I’m thinking maybe I’m not explaining my pain to my rheumatologist correctly since she thinks I have nerve pain issues. I’ve taken myself off pain meds to really chronicle my pain. On Enbrel shots weekly.
My pain is in my ankles, knees, wrists, sometimes feet/hands, hips. It feels like aching pain with pinches of severe pain at time in the joints. The areas also feel like they are swollen and uncomfortable but never visibly feel swollen…at least I’m not a good judge of that. Exhaustion & trouble with sleep too. When I’m too active in the yard or bike my body screams all over.
Is that how you would describe it? I’m so confused!
For me, the pain is hard to describe, but that sounds accurate. Aching, sore, then sharp and piercing. Extreme fatigue. Weak and burning and constant or intermittent. Crushing, squeezing! One time I told my rheumy my fingers felt fizzy. He gave me this confused look and asked, "what does fizzy feel like?" Maybe that's tingling, but they felt squished and fizzy to me. Lately even with Tylenol pm I've been waking up a few times during the night and almost never get more than six hours sleep. Didn't even realize I was probably waking up because of the discomfort I felt. Do you feel ishy when you wake up? I have a queezy feeling in my stomach. As soon as I get out of bed it goes away. I think PsA can cause a lot of symptoms, some doctors just don't understand. My chest wall used to ache a lot. Before I was diagnosed with PsA, my internist actually suggested that maybe my bra was too tight! I couldn't believe it! I was angry with her, but she couldn't figure it out, so she felt she had to come up with something! But it is hard to describe because it changes and moves around and doesn't always cause swelling, even though it feels inflamed.
At least in English, there is no common language for pain. Grandma J, above, has used the words "ishy" and "fizzy". Very specific, but probably head scratchers for many doctors. Your description, Guido, goes the other way- awfully general. Here's what I did yesterday.
I had a physical therapy appointment. It's been really frustrating, to the point where I was about to bag it, feeling like we were working at cross purposes. Yesterday the PT asked how I was doing, and I let him have it right between the eyes. Told him that the pain I was concerned about was the one right here. That it is set off by doing A, B, and C. That common household activities such as D & E have become difficult. That doing F and G at work has become dangerous because of this. That I spend H hours a day outside of work doing I, and haven't been able to for the last J weeks. Let him know that this pain started on mm/dd when I did K, and that it is getting progressively worse rather than better.
Worked like a charm. I had said all these things before, but not in one go. My MRI report showed five different types of -itis in this joint, plus the injury in question. He was able to tell what is causing the pain, beyond much doubt. Not that I hadn't tried to tell him . . .
Anyway, the moral of the story is, be as specific as you can. What starts it, what stops it. How it affects your ability to run your life and do your job.
I was thinking of this discussion earlier. I had a visit with my rheumy, 4 months since I started Enbrel (first biologic). I gave the general update, and proceeded to comment that I have one joint that is just killing me. The middle finger MCP joint hurts, a lot, and of course, any hand use impacts it. She gave me a bit of that really? look. Considering that I'm down to primarily my elbows being problematic, plus this one joint, and the background issues with my knees, she wasn't awfully impressed. We did agree that if the voltaren gel is working, keep right on using it.
Getting back to your issue Guido, yes, the more specific, the better. If there's no visible/palpable inflammation it can make it a bit more challenging. When you say pinching at the joints, plus the feeling of inflammation, it certainly could be enthesitis. Has she picked out any joints to do more advanced imaging on? You can ask her, flat out, what makes you think that this may be nerve pain?
Stoney, I hear ya! My first finger on my right hand has been swollen and painful for about 5 months now. the same wrist is painful, stiff and swollen too. But if you tell someone about that type of pain it's hard for them to realize how annoying it is and how difficult it makes everything. On top of that, it's hard for them to understand that you have other pain and weakness and you still need to go about your day doing things that need to get done. Guidob, one thing my husband has often pointed out to me is I need to actually act sick when I go to the doctor. When their first question is, how are you doing and the patient says, "okay", it's like, what are you doing here, then? But when you start talking about your pain they cut you off like they know what you're gonna say and they make their own judgment. If they took more time to listen they might understand the symptoms more and have a better understanding what words like fizzy and ishy mean coming from a person with PsA. I do have to say my rheumy has been a good listener and he did ask me to explain "fizzy" . I've been lucky in that all of my doctors really have excellent bedside manner, considering what others here have said about their docs.