Managing a LONG flare up!

Hey I’m new here and just looking some advice. I was diagnosed with psoriatic arthritis 3 years ago after I had my first baby. At the time it was just swollen toes and pain in my toes/feet but was easily managed with sulfasalazine. When I got pregnant with my second baby i came off the medication and symptoms were fine but I was warned that it would likely flare again once the baby was born but I planned to go straight back onto the medicine. Had my baby back in February this year and for a couple of weeks things were ok then obviously started to flare but because of covid they wouldn’t let me start back on the meds so things kept getting worse and more joints became effected. At the end of June after 2 falls in as many months and struggling with a toddler and newborn I started back on meds but of course can take 12 weeks to kick in. the arthritis is now back in the feet and toes, right knee, both hips, tight wrist and elbow, middle finger and thumb on left hand and also in my left shoulder. I think with the amount of joints now effected the sulfasalazine wasn’t strong enough so I was given oral steroids to take and then in the middle of November they also started me on methotrexate. Again it can take up to 12 weeks to feel the benefits but I’m trying to be hopefully that they will kick in soon!


my main question though is what is likely to be my new normal? Like should I expect to be able to walk normally ever again without having to lean on something for support? Will I ever sleep without being in pain? Will I always need strong painkillers? I’m currently on the max of tramadol a day but I’m still in so much pain that I honestly dread to think what a day would be like without them! Am I going to be able to play with my kids without the arthritis being an issue?


due to covid my rheumatologist has only seen me once during this flare and that was just before switching me to methotrexate but I didn’t get much sympathy from her so don’t think she realises how bad my arthritis is. I’m only 32 but my 91 year old grandmother moves better than I do!


If u made it this far then I’m sorry for the super long post, it’s just a crappy day and with no end in sight for this flare so I can’t help but get down and I really would like some help or advice.

Thanks

Tish

Comments

  • Brynmor
    Brynmor Administrator Posts: 1,211

    Hi @Tish87 welcome to the Online Community.

    A belated congratulations on the birth of your second baby! 😃

    Dealing with a long term flare and resurgence of psoriatic arthritis can be very difficult, not withstanding the delay in being able to take medication. It appears as though you are waiting for the prescribed treatments to start taking effect and waiting for a "new normal".

    Everyone is different so no one is going to be able to say when your current levels of pain and discomfort will ease. I think it is very likely that things will get better and you will be able to cope with everything, including playing with your children.

    It may be helpful to keep a pain diary to help your rheumatologist understand the levels of pain you are experiencing: keeping it simple for quick scanning at the next consultation !

    Our web site has a lot of useful resources if you need information. Here is our page on methotrexate:

    Do join in across the Community - its a great place to say how you are getting on and get support, advice and answers to questions.

    All best wishes

    Brynmor


  • frogmorton
    frogmorton Member Posts: 26,675

    Good morning @Tish87

    You poor thing!! You have all my sympathy. The not knowing is the worst isn't it? I wish we could give you a definite time for this flare to leave you alone, but none of us are exactly the same.

    I do know that post baby flares can be fairly tricky to get back under control from previous posters who have has flares post births. The delay in restarting your treatment can't have helped. This Virus has a lot to answer for😡

    While you are waiting for your MTX to kick in and hopefully give you some respite from the pain I hope you'll stay on here and allow us to distract you a bit from it all.

    There are lots of things you can do to make like slightly easier for you as a new Mum with two tinies. For a start do not think you are doing a bad job because you can't run around and play with the two of them. you are their mum and they will love you as you are (at the moment🤞). You still have your voice and your love and your time. Lateral thinking and use of the TV when needed will fill time as you hopefully recover. I bet you are already doing this anyway.

    I hope you have some extra support with you over the festive season and you have a good Christmas. Babies' first Christmases are always wonderful and this year the toddler will be so excited!

    Take care

    Toni xx

    Love

    Toni xxx
  • Tish87
    Tish87 Member Posts: 22

    Thank u for the replies! It really means a lot knowing there are others out there who know what I’m going through!

    i really wish Covid would go away so that I could see my consultant face to face so they can see me struggling to walk and move etc! That might make them make different decisions regarding the best treatment for me. Must look through for other posts about post baby flare ups to see others experiences!

    its hard not to think I’m failing at being a mum when I know it’s not how I would have been doing things if I didn’t have arthritis, I love nature so had envisioned lots of walks, camping and adventures but now I struggle to see myself being able to do that when I can barely manage to walk the length of my house. Hopefully once the flare eases I might be more optimistic lol and yes the tv is a godsend for when pain is really bad and I need a break lol

    we have had a lovely Xmas day, with two delighted kiddos so that’s the main thing :) now to take things easy for a while before going back to work.

    i hope you all have had a lovely day too!

