Tuesday, February 15, 2011
FINALLY finished putting together what I think the pain specialist needs to know. At the risk of over-sharing, here is the reality of my situation:
Primary complaint: Pain severe enough to compromise sleep, cognitive function, energy level, ability to work, and overall activity level. On a scale of 1-10, the lowest level is a 7 with average level about an 8 and occasionally experiencing 9 or 10. This pain has been ongoing for 14 years.
Types of Pain: 1. Muscle pain/spasm, can be sharp during spasm but usually more sore, can occur in any muscle or whole areas of the body, some areas like mid-back (trapezius, teres major and minor) and neck (scalene) are chronic. Extremely prone to trigger points, but some soreness occurs independently of them. Tension headaches, which feel like my scalp is having a giant spasm, occur every few weeks or so, sometimes flaring up for multiple days in a row. Chronic foot and lower leg muscle pain caused by nightly twitching.
2. Joint pain, occurs with use but also during rest. Pain in all major joints except elbows and shoulders. This is helped by Meloxicam.
3. Tendon/connective area pain, some of these are tender points that do not necessarily hurt unless pressed or overused. Some areas, like hips and low back, are severe and chronic, and it’s difficult to sort out a single source of the pain.
4. Migraines, used to be chronic but now are about every three months (coinciding with menstrual cycle on Quasense). They can be intractable, lasting a week or even longer at a time. On a few occasions have occurred with stroke-like symptoms lasting up to two months. The stroke-like episodes responded to short-term prednisone. The menstrual migraines don’t respond to medication and eventually burn out on their own.
5. Neuropathy, can range from burning pain to tingling to severe sharp jolts. Usually short-lived, lasting 20 minutes or less, but have had episodes of burning pain or tingling lasting multiple days to weeks. Most of this is from the knees down and the elbows down, but occasionally will get a sharp pain that travels throughout the body. Most common pain is sudden jolts in right big toe or other parts of foot or ankle that are so severe that I jump and yell.
6. Body-wide low-level neurological pain, constant. This is extremely difficult to describe. It’s like background noise. I am able to ignore it most of the time. It went away once when I was on Topamax, but returned when the medication was discontinued.
Areas of worst pain: feet, hips, entire back and neck, ankles, calves, knees, chest/rib cage, hands, wrists.
Current pain management: Meloxicam, fish oil, magnesium. Muscle relaxants (used very sparingly due to side effects) when spasms are severe and long-lasting. Arthritis Foundation-approved water therapy, 40 minutes 3 days a week. Gazelle glider machine, 25 minutes very slowly, 3 other days a week. Cannot tolerate raising my heart rate higher than 90 beats per minute. Massage and chiropractic once a month.
Current activities: water therapy, church on Sundays. These are the only consistent activities outside the home. I can do dishes but that is the only consistent housework. Cannot do yard work at all. Approximately two hours per day on computer including social networking. Read the newspaper and watch TV. Cannot work or consistently engage in other social activity.
Goals: to reduce pain to consistently tolerable level (a 5 or less would be fantastic). Improve sleep to get through the night without waking from pain. Hoping reduction in pain would lead to less fatigue and cognitive dysfunction as well. Would like to be able to increase social activity and time spent at computer. Would like to be able to engage in cardiovascular exercise.
What makes the pain worse: sitting, standing or walking for more than a few minutes at a time. Poor sleep. Muscle spasms/twitches/cramps, particularly when trying to sleep. Lying in one position more than 20 minutes. ANY repetitive activity. Opening sealed containers. Driving. Social interaction via telephone or in person. Shopping. Non-ergonomic situations (uncomfortable chairs/seating arrangements, confining spaces). Sitting in bath tub. Travel. Housecleaning. Yard work.
Medication I tried that didn’t help: Naprosyn, Ecotrin, Motrin, Advil, Nuprin, Aleve, Sinemet, Xanax, Rozerem, Mirapex, Ativan.
Medication that worked initially then lost effectiveness: Clinoril, Relafen, Diclofenac, Lodine, Lyrica, Neurontin, Migranal, Midrin, Zomig, Imitrex. Bextra and Vioxx worked but were pulled from market.
Medication I cannot tolerate due to side effects:
ALL NARCOTICS & ULTRAM CAUSE SEVERE VOMITING DUE TO GASTROPARESIS.
Elavil, Doxepin, Nortriptyline, Trazodone, Prozac, Paxil, Amitriptyline: twitching, tremor, nausea, vomiting, dizziness, paranoia.
Topamax caused fainting.
Zanaflex caused bodywide twitching.
Flexeril and Klonopin caused daytime sedation so severe I couldn’t function at all.
“caine” anesthetics: racing pulse, hyperventilation, shaking, crying, etc.
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