How A Lack of Pain Relief Options Impacts Psoriatic Arthritis Patients
Psoriatic arthritis is such a unique condition. Unless you're looking for it, rarely will you find someone who also lives with this distinct condition. Finding others who live with this condition is important to me - so I am a part of a few different PsA communities.
A common complaint among those with psoriatic arthritis
These communities offer a safe space for people to feel seen, to share their hopes, worries, fears - and even complaints. Would you like to know the most common complaint? It isn’t the lack of treatments available because there are a lot. Nor is it the cost of treatments, but it is a close second.
It isn’t even that they are forced to fail certain treatments before insurance approves the use of a more effective treatment. No, the thing psoriatic arthritis patients complain about most is the lack of pain relief options available.
Getting the pain relief medication my body needs
Once upon a time, my team of doctors prescribed opioids to help reduce my pain from all 3 of my chronic conditions - psoriatic arthritis, fibromyalgia, and endometriosis. Although my body wouldn’t allow me to take them daily (I’d break out in hives if I did), they did provide much-needed relief a few times per week.
Without them, I wouldn’t have survived the first decade of my chronic illness life.
Then in 2010, I moved to California, where I couldn’t find a doctor who was willing to treat my genuine and debilitating pain. It doesn’t matter how many varieties of pain medications are on the market if a doctor is unwilling to prescribe them. Refusal to prescribe is just one example of pain relief unavailability.
Turning to alternative treatments
The lack of help from the medical system forced me to turn to alternative and natural pain relief sources. While my body and chronic illnesses respond better to natural and alternative options, I literally cannot afford to utilize all that my body needs.
For the most part, every effective pain relief treatment, therapy, and product I have used has significantly impacted my finances. Insurance rarely covers them, and it is only after an exhausting battle of a patient pleading their case that they may even consider covering a portion of the cost.
Lack of availability doesn’t mean that there aren’t any effective pain-relieving medications, treatments, therapies, or products. What it means is that doctors refuse to prescribe them or health insurance providers don’t cover them.
We are seekers of physical comfort
When doctors refuse to prescribe pain relief medicines, patients start looking for a physician that will. Then as in my case, going from one doctor to another in dire need of pain relief, we are labeled drug seekers. In reality, we are seekers of physical comfort, not a mental high.
Lack of income prevents many chronic illness patients from purchasing alternative and natural pain relief options. It has been ten years since I was forced to take pain management into my own hands.
Although I can afford to use more products and therapies than I did ten years ago, I still cannot afford everything that would improve the pain my body experiences.
Finding pain relief on a budget
Desperate for relief, my husband and I had to make difficult decisions. Decisions like slashing our food budget, juggling bills by only paying those marked final notice each month, and hoping nobody ever invited us out to dinner because there were no funds for stuff like that.
Society believes that patients like us get everything they need through government assistance. But that is not true. The only way I would have qualified for aid would have been if I had divorced my husband because he made “too much” money.
When pain relief becomes unavailable, patients become desperate and do things they wouldn’t have done if not consumed by pain.
Here's why those with PsA deserve pain relief
First off, we function better with less pain. Without adequate pain relief, we struggle cognitively. It is next to impossible to make an informed and wise decision when every inch of your body is screaming out in pain.
Chronic pain affects more than our bodies. It has a significant impact on our minds as well. Lack of pain relief forces some to quit working. For others, it chips away at their will to live.
I wish there were an easy solution to providing effective pain relief options. We can rule out doctor shopping because that rarely ends well for the patient. Even if they find someone willing to prescribe pain medication, they run the risk of that doctor not being knowledgeable about their condition.
Find the courage to speak about your pain
The best advice I can give is to speak up. Talk to your medical team. Journal and provide daily documentation of how the lack of pain relief affects your life. And not just the physical aspects; make sure to cover how pain impacts your brain too!
Share your story! We think everyone knows what we are experiencing, but they do not! By sharing your story and battle, you help educate friends, family, and even the medical community. If you are comfortable doing so, share it on your social media channels.
Another great place to share your battle is here in the psoriatic-arthritis forums and patient stories.
This or That
Which type of weather tends to be more painful for your psoriatic arthritis?
Will you help others by taking our Psoriatic Arthritis In America survey?