24 with rare Palindromic Rheumatism

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Staceyjade123
Staceyjade123 Member Posts: 5
edited 12. Jun 2018, 17:45 in Young people's community
Hi,
So I’m new to this, I got diagnosed with Palindromic Rheumatism about 4-5 years ago. I have found myself getting worse- I have even began to fall when I get up because I don’t always realise I’m in pain until I get up. Palindromic Rheumatism is different to normal Rheumatism as it moves around the body and there is no day to day similarities. One day I can wake up with pain in my knee and an elbow, the next day or month or even few hours I can have pain in my fingers and/or hips. It varies on an almost daily basis which makes it difficult to understand and plan things. I feel self conscious that I’m 24 and sometimes have to walk around limping or holding on to things for support because of the pain. I also feel like I am a burden on my boyfriend. He has always been aware of my condition and that my specialist has told me I have a 98% chance I getting chronic Rheumatism, he has always said he will be there but taking him to appointments and seeing his reactions to those who can no liner work or have later stages of the condition is always something that worries me. Why should he put up with me? He’s young, attractive, funny, women love him so why would he choose to be with someone that he may, most likely, one day have to care for on a daily basis. Anyone else feel this way? Or have the same condition?

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  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
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    Hi Staceyjade and welcome to the Arthritis Care forums.

    I'm sorry to hear that your symptoms of Palindromic Rheumatism are getting worse and causing you new difficulties. After 5 years, you will know a lot of the information about the disease but there may be one or two extras that you could glean from our factsheet on the subject, which can be downloaded here:

    https://www.arthritiscare.org.uk/do-i-have-arthritis/publications/449-palindromic-rheumatism

    Coincidently, we have a very recent thread on Palindromic Rheumatism with some helpful links that you may wish to read:

    https://arthritiscareforum.org.uk/viewtopic.php?f=8&t=48517

    It is also not uncommon to worry about "being a burden" on friends and partners. Explaining how you feel is very important and doing so in a calm manner: your feelings and emotional well being matter - https://www.arthritiscare.org.uk/emotional-wellbeing-and-arthritis/your-relationships

    I'm sure other forum members will come along to give their own personal experiences that will provide some good support.

    All best wishes

    Brynmor
  • stickywicket
    stickywicket Member Posts: 27,713
    edited 30. Nov -1, 00:00
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    Hello and welcome from me, too :D

    I was diagnosed with RA at 15. I met my future husband at university and we celebrate 50 years of marriage next April. I tell you this so that you will realise the good guys do stay because they love us for who we are not what we have.

    I guess I'm one of the people who is a bit scary to look at in rheumatology clinics. That's because when I was diagnosed there were no decent meds to slow down the disease. It's quite different now. The meds do a great job and yo don't actually see many people like me now. And that's good :wink:

    My husband does care for me on a daily basis but I care for him too. And we both get to California to see our elder son and grandson every year. It's not all doom and gloom I promise you. Look for the good bits and you'll find them.

    He's with you because he loves you. Don't doubt yourself.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Staceyjade123
    Staceyjade123 Member Posts: 5
    edited 30. Nov -1, 00:00
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    Thank you for that, I am working on my self esteem issues the best I can. It’s nice to hear that you found happiness and it’s lasted for so long with the condition not being a control on your life. I think it stems from past experiences, I’ve been told that it doesn’t matter but then found out that it does in the past. I know no two people are the same but it’s difficult to let myself trust that I can be happy and more so make someone happy whilst dealing with my condition.
  • frogmorton
    frogmorton Member Posts: 29,424
    edited 30. Nov -1, 00:00
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    Hello Staceyjade

    A quick hello from me, someone your Mum's age who also has palindromic rheumatism on her records back in time :) Luckily I was probably early 40's by then.

    I do have some understanding of how you feel though as my youngest daughter, (19), was diagnosed avascular necrosis in her LT hip and RT shoulder at 18. This was caused by chemotherapy and high dose oral steroids which she had at age 16 for 2 and a half years.

    She had surgery on her hip sept 2016 and a new shoulder this January. Her self-esteem isn't great either and finally she has taken the first step to getting help by seeing the Dr last week. She is staring talking therapy very soon.

    She also has an interview for a very part-time job (she still sees 4 different consultants so time is restricted) next week. I got the impression you do work for some reason??

    Lastly YOU are young attractive and funny too I bet - else your bf wouldn't be with you!!

    Keep talking it helps :)

    Take care

    Toni xx
  • Staceyjade123
    Staceyjade123 Member Posts: 5
    edited 30. Nov -1, 00:00
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    frogmorton wrote:
    Hello Staceyjade


    ...She also has an interview for a very part-time job (she still sees 4 different consultants so time is restricted) next week. I got the impression you do work for some reason??

    Lastly YOU are young attractive and funny too I bet - else your bf wouldn't be with you!!

    Keep talking it helps :)

    Take care

    Toni xx

    Hi - you are right, I do work - I am a design consultant and I love my job, I worry that I won’t be able to continue to work if my condition continues to worsen but I have a determination that I think one has to have with my condition. I work harder because I know one day I may not be able to. I have gone into work limping, in pain and even had people take me to work when I couldn’t drive from aching.

    I hope your daughter is doing better now. I am sorry for such a late response. I have had a few life changes. I actually split from my boyfriend last year (im December) as I found out he wasn’t loyal and he got aggressive one night when drunk. It has done nothing but make me stronger though. I know that as much as I need help sometimes I can still be independent and that’s something that has helped me get through, I also started to now date a man who has a parent with a condition that means they have good and bad days so he knows what living with somebody with a similar condition will mean and he seems to be fine with it. He respects me for my determination to do as much as possible for as long as possible and that is great. Although I have learnt that relationships don’t define me - I define who I am and for that reason I will look at my condition for the positives -

    It has taught me that I’m stronger than I thought
    I am happy more often than not and being in pain sometimes isn’t worth getting down about
    I will work for as long as possible and make my life as successful as I can whilst I can.
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