I have two types of pain: general skin pain from scratching and dryness and nerve pain. I’ve talked quite a bit about nerve pain in the past. It went away for a while – when I was on gabapentin it disappeared. When I came off, it came back. Now it is almost unbearable and I am considering going back on gabapentin because feeling crazy is better than feeling pain. It is a tough call.
The nerve pain is so bad in the morning when I get out of the tub that even 10 mg of Vicodin will not even touch it. I have been having horrific episodes that last for up to ten minutes. It feels like someone is stabbing me all over my back, chest, sides, shoulders and sometimes elbows. It is like thousands of needles with electric currents. Sometimes it is concentrated in one area and I repeatedly experience a deep, hard stabbing sensation.
So what do I do for the pain? I take drugs. I take Vicodin when it is bad because it numbs my body. But often that doesn’t work at all. I have been putting myself into a meditative state where I block everything out and just breath. Sometimes I give myself pep talks. I probably sound like a football coach with one too many hits to the head. “You can do it, Leslie. Just get through the next 15 minutes. The pain is temporary, just keep breathing.” Sometimes nothing works. Yesterday I was sobbing and shrieking at the top of my lungs and started screaming “I want to die, please kill me.” Do I mean that? Do I want to die? Of course not. But this level of pain… I just can’t handle it. It makes me feel the saddest, the lowest, the most despair I have ever felt. I have never felt pain like this and when it hits, it strips away everything I have and leaves me literally naked on the floor, in too much pain to even get in fetal position. I wonder how others deal with nerve pain.
It is weird- the worst two symptoms that I thought had passed are now back in full force. Oozing and nerve pain. I can handle the regular TSW itch. I can handle the fact that my skin is constantly falling off and landing all over the place. I can handle being hideous and being stared at. I can handle the dryness. I can handle one bath a day. But more than that, I just can’t handle. Getting worse, going back into this hard place, is just… I don’t know if i can do it. But what does that mean? I was talking to a friend who is a few months behind me. She said that injections stopped working for her and that she would flare up after a few days. So, even if she wanted to go on steroids again, it wouldn’t be long before she was back at that point. I have a similar experience – clobetasol stopped working for me. So what choice do I have??
I think that I have three choices. I’m going to explore them here.
Option 1: keep doing what I’m doing
Not much to say here, except keep working and just wait until it heals.
Option 2: the impossible option
Quit my job, eliminate all stress and just relax and focus on my healing.
Oh wait… I have no money because taking 1.5 months off unpaid in the last year, getting paid for “part time” work, and two hospitalizations depleted my savings. We are getting back on our feet, but if I quit my job, we would probably have to file for bankruptcy.
So option 2 is a no go.
Option 3: cyclosporine
Cyclosporine is a drug given to transplant recipients. It is a major Immunosuppressant. Some people going through TSW find that it alleviates their symptoms. Side effects include: lowered immune system function and increased risk of infection, damage to ovaries, sensitivity to light, rebound when you taper, lymphoma, hair growth, organ damage. You actually have to get blood tests every month to check whether there is organ damage.
I am most concerned about the risk of infection and damage to ovaries. I have not had an infection so far, which i think shows my immune system is doing marvelous job. Do i really want to screw that up?? Also, C and I want kids and will probably start talking about planning once I’m done with withdrawal.
So, looks like cyclosporine is out too.
So, that is the dilemma. Looks like I’m stuck sludging through this shitty period.
Sorry for the latest string of depressing posts. hopefully I will have a turn around and I can get back to the old me. thank you to all who have sent me words of support. Hope you are all having a flare free day!