Pictures
Robbie check down it has back pain with MS as well as some links at the bottom that might help
MS Pain and What To Do About It
By Laurie Long
Twenty years ago doctors used to say that there was no pain with MS. But these days there is no question from any of the medical community that pain associated with MS is real. Most of the recent studies show that neuropathic pain - pain caused by problems in the nervous system - is experienced by 50% or more of MS patients sometime during the course of the disease.
So what causes this pain? Demyelinated axons may cause neural impulses to leak out and spread to other adjacent demyelinated fibers. If the adjacent fibers belong to the sensory pathway, these misdirected neural impulses give rise to pain. Trigeminal neuralgia (sharp facial pain brought on by chewing or touch) is an example of this pain, where the motor and sensory branches of the trigeminal nerve short circuit. Nerve cells can also become overstimulated or misfire. This means that an overabundance of pain messages are sent to the brain, causing severe and often long-lasting agony. These types of pain do not respond to ordinary pain medications, which should be avoided, as they are not only ineffective, but addictive. Muscular and skeletal pain is also prevalent and can be due to muscular weakness, spasticity and imbalance.
Pain associated with MS is divided into different areas, but the most common classifications are acute, subacute, and chronic pain.
Acute Pain
Acute pain syndromes are sudden attacks of pain, often repetitive and lasting anywhere from seconds to hours. Acute pain is usually caused by abnormal conduction or 'short circuit' along demyelinated nerve fibers. Trigeminal neuralgia (see above) is the most recognized acute pain syndrome. Trigeminal neuralgia occurs about 300 times more frequently in people with MS than in the general population. Lhermittes sign (electric-shock sensation passing down the back when the head is flexed forward) and paroxysmal (brief) pain in the arms and legs are also known pain syndromes found in MS. These symptoms can be triggered by touch, movement, or even rapid breathing. Acute pain syndromes often occur at the beginning of the disease and are less frequent than the chronic pain syndromes (less than 15% according to Moulin at al, 1988).
Treatment
The preferred drug for treating acute pain syndromes in MS is anticonvulsant medication. Carbamazepine (Tegretol) is the drug of choice. Gabapentin (Neurontin) and phenytoin (Dilantin) are also used. These medications block abnormal nerve conduction at the demyelinated site. These drugs can have side effects, and may also cause the worsening of other MS symptoms such as weakness or tremor because they block nerve conduction. Capsaicin, a topical cream made from hot chili peppers, is also used to treat Trigeminal Neuralgia.
Subacute Pain
Subacute pain can also be caused by demyelination, or from a secondary source, such as the swelling of the nerve. The most common subacute syndrome is optic neuritis. Optic Neuritis is an aching, throbbing pain around or behind the eye and is provoked by eye movement. It is often the first symptom of MS. Optic Neuritis usually resolves in 7-10 days.
Treatment
Treatment of Optic Neuritis is generally with corticosteriods like Solumedrol or Prednisone to reduce optic nerve swelling.
Chronic Pain
Chronic neurogenic pain is the most common, and the most intractable of the pain syndromes in MS. Chronic pain syndromes make up 50 to 80% of all pain experienced in MS. Chronic pain syndromes include paresthesias and dysesthesias .
Paresthesias include pins and needles, tingling, shivering, burning pains, feeling of pressure, and areas of skin with heightened sensitivity.
Dysesthesias include burning, aching or girdling around the body.
Treatment
Treatment for neuropathic pain is with antidepressants called tricyclics. Amitriptyline (Elavil) has been the most commonly used tricyclic, but newer antidepressants such as bupropion (Wellbutrin) are replacing the older tricyclics because of reduced side effects.
If these medications do not work anticonvulsants, narcotics or the anti-spasticity drug baclofen can be tried. Combinations of these drug therapies can also be tried, although the risk of side effects rises with increased medication.
In addition to the drug therapies, other therapies such as physiotherapy, relaxation, meditation, deep breathing, yoga, chi gung, biofeedback, massage, chiropractic, hydrotherapy, acupuncture, etc. can help to alleviate and control chronic pain. Transcutaneous nerve stimulation (TENS) which is actually a variant of acupuncture, is also sometimes used to provide relief.
