Navigating Life Without a Map...Help Please

I was diagnosed in February 2017, and since then, I have been lucky. After Humira and Embrel didn't work, I finally found what works for me.

Cosentyx has been a huge life saver and gave me my life back. I've been able to live a relatively normal life until now. I don't walk with a cane, and my flares are very limited and short-lived. It's really been a light in the darkness for me.

A year of rough surgeries

This year has been rough since January. I had two surgeries (January 22nd and February 14th) to drain and hopefully heal a perineal abscess. After the second surgery, they figured out that it was caused by a fistula connected to my bowel. The three surgeries required me to keep the wound open after surgery. This allows my body to heal from the inside out.

I'm now worried that surgery number three (on May 9th) isn't going to be my last. I'm almost healed, and due to the symptoms I'm experiencing, I'm not sure it was repaired. However, I am healed enough to go back to work.

The worst AS flare-up yet

I've been back to work for two days. Sitting at my desk writing this, I'm in some of the most excruciating pain I've had to date. I got injured playing soccer in my early twenties, and that's when my disease started its rampage.

I walked with a cane for what felt like forever. After a little bit of time, flares only seemed to come on every six months or so. Some would last a week, others would last months.

I've been off Cosentyx for about six months now, and my body has decided to flare. This flare is touching everywhere.

It is affecting my:

• Neck
• Ribs (especially the Costovertebral joint. I do have Costochondritis as well, so the left side of my rib cage is very tender right at the waist)
• Fingers
• Right wrist
• Right hip flexor
• Right knee
• Right ankle
• S.I. joints (which are fully fused)
• Sciatic nerve on the right (the right side is being very extra)
• Upper and lower back

I can't go a second without pain. I don't have stability in my spine either. At any moment, I feel like I might just crack in half at the Costovertebral joint.

Coping with chronic pain

What I do know is that there is not a better group of people to talk to about this than other people who also suffer with this horrible disease. So, I am hoping I can get some advice from you on how to deal with the most painful flare to date.

Here is what I have been trying for pain relief: TENS unit, lidocaine patches, diclofenac gel, and the trusty heating pad. Also, I should note, I am not supposed to take NSAIDs as I had a gastric bypass in 2015 (two years before diagnosis). They can cause ulcers, but I have been taking those as well. This morning after taking Aleve, I noticed stomach discomfort, so I won't be taking those for a while. But even with those, I don't think it did much for the pain at all.

I'm also on Percocet 7.5-325mg, but I think my body has become used to it and it isn't working as it used to. Asking the doctor to up my medication is like asking her to pay my rent. It's ridiculous, and it's not happening with the restrictions on opioids.

Does anyone have experience balancing pain management and the struggle to return to work after multiple procedures?