Re: Pain in MS--true or not?

January 10, 2009

Hmmm, Could this be what is experiencing in her leg/s (sometimes one leg, sometime both)? She describe it as "growing pains", or very similar to that. She has had it on and off for as long as she has had her MS diagnosis, and she has thought it was part of the side effects from her Rebif treatment (as "growing pains" and "flu ache" can be hard to distinguish from one another). But the last month or so it has been more or less constant (although not 100% constant), and she is starting to wonder if it could be something else - part of MS or something not MS - since her other side effects are not constant like that.What do the rest of you think? Have you experienced something like that?love/Reb>> I took part in a teleconference last year with Dr.> Vollmer who is a well-known researcher, MS specialist and the> former head of the NARCOMS study at Yale. He moved from Yale to> Barrows Neurological Institute in Phoenix several years ago. Dr.> Vollmer said 40% of MSers. And here below the NMSS says "almost half> (48%)" had chronic pain. Have you ever done a web search with the terms> "MS pain"? Here are some links you can look at along with a small clip> (in parentheses) of the percentage they report re: pain in MS.> http://www.friendswithms.com/pain_and_ms.htm> (Pain is a common occurrence in MS, with 30-50%)> http://www.msakc.org/Articles/MSPain.htm> (Most of the recent studies show that neuropathic pain... experienced by 50% or more of MS> patients) > http://www.mslifelines.com/understanding-ms/symptoms-of-ms/pain.jsp> (More than half of the people with MS find that pain is a problem.)> http://www.msakc.org/Articles/MSPain.htm> (50% or more)> > And this is a really good one and I recommend it for anyone with MS and pain:> http://www.webmd.com/multiple-sclerosis/features/pain-multiple-sclerosis?src=rss_homecare> In a national survey of more than 7,000 MS patients, 70%> of them had experienced some kind of pain, and at least 50% were experiencing> some kind of pain at the time of the survey," Bethoux says.> > MS pain differs from the kind of pain you might get with a> headache, a joint injury, or muscle strain. "It's often more diffuse,> affecting several areas of the body at a time. It often changes over time,> getting worse or better for no apparent reason. It tends to fluctuate a> lot," says Bethoux. "People often find it hard to describe: It's> sometimes described as like a toothache, other times like a burning pain, and> sometimes as a very intense sensation of pressure. It's very distressing for> patients because they have a hard time explaining what their pain experience> is."> > hugs)))> Sharon> > > Please read this from the National MS Society at http://www.nationalmssociety.org/about-multiple-sclerosis/symptoms/pain/index.aspx> Pain syndromes are common in MS. In one study, 55% of people with MS> had "clinically significant pain" at some time. Almost half (48%) were> troubled by chronic pain. This study suggested that factors such as age> at onset, length of time with MS, or degree of disability played no> part in distinguishing the people with pain from the people who were> pain free. The study also indicated that twice as many women as men> experienced pain as part of their MS.> Several Sources and Types of Pain in MS > Acute Pain> Trigeminal neuralgia is a stabbing pain in the> face. It can occur as an initial symptom of MS. While it can be> confused with dental pain, this pain is neuropathic (caused by damage> to the trigeminal nerve) in origin. It can usually be treated with> medications such as the anticonvulsants carbamazepine (Tegretol®) or phenytoin®). (Dilantin> Lhermitte's sign is a brief, stabbing,> electric-shock-like sensation that runs from the back of the head down> the spine, brought on by bending the neck forward. Medications,> including anticonvulsants, may be used to prevent the pain, or a soft> collar may be used to limit neck flexion.> Burning, aching or "girdling" around the body are all neurologic in origin. The technical name for them is dysesthesias. These pains are often treated with the anticonvulsant medication gabapentin (Neurontin®). Dysesthesias may also be treated with an antidepressant such as amitriptyline (Elavil®),> which modifies how the central nervous system reacts to pain. Other> treatments include wearing a pressure stocking or glove, which can> convert the sensation of pain to one of pressure; warm compresses to> the skin, which may convert the sensation of pain to one of warmth; and> over-the-counter acetaminophen (Tylenol® and others) which may be taken daily, under a physician's supervision.> Duloxetine hydrochloride> (Cymbalta®) was approved by the FDA in 2004 for treatment of depression> and treatment of pain associated with diabetic peripheral neuropathy.> Cymbalta® belongs to the group of medications known as selective> serotonin and norepinephrine reuptake inhibitors (SSNRIs). Although not> specifically approved for use in MS, its effectiveness in diabetic> neuropathy makes it a suitable candidate for the treatment of> neuropathic pain in MS, and MS specialists consider it a good treatment> option for people with MS.> Pregabalin (Lyrica®), also approved by the FDA in 2004, is> recommended for the treatment of neuropathic pain associated with> diabetes, fibromyalgia and certain types of seizures. Although not> specifically approved for use in MS, it is also considered a good> treatment option for people with MS.> Chronic Pain> Burning, aching, prickling or "pins and needles" may be chronic rather than acute. The treatments are the same as for the acute dysesthesias described above.> Pain of spasticity has its own subcategories. Muscle spasms or cramps, called flexor spasms, may occur. Treatments include medication with baclofen (Lioresal®) or tizanidine (Zanaflex®),> ibuprofen, or other prescription strength anti-inflammatory agents.> Treatment also includes regular stretching exercises and balancing> water intake with adequate sodium and potassium, as shortages in either> of these can cause muscle cramps. Tightness and aching in joints is> another manifestation of spasticity, and generally responds well to the> treatments described above.> Back and other musculoskeletal pain in MS can have> many causes, including spasticity. Pressure on the body caused by> immobility, incorrect use of mobility aids, or the struggle to> compensate for gait and balance problems may all contribute. An> evaluation to pinpoint the source of the pain is essential. Treatments> may include heat, massage, ultrasound, physical therapy and treatment> for spasticity.> Pain and the Emotions> Most pain in MS can be treated. But not all pain a person with MS> has is due to MS. Whatever the source, pain is a complex problem that> should not be ignored. Many factors may contribute, including fear and> worry. A multidisciplinary pain clinic> may be able to treat chronic disabling pain with medication in> combination with such alternative therapies as biofeedback, hypnosis,> yoga, meditation or acupuncture. Self-help may also play an important> role in pain control. People who stay active and maintain positive> attitudes are often able to reduce the impact of pain on their quality> of life.>