Other MS Pain
Other MS pain is often not directly related to demyelination and neuropathic pain. Chronic pain syndromes such as backache and leg spasms affect many people with MS. Reduced mobility, poor posture in walking and sitting can cause lower back pain. Spasms (intense cramping) are often due to increased disability and immobility.
Treatment
Back pain can be treated with non-steriodal anti-inflammatory medication (NSAIDS), physiotherapy, chiropractic, massage, yoga and other stretching and strengthening exercises. Treatment for spasms is generally anti-spasticity medication such as baclofen (Lioresal).Tizanidine (Zanaflex), diazepam (Valium) and dantrolene (Dantrium) are also used. This treatment is combined with physiotherapy - stretching and strengthening exercises, which should be done on a daily basis.
Multidisciplinary Pain Programs
For some people, even these pain relief therapies may not be sufficient to help control their pain. Pain clinics and accredited pain programs may be the answer. Such programs use a multidisciplinary approach to combating and controling pain. They tailor their program to the individual's needs. The Commission on Accreditation of Rehabilitation Facilities [telephone: (800) 281-6531] can provide you with a listing of accredited pain programs in your area (your health insurance may require that the unit be CARF accredited in order for you to receive reimbursement). You can also contact the American Pain Society , an organization for health care providers, at (847) 375-4715 additional information about pain units in your area.
Conclusion
It is critical that a correct diagnosis of the cause of any type of pain be made to ensure that it is properly treated. There are more available drugs and other therapies today for MS pain than ever before, and new discoveries are giving people more choices to combat that pain. But the most important point is that you don't "just have to live with" MS pain! Never assume that new pain is "just my MS". Have it evaluated by your health care provider and get the proper therapy to alleviate it. Take control of your pain - don't let it take control of you!
PAIN CHART
Type of Pain
Drug Therapies
Other Therapies
Acute:
Trigeminal neuralgia
Lhermittes sign
Paroxysmal in arms
or legs
Carbamazepine (Tegretol), Gabapentin (Neurontin), Phenytoin (Dilantin), Capsaicin
Meditation, deep breathing, relaxation, chi gung,
Subacute:
Optic Neuritis
Solumedrol, Prednisone
Meditation, deep breathing, relaxation, chi gung,
Chronic Pain:
Paresthesias
Dysesthesias
Amitriptyline (Elavil), Bupropion (Wellbutrin),
Carbamazepine (Tegretol),
Gabapentin (Neurontin),
Phenytoin (Dilantin),
Baclofen (Lioresal)
Physiotherapy, relaxation, meditation, deep breathing, yoga, chi gung, biofeedback, massage, chiropractic, hydrotherapy, acupuncture, TENS
Other Pain:
Backache
Leg spasms
Non-steriodal anti-inflammatory medication (NSAIDS),
Baclofen (Lioresal)
Tizanidine (Zanaflex),
Diazepam (Valium)
dantrolene (Dantrium)
Physiotherapy, chiropractic, massage, yoga and other stretching and strengthening exercises
Pain Websites:
http://www.theacpa.org The American Chronic Pain Association
http://www.tna-support.org Trigeminal Neuralgia Association
http://www.paincare.org The National Foundation for the Treatment of Pain
http://www.painmed.org American Academy of Pain Medicine
http://www.painfoundation.org The American Pain Foundation
http://www.ampainsoc.org The American Pain Society
http://www.painsupport.co.uk/ Pain Support - Natural Pain Relief
http://www.mayoclinic.com/invoke.cfm?ob ... 11D6C5723A The Mayo Clinic on Trigeminal Neuralgia
MSA Articles on Alternative Therapies for Pain Relief:
http://www.msakc.org/Articles/MattersoftheMind.htm
http://www.msakc.org/Articles/AcupunctureInterview.htm
http://www.msakc.org/Articles/MeditationCanCalm.htm
http://www.msakc.org/Articles/MedicalMarijuana.htm
<shortened url>
MS Pain and What To Do About It
By Laurie Long
Twenty years ago doctors used to say that there was no pain with MS. But these days there is no question from any of the medical community that pain associated with MS is real. Most of the recent studies show that neuropathic pain - pain caused by problems in the nervous system - is experienced by 50% or more of MS patients sometime during the course of the disease.
