Reply To: Screaming pain
My main purpose in going back to the Mayo Clinic last year was to see if I could have more IVIG treatments. Initially, I had them 2-4 times a week in the hospital. On returning home, I had 2 a week for a month, the 1 a week for another month. That was it. I also took Prednisone for 8 months, tapering down.
At the Mayo Clinic (my doc’s name escapes, but he is mentioned frequently in this forum; not older fellow or his son), I asked about more IVIG. After some nerve conduction studies, he gave me his conclusions. First, he said that I had made the greatest improvement of any CIDP patient he has had. Second, since I hadn’t had any more attacks in the five years since my first one, he predicted that I wouldn’t have any more. Third, he said that further IVIG treatment was not indicated. He mentioned the Hippocratic concept of not doing more harm, saying that there is a risk inherent with that treatment which outweighed any possible benefit.
When I was taking a higher dose of oxy several years ago, I didn’t use a cane. When I went to academic conferences, I could easily walk around all day, sometimes walking 5 or so blocks to lunch.
I appreciate the efforts of my family care doc. But he doesn’t seem completely up to speed about pain. For example, for a couple of years, he kept saying that I should get off the opiates, as those have been known to actually cause pain. I read what I could find on that subject, and it sure did not seem to apply to my situation. When he suggested another visit to the hospital’s pain clinic, I asked the doc about this. She said that, first of all, this is a very controversial subject. Secondly, this did not fit my profile. Under that scenario, a person would feel an increase in pain very soon after ingesting the pills. Furthermore, the pain would be felt all over the body. In my case, the pain always decreases after taking the pills, usually after 40 minutes. Additionally, my pain has always been below the waist, never, ever above. Usually most severe in the toes, feet, and lower legs, below the knees. When the pain gets very severe, then it rises to the thighs and quads. The intensity is greater the lower in body it is. Additionally, it is highly symmetrical, with the only exception being the flashes and intense freezing/burning in my feet. In these situations, I have flashpoints about the size of a quarter in different areas of the foot and toes.
During the last two days, it felt like I was sitting on top of a cliff or gorge. My legs were being pulled into hell, below me and blue in color and cold. A demon had his claws in my feet and was chomping on my toes with his fangs. What was interesting about this, was how different it was from before. For several years, I envision my pain in the form of a 3-4′ old, hairless person/alien who wrapped his arms around my legs. He needed my pain, which I allowed him to cause, as it made him happy. I am sure that the reason for this little story was that it gave me control, in allowing this person/alien to feel good, as he was obviously very unhappy and needed this. Needless to say, I don’t tell many people about this, including my doc.
I am afraid that I will lose my job and that my career is over. I sacrificed a lot to get where I am, and I cannot bear the thought of hanging up my hat 10 years before I am ready.