  • frogmorton
    frogmorton Member Posts: 26,675

    @Tish87

    Soon you will be able to see your consultant face to face, but ten to one your flare will have gone by then. That's what always happens to me anyway!

    I am sure those lovely walks you envisaged will happen they really will by hook or by crook and anyway baby is too young so time to get you sorted first.

    I am very glad your children had a fabulous Christmas day!

    One old thread:

    and this?

    and blimey girl you are also working?

    Love

    Toni xxx
  • lindalegs
    lindalegs Member Posts: 5,408

    @Tish87

    Hello Tish,

    I have been where you are now and know exactly what you're suffering. I wrote the old post which Toni @frogmorton has linked in. Take heart that this is a flare and, yes, they’re hell, but are usually temporary. My flare, as for some of us girls, was brought on by the massive hormone swing of childbirth and seemed to last for ages. Mine could well have lasted a long time because of not getting much rest, not asking for help and stressing over things which could be avoided. You will get more comfortable as the drugs kick in and the 12 week time lapse they warn you of can be the maximum limit rather than the minimum. You might already be a little easier without realising as it can be quite gradual. Some people are lucky and they can have a massive flare of arthritis and are not particularly troubled again once it’s settled down and others, like me, have had to rethink their life and learn to live with it.

    It is a time to reassess and realise that even if this does affect your daily life you will cope. You will adjust the ways to play with your children because you love them and it’s what you want to do. The power of that love will aid you so much. Don’t worry about camping, jumping or running as they are in the future and you don’t have to look at that now. There are ways to do these things and who knows by then you might well be able to do them after all. Look at each day as it comes and work with your pain as to how you deal with that day. Some days you will feel easier physically so let that guide you in how you deal with what you need and want to do. Do not waste your energy worrying about what you used to do and be like as this is you now. You are already a great mum for coming on here and seeking help because you want the best for your little people. I promise you that if you focus more on today, don’t worry about the past then the future will just unfold as you go.

    Your children, if your psoriatic arthritis continues to disturb your life, will adjust with you and they understand because they have no expectations of you. You are their mum and they love you because that’s what children do. I can remember the first time my friend drove me to collect my little 4 year old son from school and I was so worried he would be ashamed of me as I shuffle-walked to the playground. But when he saw me he shouted ‘There’s my mummy everybody!’ He ran to me and stopped, looked up grinning from ear to ear and gently hugged my legs!

    My boys are big, strapping, grown men now with wives and families and they have a special kindness and awareness of the needs of others.

    Remember lovely things still happen when you have a life altering illness and I know that as I’ve lived with rheumatoid for 35 years.

    I hope this helps you know you're not alone.

    Love, Legs x
    'Make a life out of what you have, not what you're missing'
  • frogmorton
    frogmorton Member Posts: 26,675

    Lovely reply @lindalegs and spot on!

    Love

    Toni xxx
  • Tish87
    Tish87 Member Posts: 22

    At this point if my flare was to go just as I was about to see my constant I wouldn’t mind as then there would be some relief lol thanks for sharing those posts though, it’s so nice to see I’m not alone in going through this and that things should get better! Hopefully like u say @frogmorton, my kids are still young so hopefully get this all under control soon and then maybe I will be able to do everything or most of what I had envisioned doing with them lol and yes still working, I’m a civil engineer so all my work is done on the laptop while I sit on my bum but the only good thing covid has done is allowed me to work from home so I can take little breaks and move around a bit without getting embarrassed that my colleagues are watching me hobble about lol

    hi @lindalegs it’s amazing that u have provided so much support on here when it comes to post baby flares! Thanks for helping me too, ur story about collecting ur son from school, worrying about embarrassing him and him actually being delighted has made me well up! It’s such a worry about what impact my illness will have on them, my 3 year old daughter is fiercely independent but that might just be cus she’s 3 but she has definitely noticed that I’m sore as will ask about my sore feet and even told by husband they had to buy me a teddy to help me feel better! Breaks my heart! I love how ur boys have a greater awareness of other peoples needs and only hope that my two turn out the same!

    I guess I just need to focus on the positive and take each day as it comes and of course ask for help too like you say, as hard as that can be sometimes lol

    thanks again for replying, I hope u both have a fantastic new year!

  • frogmorton
    frogmorton Member Posts: 26,675

    Well done @Tish87

    You'll get there and soon I hope be supporting other new Mums facing similar difficulties.

    Take the Teddy - your 3 year old sounds the sweetest😍

    Yes maybe COVID has done you a slight favour as you can pace yourself easier from home than you can in an office.


    Love

    Toni xxx
  • lindalegs
    lindalegs Member Posts: 5,408

    @Tish87

    How sweet your little girl sounds and reminds me of my boys at a similar age.

    Their kindness comes in many guises. Once I dropped a tea towel on the floor and cursed quietly as the floor was a long way away that day. My three year old said 'I'll pick up '**** it' for you mummy!'

