Chronic Pain from the Perspective of a TM Sufferer: More Lessons

Lesson Two: Take Pain Medicine as Prescribed

After two years of struggling with various pain meds and being in pain more often than not, my doc suggested morphine sulfate in a timed-release dose. Many docs will tell you that opiates won’t work with nerve pain. For me it was the best option. I wasn’t pain free, but I was able to lead my life more like in the past. Opiates do have side effects, which include constipation, feeling less alert, nodding off, being less articulate. When I asked about addiction my doc said as long as I used the prescribed dose and no more I wouldn’t get addicted. I prided myself on following his directions. No matter how crappy I felt I never took an extra pill. I never felt high after taking pain pills. Another problem with long-term use of opiates is some doctors believe at some point the opiates themselves cause pain.

Besides side-effects there are other problems with using opiates.

1. The Drug Enforcement Administration (DEA) closely supervises doctors who prescribe opiates or other narcotics. (Opiates are a type of narcotic.) DEA can pull doctors’ licenses or arrest doctors who over or misprescribe opiates. Therefore, most doctors are very careful. Although doctors can legally prescribe a 90-day supply, they will never give you more than a 30-day supply.

2. You can’t fill an opiate prescription across state lines. If you travel for business or pleasure and you have to get a refill it has to be in your home state. Some pharmacies won’t fill your RX unless you have been a patient. (I don’t understand this last sentence)

3. Make sure your prescription is filled out correctly before you leave the doctor’s office. At least 3 times the doc or whoever on his staff actually wrote the RX made an error. (forgot the DEA #, or wrong dose). If this happens on a weekend you can’t get the pills till the next week or until the pharmacy can contact your doctor.

4. Pharmacies require that you present picture ID whenever you purchase narcotics. It is hard to keep your use of narcotics private when you walk up to the window and show your ID.

5. If you lose your pills by burglary, negligence or whatever, it’s very difficult to get another prescription. (Narcotic drugs are targeted by addicts and thieves who can sell them.) Treat your pills like valuables. Don’t keep all your pills in one place. Keep them in a safe, private place.

6. You are treated like a drug addict by even medical personnel.I didn’t rely on pills only. I tried a variety of alternative medicines. Some worked and some didn’t. A friend suggested acupuncture. I went to three sessions. Although the acupuncturist was kind and wanted to help me, every time a needle was put in my tender skin, it hurt. I know others who have tried acupuncture and gotten relief. A physical therapist recommended a tens unit. It is a small box that supplies electrical current to the area of your body that hurts. I found it uncomfortable and difficult to use and it did not decrease my pain. I haven’t met anyone who felt it helped. I did not try herbs, supplements or Chinese medicine. I was and am afraid of these remedies although again I do know people who feel they have been helped by them.

At a very low moment in my TM journey I heard of a hypnotist who used to work for the police department and had helped some friends with weight control or to stop smoking. I was skeptical. I didn’t believe that I could get hypnotized or that if I was it would help. I was wrong on both counts. After doing some research I’ve found that hypnotism is legitimate and has been used as an alternative to medicine when people have surgery or babies. I only needed 3 or 4 appointments to learn the technique. After showing me that I could be hypnotized, the hypnotist made me a tape that I could use to hypnotize myself. I did it twice a day, when I first woke up and after work, for about a year and it really helped. (I still took my meds.) I stopped because I was doing well with just medication.

A world of advice. There are unscrupulous practitioners in both western and alternative medicine. The hypnotist I went to was recommended by people I know which I think is the best way to find any professional. I also checked him out to the degree I could. His 25 plus years with the police department also made me trust him. I chose him over people with fancy ads. Fancy ads don’t mean a person knows what they are doing in any profession. With the internet you can get lots more information about professionals although one unhappy client can hurt a reputation undeservedly. There are professional associations you can check. SRNA keeps lists of doctors that our members recommend.  I urge you to add to this list if you can.

Lesson Three: Distraction Helps

It does no good whatsoever to sit around the house feeling sorry for yourself. It’s true that what happened to you isn’t fair. Why were you the one in several million to get this horrible disease?  You didn’t deserve it. Life isn’t fair. Going back to work was a lifesaver for me. Every morning I was in pain getting ready to go, but once I got there and got busy the pain receded. Not all of you will be able to go back to work. But you can do something. Maybe you always wanted to paint or write or learn French.

Join a support group if there is one in your area, or if there isn’t, start one. Meeting with others with your symptoms and problems is a good way to learn about good and bad doctors, strategies for dealing with pain or bowel and bladder issues or unsympathetic friends or family. I talk about my disease to friends, but not often. They don’t understand what I’m going through and certainly don’t want to hear about it every day.

If you can’t go out use the internet to start an on-line group or just chat. Watch funny videos or get addicted to TV shows.

I know it isn’t easy to get out, but it will be worth it. One day when I had recently cut down my meds I was in a lot of pain. I started to cry and laid down on the bathroom floor. I began to sob.  I called my husband and told him to come home. While I was on the phone with my husband, I got a text from a friend reminding me we had made a lunch date that day.

Somehow I got dressed and met the friend.  It was obvious I had been upset so I told her what was going on. We talked about it a bit and then continued discussing other things. By the time I got home, I was able to handle the day.

If you are spending a lot of your time crying, unhappy, being alone, and asking “Why me?” consider seeing a counselor or psychiatrist. Most insurance policies will pay for several sessions. Anyone in our situation could legitimately be depressed. Depression can be treated. There are numerous anti-depressant drugs and talk therapies that help. Again, word of mouth is a good way to find a competent therapist. Your primary doc can also refer you.

This is the second blog in a series by Barbara Sattler, a member of SRNA Board of Directors. Barbara is a retired judge and a published author. The blogs will also be published as part of a book on rare neuroimmune disorders by Sandy Siegel, President of SRNA.