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The overwhelming majority of physical therapists are not trained to work with patients with rare diseases, especially stiff-person syndrome.
Physical therapy may worsen symptoms of SPS during certain phases of the disease; therefore careful use of physical therapy, including passive range-of-motion is advised. Physical and occupational therapists may be able to help with long-term muscle control and also serve as an adjunct to clinical observation for worsening signs and symptoms. They can use passive muscle relaxation techniques that can help to relieve symptoms of long-term muscle spasm and to avoid loss of range of motion. However, PT should be used carefully in those for whom passive motion may be a trigger of spasms.
The patient may struggle with voluntary movement and fine motor skills. Exercise or physical therapy may be helpful in preserving range of motion and in relieving symptoms related to prolonged muscle tension. Muscular biofeedback may be helpful, although careful studies of physical therapy treatments have not been done.
If you do utilize PT, encourage therapists to send reports or call staff about changes they observe to your physician. Link to article
As with any debilitating disease, it is important to keep doing as much as you can, as long as you can, when you can. Prolonged immobility results in multiple problems with metabolism, bowel movement, insulin control, etc. If you aren’t moving, you aren’t burning calories and your diet needs to be adjusted accordingly.
Daily walks, even if they are around your living space using a walking aid, can be beneficial. Chair yoga or exercises for seniors may also be of benefit if possible.
1. Potter K. Physical therapy during in-patient rehabilitation for a patient with Stiff-Person Syndrome. J Neurol Phys Ther. 2006 Mar;30(1):28-38. Link to article
The patient was a 33-year-old with a 3- year history of SPS. He spent 10 days in an in-patient rehabilitation hospital with impairments of pain, range of motion, reflex integrity, and motor function, along with abnormalities of posture, balance, and function. Stretching exercises were categorized according to their priority and level of difficulty to accommodate for the patient's varying symptoms, and relaxation exercises aimed to reduce the severity of the patient's spasms. The functional retraining program included transfer and progressive gait training. The patient showed improvements in ankle range of motion, posture, and gait (distance, speed, and independence), despite continued problems with stiffness, spasms, and pain. Physical therapists working with patients with SPS have challenges related to the paucity of information in the literature. The chronic, progressive, and variable nature of SPS indicates the need for life-long management, with the inclusion of an exercise program that can be adjusted accordingly, given the frequently changing symptoms experienced by the patient.
2. Hegyi CA. Physical Therapist Management of Stiff Person Syndrome in a 24-Year-Old Woman. Physical Therapy September 2011 vol. 91 no. 9 1403-1411. doi: 10.2522/ptj.20100303. Link to article
In depth explanation of therapy modalities are included in this article.
There is only one previous case report dedicated to the management of SPS through physical therapy.(Above) Although the patient described in that case report showed improvements in ROM and gait over the course of a 10-day inpatient rehabilitation program, his medication dosages were increased, and a new medication was added. Therefore, it is difficult to determine how much of his progress was attributable to physical therapy. Because our patient’s medications did not change during the course of physical therapy, her improvements had a greater likelihood of resulting from physical therapy interventions. Furthermore, our patient was treated for 15 weeks, with a reexamination 3 months later. Her clinical presentation most closely fit the subcategory of stiff-limb syndrome.
Dry needling is the use of either solid filiform needles or hollow-core hypodermic needles for therapy of muscle pain, sometimes also known as intramuscular stimulation (IMS). Acupuncture and dry needling techniques are similar. It was developed as a form of trigger-point therapy for fibromyalgia and myofascial pain. Dry needling for the treatment of myofascial (muscular) trigger points is based on theories similar, but not exclusive, to traditional acupuncture; however, dry needling targets the trigger points, which is the direct and palpable source of patient pain, rather than the traditional “meridians” accessed via acupuncture. The distinction between trigger points and acupuncture points for the relief of pain is blurred. There have been limited and problematic studies to date to support the claims. No trials have been conducted for SPS or autoimmune disease.
1. Painful and Tender Muscles: Dry Needling Can Reduce Myofascial Pain Related to Trigger Points Muscles. Journal of Orthopaedic & Sports Physical Therapy, 2013, Volume: 43 Issue: 9 Pages: 635-635 doi:10.2519/jospt.2013.0505. Link to article
Dry needling is a specialized treatment for trigger points provided by some physical therapists. It is one possible treatment option, usually combined with other techniques, including exercises, to manage myofascial pain.
2. Pryse-Phillips W, Shah JP, Lennon VA, et al. Neuromuscular Disorders and Techniques: Novel Observations and Fresh Looks. 2006 Plenary AANEM 53rd Annual Meeting Washington, DC. Link to article
Myofascial pain arises from discrete hyperirritable papable nodules in taut bands of muscle. In clinical studies, dry needling has been found to be as effective as lidocaine injection in inactivating myofascial trigger points and providing symptomatic relief.
