very down with new diagnosis of OA

mrsbaldwin14
mrsbaldwin14 Member Posts: 6
edited 23. Apr 2017, 22:47 in Young people's community
Hello All,

I am very new to these forums so please bear with me..

I am 23 and have two children one four and one coming up to 11 months :) I have recently been diagnosed with OA in my AC joint, I also have fibromyalgia, raynauds, hypermobility syndrome, a tear in my rotary cuff muscle, tendonitis, and now this.

I am so exhausted and feel like a VERY old and unfit lady! really need help to pick myself back up, literally feel like I'm falling apart.

I am in constant pain over my whole body and beyond exhausted. I am due to have physio and a MRI scan on my spine, hips and knees as its suspected that I have OA there too.

Any advice on how to cope with all of this with two young children?
also I am on a number of pills but none seem to be working to stop the pain? I have had four steriod injections in my shoulder and neck in the space of a few weeks.

anyone else had this from an early age? did it affect your hobbies and day to day life?

hopefully I manage to post this correctly, looking forward to hearing from you. Hope your all well.

Stephanie xxxxxx

Comments

  • stickywicket
    stickywicket Member Posts: 27,707
    edited 30. Nov -1, 00:00
    Hello again, Stephanie. I answered your post on 'Say Hello' but thought I'd reply here too as you give more details about yourself.

    I'm not a 'young person', though I was when first diagnosed with RA many years ago when I was 15. You are so right. Children and arthritis are a very tough mix. I remember so often it was a matter of just trying to get through the day while being there for the little ones and not letting my pain mess up their day too. I was lucky in that my Mum helped a great deal after they were both born and I flared badly. She then came over once a week to help a bit with things. I also had a great next-door-neighbour whose children were the same ages as mine so they were all in and out of both houses.

    I hope the physio wil help you. It can be very hard to find time for exercises but, quite frankly, I'm not sure I'd still be able to walk without ithem. I find steroid jabs sometimes work and sometimes don't. As for pain relief – I take as little as I can get away with as I dislike (and was scared, when the kids were young) feeling spaced out and not in control.

    You have a lot going on. Have you seen a rheumatologist for the fibro and Raynaulds?

    Did it affect my hobbies? Indeed yes. What hobbies :lol: I had no time for them when mine were little and certainly no energy though things did improve somewhat later and I took up Riding for the Disabled in a bid to stay as fit as possible. What do you like doing?

    There is lots of info on the 'Managing Arthritis' tab above. This forum is a fairly quiet one and many people gravitate, eventually, to Living With Arthritis. I hope you'll find us helpful.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • mrsbaldwin14
    mrsbaldwin14 Member Posts: 6
    edited 30. Nov -1, 00:00
    Hi Stickywicket,

    Thanks for your reply, feel less alone now! Yeah I'm close with my mum too but she's had to move further away so can be hard to see each other as often.

    Yes been seeing the rheumatologist but he's concerntrating on my shoulder at the moment. I'm on something for the raynauds and on amtitriptlyne ( sorry not very good with spelling!) but as its getting colder its getting worse.

    Well theres so much that I would like to do, I love cake decorating, sewing, horse riding, dancing! the list could go on, -obviously I know that I wouldn't have a huge amount of time because we chose to have our children but even for a couple of hours a week would be nice, its frustrating because my kids are amazing and I do get a few hours where there napping or happy playing with each other but I'm in so much pain and discomfort I can get motivated to do anything, and physically don't feel 'up to it'

    but I could moan all day but its not going to help so - that it got it out of my system! ha thanks again, hope your well


    stephanie
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    There's no doubt you are up against it at the moment but I reckon any parent with young children lacks the personal time they might desire due to the pressures of living with young children.

    Our diseases may dictate some areas of our lives but they cannot dominate all of it. Pain 'killer' is a total misnomer, they only dull and the stronger they are the more they take you away from the pain which isn't ideal. Life became easier for me once I had forgotten about being pain-free, every move I make hurts something somewhere but so what? It isn't going to change, it isn't going to go away and it has a useful role to play: when things are ramping up then it's time for me to stop (I've just made some energy bars and now I need a break because everything is twanging away more than 'normal') so here I am with a cuppa.

    I plunged into depression when my OA was diagnosed in 2011: in my naivety I thought one had either an auto-immune or OA, it was a revelation that one could have both! Then fibro added its two 'pennorth and yes, it's miserable, but that doesn't mean I have to be. My GP gave me some anti-depressants and they made a difference and my rheumatologist advised me to stay on them because they would help me cope. I take a daily low dose and soon know if I've missed one or two.

    You have a very demanding life and you have to make the according adjustments. Be kind to yourself whenever possible, rest as much as you can, don't load yourself with high expectations that you cannot meet, just take each day as it comes and accept any help when it's offered whether you need it or not. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • mrsbaldwin14
    mrsbaldwin14 Member Posts: 6
    edited 30. Nov -1, 00:00
    Hi Dreamdaisy,

    Thank you for your reply, so nice knowing your not the only one whos in this ( feels like that when everyone else you know is fit and healthy, - especially when they say comments like its in your head ahaa!)

    I hope your doing ok. Thanks again for your reply xxx
  • WyleECoyote
    WyleECoyote Member Posts: 38
    edited 30. Nov -1, 00:00
    Hi,

    I don't have kids but I understand being diagnosed in your 20s with OA (and hypermobility) and what it's like to feel like you are quite literally physically falling apart and exhausted.

    After over 20 years on this train I've learned to congratulate myself if I have had a productive day of any kind. That might be paid employment, doing something I enjoy like a hobby, or just managing to keep my household going when I've had a few hours sleep and feel like arthritis is trying to swat me like a fly. Of course not all days are that bad but I have learned to be modest in my expectations, prioritise what's important and be pleased when I have ticked something off the list. If you can manage to raise your kids and maintain your mental health (hard with any chronic pain condition because of what it does to your brain function) then I say you are a champion.



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