Siobhan Donohoe - Living with Psoriatic Arthritis
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- čas přidán 29. 07. 2020
- "What have I done to get an old person’s disease?" was Siobhan Donohoe's initial reaction when she was diagnosed with psoriatic arthritis at the age of 38.
The public relations consultant and mum of two had been feeling weak and fatigued, and had a red rash on her hand; which she had put down to juggling motherhood with the stress of a busy work schedule.
Psoriatic arthritis can cause permanent joint damage quickly when not treated. Once damage occurs, it is not reversible and can cause significant pain.
"When you’re sick," Siobhan says, "people don’t see that. You look grand from the outside, but you’re constantly battling pain and you don’t know when it’s going to flare up, how it’s going to happen or where it’s going to take you."
Siobhan says that she changed her lifestyle and her attitude to her health after getting a diagnosis. “My life turned around, with the help of exercise, diet and the right medications. I treasure my energy and the good days, but remain mindful that I live with a chronic disease."
Further information about psoriatic arthritis is available on the Arthritis Ireland website, www.arthritisireland.ie.
Supported by Novartis.
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
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
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😁
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.
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.
It is NOT an old person's disease.
Exactly. My 2 year old just got diagnosed.
@@brendas9095 my baby too...
@@mgmshillong9845 ❤️
@@brendas9095With PSA? My gosh I’m 30 and it’s taking a toll on my life I can’t imagine a baby / child 😢
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!
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.
@@taylorscott7402 The video is about PSA? not psoriasis...
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.
Must be nice to have help
Love your last statement.
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.
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!
Fair play girl
just got my diagnosis and this helped thanks
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...
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 😞
@@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😸
@@cjohns3948 Hello sis, Use Dr omo Herb's very good and active it will help you get rid of them fast
@@brendas9095 ❤️
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
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.
Any thoughts on Enbrel? How long did it take to work?
Thanks for the story. What kind of meditation u use. What’s the name of it?
I wish I was able to go for walks again. 😢
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.
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?
@@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.
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.
Im now on a bilogic
How to know that we have pa which test can tell the psoriatic arthrities
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.
Im trying sooo hard my family sucks. I lost numerous jobs over this treatment n food is expensive
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!
❤️
Can you please tell psa symptom I think iam suffering iam 17
Exercise through it? Rediculous.
Agreed. Yeah, that's not a thing. 🙄
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.