The Words Beneath My Fingertips

When I last wrote, I told you about being a Nucynta trial. Nucynta is also a narcotic, but it does not have the same side effects (supposedly) of oxycodone. When I was taking oxycodone, I was extremely constipated. It would make my body itch. I would scratch myself to sleep. It made me drowsy and nauseous. Nucynta was supposed to be better. It wasn't.  I had said that the 50mg trial did not work, so I was put on the 100mg pill. This worked better than the 50 mg, but it still did not truly take away my pain. I was also still constipated (and when I talk about constipation on here, I mean it's bad- I don't use the bathroom for weeks and I gain up to 6 pounds just from being...full and stuck). Despite all of this,  I was actually going to be ok with doing the 100mg, because some relief is better than none. But when I saw my pain doctor on January 4th, she was quite surprised even the 100mg Nucynta didn't work, so she wanted me to get off of it. FYI- it's easy for me t...

So it has been almost three months since my last post. I last left you in October when I started a new nerve pain regimen, Lyrica, to be taken every single day (as I did with the gabapentin) and I could increase the dose during pain spells to help with breakthrough pain after taking oxycodone. Lyrica is generally used for fibromyalgia. I'm sure you've heard of it, since it's advertised on TV all the time. Lyrica did not help my pain. Around mid November, my doctor put me on a new medication called Nortryptilene. This does not help. I will say that gabapentin, Lyrica and now nortryptilene help with ONE thing: the occasional neuropathy in my arm, which I believe is caused from a tumor in my hand bone (he is pictured in my 'meet my exterior tumors' tab). Yes, I call the tumor a 'he' because I have named him Handel. Yes, like the composer. ANYWAY, meanwhile my oxycodone was also increased. I was finally allowed to take 20 mg at a time 2x day (during my...

So last month, I posted a rant on my trials with pain and the difficulty I have speaking with my doctors about increasing my pain medicine. I have been slowly increasing my Lyrica. I started by taking one at night, one in the morning and one at night, one in the morning and two at night- now I am at two in the morning and three at night. On Tuesday, I met with my pain doctor and told her everything I've been feeling 1- I'm not sure Lyrica is quite working since it's too early to tell 2- Oxycodone has become ineffective for me 3- I would like to try a stronger pain medication so I can take it LESS frequently. Thankfully my doctor did not meet these requests with adversity. This was her suggestion: 1) my I am taking a lose dosage of Lyrica, and that I am allowed to take MORE than prescribed during my pain spells i.e, three in the morning, three at night and possibly one or two mid day. And to see how that helps. NOW I'm taking 2 in the am 3 in the pm. So it'...

I am in soo much pain. Last month I started a new medication called Lyrica. If you watch TV (and you are in the USA), you know that it's used for fibromyalgia. I have many symptoms for that, but I don't have the 'tender spots' that generally go with it. I had been on Gapapentin but 1) it ballooooned me in weight 2) it gave me the worst brain fog and 3) it didn't help my pain. it helped other thigns like tingling, and when i was recovering from surgery last year, i had the worst burning nerve pain and it helped me then! But not for the pelvic pain I have now.  Last month, before I started Lyrica, my pain was astronomically bad. Way worse than other pain spells!!!  My pain medication  (oxycodone) did not help ONE bit. Out of desperation, I took more than my dose said- nothing. And for you freaks who make me feel like an addict when I talk about taking oxycodone- I took 2 5 mg pills every 2 hours for 6 hours (I generally would take 2 every 4-6 hours , with ONe pill e...

Every year new tumors grow. As I said in my last entry, I have pulmonary nodules.   I also have this weird blob like thing in the right side of my lung. I have been monitored to make sure they remained stable, etc. They were first found when I had a PET scan last August (the PET was done to ensure my NF tumor wasn't cancer and to see if my liver tumor was visable- there was no liver tumor as other MRI's suggested). I had a follow up in November- no change. I was actually excited to get a chest CT at the time I did- I haven't been breathing right. I don't feel that 'refreshed' feeling when I take in a deep breath. In order to get that 'refreshed feeling' I have to REALLY breathe in HARD. So I wanted to see if the nodules were bothering my airways (I was told they could bother my airways, so I assume my nodules are the culprit) Well this is what it says now: (this is my CT scan) Lungs and airways: Examination of the lungs demonstrates that the 1cm gr...

This past week I had two scans: 1) of my chest and 2) of my pelvis. I had the scan in my chest because I have pulmonary nodules . I am supposed to get them checked every 6 months. At the end of June,  though, my chest started feeling really tight. I saw my pain doctor about it, and when she felt around my ribs, she felt a squishy type bump.  So she had me get a chest x-ray but nothing came up. I didn't worry about it because I knew I'd be getting this chest CT eventually. However this week I have felt like an elephant has been sitting on my chest. I can't really take in deep breaths. So I was extra glad to get that CT done! Perhaps my husband got me sick- he had a similar feeling in his chest last week. Anyway, I'm more anxious about my pelvic MRI. My last pain spell, which lasted from June 20th until July 3 really took a toll in me. This was different from my other fits of pain. It was REALLY strong, and it lasted a REALLY long time. At one point I cried. I...

There's a lot I want to say but it's hard to organize my thoughts.  I'll try! It's very late as I'm typing so forgive any typos. On Pelvic Pain A few months ago (February), I made this video: In this video, I was describing my recovery from my SECOND abdominal surgery, and how I was feeling from there pain wise. At the time, I was on 2400 mg of gabapentin. But a few days before I actualy made this video, I had a TERRIBLE case of bronchitis. I had so much medicine to take that I stopped taking the Gabapentin. It made me terribly 'foggy' and I was having so much trouble participating in class discussions. I was taking the Gabapentin because  after my surgery, I had terrible referred pain- exactly opposite of my surgical area was this intense burning sensation. Gabapentin saved me! But I realized a week after stopping the Gabapentin  that  I no longer had that burning sensation! So  I stopped it for good. It made me WAY loopy. I couldn't focus, ...