Lynda is one of the leaders of the support group that I attend locally. Not everyone in the group has PsA, but Lynda is one of the handful of folks who do. I asked her to answer a few questions about her experiences with PsA.
When did you first start experiencing symptoms of PsA? How old were you?
It manifested when I was 40, although I may have had minor symptoms a few years prior.
How long did it take for you to receive your diagnosis?
It took 12 years.
What do you think delayed the diagnosis?
Idiot doctors is what caused the delay! Granted, this is hard to diagnose. They thought I had MS or Lupus. But when they never had any positive test results, they said fibromyalgia. During this time I saw 2 rheumatologists and the word arthritis never came up - I consider them the idiots!
How has your disease changed or progressed over time?
I had lots of crazy things in the earlier years, like "burned" skin rashes, psoriasis, and weird rashes on my legs. Smells, noises and lights bothered me. It was as if I was already in a sensory overload, so I couldn't add any extra without what I now know as causing a flare. I couldn't walk up stairs without my whole head and neck locking up. At strange times I got diarrhea. I couldn't tolerate any exercise (still can't).
It now seems to have settled in. I think my joints have all been damaged, and the enthesitis is what seems to cause the trouble on my spine. If I push, pull, or over-do it, my spine inflames and then the muscles get crazy nearby. No more skin reactions. I only get diarrhea now when the muscles in my midsection spaz out and tighten up. Of course, I can get a lot of muscles involved and then I'm in bed with hot muscles and no energy and lots of pain: a flare.
What combination of medications, treatments and tactics has been most successful for you in managing your PsA?
It is just that, a combo that works, not any one thing. Massage and heat, stress reduction, and careful movements (like limiting stairs). NSAIDs, DMARDs, pain and nerve calmers. Plus muscle relaxants and of course the anti-TNFs work for many people! And I keep prednisone to try and stop flares!
Have you ever experienced any periods of remission? If yes, what do you attribute that to, and if no, do you hold out hope that you will have a remission in the future?
I seemed to have a remission at the worst point in my life, after a divorce. I guess I needed to be free from that one. I can't answer about the hope part. I am trying LDN (low dose naltrexone, a medication sometimes used off-label as an alternative treatment for PsA and other autoimmune diseases), so that suggests I am acting on hope, but I just live each day the best I can. I don't hope too much.
Do you expect to see a cure for PsA in your lifetime?
A cure? Maybe, again, I don't live my life on hope, nor do I on a cure.
What is the most important advice you can give to someone who was recently diagnosed with PsA?
Know that it is a combination of things that help! There is no one miracle! You have to get together a program of all of them to live somewhat normally! That goes back to the heat, massage, dmards, etc. answer. Know that this doesn't kill us. We just have to have a program and adapt our lifestyle.
Thanks Lynda!
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