Chronic Pain in Persons With Neuromuscular Disease

Chronic Pain in Persons
With Neuromuscular Disease

This section is compiled by Frank M. Painter, D.C.
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FROM: Arch Phys Med & Rehabilitation 2005 (Jun);   86 (6):   1155–1163 ~ FULL TEXT

Jensen MP, Abresch RT, Carter GT, McDonald CM

Department of Rehabilitation Medicine,
University of Washington School of Medicine,
Seattle, WA

In this paper, researchers in a medical school rehabilitation department were interested in finding out what treatments were most effective at reducing pain for neuromuscular diseases (like amyotrophic lateral sclerosis and myotonic muscular dystrophies).

Interestingly, chiropractic was scored with the highest pain relief rating ( 7.33 out of 10), scoring higher than the relief provided by either:

  • nerve blocks (6.75),
  • opioid analgesics (6.37),
  • Muscle relaxants (5.78),
  • Massage (5.48),
  • Acupuncture (5.29), or
  • Ibuprofen, aspirin (5.22).   WOW!!!

On the other hand, Physical therapy scored a miserable 4.54, Acetaminophen scored 4.11, and the least helpful (magnets) scored a depressing 3.13.

These authors deserve our utmost appreciation, respect, and gratitude.   Following decades of rabid anti-trust activities against our profession, followed by additional decades of hostility towards alt-med in general, it's a testament to these authors integrity that this paper was ever published.

We will never know how many similar studies suffered crib death, rather than publishing a pro-chiropractic finding.   Many notable medical journals, well into this Century, had the firm policy:

no chiroprtactic studies will be published UNLESS they have negative outcomes.

From the Full-Text Article:


NEUROMUSCULAR DISORDERS (NMDs) include a variety of conditions that affect components of a motor unit (motoneuron cells, nerve, neuromuscular junction, muscle fibers); sensory and autonomic nerves or their supportive structures, such as myopathies (polymyositis, dermatomyositis, inclusion body myositis, muscular dystrophies, metabolic myopathies); disorders of the neuromuscular junction (myasthenia gravis, Eaton-Lambert syndrome); and neuropathies (Charcot-Marie-Tooth [CMT] disease, Guillain-Barré syndrome [GBS]).

Recent research [1-4] suggests that chronic pain may be a significant problem in many patients with NMDs. Bushby et al, [2] for example, reported on the pain problems of 4 adults with facioscapulohumeral muscular dystrophy (FSHMD), who described between 3 and 7 different pain problems each. In a sample of 55 persons with GBS, 89% reported pain during the course of their illness. [4] Of these subjects with pain, 47% described the pain as distressing, horrible, or excruciating (mean pain rating was 7.0 on a 0–10 visual analog scale).

In a large survey (N=617) specifically targeting pain in persons with CMT disease, 71% of the survey respondents reported having pain. [3] Of those reporting pain, the most common sites included the low back (70%), the knees (53%), the ankles (50%), the toes (46%), and the feet (44%). Thirty-nine percent reported that their pain was severe enough to interfere with activities of daily living. Moreover, the pain severity reported by the survey respondents did not differ significantly from pain in persons with other painful conditions, such as postherpetic neuralgia, complex regional pain syndrome type 1 (reflex sympathetic dystrophy), and diabetic neuropathy.

A recent study [1] examined pain in NMD by analyzing data from a previous quality of life (QOL) survey of persons with a variety of NMDs, including the limb-girdle (LGMD), facioscapulohumeral (FSHMD), and myotonic muscular dystrophies (MMD), the spinal muscular atrophies (SMA), and CMT. All 1432 participants were administered, by mail, the Medical Outcomes Study 36-Item Short-Form Health Survey (SF-36), which assesses, among other things, pain severity by using the 2-item bodily pain scale. [5]

The rates of persons reporting at least some amount of pain in the last 4 weeks were 70%, 96%, and 82%, for participants with SMA, CMT, and muscular dystrophies (a combined group of LGMD, FSHMD, and MMD subjects), respectively. Average bodily pain scores for these samples were 74.1, 49.8, 61.4, and 47.2, respectively. With the exception of adult SMA, the frequency and severity of pain reported in slowly progressive NMDs was significantly greater than levels of pain reported by the general US population and was comparable to pain reported by subjects with osteoarthritis and chronic low back pain.

