No one seems to care

I’ve had psoriasis since I was 7, then started with joint swelling & pain at 10. They thought it was rheumatoid arthritis. It then went away till I got to about 18. Kept being hospitalized as I couldn’t walk due to severe pain in what felt was my hips. Still no diagnosis, even though I had psoriasis all over me. Eventually I was diagnosed with PsA and put on methotrexate, which was not really working. Then the same doctor from my hospital said in his opinion I didn’t have PsA and that my pain now was due to having twins and that I was depressed. He sent me away with some antidepressants and said no need for me to come back.

To cut the story a bit shorter, I am now 54 and was only diagnosed about 3 years ago. They refused to give me any meds and kept cancelling my appointment for over a year and a half. I eventually paid to see a specialist who didn’t really want to focus on my case as he said I was already under a rheumatologist higher than him. He did phone and tell me that now my spine is fused in 3 places and he would recommend biotics or whatever… .I have since been put on a waiting list for them. I found out I have lung desease, a fatty liver, and sky high bloods! Of which is normal for me? Only last 2 been like it. I feel it’s too late for me now and it’s all hit me for six, as no one even told me all these things and they’ve known for 3 years when they refused me meds. I feel totally let down by the National Health Service (NHS) and my doctor as he said the hospital seems to have a problem with me?? Rant over, confused though.

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Comments

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  • MQuirk
    10 months ago

    I am very similar in that I started with psorisis the skin disease at age 7. I’m now 62. It has been a long road. Until the 40’s I probably tried everything that existed for the skin issues. Then the arthritis hit, and now my ankles, elbows, knees and hands were also horrible, covered in scales. Early 50’s I tried Methatrexate which worked ok on the arthritis, but labwork didn’t like it. I’ve tried Enbrel and Humira. Neither worked very well on anything. My skin has finally toned down I have one active patch on a knee, but the arthritis is in knees, shoulders, back, hands. Sadly too I have other issues going on too….. just diagnosed with Chronic Kidney Disease, Stage 3, besides hypertension and high cholesterol. So many things to watch. I’ve had a knee replaced already and now both hips are involved too. I get up and get moving around and I have to make very conscious efforts to make myself stand straight up, otherwise, I’m hunching more. I feel like a mess. Sadly, everyone just tells me how young I am for so much wrong and how great I look and like I’m just a hypochondriac and making it up. I don’t usually share the whole mess anymore. If anyone asks how I am and seems to care, I only share the most current problem happening…..the whole picture is too much, even for me.

  • VickiN moderator
    12 months ago

    @olyndy, someone on our facebook page was just asking us to do an article on fatty liver because it can be associated with psoriasis and PsA (as is the vascular inflammation). How frustrating that it took so long for you to be diagnosed, and it sounds like you’ve been bounced around a lot. I’m glad you found us and this community! We’re here to lend an ear anytime 🙂
    -Victoria, Community Moderator

  • CathyD moderator
    12 months ago

    Gosh, this is such a lot to go through, olyndy, and from such a young age too. I am so sorry that you have been let down by doctors so many times 🙁 Do you have any idea how long you have to wait to go on the biologics?

    Thank you so much for taking the time to share your story with us. Please come by anytime you need information or support. Sending gentle hugs!

  • olyndy author
    12 months ago

    No I have no idea at all when there going to give me biologics. I’ve been waiting to hear from them for over 2 months. I wouldn’t mind but have been hit for six with my arthritis and have spent most of this time in bed. They say get up and you will feel better, but I don’t. A few hours on my feet and I’m in agony with my back. The bottom half and now the top which feels like someone has hit me with a hammer. I wish they would just hurry up as this is not living and my psoriasis is flaring up all over me as well, happy days

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