    I believed in teaching them to help at a very young age, perhaps too young sometimes. The day i was trying to get my jumper over my head and got stuck halfway. Mr Legs was downstairs and so I called to the boys who were in their bedroom next door. Eagerly they came to help and following my instructions pulled on my jumper really hard and I toppled to the floor!

    Another time I was sickly with a migraine, chucking up every 30 minutes and my youngest went to get me a Dairylea triangle to make me better!

    Anyway enough about me and mine. If there's anything we can help you with even if it's just for empathy please get in touch, there are many on here who are willing to listen and advise.

    Love, Legs x
    'Make a life out of what you have, not what you're missing'
  • lindalegs
    lindalegs Member Posts: 5,408

    @Tish87

    I saw this and thought of you.


    Love, Legs x
    'Make a life out of what you have, not what you're missing'
  • Shell_H
    Shell_H Moderator Posts: 363

    I love this @lindalegs - really lovely ❤️

  • Jewels
    Jewels Member Posts: 135

    Aww that's so nice I think being a mum with arthritis is hard and that just hits the nail on the head be safe and happy 😁

  • lindalegs
    lindalegs Member Posts: 5,408

    @Shell_H @Jewels

    I agree. though I feel it's the same for all mums because for some reason we all feel inadequate when we shouldn't.


    Love, Legs x
    'Make a life out of what you have, not what you're missing'
  • Tish87
    Tish87 Member Posts: 22

    Awk that’s really lovely, thank u @lindalegs it’s just want I needed to see after a crazy day! And ur boys sound lovely too, i had to laugh about the tea towel incident though 😂 Both my kids are wildly independent and it great at times as it helps me out a lot when my daughter wants to help put some washing in the machine and I’m too sore but today she hurt herself while moving her kiddy table and it annoyed me that I should have stopped her, knowing it would have been too big, and moved it myself so mum guilt was in overload for the rest of the day but hopefully made it slightly better by making some cookies with her.

    its definitely hard being a mum with arthritis but even without it we can be too hard on ourselves, just got to keep taking it a day at a time and remember that we got this! 💪😂

  • lindalegs
    lindalegs Member Posts: 5,408

    @Tish87

    Dear Tish, every good mother on earth suffers from mum-guilt from time to time, either with or without arthritis. Our children like to do things for themselves as striving for independence is nature's way and as parents we can sometimes over protect. (I am assuming her injury didn't result in a trip to A&E that is!)

    Here's a video off You Tube of a 4 year old boy cooking rice for his sibling! Hope it works.


    Children are capable of far more than we give them credit for.

    Right on that note I'm just packing my 5 year old grandson off for his stint up the chimney!

    Love, Legs x
    'Make a life out of what you have, not what you're missing'
  • Tish87
    Tish87 Member Posts: 22

    Well that’s true at least I won’t be seen as too overprotective lol no no just a sore foot that was quickly forgotten about after a few minutes. That video is amazing, I can’t imagine letting my daughter do something like that lol

    Can u send him round to do my chimney next?!? 😂 😂

  • K_H_9
    K_H_9 Member Posts: 1

    I could have literally written this myself, almost word for word and I’m so sorry to hear you’re going through this too💔

    I also have psoriatic arthritis and had a baby last February!!! Just like you I have been managing flare up for the last goodness knows how long. Covid has meant limited help (which would usually be endless as we are very blessed with friends/family) and the homeschooling whilst trying to care for a baby has been near on impossible some days.

    I totally understand when you describe your feelings about not being able to do things with your children as you planned- probably pre diagnosis- and wondering if it’s a case of accepting this as the ‘new normal’. I know this isn’t probably much use to you but felt compelled to write a reply to say “I hear you and we’ve got this” 🙌🏽💪🏽 Sending lots of love and best wishes

  • chrisb
    chrisb Moderator Posts: 276

    Hi @K_H_9 and welcome to the Versus Arthritis forum.

    I see that you’ve got involved straight away in an existing discussion with your first post, which is great to see. Responses to other forum members posts relating to your own experiences is exactly the sort of dialogue upon which the forum thrives.

    If you are ever in need of information/articles relating to psoriatic arthritis then do visit our website:

    I hope that you continue to engage with other forum members and derive some personal benefit from so doing.

    Best Wishes

    ChrisB (Moderator)

  • Tish87
    Tish87 Member Posts: 22

    Oh wow @K_H_9 so many similarities in our stories! Can u believe our little ones are almost a year old! As long as some of the days felt when I was really bad seemed, the whole year has absolutely flown in! And wow I don’t know how u managed to homeschool on top of everything else going on!

    how is your flare up at the minute? Are there any medications that seem to be finally kicking in?

    yeah I think I just needed to rant and now I need to move on and accept it for what it is! Lol