Recent diagnosis of psoriatic-arthritis

Hello.

Im new here. Last week I was diagnosed with psoriatic-arthritis after suffering a sore back, knees and ankles for several months. Now having to come to terms with this diagnosis and what the future will bring. Any suggestions or advice would be appreciated.

Comments

  • Shell_H
    Shell_H Moderator Posts: 405

    Hi @jonv6068, welcome to the online community!

    You used to be into fitness, especially running, but this year had to stop due to the onset of psoriatic arthritis in your back, knees and ankles.

    Versus Arthritis has actually just launched a new campaign about moving and exercising with arthritis. It only started this week, so not everything is up yet, but I'd suggest looking up the Lets Move information - it may give you an idea of what exercise you can do or try out to get the same feeling you used to while still being kind to your body and taking your new circumstances into account:

    I believe they are planning on having a you tube channel with different exercises too a little later.

    In addition, here's some information which is a little more general but may be helpful:

    The online community is a lovely place, the members are friendly and supportive. I hope you stick around and find more conversations to join in with.

    Good to meet you,

    Shell

  • SuzieBlue
    SuzieBlue Member Posts: 3

    Hello. I’m new here. I have been diagnosed with psoriatic arthritis after suffering terrible pain in my hips, neck, wrists forearms and shoulders. I was diagnosed 3 weeks ago. For a few days this week, I have struggled with crippling fatigue. It makes me so low. Does anyone else suffer with this and has anyone got any tips to help? Does it ever get better?

  • Ellen
    Ellen Moderator Posts: 629

    Hello @SuzieBlue

    Welcome to the Versus Arthritis Online Community.

    I see your diagnosis of Psoriatic Arthritis (PsA) is a really recent one and you are feeling crippling fatigue. I wonder whether you are on any medication to get your disease under control yet? It can take many weeks for symptoms such as you describe to begin to subside once you are on the right treatment.


    I am loathe to duplicate Shell's information in the post above and am sure you have already read the link and know what Psoriatic Arthritis is.

    However this might be of interest to you it's about fatigue:

    Do join in wherever you feel comfortable.

    Best wishes

    Ellen.

  • jonv6068
    jonv6068 Member Posts: 6

    Hello @SuzieBlue,

    My psoriatic-arthritis also gives me extreme fatigue. I’ve learnt not to fight it and to get plenty of rest including resting for a short periods throughout the day . I’ve also been trying to eat a very healthy diet and lose some weight and that seems to be help. My fatigue comes and goes so I would try not to worry too much as it may pass soon. I’ve also had to accept that my life has had to slow down and that seems to make things easier.

    Hope you find a way of managing it soon. Let me know of anything you find helpful.

    Jon

  • Hi everyone!

    Diagnosed with psoriatic arthritis Friday just gone !

    age 44 hairdresser and I have it in my fingers 😣

    Pain was very noticeable in April initially thought my fingers stuff due to not doing hair but it didn’t let up and could hardly hold the kettle or put my clothes away on hangers had a few g.p telephone appointments then referred to rhumatology initial appointment was telephone then xrays and Mri and diagnosis .

    ive got to have urgent appointment for steroid injects and talk about management I guess medicine I am a bit scared 😟

    I have had to stop working it’s so painful 😣

    Anyone have any idea what medication I’ll be on ?

  • bernie
    bernie Member Posts: 1

    hello everyone

    ive been diagnosed with psoriatic arthritis and am waiting to see a specialist, i have it in my elbows, fingers and ankles. some days i find it impossible to use my fingers, im scared about having to have injections, how long do they last for?

  • Aj_x
    Aj_x Moderator Posts: 192

    Hi @bernie

    Welcome to the Online Community Forum, so pleased you have found us and are able to ask questions etc.

    Have a look around the other forums as there might be other members that are going through the same thing as you.

    I have attached the link regarding the Psoriatic Arthritis. This is the same one that is towards the top of this page.

    AJ_x

  • Brynmor
    Brynmor Administrator Posts: 1,259

    Hi @bernie

    I can really relate to being worried about having injections 😶 I am one of those who "don't look" at any point when I see the nurse for anything like that!

