How do you cope with the pain?

[hoping]

I am still learning to try to take meds before the pain becomes unbearable. All my life I've depended on meditation for pain or anxiety, so by the time I'm reaching for drugs, I'm swollen and my nervous system is shot. I've found that smoking marijuana works quickly, for a short period of time until your other meds kick in. The combination of marijuana and ketamine cream can help you through that waited-too-long period and provide immediate relief. There are all sorts of strains now for medical marijuana and I don't know which one I take but it's used for people with pancreatic cancer. I can also control the dosage more easily by smoking just enough to take the edge off.

Good luck. I'm not strong. I cry every day. It's just real life. Don't judge yourself and what you feel and have to do to keep going. There were months in which the thought of ending it was my only solace. People can say that it's good or bad or weak or strong but it's not a tv show, it's your experience.

[shawnmellis]

Hi everyone, The medications that everyone has suggested on this thread are great for extreme pain and valium does help relax the pelvic muscles and can reduce some of your pain. As far as non-medication management, here are the things that work for me and helped my pain level to go from constant all day pain, to only while sitting, and at a lower level of pain while sitting.
1. Time
2. Avoid sitting upright or any position that increases you pain
3. Avoid sleeping in any position that makes your pain worse. You may have to experiment with side, side with pillow between legs ,back etc. For me, sleeping only on my back has helped me, but everybody is different
4. Take a warm bath twice a day
5. For extreme pain, or flares you can also apply ice to your worst pain areas for 10 minutes for 2 to 3 times a day. I use a zip lock bag fill it with a little water, and add a few ice cubes. Make sure it gets to where your worst nerve pain site is. They say not to apply it directly to the skin, but I will not lie, I have applied it to my skin this way for at least a few minutes at a time and it helped me. Just had to be sure I did not give myself frostbite or anything
6. Take anti-inflammatory Ibuprofen if doctor okays it, along with other meds until bad pain flare gets better *I know this is a medication tip
7. Listen to relaxing music while taking baths or laying down.
8. Do not do too much or overdo physical activity if you are in extreme pain or other exercise or activity like lifting too much that may reinjure you while your body heals
9. If you are able to walk without too much pain, it is good to walk some because it gets blood flowing to the nerves, helps relax the fascia and muscles surrounding the nerves, and decreases stress which makes the pain worse
10 Try to avoid stress as much as possible because it can make your pain worse, due to tightening of your pelvic floor muscles and effect on how body handles pain
11. Eat healthy foods with antioxidants, and all the vitamins especially Vitamin D, C, B. Maybe even take a multivitamin each day
12. Do whatever you have to do to get a good night's sleep because it helps with pain reduction, stress, anxiety, immune system, healing, etc. If you are not able to sleep well after trying everything talk to your doctor about it and they may be able to prescribe a sleep medication temporarily or give other advice on it.
13. Whenever you have to sit upright in a painful position, which for me is 2 or 4 times a week, I sit on an actual pillow that you sleep with. It has worked far better than any other donut or other cushion on the market because it reaches my entire buttocks and perineum area and is soft, and just more effective overall. I even take it with me to restaraunts, the car (my wife usually drives me), etc. Whatever works, is my motto? Right? Don't knock it till you try it
11. Keep thinking positive thoughts, There's Always Hope, I will get better one day, I'm not going to give up, I"m going to Fight PNE!, etc.
12. I did all of this for a little over 1 year, and now I am totally off of Tramadol pain medication and the only thing I take is Valium for occasional urinary related pain problems. I still have pain when I sit, but I just avoid it as much as possible (hyperavoidance), and I no longer have a constant pain. I am able to now take Ibuprofen or Tylenol or both for pain. I found out that Opiates including Tramadol can lower men and women's Testosterone causing fatigue, weakness, low immune system and other problems, so I strongly advocate people to try to do everything they can possibly do (non medication) wise along with the medication until the pain level decreases and are able to get off some of these pain medications one day through doctor's supervision because many of these pain medications, especially Opiates, have hidden side effects if taken long term especially.