Public Post!

I recent­ly went into my GP to review how my anti­de­pres­sants are work­ing (good!) and now that my depression/anxiety is fair­ly well man­aged, and I’m get­ting good sleep (mela­tonin), I brought up the next thing on my med­ical list: chron­ic pain.

About a year ago, my doc­tor sug­gest­ed I had fibromyal­gia, which is a mys­tery-pain diag­no­sis that tends to be thrown around, espe­cial­ly for female-pre­sent­ing patients, when there’s chron­ic pain with no obvi­ous injury cause. There’s no test for fibro, so a lot of patients get lumped into this diag­no­sis when the doc­tor doesn’t know what’s wrong (or doesn’t care to find out).

Fibro is a real thing! It’s unfor­tu­nate­ly just a con­ve­nient catch-all for peo­ple with non-fibro pain that is hard to iden­ti­fy.

This time, my doc­tor repeat­ed his belief that I have fibro, so I start­ed doing some research. Fibro is an autoim­mune dis­or­der affect­ing the ner­vous sys­tem. I already have Reynauds, which is the same, and can be trig­gered by oth­er dis­or­ders, so it’s not unusu­al if I do have fibro. In addi­tion, my moth­er, grand­moth­er, and aunt all have/hand autoim­mune dis­or­ders, to my odds of hav­ing one go up there as well.

So this time I made an appoint­ment with a phys­i­cal ther­a­pist with an autoimmune/fibro spe­cial­ty, and I made anoth­er appoint­ment with a rheuma­tol­o­gist. A rheuma­tol­o­gist spe­cial­izes in con­nec­tive tis­sues (lig­a­ments, ten­dons, inter­sti­tial tis­sues, nerves) and are the pri­ma­ry source of infor­ma­tion for autoim­mune dis­or­ders.

I’ve been read­ing a lot about fibro in the mean­time and the more I read, the more I dis­agree with my doc­tor. (oblig­a­tory I am not a doc­tor) I’ve self-diag­nosed my issues all my life: anx­i­ety, depres­sion, exco­ri­a­tion, rey­nauds: I didn’t go into a clin­ic and have some­one tell me what was wrong, I already had done the research and, crit­i­cal­ly, dis­missed diag­no­sis that didn’t seem to fit my sit­u­a­tion.

I know that if I look some­thing up on WebMD, the answer is going to be one of two things: either you’re fine, or you have can­cer. But I also know that the mayo clin­ic pro­vides a lot of accu­rate infor­ma­tion that can help me start a search on the right foot. It’s like the wikipedia of med­i­cine.

Anyway, so the more I read about fibro, the more I doubt fibro is what I’ve got. I do match some of the symp­toms, but major indi­ca­tors are miss­ing, and I’m not hit­ting the major­i­ty on the list. I went into my PT (Heather) for the first time on Monday and her assess­ment agrees with me. I have some kind of autoim­mune dis­or­der that’s caus­ing pain, but it’s prob­a­bly not fibro.

My first rheuma­tol­o­gist appoint­ment isn’t until the end of the month, so I’ll be see­ing Heather for anoth­er ses­sion before then. I like what she’s done so far and I like her man­ner, which is a great piece of luck! It can be a dis­heart­en­ing search to find a doctor/therapist that clicks. Hopefully the rheru­ma­tol­o­gist is equal­ly excel­lent. Fingers crossed.