    Having said that, I would really recommend reading this thread by @Hairobsessed123 about having first time steroid injections into her fingers. She is relating her progress which sounds absolutely fantastic!

    Best wishes

    Brynmor

  • Hi @jonv6068

    i was petrified when he said I was to have joint injections and told me to get someone to drive me home !!

    Actually turned out I had a jab straight into my bottom ! Which didn’t hurt at all I had no facial flushing and I slept really well try not to google steroid injections!!

    just recently been diagnosed with psoriatic arthritis myself ! It took 9 days for mine to kick in buts it’s fan not to have hot sausage fingers still have a bit of pain in my heels and under foot but it’s manageable! My rhumatology consultant said they last up to 2 months x

  • Nen150880
    Nen150880 Member Posts: 5

    I was diagnosed with Psoriatic arthritis when I was 20, I'm now 40. I missed out on quite a lot growing up. My advice as said in the other comments, listen to your body. If it says stop or slow down then do. Have lots of rest and don't let people make you feel guilty or lazy for doing so. Most people are uneducated about the affects of arthritis including fatigue and feeling low. Make sure you know your condition and know your limits. Get help and don't hide it or bottle your feelings.

  • @Nen150880 so refreshing reading this. Im 29 and have been suffering with PSA for many years now. The level of fatigue is dreadful and side effects from a new medication I'm on is making even the small things in life difficult. Im a dental nurse and have a 3 year old son, two of which are physically and mentally draining as you can imagine. I feel so guilty and a failure as a mum and colleague, I get the impression they don't fully understand how I'm feeling or have any knowledge about PSA.

    I work long hours and I'm off quite a bit at the moment. But the long days are zapping my energy and I'm really struggling with what to do long term. If anyone has any advice or suggestions please fire away. I'm feeling a bit lost!

  • jonv6068
    jonv6068 Member Posts: 6

    Hi @Hairobsessed123 , how are you finding the steroid injections?

  • Hey @jonv6068

    Took 9 days to kick in increased pain first 2 days then lasted about 5 weeks In total didn’t help with my heel pain at all !

    Im now on Sulfasalazine

    Been on it nearly a week so far so good no side affects yet ! Thursday I increase dose by another tablet so 2 x daily week 3 3x daily up to week 4 4x daily hopefully I’ll be able to tolerate them !!

    How are you coping with recent diagnosis?

    I’’m feeling more positive now

  • jonv6068
    jonv6068 Member Posts: 6

    Hi @Hairobsessed123 ,

    I’ve come to terms with the diagnosis now and learning to live with it. Still have good and bad days but they’re mostly good. How do you find the fatigue? I feel really exhausted after a day at work.

    I’ve been taking 90 mg Etoricoxib tablets for the last six months . When I saw the rheumatologist last he mentioned putting me on sulphasalazine so I anticipate starting that when I see him next as the current meds don’t help enough. Hope you can tolerate them and they help. Stay strong 🙂

  • I get forearm pain too, meaning the centre of the forearm, not a joint, for just minutes at a time. It's an unsetting "fullness" and looks very slightly enlarged in the middle until it stops. I thought it might be small minor blood clots of some kind as I also have had strange bruising phenomena since having covid, which has caused long-term blood clotting issues in some people as well as obviously being able to trigger autoimmune diseases such as PsA because any infection can do that. So I still wonder if it's related to the autoimmune conditions or a separate blood problem triggered by the same infection; no doctor I've mentioned it to has any idea what it might be.

    It's probably not dangerous, I just want to feel confident in my diagnosis and weird stuff like this that isn't mentioned anywhere relating to PsA makes me wonder. It's too intermittent, infrequent and brief to have any chance of getting scanned while it's happening, though the GP got one done just in case it was caused by something that could be seen even when it's not happening. Doesn't go red, just feels "full" and uncomfortable, mildly painful. I'm diagnosed "probable psoriatic arthritis" by a rheumatologist, but not proven as the ankle scans only found synovial thickening (ultrasound) and a "tiny effusion" (MRI without contrast, which I have since learned can't tell the difference between effusions and synovial thickening), but he doesn't know what might be going on in my forearm. Have you been told what that might be?

