rheumatologist said once my scans are back I will have a steroid shot and discuss methotrexate which is a little scary but I'm in the frame of mind that I will try anything if it will work!

I am defiantly waiting to book our holiday. As I said to someone else on here, I'm way too much of an anxious person to go book it on a whim that I will be fine at the time. I'm just setting it as a goal for when I do start to feel better and a little more on track I suppose.

I have found it easier to accept as my mum had it very similarly so I kind of thought "well it makes sense" but that doesn't stop me crying most nights thinking "after everything I have been through In my 28 years what did I do to deserve to this too!!".

Thankyou so very much for your kind words and support it means so very much and helps me feel not so much alone. 😊 xxx

[Superfloozie in reply to Hels1989]

I know it's so miserable! I went through denial for a long time and tried to ignore it and work 50 hour weeks and be sociable! Didn't work😜.. once you get on some proper medication it really will help you, but you do need to help yourself as well. Limit any drinking, exercise, good diet, pace yourself at home/work. I still have a really good cry and get so frustrated I ask why me! Such a shame your mum is no longer with you must be so sad to want to talk to her about it all but you have your family, and the forum for support! Everyone on here is in the same boat and have all felt how you feel now.

Steroid shots are like happy pills, it will make you feel so much better whilst the methotrexate kicks in, and there are other options if those don't work. i know you probably don't want to yet but I would recommend counselling at some point as it helps you to deal with the long term consequences and how you approach the disease. Be shameless and take all help offered and seek out more help. It's so important that you deal with the emotional side of diagnosis as that will also make you feel more in control of your own destiny.

I so feel for you, big hugs! X

[Hels1989 in reply to Superfloozie]

Thankyou Hun. I only work part time due to being a single parent (I have a partner but it's early days yet so he doesn't live with us) but I work in retail so being on my feet is so so difficult when the disease is affecting my knees and ankles! I have been provided a chair (I work on the customer service desk) but as we all know in retail that's not much help as I am constantly up and down. I so so am looking forward to that 'happy pill' haha. I do think I'm gonna try to have some councilling Hun. Yeah my mum died of a really rare cancer at age 39 which was 10 years ago now. The poor woman endured all of this then ended up with aggressive terminal cancer, now that is defo unlucky. And turns out as much as anyone always needs their mum, I need her most right now because she will know EXACTLY how I am feeling.

Thankyou for you support Hun xx

[Radley01]

You sound just like i was ....i pulled the bannister out of the wall one night just trying to get to bed..couldnt walk..was in agony..started on methotrexate and im a new person i gave up childminding which i had done for 25 years when the fatigue was so bad...now i do 4 12 hour shifts as a carer and then 4 days off..but its hard work..i have some really poorly patients and im.amazed i can sort them out 22 a day..and hoist and do all there personal care ...the mtx gave me no side effects either apart from dreaming a lot..and it was like a miracle drug so dont worry life will get better...xxxx

[Hels1989 in reply to Radley01]

Oh another amazing story. Thanks for that Hun. I have to use my radiator as a hoist next to my bed at the moment!! I think that could end in disaster haha. Thanks for the support Hun. How are you getting on at the moment? Xx

[Radley01]

Really good...but for the first ten months i was miserable..so stiff couldnt walk..swollen knees sore and inflamed fingers and toes..awful psoriasis on my scalp behind my ears and on my face near my hairline..and elbows..like you never really bothered me..so honestly poppet it does get better..just hang in there..im on 7 methotrexate tablets on a fri night..and a folic acid everyday..thats all...and its been amazing...i cant believe how much easier it is..i can remember twisting my self round to get out of chairs..crying trying to get out of my partners audi which is so low..going shopping and driving back without getting out the car because i had to park to far away..taking my daughter to sch with me so she could run in and get the kids cos i couldnt.. friends saying iv got a zimmer in the shed and me saying yes please...omg i really hope my mtx works forever....xx'xxx

[Hels1989 in reply to Radley01]

I pray it works forever for you too love or they come up with a cure beforehand 😊 I literally dread the school run each day and feel embarrassed with how I walk and hope the kids arnt ashamed but they are too young I think. My 4 year old daughter (bless her heart) looked at me the other day and said "you can't walk properly can you not mummy" and even writing it here has set me off in tears because that's where I realised that she had noticed and I feel so ashamed and so sad for her that she has to have a mummy who can't walk. I am all for my kids after the last 18 months when their dad walked out on us and I have managed my own grief silently to support them and take away their hurt the best I can and protect them. Us mums will do anything to protect our kids won't we and when things like their dad leaving and now this happen, we can't protect them and that's so hard. The affect it will have on then scares me the most. Sorry for my ramblings. Just needed a little cry and a vent. Thankyou for your kindness xxx

