Hello from a Newbie!

BellaM

This is officially my first post here. I was recently with axial psoriatic arthritis/ankylosing spondylitis mixed with Rheumatoid. I guess my images and clinical presentation show it’s the PSA that’s really taking it’s toll on me, but the anti-CCP numbers suggests the RA as well. It took a long time to get a diagnosis. I don’t actually have psoriasis on my skin. My psoriasis went straight to my nails when I was about 13 years old. For years and years doctors assumed it was a fungus and tried everything they could to clear the fungus that had taken over all of my nails on my hands and several on my toes. It took 30 years for me to finally find a dermatologist that thought to finally take a sample and send it in. I guess that’s what delayed my diagnosis? I used to be very active with running and triathlons and I just started falling apart. Three knee surgeries, and a hip surgery later (which doctors all assumed was from overuse training), I started thinking there must be something wrong with me. The fatigue was insufferable, and I could no longer do a simple, slow run without being in pain and then being so exhausted afterwards I could barely move. The enthesitis is what really got me. I went from being an athlete to a couch potato, because it hurts to walk. Any real walking causes my Achilles tendons to flare severely. So…here I am today! It’s nice to find a community that knows what you’re going through. I have so many questions about how to get active again without being in pain and I would love to find success stories of treatment. I am on meloxicam and methotrexate and so far I feel no relief. Sorry this ended up being so long! I guess I had a lot to say! 😂

noddingtonpete

Hello @BellaM and welcome to the Community. We are friendly and supportive and I hope that will be your experience as well.

I understand that you have psoriatic arthritis and ankylosing spondylitis and are looking for some tips on how to get active again. There are a lot of people on here who have similar experiences, going from being active and then finding it hard to do. I've put a couple of links in below from our website which I hope might be of some help.

https://www.versusarthritis.org/about-arthritis/exercising-with-arthritis/lets-move-with-leon/

and

https://www.versusarthritis.org/news/2020/january/adjusting-to-life-with-psoriatic-arthritis-has-been-a-journey/

Please keep posting and let us know how you are getting on and do have a look at our website, it has a lot of useful information about arthritis, treatments and much more.

With best wishes

Peter (moderator)

jonr

Hi @BellaM and welcome!

There's a fair few members on here who've previously been athletic or very active and their condition now means they've had to make big changes to their lifestyles, it's hard to give up the things we love doing as well as coping with the mental impact and effects on our general wellbeing.

Fundamentally, the keys to regaining a better quality of life lie in 2 main areas - pain management and exercise/physio, the 2 go together. Low-impact exercise and physio is necessary to strengthen the tissues and tendons surrounding weakened joints but many folk find it impossible without decent pain relief.

There is a lot of info on this website about supplements, diet, alternative therapies and pain-relieving aids which could help supplement your prescribed meds. It's a bit trial and error so a case of experimentation.

My own condition is different to yours - I have bone-on-bone OA in both knees aged 56, awaiting a double total knee replacement but I'm managing to lead a very active life. I've swapped my daily 10k runs and Badminton for Spin Classes, cycling, swimming and walking. I've become friends with the weights room at my local gym where I use the various machines to build mass in my knees, quads, ankles and glutes. A treadmill set at 15% works the calves as does the stairs machine.

You mention your Achilles plays you up - I use a deep tissue massaging gun (it's my hamstrings and ACLs which give me gyp), to help keep them supple and Acupuncture has helped enormously to reduce my background pain and the amount of flare-ups I get.

Hope this isn't patronising in anyway, but perhaps there's a few things here which might be worth a look, as I say - this is a fantastic website with everything you need to help manage your condition (apart from drugs!)

Cheers,

Jon