Accupuncture is the stimulation of specific points along the skin of the body involving various methods such as penetration by thin needles or the application of heat, pressure, or laser light. Clinical practice varies depending on the country. Traditional acupuncture involves needle insertion, moxibustion, and cupping therapy.
According to traditional Chinese medicine, stimulating specific acupuncture points corrects imbalances in the flow of qi through channels known as meridians. Evidence suggests that acupuncture generates a sequence of events that include the release of endogenous opioid-like substances that modulate pain signals within the central nervous system.
It is most commonly used for pain relief. Results are variable and inconsistent, though it is gaining popularity in the US. Acupuncture is generally safe when administered using clean technique and sterile single use needles. When properly delivered, it has a low rate of mostly minor adverse effects.
In 1996, the Food and Drug Administration reclassified acupuncture needles as a Class II medical device, meaning that "general acupuncture use" is done by licensed practitioners. All states permit acupuncture to be administered; some by physicians only and some by acupuncturists under medical supervision, and some with no supervision. Profession ethical codes are set by accrediting organizations such as the National Certification Commission for Acupuncture and Oriental Medicine.
1. McCann H. Stiff person syndrome--management by Chinese medicine: a case study. The Journal of Chinese Medicine, February 1, 2008. Link to article
There is no direct mention of SPS in the Chinese medical literature, but a review of other classical disease categories reveals that from the Chinese medical perspective, SPS can be understood as a disease of the Liver and sinews caused by a combination of underlying vacuity patterns as well as retention of wind and phlegm evils. This case study describes the acupuncture and Chinese herbal medicine treatment of a 33 year-old male with SPS. The patient underwent treatment for a period of two years, and during that time he was able to completely eliminate his use of Dilantin and decrease diazepam use by between 30 to 50%, with no deleterious effects or exacerbation of symptoms. It can thus be concluded that Chinese medicine may offer SPS patients a valid treatment option for palliation of symptoms and it is hoped this case will introduce SPS to Chinese medical practitioners in an effort to begin collecting more data on its treatment with Chinese medicine.
2. Bennett D. Stiff-person syndrome. IG Living! www.igliving.com April-May 2007.
John Crawford, a retired business owner in Florida, suffers from SPS and chronic inflammatory demyelinating polyneuropathy (CIDP). He improved with IVIG for 3 years, then started to decline. He was forced to stop IVIG when his insurance ran out. Crawford began acupuncture treatments, which Crawford said helped him tremendously, and continue to do so “Two years later, I’m walking without a cane much of the time.”
3. Web MD website. Accupuncture (PDQ®): Complementary and alternative medicine - Health Professional Information [NCI] - Human / Clinical Studies Effect of Acupuncture on Immune Function.
Four randomized controlled trials, a nonrandomized clinical study, and two case series found that acupuncture enhanced or regulated immune function. In a clinical case series, 28 cancer patients who were treated with electroacupuncture (EA) while undergoing chemotherapy experienced no declines in T cells (CD3 +, CD4 +, CD8 +) or in NK cell activity, both of which are usually suppressed by chemotherapy. Similar findings were reported in a study comparing EA to the control in patients receiving chemotherapy for breast, colorectal cancer, and non-Hodgkin lymphoma.
4. Arranz L, Guayerbas N, Siboni L, De la Fuente M. Effect of acupuncture treatment on the immune function impairment found in anxious women. Am J Chin Med. 2007;35(1):35-51. Link to article
Thus, the aim of the present work was to study the effect of an acupuncture treatment, designed specifically to relieve the emotional symptoms stemming from anxiety, on several functions (adherence, chemotaxis, phagocytosis, basal and stimulated superoxide anion levels, lymphocyte proliferation in response to phytohemagglutinin A (PHA) and natural killer (NK) activity) of leukocytes (neutrophils and lymphocytes) from anxious women.The results showed that the most favorable effects of acupuncture on the immune functions appear 72 hours after the single session and persist one month after the end of the complete treatment. Impaired immune functions in anxious women (chemotaxis, phagocytosis, lymphoproliferation and NK activity) were significantly improved by acupuncture, and augmented immune parameters (superoxide anion levels and lymphoproliferation of the patient subgroup whose values had been too high) were significantly diminished. Acupuncture brought the above mentioned parameters to values closer to those of healthy controls, exerting a modulatory effect on the immune system.
People with stiff-person syndrome should exercise extreme caution in considering traditional chiropractic care to address their symptoms. Because of the nature of chiropractic adjustments and the nature of SPS, there is some clear potential for harm.
Gentle massage may help temporarily alleviate muscle tension, but before seeking treatment from a chiropractor or massage therapist (or any complementary therapy practitioner) you must be completely confident that the practitioner fully understands SPS and the implications of your individual symptoms. This may involve providing materials to the practitioner or inviting the practitioner to contact your medical specialist.