Siobhan Donohoe - Living with Psoriatic Arthritis

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  • Опубліковано 26 гру 2024

КОМЕНТАРІ • 49

  • @joanaustin121
    @joanaustin121 Рік тому +4

    Beautiful, thank you. After I had my daughter, 37 years ago, I found I was in so much pain I couldn't hold her. I was diagnosed with what they called "the trashcan disease" or fibromyalgia, meaning, if it didn't how up as rheumatoid arthritis or lupus they threw it in the fibro bucket. Now, at years old I've been diagnosed with psoriatric arthritis. Your piece is encouraging. It doesn't matter the age or pain, we all struggle - BUT there are answers today in what can be done to alleviate our pain, fatigue and depression. Thank you for expressing these solutions.

    • @shelleyw5951
      @shelleyw5951 Рік тому +1

      Hopefully you've ruled out hyperparathyroidism. I was diagnosed with Psoriatic Arthritis in 2018. In 2020 finally my GP caught, on my blood work, and on repeat blood work that my calcium was elevated along with my pth hormone, and vitamin D is low. Because of covid I had to wait until March 23 to have it removed by a very experienced surgeon in British Columbia Canada. It has made a world of difference I was in so much pain the last three years that I could not even get off the couch outside of short work periods and my bones were being eaten alive. My adenoma that was removed was 2.1 cm. That means I had it for at least 10 years. Hopefully this has been ruled out in your case because people with this are quite commonly diagnosed with psoriatic arthritis. I do believe I have PSA, but a good 60% of my agony was coming from the parathyroid tumour. I'm now taking calcium with vitamin d and vitamin K2 and I'm already quite a bit stronger two and a half months out from surgery. I can finally lay on my side again without agony.

  • @karenb8715
    @karenb8715 4 роки тому +19

    So lucky to have access to the rehab side. I was diagnosed in my early thirties I’m now mid fifties.Nearly everything I have learnt or found out has been through research. Consultants etc are very much about the medication in my experience and not so much everything else. It took me years to realise that I needed to pace myself or I would flare and to not feel overwhelmed with guilt and feeling lazy for doing this. Brilliant to see this has improved at least in some places xx

    • @Erdem-x1e
      @Erdem-x1e 5 місяців тому

      How is your general joint health now (knees, shoulders, hips, wrists, arthritis, bone to bone)? Can you run or squat deeply? How old are you

  • @bigdog1926
    @bigdog1926 Рік тому +4

    When someone with psoriatic arthritis says that "the joint pain can be anywhere," it means that it can change daily, sometimes even hourly. And, joints aren't the only problem. Entheses, heart valves, eyes - any body part that contains collagen can be affected.

  • @TauTiaLDouglass
    @TauTiaLDouglass 4 роки тому +28

    It is NOT an old person's disease.

    • @brendas9095
      @brendas9095 3 роки тому +1

      Exactly. My 2 year old just got diagnosed.

    • @mgmshillong9845
      @mgmshillong9845 3 роки тому +2

      @@brendas9095 my baby too...

    • @blahblahnana1455
      @blahblahnana1455 3 роки тому

      @@mgmshillong9845 ❤️

    • @kayxgee1
      @kayxgee1 Рік тому

      @@brendas9095With PSA? My gosh I’m 30 and it’s taking a toll on my life I can’t imagine a baby / child 😢

  • @mishca5116
    @mishca5116 4 роки тому +27

    This is a good video - positive. Exercise and movement and self care, especially for the caregivers in families are key, I think. But - not all people with PsA can lift such heavy weights or do yoga poses that require toe flexion. I've exercised almost every day of my adult life but hands are in such pain - despite my strong muscles - can no longer lift a heavy weight. And toes are fused completely so can't bend them in planks or lunges. I would not want public to see this video and think all people with PsA are so able bodied or should be!

    • @GailOwens
      @GailOwens 4 роки тому +1

      I gave PSA I think she is dk Wallis her health care system. We in IK our health care is fo bad we get disabled before they do anything.

    • @cjohns3948
      @cjohns3948 3 роки тому +1

      @@taylorscott7402 The video is about PSA? not psoriasis...

  • @karav2879
    @karav2879 10 місяців тому +4

    Thank you for sharing your story! You are so fortunate to have spent two weeks in rehab to learn how to deal with PsA. My rheumatologist just does meds-nothing more. We need advice on what we can DO to help ourselves, especially when in a flare.

  • @Ciannaxx1234
    @Ciannaxx1234 3 роки тому +8

    Having a flare is the worst thing in the world, I’m only starting to feel a bit normal after 2 years of being diagnosed

  • @DominicWong
    @DominicWong 4 роки тому +12

    Hi fellow PsA patients. I can relate to the fatigue which feels like someone has dropped voodoo on me. I've started treatment on biologics being guselkumab (Tremfya) on my 2nd dose. Pain and fatigue free for 20 days tho still have days of flares where it comes back. Wishing everyone that you will find a path to manage your PsA😁

  • @MsMtwardy
    @MsMtwardy 4 роки тому +7

    Must be nice to have help

  • @cjohns3948
    @cjohns3948 3 роки тому +15

    I could do all that at 38....lift weights etc...but I've had PSA since I was 7 years old.....and 53 years in.....things have gotten dramatically worse....I think you need to take age into consideration. And degree of PSA....Some people have it way worse than this lovely woman. I've been in wheel chair etc....nothing cures genetics...

