How do I get my Rheumatologist to listen ?

I always figured 10 was shot up laying in a gutter or an appendectomy without anesthesia. . 9 is childbirth without drugs. So I rate always there, day to day RA pain 4 or 5 and bad flares a 7 or 8. 🙂

I have or have had 10 on this list. No wonder my pain threshold is so high now.

I hear you! Reactive arthritis caused severe back pain but it wasn't my worst pain ever. Trigeminal neuralgia (TN) gave me my perspective on what severe pain was. I called TN "facial electrocution." I couldn't even answer the pain scale question when TN flared. My wife had to explain to the emergency room doctors why I couldn't answer any questions. Trying to speak only increased the voltage applied to my face

I tried to manage TN with prednisone. A neurologist said prednisone wasn't used as a treatment for TN so I decided to treat myself. I called TN my "inflammation alarm."

I felt vindicated when the neurosurgeon said prednisone was probably helping the inflammation and swelling that was happening in an area near my brain stem.

I had a cousin who had tgn. It was horrendous for her.

Hi @teddyz, I haven't seen one and have always been told it's subjective (0 to 10) with 0 being no pain and 10 being something like hurts like you know what and I just need it to stop right now! I did find a couple of them to help you come up with a number. The second one is easier to relate to - just pick one of the faces.

--- Neuropathic Pain Scale (NPS): https://www.mdcalc.com/calc/3626/neuropathic-pain-scale-nps
--- Wong-Baker FACES Pain Rating Scale: https://www.painscale.com/article/wong-baker-faces-pain-rating-scale

As a nurse, I asked the "rate the pain on a 1 to 10 scale" all the time. I would say 9 out of 10 patients said the pain was a "10." I reminded patients that 10 was the worst pain they had ever felt in their life. If you are hospitalized and want something for pain you better rate your pain at least a "5."

Pain is subjective but a "3" is tolerable in my interpretation. It is "normal baseline pain" to me.

I hear you about asking a real question about pain. For PMR, I usually brushed aside the numeric pain scale question in favor of a "relative age scale" For example, I would say that I felt like I was 100 years old when I was only 60 years old. To capture the amount of stiffness along with the pain, I would say rigor mortis was setting in.

I don't think that "no pain" is a realistic goal. That's one reason why I separate pain into "normal pain" and "abnormal pain." I understand that any pain is abnormal for many people. When we have an autoimmune disorder, that pain falls into the abnormal category. In case someone didn't understand--- I would explain that the autoimmune pain happened for no reason at all.

I think much was learned from people in the past who had RA and were treated with prednisone. I'm grateful for those people simply because they were the ones who went through the research trials until better options were eventually found.

I don't know what to think about the current state of research into better treatment options for people with PMR. The idea of taking prednisone and waiting until PMR burns itself out seems somewhat obsolete to me. I understand the reasons why I took prednisone for as long as I did. However, I seriously doubt some cases of PMR will ever burn out entirely.

PMR seems exactly like what I was told originally about reactive arthritis. I was told reactive arthritis could be short-lived and only happen once, it could start recurring and god forbid, it could become chronic.

Even people with the various types of spondyloarthritis have benefited of the experiences of people with RA. The treatment is basically the same as RA. I don't know why Humira didn't work for me and for now at least, Actemra does work. I guess the trial and error approach to treatment is still the only approach. Either that, or many people with PMR have inflammatory arthritis or possibly both.

The problem is that most of these complex maladies aren't well defined. Any diagnosis seems to be nothing more than an "educated guess." I just don't want prednisone to dictate every aspect of my life any longer than it has already.