A year into psoriatic arthritis. Are you feeling alone?

bosh
bosh Member Posts: 1,761

Hi everyone. I was diagnosed with psoriatic arthritis about a year ago. I’m getting by, but there are times when I feel every day is a struggle. I find non - arthritic people can often be lacking in sympathy and I feel very alone, does anyone else feel the same? Thanks.

Comments

  • Shell_H
    Shell_H Member Posts: 548

    Hi @bosh , welcome to the online community!

    We have a lot of info on Psoriatic Arthritis, and I know you've said it's been a year so you may well know a lot already but I thought I'd give you a link to some info in case it helps!

    Sadly a lot of us with arthritis and other chronic conditions do find that those without just don't understand the fact that it's a constant thing. We do have a few discussions on it which I'll give you below which may help. There's also a theory which a lot of us use to help explain or discuss with other people what it's like, which might be helpful for you:

    This is a theory of trying to explain a chronic condition, with it's ups and downs and constant worries, which may be an easier way for people without a chronic condition to understand.

    Some discussions which may well be if interest to you are:

    The community is very friendly, so do jump in and chat with others as you feel interested!

    It's lovely to meet you!

    Shell

  • Hi @bosh

    Im 6 months in myself ! I have felt positive days and lots of down days !!

    I felt my family didn’t realise what a struggle everyday can be , until I went to London for a 4 day break now my husband can finally see what’s it’s like when I say I’m struggling to walk and he cud see me in pain doing things that I used to take in my stride !

    my son is very understanding but my daughter thinks I’m lazy when I can’t do much I think it’s because I’m still a young 44 !! And she doesn’t understand big hugs 🤗

  • teabe
    teabe Member Posts: 4

    Hi @bosh I am about 18 months into my diagnosis, after years of struggle to get my Dr to take my pain seriously. My grown up kids & husband don't seem to understand the struggles, since being diagnosed and given medication I have had a remarkable improvement of daily life, such as being able to walk up and down stairs without feeling like I am 90 years+ (I'm 48).

    Unfortunately I have recently had to take breaks from the medication to have 2 carpal tunnel ops, and for some reason, some areas of my body are relapsing and not responding to increased doses, this is starting to get to me as people around don't "see" anything wrong, and I don't like to say anything as if I did I think I would be complaining any time I move on a bad day 🤣

  • bosh
    bosh Member Posts: 1,761

    Thanks @Hairobsessed123 for your comment. I’m also in my forties and “look young for my age” and I guess what I’m saying is that appearances can be deceptive. One friend recently asked me if I go on runs, I know the condition affects people differently, but even though she’s a nice person, I don’t think she’s been listening to a word I’ve been saying.Again, nice to hear from you. Take care.

  • Horrible when people don’t care enough to listen !! @bosh !!

    I’m fortunate that my best friend has RA and she has been a huge help and she can see when I’m having a crap day !!!


  • bosh
    bosh Member Posts: 1,761

    Hi @teabe thanks very much for your comment. I also went through a very long time of not being able to use stairs without immense pain, it was terrible. Glad there have been some improvements, v sorry about the carpal tunnel syndrome and other problems. Medicine has also helped me too, but progress was slow and I can’t help thinking about how things used to be. Good to know that your family is as imperfect as mine though, no offence! Take care.

  • Hi @bosh

    Sorry to hear you feel very alone - it can feel like that absolutely but know that there are so many individuals with the same diagnosis who experience exactly the same emotions you are going through. I’ve definitely been there and I’ve found forums like this useful. 

    I was diagnosed with psoriatic arthritis 7 years ago, in a lot of pain before being moved on to biologics which helped manage the pain and gave me a sense of normality for several years. I’m 40 and have experienced my first physical flare up in 3 years which has been quite a shock to the system. 

    Trying to explain arthritis pain to friends and family can be difficult when there isn’t anyone with a similar diagnosis. You’ll have good days and bad days - on the bad days, be kind to yourself - it’s something I’m still learning to do. 

    Whenever you do feel alone - reach out on here as you have done. Stay strong and take care x

  • bosh
    bosh Member Posts: 1,761

    Thanks for your nice and kind comment @foodgloriousfood

  • Brynmor
    Brynmor Member Posts: 1,795

    Hi @foodgloriousfood welcome to the Online Community - great to have you here.

    Explaining arthritis pain to someone can be extremely difficult. I found some very helpful suggestions in the section on "Your Relationships" on the website page Emotional Wellbeing which helped: https://www.versusarthritis.org/about-arthritis/managing-symptoms/emotional-wellbeing/

    Do join in across the Community, ask questions and continue to give great support! You will be most welcome.

    All best wishes

    Brynmor

  • Hi. I totally get what you’re saying. I have 3 grown up daughters who just don’t get it. One is better than the other two, but it’s a lot of eye rolling and yeah sure mum. My husband is great but I feel even he has his limits.

    mice lost so much to this disease I could cry, I’m 54 going on 90! I’m on biologics now but it seems to have quit on me and the flares are coming back and constant pain again. I also had a heart attack in the middle of the pandemic and had two stents fitted and told I still have to partially blocked (but not bad enough) arteries! No one seems to care, I feel so lonely and trapped in a body that I hate.

    I used to work and do so many crafts, now my hands hurt so bad, and my fingers are turning with one already fused. So I’m scared I won’t be able to continue with the things I enjoy.

    sorry I’m new here and didn’t mean to ramble on lol. But yes.. I do know what it feels like to have no one believe you x

  • HelenS
    HelenS Administrator Posts: 92

    Hi @Tracycetra68

    Welcome to the community and thank you for commenting. It sounds like things are really difficult for you, but I'm sure that you will find some useful advice here from other members in a similar situation to yourself. Please do take a look at all our discussions.

