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Mum of two awaiting Psoriatic Arthritis diagnosis for 2 years.

Hi everyone,

I'm new to this website and havent posted before. I'm not sure what i'm looking for, maybe some advice or just to hear i'm not alone.

I'm 28 with two young children (2 and 6 months). I initially went to my GP with severe lower back pain about a year and a half ago. After several Rheumatology appointments my diagnosis is suspected Psoriatic Arthritis however my MRI and other scans have all came back with no sign of inflammation.

My condition continues to worsen each month whilst i wait for my consultant to make her next move. This has obviously been delayed by COVID19. My knees have started to swell and give way, my bones feel like theyre rubbing together and i cant walk very far at all without needing to stop.

I'm now unable to do daily tasks such as driving, showering, getting dressed and solely look after my children without the support of my partner. Thankfully he is furloughed but due to return to work soon. I take pain relief medication daily which turns me into a zombie and doesnt help much with the pain or swelling in my joints. I'm getting new pains/symptoms all the time and im so worried my condition is worsening whilst im waiting for a proper diagnosis and treatment.

I dont know how to cope with feeling frustrated that im not getting anywhere, i dont even know what my condition is. im worried that i cannot look after my children and with the current COVID19 guidelines any extra help from family and friends isnt aloud. I dont know how i'm going to cope when my partner has to return to work.

How do you cope with the pain at home? is there anything i could be doing at home? i have physio appointments over the phone and im told to exercise to strengthen me but this is nearly impossible for me. i cant get down the stairs without my knees giving way.

How do you look after your children whilst struggling with mobility and pain? They are too little to understand why i cant do certain things and it just breaks my heart.

I'd love to hear how others (especially mums) cope at home if they havent already had their treatment. Or if anyone is in a similar situation to me and awaiting a diagnosis?

I'm sorry if none of this makes any sense. I'm really at a loss. I appreciate its hard for everyone whilst hospital appointments are limited. i just don't know what else to do.

Thanks for reading,

Maddy

Comments

  • AlanMAlanM Posts: 30 mod

    Hi @maddybaker91

    thankyou for posting and welcome to the forum.

    You have been attending Rheumatology and have a possible diagnosis of psoriatic arthritis. However, your condition is worsening, with significant problems of mobility and pain, and you feel that you're struggling. This is particularly acute as you have two young children to look after and your partner may need to return to work soon. Essentially, you're struggling to cope and deeply worried about daily living, especially as access to NHS services are still limited.

    Firstly, thankyou for sharing. One of the key messages of the forum is 'you're not alone' and I hope you'll find those conversations with others who have experienced similar problems. I would suggest that it might be worth talking to someone on our Helpline, who might be able to help untangle the various problems you're confronting - diagnosis, managing pain and mobility, access to services, practical support. You can phone them on 0800 5200 520, Mon-Fri, 9am-8pm.

    The Versus Arthritis Website also has information on exercise to manage pain, which may seem like a remote possibility at the moment but please have a read

    Good luck, Maddy, and I look forward to seeing you on the forum in the future.

    best wishes

    Alan

  • Mike1Mike1 Posts: 461 ✭✭✭

    Have a look at this post - https://community.versusarthritis.org/discussion/52363/mum-of-2-kids-under-3-and-struggling#latest - perhaps the two of you can chat. Hope things get better soon.

  • Hi Maddy

    I had really bad arthritis and after my daughter was born I had similar issues to you. I would come down the stairs on my bottom to makes sure I didn't fall over. If my daughter slept so did I. We played lots of bed games making sand castle with the duvet and dangling our feet over the edge for the sea. We read loads of books and I sat her surrounded by toys. I was always exhausted. Forget about house work it doesn't matter, family could maybe collect washing and return it ironed for you. Take your pain killers about half an hour before you are going to need to be active. I made my daughter walk everywhere and climb up into her car seat because I couldn't lift her. Most importantly don't beat yourself up, they won't remember these early days and the fact that you are worried means you are already an amazing mum.

    I have psoriatic arthritis too. if you can get onto your rheumatologist and email them pictures of your swollen knees, keep a pain diary and email it to them and keep asking them when they are going to start treatment. Yes be polite but be persistent, they won't know how much you are struggling unless they keep hearing from you.

    Also lastly be kind to yourself and maybe now is a good time to try and get pip so that you have some extra money to help you out.

    sending hugs

    Grace111

  • Hi Maddy
    I’m also new to the site and while scrolling through some of the posts, your post jumped out at me as I feel I can really sympathise with you! I’m 35 and also have 2 young kids (5yr and 2yr) and have recently been diagnosed with psoriatic arthritis. I understand exactly how you feel with how much of a struggle it is to look after wee ones while in constant debilitating pain. My husband and I are both working full-time at home at the moment with the our kids at home with us and it’s hard enough dealing with usual everyday challenges of lockdown without having to cope with continuous pain.

    I’m so sorry to hear you have had little support and haven’t managed to get very far at getting a diagnosis. I have been very fortunate with having a fantastic GP and rheumatologist that got me a very quick referral, diagnosis and treatment in a space of 2 months (only just started treatment this week on sulfasalazine so can’t say if it’s working yet!) So I would keep pushing for a scans, treatment, etc. I agree with Grace where you should send photos of any swelling, I was encouraged to do this by my GP.

