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Fortunately, although PF leaves you short of breath, it is not painful.
But the connective tissue disease that not infrequently accompanies PF can be very painful.
Just after my diagnosis of PF, I was also diagnosed with psoriatic arthritis.
Similar to rheumatoid arthritis, except that it starts with psoriasis, the symptoms and pain can be acute.
All attempts to treat me with immune suppressant drugs were a dismal failure.
These autoimmune diseases with which I am afflicted are caused by an immune system that is too strong, causing my immune system to attack my own body.
Isn't it amazing that those with HIV-AIDS have too weak an immune system and those of us with autoimmune diseases have immune systems that are too strong.
Too bad we can't swap a little of our system for theirs.
Because I didn't respond to the immune suppressant drugs, my arthritis continued to attack my joints with excruciatingly painful consequences.
Although I was being treated by a board-certified rheumatologist at a major teaching hospital, pain management was not in his area of expertise.
I was offered pain meds, primarily oxycodone which at first I resisted.
I'm not into drugs and the idea of taking drugs popularized by spoiled Hollywood offspring was not appealing.
However, I soon accepted the wisdom of my doctor that I needed pain relief and what anyone else might think of my taking a narcotic was totally irrelevant.
So I took my oxycodone and received some relief.
But not a whole lot and not for long.
Later I moved up to a higher dose of oxycodone and when that no longer worked, I was offered dilaudid.
When the dilaudid prescription had to be increased, I could see the handwriting on the wall.
Soon that would no longer work and then what.
More pain, more sleepless nights.
Waking up with pain, living with it all day and going to bed with it all night.
Fortunately, my new internist, a compassionate woman with whom I can easily communicate came to my rescue.
When the dilaudid did not produce the results she hoped, she suggested a pain patch.
I had never heard of fentanyl and didn't know what a pain patch could do.
My doctor explained that the patch is put on your body and releases pain-relieving medicine over a 72-hour period.
We started out with a 25 milligram patch which gave me some relief.
But I still needed to take diluadid pills three times a day.
And that was okay as long as I received relief.
But after I had to be taken by ambulance to the hospital twice in the course of several months for excruciating pain, it was time to take a new course of action.
So now I'm on a 50 milligram patch and miracle of miracles, I rarely need to take dilaudid pills for breakthrough pain.
I can actually get through the day pain-free.
Of course, there may come a time when the 50-milligram patch doesn't work but that's okay too.
Because there are stronger patches and different pain relievers.
As one doctor in the hospital told me, "no patient should ever suffer with pain.
"There are too many alternatives.
In fact, there are so many alternatives to living with pain that some doctors have devoted their practices to pain management.
No matter what illness you may have, chronic pain doesn't mean you have to grit your teeth and bare it.
And suffering, whether verbally or in silence is not the mark of bravery.
When we are truly brave, we have the courage to ask for help so we can make the best use of whatever time we have left in this lifetime.
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