  • Hi @jonv6068

    sorry for late reply the fatigue is awful but I do rest when I need to !

    medication is going well I’m on 3rd 3week so 3 x tablets a day and tolerating them well .

    pain in heel has gone the last couple of mornings stiffness and swelling subsided loads !! I do have neck pain thou lol dr said it may be due to a crick or it cud be my PsA but I’ll give it a week and see how it goes !

  • Yarryman
    Yarryman Member Posts: 1

    Hi All, I have had psoriatic arthritis for over 22 years, yes there is life after diagnosis 😁.

    I wont lie it has been a roller coaster with a wide variety of good times and bad times, drugs that work and drugs that didnt work me. My initial advice would be to educate yourself on what the disease is, the name can confuse people and would be more appropriately called inflammatory disease. There many reports of of diet changes and reduced stress level changes all helping.

    For me the start was when my mum died, it could have been a trigger or just coincidence. I have had a number of drugs some cured me almost instantly but then stopped working after 3-4 years. I would recommend not to depend too much on steroids as you cant have them very often and they can have other impacts but help when the inflammation is at a peak. I am a fairly fit person and was a keen runner before it happened I stopped for a couple of years and then started slowly cycling again which is much gentler on the joints, swimming is also good. At the moment I am in a good place with a new drug and feeling good after 9 months of pain at a 2 or 3 out of 10, I am cycling and jogging a few times a week.

    Remember inflammation makes you tired and you need more rest, I have often a short 20 min sleep each day when I am inflamed.

    I hope this ramble helps someone and I am happy to chat and pass on my good and bad experiences. Its important to keep your mood up and remember there is plenty of life to be positive about once you get through any current issues.

    Des

  • ChrisK
    ChrisK Moderator Posts: 37

    Hello @Yarryman

    Welcome to our Versus Arthritis forum. Here you will find the members are friendly, helpful and empathic. They will answer any of your questions/queries as they relate to their own conditions.

    It is great that you have related your experiences of Psoriatic Arthritis from the beginning of your diagnosis. You have expressed various ways having this condition has affected your way of life, also the various drugs you have taken.

    Above there are several links to information Versus Arthritis produce on Psoriatic Arthritis and it may help you to have a look at these.

    Thank you again for posting about your experience of Psoriatic Arthritis. Looking forward to reading your future posts and hearing how you are getting on.

    Best wishes

    ChrisK

  • Flycatcher
    Flycatcher Member Posts: 25

    Great stuff, thanks for the "life after diagnosis" reminder... Sometimes I just catastrophise and think that it'll all just get worse and how did it come to this etc etc.

    But maybe adalimumab kicks in and I will again have days when I forget what constant low pain is...

  • Flycatcher
    Flycatcher Member Posts: 25

    I am giving myself time to rest but feel guilty for not exercising. I eat healthily but then get anxious and have bulimia relapse.

    I asked for CBT help via my GP, but have had an eating disorder for over 20 years since my teens.

    The idea of dieting, losing weight and exerting exercise makes me terrified! It's almost a ptsd thing.

    Dieting and obsessing with exercise is bad for me because of the eating disorder, but good for my health and joints. I've gained weight in lockdown, not obese but definitely heavy, plus 1 or 2 sizes.

    I'm conflicted about weight loss because of this. I believe inflammation and eating disorders are linked - research seems to be pointing that way.

    I'm telling myself that the goal is just to take consistent steps to make everyday a little better, but have been gripped by anxiety and relapse and ongoing flare up.

    I joined the community today and hope that just reading everyone's experiences will make me feel less isolated with Psoriatic Arthritis.

  • Flycatcher
    Flycatcher Member Posts: 25

    I've been getting strange bruises, too!

    There were two times last year when I could have had covid but not sure and vaccinated now.

    The rheumatologist and the GP said they don't know what's going on and suggested I just bump into stuff, which is untrue. Felt dismissed, as has been often been the case with getting medical diagnosis in my early 30s.

    I thought maybe it's related to inflammation but perhaps covid! But won't find out now!