Although these preliminary data suggest that pain is likely a significant problem in persons with some NMDs—specifically, persons with FSHMD, GBS, CMT, and MMD — little is known about the nature and scope of pain in persons with NMD. First, we do not know the frequency of pain in patients with other NMDs, such as in patients with LGMD or with amyotrophic lateral sclerosis (ALS). We also know very little about the areas of the body that are most associated with pain in NMDs, as well as the impact of pain on functioning and QOL in these patients. Finally, we know little about the pain treatments used by persons with NMD-related pain and the extent to which these treatments effectively manage NMD pain.

The primary purpose of our study was to begin to fill in the significant gap in the literature regarding knowledge about the nature and scope of pain in persons with NMD. Specifically, our study sought to gain knowledge about the following in persons with NMD:

(1)   pain frequency,
(2)   pain intensity,
(3)   pain quality,
(4)   pain interference with function and QOL,
(5)   pain location, and
(6)   pain treatments.


The treatments that provided the greatest pain relief were not necessarily those that are most frequently used. The average relief rating, on a 0 to 10 scale, for chiropractic manipulation was 7.33 for the very few patients (4%) with pain who tried this treatment. Most of these patients reported that they were still receiving this treatment. No patients with severe pain reported ever having tried chiropractic care.

Nerve blocks were reported as providing the next highest degree of relief among all the treatments (average relief rating, 6.75), although none of the patients who received these in the past were still receiving nerve blocks. Opioid analgesics were also listed as providing more relief than other pain treatments (average rating, 6.37) and were tried by about a third of the participants with pain overall. Interestingly, however, only about two thirds of those participants who tried opioids for pain were still using this treatment at the time of the survey.

Other treatments that provided some pain relief, on average (relief rating =5.00 on the 0–10 scale), were ibuprofen and aspirin, massage, muscle relaxants, acupuncture, and hypnosis.

Treatments that appeared to provide relatively little relief (relief rating, <4.00) were carbamazepine and magnets, although the former received a relatively high relief rating among those participants with severe pain who tried it (6.33). Across all treatments, there was a fair amount of variability (SD range, 2.50–4.76 for all respondents with pain) in the relief provided by the pain treatments.

Table 8 says it all:

Table 8   Percentage of Participants With Pain Who Have Tried Each Treatment, Percentage of Participants Who Still Use the Treatment, and Average Relief Rating Associated With Each Treatment
Pain treatmentAll Subjects With Pain (n=141)Subjects With Severe Pain (n=38)
% Tried/% Still Use Average Relief ±SD †% Tried/% Still Use Average Relief±SD †
Chiropractic manipulation4/857.33±3.780/NAND
Nerve blocks3/06.75±4.765/010.00±0.0
Muscle relaxants18/605.78±2.8821/504.25±1.26
Ibuprofen, aspirin61/655.22±2.8347/784.25±3.05
Physical therapy43/424.54±2.6650/373.89±2.25
Tricyclic antidepressants15/384.53±3.2818/295.43±2.99
Biofeedback/relaxation training8/554.42±2.5011/754.50±1.91

Abbreviation: NA, not applicable; ND, no data.

The Abstract:

Objective:   To examine the nature and scope of pain in persons with neuromuscular disorder (NMD).

Design Survey:   Setting University-based rehabilitation research programs.

Participants:   Adults with NMD (N=193).

Interventions:   Not applicable.

Main Outcome Measures:   Pain presence or absence, pain severity, pain quality (Neuropathic Pain Scale), pain interference (Brief Pain Inventory), pain site, quality of life (Medical Outcomes Study 36-Item Short-Form Health Survey [SF-36]), and pain treatment. Results Seventy-three percent of the sample reported pain, with 27% of these reporting that this pain was severe (>/=7 on a 0-10 scale), on average. "Deep," "tiring," "sharp," and "dull" were the words used most frequently to describe NMD pain. Patients with amyotrophic lateral sclerosis and myotonic muscular dystrophies reported the greatest pain interference, and patients with Charcot-Marie-Tooth the least, among all NMD diagnoses. The most frequent pain site, overall, was back (49%), followed by leg (47%), shoulder (43%), neck (40%), buttock and hip(s) (37%), feet (36%), arm(s) (36%), and hand(s) (35%). The study participants reported significantly greater dysfunction than subjects in the SF-36 normative sample (persons without health problems) on a number of the SF-36 scales. However, we found no significant differences between the study participants and the US norms on the SF-36 role-emotional or mental health scales. A number of pain treatments were used by the study sample, but no treatment appeared to be effective for all participants, and some of the treatments reported as most effective (eg, chiropractic care) were used by very few participants.

Conclusions:   Pain is a common problem among patients with NMDs. There are many similarities, but also some important differences, between NMD diagnostic groups on the nature and scope of pain and its impact. More research is needed to identify and test effective treatments for NMD-related pain.

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