[Radley01]

P.s...sorry to read about your poor mom poppet..god love her..sometimes life is so cruel....xxxxxxxxx

[Hels1989 in reply to Radley01]

Thankyou Hun as if a autoimmune disease isn't bad enough to then get a aggressive terminal cancer too!! She was an angel and would have definitely been on this forum to help others had she been here I know it xxx

[Radley01]

Awwww sweetie..i know exactly what you mean...i adopted my two daughters when they were 2 and 3 now 21 and 22..they have been a blessing.heidi is 22 and wanted to go to uni..which she started this month she waited till i could cope without her..what a kid shes amazing..i really feel for you i was 47 when i got this

.28 is far to young and my heart goes out to you...but honestly hang in there..soon your little girl will be saying...wow mummy your running...and you can strutt around and feel great..xxxxxx

[Hels1989 in reply to Radley01]

I hope so Hun and running will be a miracle as i could run when my knees and ankles were fine 😂

Oh your girls must be so so proud of you and how brilliant their mum is!! What an inspiration you are. Thankyou lovely so very much!! Xxx

[Radley01]

P.s get yourself a disabled parking badge i did ..it really helped...xxx

[Hels1989 in reply to Radley01]

How do I go about getting one? I'm guessing I will need a firm diagnosis first xxx

[Radley01]

Yes i went to the local council office and picked up a form only cost a tenner..it asks for a list of drugs your on and how it affects you...its easy to do..😀xxx

[Hels1989 in reply to Radley01]

Online it says I could get requested to go for a medical. Did you have to? Xx

[Radley01]

I wish i lived near you ..id be round to help when i was off work lol..its shit times..but you will be good in the long run..took me 9 months to get sorted and see the rheumy..hope yours is quicker..xx

[Hels1989 in reply to Radley01]

Aww that's so lovely, just your support on here helps massively as it gives me some release speaking to someone who knows what I am going through and has so many positive stories for me. Thanks Hun well I saw my gp originally in June so I'm on month 4 so hopefully not too long!! Xx

[Radley01]

Good luck sweetie..i hope it gets sorted quickly..xx

[Hels1989 in reply to Radley01]

Thanks Hun. I've got a cancellation appointment with the rheumatologist for Wednesday as I can barely walk and when I do it's agony! I can't even take my kids to school right now and had to ring in sick at work for a week 😢 not ideal financially at all so I'm praying so hard I get some form of help on Wednesday xx

[Radley01]

Awww its bloody awful..let us know how you get on..good luck..xx

[Hels1989 in reply to Radley01]

Thanks Hun I will do. Are you still doing ok? Do you feel pretty much how you used to? Xxx

[Radley01]

Hi hun..yes i still feel ok..apparently im having a flare the doc called me in my psr went to 40 so i had another bloodtest which was 29..its normally about 17..but i didnt really notice still carried on at work and felt ok..strange one...nice to know my gp is keeping an eye on me tho..xxx good luck for today ..it can only get better..xxx

[Hels1989 in reply to Radley01]

Oh your story just gets even better haha. Thanks Hun I do hope so xxx

[Hels1989 in reply to Hels1989]

Also sorry but what is PSR? I've got all my blood results here and trying to compare but can't find PSR x

[Hels1989 in reply to Hels1989]

If you mean ESR mines 121 😬 or was 3 weeks ago

[Seenie]

Hello Hels

I'm a member on HU, and I think you'd like the other forum that I am on: livingwithpsoriaticarthritis.org

We have several UK members who will have lots of local knowledge to share with you. We're a friendly bunch, with loads of experience and empathy,, and we'd love to have you join us!

Seenie

[Fighting4me_17]

hi Helen,

please don't feel life is over there are some great treatments out their to help relieve if not help uput psoriatic arthritis in to remission as such and help you get on with enjoying your life with your precious children. If it was me I woyld book the holiday to give you something to focus and look forward too I did this with Christmas holiday last year and it really helped after having bit of similar year to you after being diagnosed in December 2015 😊

[Hels1989 in reply to Fighting4me_17]

Thankyou Hun xxx