    • @brendas9095
      @brendas9095 3 роки тому +5

      My 2 year old just got diagnosed with it.
      I am so sorry to hear about your journey with PSA, I pray hers won’t be so difficult 😞

    • @cjohns3948
      @cjohns3948 3 роки тому +4

      @@brendas9095 Get a really good doc. If there is such a thing...a pediatric rheumatologist. The treatments today are so much better than they were years ago, so it may not affect her as badly....best of luck. Hugs to your little one😸

    • @juliangracia6068
      @juliangracia6068 3 роки тому

      @@cjohns3948 Hello sis, Use Dr omo Herb's very good and active it will help you get rid of them fast

    • @blahblahnana1455
      @blahblahnana1455 3 роки тому +1

      @@brendas9095 ❤️

  • @Susan.I
    @Susan.I 6 місяців тому +1

    I wish that we had rehab in the USA. Yes, my house is a mess by my standards. I’m waiting for Otezla to work on my swollen feet and aching body!

  • @marcydobbs1653
    @marcydobbs1653 7 місяців тому

    Love your last statement.

  • @bmc5075
    @bmc5075 4 місяці тому +1

    You dont need to explain yourself
    Im under the care of cragavan hospital wer needs must im not didnt go private i hope u fèel better the pain is awful but the tiredness is awful your right self care is right im on biologic

  • @johnnyreyno9703
    @johnnyreyno9703 2 роки тому

    Fair play girl
    just got my diagnosis and this helped thanks

  • @blahblahnana1455
    @blahblahnana1455 3 роки тому +5

    I couldn’t lift a weight if my life depended on it it’s flair up after flair up I’ve now got thyroid disease the pain is astronomical cruel disease

    • @Pearlisms
      @Pearlisms 2 роки тому +1

      Yes. These stories are warm but all stories are different all won’t be lifting and all won’t recover quickly from over doing it. She is blessed.

  • @Nandocupra
    @Nandocupra 10 місяців тому

    Thanks for the story. What kind of meditation u use. What’s the name of it?

  • @willielarsson9651
    @willielarsson9651 2 роки тому +1

    I managed to get myself off the harsh PA drugs, but unfortunately some joints have been irreparably damaged, the worse being limited neck rotation, but apart from that I've came out the other side. Horrible disease.

    • @aimeeb2820
      @aimeeb2820 2 роки тому +3

      WillieLarsson I was very reluctant to take the toxic meds to combat this disease but despite the toxic side effects they made my life more managable so i am interested if you would share, what it is you plan to use instead to manage this horrendous disease? Diet?

    • @kayxgee1
      @kayxgee1 Рік тому

      @@aimeeb2820 Diet, supplements, and exercise helped me clear a bad PA flare up, but it just takes longer than taking the PA prescriptions. Which can be frustrating but all boils down to doing what’s best for you.

    • @gucci9566
      @gucci9566 Рік тому

      I am also suffering from this arthritis since in my thirties.Noe I am 53.Currently doctor put me on TNF inhibitor but I am afraid of it's toxic effects.I always have sacroilitis and tendoachilitis.Worst form arthritis is this.

  • @mmamallama1827
    @mmamallama1827 Рік тому

    Any thoughts on Enbrel? How long did it take to work?

  • @NiinaSKlove
    @NiinaSKlove 7 місяців тому +1

    I wish I was able to go for walks again. 😢

  • @bmc5075
    @bmc5075 Рік тому

    Im now on a bilogic

  • @MsMtwardy
    @MsMtwardy 4 роки тому +5

    Im trying sooo hard my family sucks. I lost numerous jobs over this treatment n food is expensive

    • @cjohns3948
      @cjohns3948 3 роки тому +6

      Live the best life you can....do what your doc suggests, see a rheumatologist,. We do live differently and have different experiences because of P and PSA. Ironically you need to develop a thick skin😁. Sometimes friends and family coworkers need years to understand. Some never make it. But be your own best friend!

    • @blahblahnana1455
      @blahblahnana1455 3 роки тому

      ❤️

    • @Gadgetech123
      @Gadgetech123 Рік тому

      Can you please tell psa symptom I think iam suffering iam 17

  • @nollaigbeamish1053
    @nollaigbeamish1053 Місяць тому

    I found this video could get one down.....wouldnt watch it a second tjme. Weight lifting? I cant walk some days.

  • @ParrotFarmSA
    @ParrotFarmSA 3 роки тому +6

    Exercise through it? Rediculous.

    • @pacopetepnw3434
      @pacopetepnw3434 Рік тому +1

      Agreed. Yeah, that's not a thing. 🙄

    • @suepluto3714
      @suepluto3714 Рік тому +3

      Yep. When I was younger, sure, I could "exercise through it." That plus ample use of naproxen.... and so it continued, until about a year ago when the stiffness and pain became so progressively awful that I finally relented and decided to try biologics. (I have always been leery and skeptical about allopathic medicine.) I am now at Day Five of Amjevita injections, which is a Humira biosimilar (look it up if you don't know what I'm talking about.) Last thing I expected was to have my pain and stiffness decrease by well over 50% in just a couple of days, but that's what happened. We shall see if this proves to be a long-term solution....desperate times call for desperate measures.

  • @Rangoli2020
    @Rangoli2020 3 роки тому

    How to know that we have pa which test can tell the psoriatic arthrities

    • @cricketlee5937
      @cricketlee5937 3 роки тому

      Plain X-rays can help pinpoint changes in the joints that occur in psoriatic arthritis but not in other arthritic conditions. Magnetic resonance imaging (MRI). MRI uses radio waves and a strong magnetic field to produce very detailed images of both hard and soft tissues in your body.