Newly diagnosed

Posted Sun 26 Jun 2022 11.48 by Mike10 (edited Sun 26 Jun 2022 12.01 by Mike10)

Hi all. First time posting. I was finally diagnosed with Psoriatic arthritis a little over a week ago. I am 34 now and Up until around 3 years ago I was very active playing football, weights, swimming and running a couple of 10ks a week. One day I began to experience pain in my left ankle and foot and my ankle swelled up. After a few weeks of this happening I went for x-rays etc. to cut a long story short I was finally told during the first lock down in March 2020 that it was more than likely I had psoriatic arthritis (I have suffered with mild psoriasis since I was a child). However, with lockdown I never received a follow up call and my wife and I had twins in 2020 and have had another baby February this year. So I have had no time to worry about myself. The pain has spread now to both ankles, both knees and my elbows. My lower back is also very stiff and painful if im standing for any length of time or if I’m trying to hold my baby girl. Just three years ago i was lifting weights now I can’t even hold a 12lb baby for long. I went back to the doctors who agreed it was PSA and sent me to a specialist physio who agreed and diagnosed it as PSA. I’m managing the pain with naproxen and to be honest although I’m in pain every day I can cope most days. I’m still able to work etc but it’s the fatigue that’s killing me. I’ve never felt anything like it. All of my energy just suddenly drains from me. I don’t know anyone else with this illness so just looking for some advice on the following: .does this sound like psoriatic arthritis? All my bloods where clear but I believe it is . Will it get worse? Will it begin to effect my joints and will they deteriorate? . How do people deal with the fatigue? With 3 babies sleep Or rest is hard to come by? . How did people deal with explaining to others how it felt. I feel like people don’t understand how much pain I’m in or how tired I am and I wish they could just feel it for one day so they could understand. I feel quite down lately and like I’m quiite alone I’m feeling how I do. Thanks for reading If you made it to the end and apologies for the long post

Posted Sun 26 Jun 2022 14.39 by StorminNorm
Hi I am a 50yr old male who has been living with severe psoriatic arthritis since the age of 29

Hi Mike firstly it sounds to me like your disease is active and elevated so you need to speak to a specialist quickly who can get you on the correct course of treatment to calm it down. I was diagnosed at 29 I'm now 50 and like you was very active in life and at work unfortunately my disease was very aggressive and hard to control and this in turn did a lot of damage to my joints so getting on the right course of treatment is very important luckily there are some amazing drugs available today and your specialist should be able to find one that eases your pain and alleviates a lot of your symptoms getting the disease under control is of most importance as when it is very active is when it does the damage also speaking to a dietician can help as slight changes to your diet can help with a lot of symptoms and the fatigue unfortunately as your immune system is active it can feel like you have the flu and fatigue is a very common symptom it will take time but slight changes to your routine, diet and medication can help your life will become a balancing act it will just take time for you to adjust and get used to this illness but stay positive for you and your family yes it is very painful and very tiring at times but it isn't life threatening and you will soon learn how to live with this disease but it is a silent disease apart from your close family and friends everyone only sees you at your best out with the family and smiling they don't see the pain and bad days but don't keep it to yourself it's important to talk it out with your family and friends so they understand. I do hope you can get on some treatment and get it under control so speak to your doctor and get referred to a specialist if your not already regular blood tests and the right treatment can alleviate a lot of your symptoms.

Posted Tue 28 Jun 2022 15.09 by Mike10

Thank you for taking the time to reply. Your advice has been really helpful. I’m due an x-ray on my back and further bloods in a couple of weeks. I will definitely speak to the physio I am under about the things you have suggested. Thank you again for your help.

Posted Sun 2 Oct 2022 14.47 by Ks

Hi Mile10, congratulations on your growing family! I have just had my ‘impression diagnosis’ , aged 50. I was diagnosed with late onset type 1 diabetes at the start of lockdown so can totally understand your initial experience with getting support. Just wondering how you are getting on now? I’m at the point of constant pain with acute pain if I try to actually do anything - I can’t take oral steroid treatment because of the diabetes but getting an injection into the worst elbow next week - otherwise no treatment yet. I’m hoping you’ll answer with some positive news on your progress and advice for a fellow newly diagnosed. K

Posted Fri 4 Nov 2022 22.36 by Elaine H

Hi Mike Just found this forum.I have had mild psoriasis since a child .I’m 58 now . I have visited GP numerous times over the years with plantar fasciitis,painful back fingers and toes. This steadily got worse but normal bloods Finally got to see a rheumatologist who diagnosedPsA .commenced on methotrexate ,plaquenel ,naproxen . Have joint erosion all distal joints fingers and toes on X-ray and new bone formation.two swan neck toes ( unusual) Feeling lot less fatigued and able to engage in life …don’t be put off and get the right medication as it helps enormously and prevents further joint damage 😀

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