Treatments survey results



Pain survey results

Current data from the Pain Survey includes 57 patients with CPT II deficiency. However, not all patients answered all 10 questions. Incomplete surveys were included, using the data that was offered.

TYPES OF MUSCLE PAIN REPORTED BY CPT II DEFICIENCY PATIENTS

Type of Pain	Number of Patients
stiffness	47
aching	45
soreness	42
cramping	35
tenderness to the touch	31
burning	26
swelling of muscle tissue	13
bruising of overlying skin	3

TYPE OF PAIN MOST PROMINENT DURING ATTACKS OF MUSCLE BREAKDOWN
15 patients said cramps are the most prominent type of pain in their attacks of muscle breakdown. Other patients said aching (11), soreness (10), stiffness (7), burning (2), and tenderness to the touch (2) are most prominent.

PATIENT DESCRIPTIONS OF MUSCLE PAIN
"Unceasing cramps, majority in quadriceps." "Similar to a Charlie horse cramp that doesn't leave. Sharp and distinct." "Like a spasm." "I don't know how to classify it. Extreme tenderness and a severe soreness, sort of." "Like the muscle is literally ripping apart." "Tight hard muscle that doesn't want to let up." "Stiffness in legs makes walking difficult." "Muscles get very 'heavy'." "Cramping and sore to touch, inability to move my legs or bear weight." "Cutting, tearing, stabbing pain." "Severe aching and soreness when affected muscles are moved." "Muscles so tense that you're unable to move or walk." "Like a knife going in." "More painful going down steps than going up steps." "Muscles tearing apart." "Severe cramps from many parts of body. Muscles fibrillate." "Feels like someone is inside ripping out your muscles."

AVERAGE LENGTH OF TIME PAIN PERSISTS PER EPISODE
Hours: 12 patients said muscle pain usually lasts less than 24 hours. The shortest length of time specified was 1-2 hours. Average length of time for the group of 11 patients was 8-11 hours.
Days: 8 patients said pain usually lasts several days. The shortest length of time specified was 1 day and the longest was 6 days. Average length of time for the group of 7 patients was 3-4 days.
Weeks: 12 patients said pain usually lasts for weeks. The longest time specified was 4 weeks. Average length of time for the group was 2 weeks.

Comments: "It depends on how quickly I react by eating carbohydrates. Could be 2 hours to 2 days." "Pain persists until therapy is applied." "Depends how severe it has gotten before I rest."

CORRELATION OF CREATINE KINASE (CK) LEVELS WITH MUSCLE PAIN

Patient response	Pain lasts longer when CK levels are higher	Pain is more severe when CK levels are higher
Yes	17	17
No	5	9
Not sure	34	29

ATTACKS OF MUSCLE PAIN WITH NORMAL LEVELS OF CREATINE KINASE
Of the 34 patients who have creatine kinase (CK) measured regularly, 20 reported attacks of muscle pain in which CK remains normal. 14 of the 20 patients said the level of pain is similar regardless of whether CK elevates. However, 5 of the 20 patients said pain is more severe when CK does elevate. One patient commented, "This [normal CK] is due to what I think is neuroactivity of an oncoming episode. The muscle enzyme is not in the blood yet."

AVERAGE SUBJECTIVE RATING OF PAIN
DURING ATTACKS OF MUSCLE BREAKDOWN

Worst attacks of muscle pain	8.5 *
Mildest attacks of muscle pain	4.3 *

* Rating based on a subjective 1-10 scale: 0 = no pain and 10 = worst pain possible.

Worst attacks: 33 of the 57 patients rated the pain of their worst attacks at 9 or 10. However, 6 patients rated their worst attacks at 6 or lower. The lowest rating by any patient in this category was 4.
Mildest attacks: 37 of the 57 patients rated the pain of their mildest attacks at 5 or lower. Furthermore, 15 of those 36 rated their mildest attacks at 1 or 2. However, 2 patients rated their mildest attacks at 9 and 10.

PAIN-RELIEVING DRUGS AND OTHER METHODS OF PAIN RELIEF
26 of the 57 patients say they use drugs to control pain during episodes of muscle breakdown. (See charts below for specifics.) 27 patients say they use other methods of pain relief besides drugs. (See patient comments below charts for specifics.) 10 patients use combinations of drugs and/or other methods.

Types of pain-relieving drugs reported	Number of patients
Opiates	16
Acetaminophen w/o codeine	6
Anti-inflammatory drugs	6
Opiate/anti-inflammatory combination	1
Muscle relaxants and other drugs	9

DRUGS USED BY CPT II DEFICIENCY PATIENTS TO RELIEVE PAIN

Opiates	OxyContin, Oxycodone, Darvocet, Duragesic patches, Ultram, Percocet, Demerol, Loratab, Hydrocodone, Morphine Sulfate
Acetaminophen w/o codeine	Tylenol, Paracetimol, Panadol
Anti-inflammatory drugs	Toradol, Advil, Ibuprofen, Vioxx, Motrin
Opiate/anti-inflammatory combination	Vicoprofen
Muscle relaxants and other drugs	Flexeril, Diazepam, Lorazapam, Clonopine, Carnitor, Neurontin, Baclofin, Zanaflex

OTHER METHODS OF PAIN RELIEF REPORTED
Complete rest/immobility (11)

Heating pad or hot bath (6)

Carbohydrate intake (6)

Fluid intake (5)

Massage (4)

Ice packs (1)

Comments: "If I begin to feel the signs, I immediately stop and go to where I can rest and drink plenty of fluids."

"Drinking Gatorade alleviates the pain a little."

"Rest and keep aching muscles as still as possible to prevent waves of pain."

"Immobility--least possible use of muscle and immediate intake of carbohydrates."

"Hot bath, massage and aspercream."

"I push to straighten out cramping muscles slowly. I tighten up my stomach muscles and go into fetal position when the cramping hits my abdomen. So far it has always made the pain go away."

"Heating pad and rest."

"I just make sure I eat enough carbs, drink lots of water and rest."

"Heat, massage and rest."

"Eat baked potatoes, gravy, cornstarch raw with juice, Carnitor and CoQ10 are used daily."

"Positioning with pillow and heat."

"Keep still, usually on a bed."

"Stop all physical activity during attack."

"I've used Myoflex, which seems to help a little, also Myoflex Ultra."

"Lying down and heat."

"Complete rest and inactivity."

"Massage."

"Take more rest, try to work with NLP, reframing, massage, hot sauna."

"Lots of fluids, watermelon, fruit snacks, lots of gentle rubbing."

Thanks to all who have participated. To read the original survey questions, visit the pain survey page.