January 11, 2009

Thanks for your suggestion! Yes she is on Rebif, and up until a month ago that pain was very clearly brought on by Rebif (would start during the night after the shot, and linger on for some 24 h after that). But lately it has been coming and going without any apparent connection to the shots (could very well be at it's worst on a Sunday night, the day and time when she is furthest from her last shot as she takes them monday, wednesday and friday, or could be non-existant the night and/or day after the shot, etc). But maybe it could still be Rebif that does it?love/Reb>> Hi Reb. Isn't on Rebif? I know in my case that the Rebif brings> that pain on too. Maybe this could be for too.> Jolie>

January 11, 2009

http://multiple-sclerosis.emedtv.com/rebif/rebif-side-effects.html

Just one link which might be helpful--not exactly "hard" scienc.

Give our love to , Reb, and save some for you,

n

To: MSersLife Sent: Sunday, January 11, 2009 10:42:53 PMSubject: Re: Pain in MS--true or not?

Thanks for your suggestion! Yes she is on Rebif, and up until a month ago that pain was very clearly brought on by Rebif (would start during the night after the shot, and linger on for some 24 h after that). But lately it has been coming and going without any apparent connection to the shots (could very well be at it's worst on a Sunday night, the day and time when she is furthest from her last shot as she takes them monday, wednesday and friday, or could be non-existant the night and/or day after the shot, etc). But maybe it could still be Rebif that does it?love/Reb>> Hi Reb. Isn't on Rebif? I know in my case that the Rebif brings> that pain on too. Maybe this could be for too.> Jolie>

January 12, 2009

Hi Reb! I hope is ok. Im so behind on emails but read this one 2nd

and wanted to reply before going to sleep. What kind of pain is she

having? Hopefully I will read enough of the emails to see what you

wrote previously. I hope she is doing better. Send her my love and let

her know im praying for her. I have chronic pain pretty much everywere