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| MS in focus Issue
10
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2007
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A record high number of people - 763 - responded to the MSIF online survey about pain and MS, reflecting the importance of this subject for people with MS. The results show that people experience a wide variety of painful symptoms as part of their MS and that it has a big impact on their quality of life. |
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Three quarters of people surveyed felt that the pain they experience is related to MS, or in other words, was not a separate disease or problem, but part of their MS. The most common type of pain experienced was dysesthetic pain (burning pain), followed by low back pain and painful tonic spasms.
Types of pain experienced
More than 300 respondents also had types of pain that were not listed, including pain in specific parts of the body, such as toothache, genital pain or pain in the legs. Others reported tingling or pins and needles pain, sharp or shooting pains that radiate around the body or down the legs or back, painful skin such as the scalp when hair is brushed, headaches, muscular pain, a feeling of being pressed from the inside out, a feeling that parts of the body are frozen, or even whole body pain.
When asked to rate the effect of pain on quality of life, almost half of respondents (47 percent) rated the effect as 7 or higher (where 0 is no effect and 10 is an extreme effect), indicating the high negative impact pain in MS can have on day-to-day life.
Promisingly, 74 percent of respondents regularly discussed the pain they experience with their neurologist, nurse or other health professional, and the majority treated pain with medication (77 percent). Other treatments were lifestyle changes such as exercise (39 percent), physical therapies (28 percent), and complementary therapies (24 percent) such as hydrotherapy, acupuncture, massage, reiki and meditation.
Amongst other responses were no treatment and just 'living with it', rest, heat or cold packs, using marijuana and using a TENS unit. When asked how successful the treatment had been, only one tenth said it had been very successful, 70 percent said it was 'somewhat successful', while 20 percent said it had not been successful.
Pain treatment success
Almost half of respondents (47 percent) said that they had found it difficult to find information about pain and MS, compared with those who had found it easy (39 percent). 14 percent had not looked for information.
The main source of information about pain was found to be the Internet (80 percent), followed by MS society information booklets and materials (66 percent) and a doctor or nurse (60 percent). 14 percent of people answered 'other', with main sources including other people with MS (both at support groups and at online chat rooms or by email), books, journals and physiotherapists.
Conclusion
Pain is seen by many as a major part of their MS and a symptom that can adversely affect quality of life. The wide variety of pain-related symptoms and treatments listed by people gives an indication of the individual nature of pain in MS and the difficulty respondents and their health care team have in effectively treating pain.
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| Survey comments
"The kind thing about my MS pain is that it travels and does not stay in the same place for too long!"
"I often wake up at night because of pain."
"My muscles are very tight and painful all over my body. I’d say this pain is the single most hampering thing of my MS. It prevents me from walking more, sleeping better, and generally living a better life."
"My treatment is hit and miss as my doctor and nurses don’t view pain as part of MS."
"When I was first diagnosed with MS in 1981, pain was denied. Now much more information is available."
"I don’t think I have found a good information source because I have trouble describing some of the things that happen. I lack the knowledge of the disease and the correct vocabulary to describe it to my doctor."
"Other friends with MS are often the best source of information. They get it."
"The information is there, but the treatments are not!"
"It is very frustrating at times when most of the information out there glosses over pain as a symptom. Not enough people report pain with MS to make it matter. It is my biggest symptom along with fatigue." |
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