    Although really hard, I have found gentle exercise a relief and does help with the pain short term - I have been doing pilates and yoga at home when the hubby takes the little ones out for a walk. And although it’s not for everyone I have been doing some meditation too. I usually feel better mentally after some exercise too.

    It would be great to connect to share experiences!

    Take care
    Lynne
  • AlAl Posts: 89 mod


    Hi and welcome Lynne

    It's great to meet you, you have come to the right place for information and conversation with others like you living one or more forms of arthritis

    There are many here more than happy to share their experience as you share yours.

    This link is for general information regarding any type of arthritis

    About arthritis

    https://www.versusarthritis.org/about-arthritis

    Find out more about the different conditions, treatments and how to manage your symptoms.


    if you have a specific question please post in the Living with Arthritis discussion or for general chat in the Chit Chat discussion. Just join in wherever you feel comfortable

    Al

  • Thank you Lynne for taking the time to reply. Although its rubbish circumstances, its nice to know I'm not alone. I've been trying to do a pain diary like someone suggested and have been taking photos of my joints. I have an appointment with my rheumatologist on the 14th July which I just cannot wait for. And have another MRI booked but because of the covid19 I'm on the waiting list. Does anyone know if you need arthritis confirmed via a scan to get a diagnosis? This will be my second MRI but my rheumatologist is convinced I have psoriatic arthritis dispite scans coming back ok.
    Lynne do you recommend pilates? Its not something I've done before but I would like to do something easy going at home. I do try going for a walk but struggle getting very far and my joints seem to swell further after anything like that. Maybe I could look on YouTube or something.
    Again thanks for getting back to me

    Maddy
  • JanoGJanoG Posts: 1
    Hi, I am new to the site and your experience really rang a bell. I was diagnosed with Psoratic arthritis about two years ago when my children were 10 and 12. I had pain everywhere and was struggling to walk and do day to day tasks. I went to the beach in the summer and as we parked the car I thought I cannot walk the 100 yards to the sand and it was very frightening and felt all the worries that you highlighted.
    I had a really good physio who helped me put into words in ways that the medics could understand my condition and it may be worth contacting the helpline to help you with this and was referred to Rhematology at our local hospital. My MRI did not show any signs but my hand X rays did.
    It has taken me a while and some trial and error and I am still in some pain and have also been diagnosed with fibro but the medication has made a huge difference and I feel much more in control. I am on methotrexate and a biologic and have good support from the hospital but can now do most things including playing football which 2 years ago would have been impossible! I found that excercise really helps even walking for 10 mins and pilates, also taking painkillers before activities. Good luck and i hope that over time you will find treatment that works.
  • Hi Maddy
    That’s great to hear you have a rheumatology appointment booked! Make sure you stress all your symptoms and how difficult it is to go about daily activities and looking after your kids. I’m not sure about having to get a diagnosis before an MRI scan but my rheumatologist wouldn’t give me a formal diagnosis until I had my scan results. I was also told I wouldn’t be seen for an MRI quickly due to covid-19, but my rheumatologist was able to move me up the waiting list due to the pain I was in. It might be worth asking at your appointment when you will likely get a scan.
    What type of medication are you taking? Are you taking any NSAIDS? My GP prescribed me Naproxen which helps with certain joint pain and you don’t need a referral from your rheumatologist for NSAIDS, you can just get them from your GP. I’ve also started a course steroid tablets. Your rheumatologist should be able to give a steroid injection or tablets to ease the pain until you have your MRI and a formal diagnosis.
    Regarding exercise, i struggle to walk too so I have found Pilates and yoga brilliant as I do a lot of exercises on the floor so there is less pressure on my joints. My GP said Pilates is particularly good for arthritis as it strengthens the muscles around your joints. I’ve been doing this video on the NHS website daily: https://www.nhs.uk/conditions/nhs-fitness-studio/arthritis-pilates-exercise-video/ as well as other videos on YouTube.
    Sending hugs to you and your family. Let us know how you get on with your appointment!
    Lynne
  • https://www.nhs.uk/conditions/nhs-fitness-studio/arthritis-pilates-exercise-video/
  • Hi. I've only just joined the forum. I'm in my early 60s and have had arthritis for over 20 years. I saw a specialist many years ago and he said I either had psoriatic or another (can't remember the name) type of arthritis. I don't think I've ever been as bad as many on here and the severity and where it occurs, varys with me. I still keep fit and go to the gym etc. I'm actually having problems with my hips and back just now and think this was triggered by doing some digging in the garden.

    What I want to mention is that almost 20 years ago, I started getting acupuncture once a week. I was lucky that my doctor was Chinese and one of the first people in the UK to practise it. My wife had acupuncture for another condition and it worked for her.

    I still get acupuncture every week (except during this pandemic). There is no doubt that this has helped me enormously. I'm not totally clear of it but believe it has regressed to an extent and plateaued at a minimum.

    It might not work for everyone but has more myself.

  • ChrisKChrisK Posts: 87 mod

    Hi @Joe4joints

    Welcome to our forum, glad that you have found us. The members here are friendly and very helpful.

    This pandemic has certainly stopped people with arthritis getting treatments that help them. There are people on here that have Psoratic arthritis also there may be members who have had acupuncture. Versus Arthritis produces many booklets which cover various conditions related to arthritis. Above in this sections there are several booklets with links that you may find useful.

    Hope this is of help to you and look forward to reading future postrs to see how you are doing.

    Best wishes

    ChrisK

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