    You may find the following link useful on our VA website

    Take care

    Helen, Admin

  • Banny1960
    Banny1960 Member Posts: 7

    Hi, don't know if I am in the right place, (new today) I can relate so much, I've had arthritis and cervical spondylosis for 20 years (neck and spine) this is when it was first diagnosed. I have got to the point now as I'm having a really bad flare up, where I need a bit of support from people who suffer like me. I just get on with it most of the time and tell people I'm fine if they generally ask how I am, I don't like to moan about illness, no-one wants to really hear about that but I'm not in a good place emotionally right no, my husband is great but he can't really know. The time has come to talk with people with this. I feel great symphony with you all here and if I can help you with anything I will. Thank you

  • Poppyjane
    Poppyjane Moderator Posts: 438

    Hello @Banny1960

    Welcome to the online community, it is great to have a new member sharing support with other people on their first posts. You have felt the time and place is right to reach out to other people who are living daily with arthritis and to ask for some support for yourself. We are glad you found us and we hope that the peer support alongside the information and activities available on the community will offer you this.

    I attach some links which I hope you will find useful

    We are here to support you and hope that the flare up you are experiencing at the moment becomes more manageable soon. This is a safe place to share your ups and downs and not feel isolated. So do browse round the community and join in with us soon.

    Take care

    Poppyjane

  • Weeyin
    Weeyin Member Posts: 6


  • bosh
    bosh Member Posts: 1,761

    hi @Tracycetra68 Nice to “meet you”

    sorry I very rarely check this page of the site and guess what? Ive got some arthritic neck pain going on at the moment so I’ll keep this short

    but it’s very nice to hear from you yes I know what you mean about people not believing in you my own father said just this morning that I was making up the arthritic pains I get when it’s cold

    yes that “all in your mind” thing doesn’t help anybody does it really?

    i wrote the post you responded to a long time ago but I’m feeling much better now that meds have kicked in as it were I am on methotrexate and leflunomide btw not biologics also feeling a lot better mentally due to the help of people on this site we talk as it were on the page called Vals Cafe I find this website to be very supportive in general though and the people on here have helped me so much, so keep going with things from what I hear biologics is a very good medication in many ways take care of yourself. Xx

  • bosh
    bosh Member Posts: 1,761

    Hi @Banny1960 Nice to hear from you this is a shocking late reply to your post I realise I very rarely check this page but I decided to do so today sorry to hear that you’re having such a difficult time with your health and with other people don’t suffer from the condition not really understanding I also have relatives who really just see what they want to see I have a young - looking face so people tell me you’re too young to have arthritis and then there are others who say everything gets better with exercise and then I feel like replying yes so try exercising when you could barely move out of your own room for for a year or so anyway I think that there are a lot of very nice people on this website and that has helped me a lot and continues to help me None of my family have arthritis and friends seem to understand on some levels on other levels they’re perhaps a bit self-absorbed to be honest, one said to me see the physio it will solve all the problems wish it was that simple anyway whenever you feel like gossiping or venting i think that this site is a great tool to help us do that a useful use of the Internet for once take care. Xx

  • Molly28
    Molly28 Member Posts: 12

    Hi @bosh

    I too am learning that this is a very lonely road. I recently read the spoons theory that I see someone else has posted, and whilst I’ve not shared it with anyone in my family yet, I found it helped me understand myself better. I think it could be useful for those closest to us too though and something you could try?

    I feel ridiculously alone too. I’ve not even got a diagnosis. I’ve got joint pain, lower back (excruciating pain after rest), stiffness, fatigue, nail problems, chronic migraines, eye irritation and bowel issues but because there’s no inflammation in my blood and the rheumatologist hasn’t seen the swelling he won’t diagnose. I’m now off work due to pain and daily bowel incontinence and no one will help because there’s never any evidence in tests of anything. It’s so hard to struggle every day when there isn’t even a name for the struggle (although I know there is). I now feel like some sort of fraud where I’m making it all up in my head and no one believes me. A very lonely place to be so yes, I hear you and hope even just being on this community helps a little.

  • bosh
    bosh Member Posts: 1,761

    Hi @Molly28

    Nice to hear from you I actually wrote the post long time ago now and I’m feeling a lot better now physically and mentally I think being on this site definitely helps there are some very nice people on here spoons theory it’s not something I really feel applies to me but thanks for thinking of me but I do try and do things when I have energy as much as possible like in the morning though of course for people like yourself who are working presumably full-time don’t get a lot of choice in that sorry about that situation I hope you get some kind of diagnosis soon take care. X

  • Banny1960
    Banny1960 Member Posts: 7

    Hi, don't know if I am in the right place, (new today) I can relate so much, I've had arthritis and cervical spondylosis for 20 years (neck and spine) this is when it was first diagnosed. I have got to the point now as I'm having a really bad flare up, where I need a bit of support from people who suffer like me. I just get on with it most of the time and tell people I'm fine if they generally ask how I am, I don't like to moan about illness, no-one wants to really hear about that but I'm not in a good place emotionally right no, my husband is great but he can't really know. The time has come to talk with people with this. I feel great symphony with you all here and if I can help you with anything I will. Thank you

  • Banny1960
    Banny1960 Member Posts: 7

    Thank you so much, so kind. I am going to attend a support group near to me as soon as I can. I will certainly be on here to seek/ give help. It's good to know there are people who understand. Mentally I am feeling better and trying to keep that way. Thank you Poppyjane

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