Pain as a moving target.

Standard

THIS is a tricky one. My experience with this, especially as it pertains to the FM, is that the pain kept changing. It changed in quantity (scale of 1-10; quality—burning itching, stabbing, aching, pinching, dull, sharp, etc.; frequency—how often I had that type of pain; how often I had any pain at all, and finally the location of the pain. For more information on Fibromyalgia, see the resources page following the blog.

Some days, all of these things changed a lot or a little. Other days, one or two qualities (of the things listed above) would change. I never knew what to expect. It became a real problem when acetaminophen TYLENOL ™ or ibuprofen ADVIL ™) no longer worked on their own and I had to seek stronger pain medication.

My PCP referred me on to a rheumatologist for management of my symptoms. The pain then changed again once I got a diagnosis of FM and began taking LYRICA (r). I’d take the ‘starting’ dose for three weeks. During that time, I had to wait for seven days for the medication to do its job (can you spell T-O-R-T-U-R-E?), get relief for 7-10 days and then the pain would return, seemingly stronger than before. I would have a follow up appointment at the end of the three weeks to see my rheumatologist, who would then increase the dose by 50mgs or so and then the pain management cycle written above would repeat itself. This took about three months.

I went through this until the maximum dosage was prescribed, which is 400mg per day. I couldn´t tolerate that, meaning it doped me up so badly that I couldn´t function. I had to function at a very high level at my NEW job. BE CAREFUL!! Make certain you can function within the limitations that these pain medications create. You don’t want to hurt yourself or anyone else while ‘operating heavy machinery,’ as the medication pharmacy packaging cautions.

I reduced the LYRICA ™by 100mg with my rheumatologist’s approval. Let me iterate here that I don’t shy away from telling my healthcare providers that I am a registered nurse. It lets them know that I am not medically ignorant, that I’m paying attention to what they’re doing and that I may question what they’re doing. On the other hand, sometimes I have to remind them that, while I am an RN, I am their patient—first and a nurse secondarily. In other words, “Tell me what I need to know even if you think I may know it.”

During the time we were searching for the ‘magic’ dose, I told him that the pain really never went away. He told me something very profound at that point that cut me to my core, but is a reality of pain management, for FM anyway, “The goal is pain reduction at a level you can live with, not being pain free.” I have since seen that in print somewhere and I cringe internally every time I think about it.

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