So what causes this pain? Demyelinated axons may cause neural impulses to leak out and spread to other adjacent demyelinated fibers. If the adjacent fibers belong to the sensory pathway, these misdirected neural impulses give rise to pain. Trigeminal neuralgia (sharp facial pain brought on by chewing or touch) is an example of this pain, where the motor and sensory branches of the trigeminal nerve short circuit. Nerve cells can also become overstimulated or misfire. This means that an overabundance of pain messages are sent to the brain, causing severe and often long-lasting agony. These types of pain do not respond to ordinary pain medications, which should be avoided, as they are not only ineffective, but addictive. Muscular and skeletal pain is also prevalent and can be due to muscular weakness, spasticity and imbalance.
Pain associated with MS is divided into different areas, but the most common classifications are acute, subacute, and chronic pain.
Acute Pain
Acute pain syndromes are sudden attacks of pain, often repetitive and lasting anywhere from seconds to hours. Acute pain is usually caused by abnormal conduction or 'short circuit' along demyelinated nerve fibers. Trigeminal neuralgia (see above) is the most recognized acute pain syndrome. Trigeminal neuralgia occurs about 300 times more frequently in people with MS than in the general population. Lhermittes sign (electric-shock sensation passing down the back when the head is flexed forward) and paroxysmal (brief) pain in the arms and legs are also known pain syndromes found in MS. These symptoms can be triggered by touch, movement, or even rapid breathing. Acute pain syndromes often occur at the beginning of the disease and are less frequent than the chronic pain syndromes (less than 15% according to Moulin at al, 1988).
Treatment
The preferred drug for treating acute pain syndromes in MS is anticonvulsant medication. Carbamazepine (Tegretol) is the drug of choice. Gabapentin (Neurontin) and phenytoin (Dilantin) are also used. These medications block abnormal nerve conduction at the demyelinated site. These drugs can have side effects, and may also cause the worsening of other MS symptoms such as weakness or tremor because they block nerve conduction. Capsaicin, a topical cream made from hot chili peppers, is also used to treat Trigeminal Neuralgia.
Subacute Pain
Subacute pain can also be caused by demyelination, or from a secondary source, such as the swelling of the nerve. The most common subacute syndrome is optic neuritis. Optic Neuritis is an aching, throbbing pain around or behind the eye and is provoked by eye movement. It is often the first symptom of MS. Optic Neuritis usually resolves in 7-10 days.
Treatment
Treatment of Optic Neuritis is generally with corticosteriods like Solumedrol or Prednisone to reduce optic nerve swelling.
Chronic Pain
Chronic neurogenic pain is the most common, and the most intractable of the pain syndromes in MS. Chronic pain syndromes make up 50 to 80% of all pain experienced in MS. Chronic pain syndromes include paresthesias and dysesthesias .
Paresthesias include pins and needles, tingling, shivering, burning pains, feeling of pressure, and areas of skin with heightened sensitivity.
Dysesthesias include burning, aching or girdling around the body.
Treatment
Treatment for neuropathic pain is with antidepressants called tricyclics. Amitriptyline (Elavil) has been the most commonly used tricyclic, but newer antidepressants such as bupropion (Wellbutrin) are replacing the older tricyclics because of reduced side effects.
If these medications do not work anticonvulsants, narcotics or the anti-spasticity drug baclofen can be tried. Combinations of these drug therapies can also be tried, although the risk of side effects rises with increased medication.
In addition to the drug therapies, other therapies such as physiotherapy, relaxation, meditation, deep breathing, yoga, chi gung, biofeedback, massage, chiropractic, hydrotherapy, acupuncture, etc. can help to alleviate and control chronic pain. Transcutaneous nerve stimulation (TENS) which is actually a variant of acupuncture, is also sometimes used to provide relief.
Other MS Pain
Other MS pain is often not directly related to demyelination and neuropathic pain. Chronic pain syndromes such as backache and leg spasms affect many people with MS. Reduced mobility, poor posture in walking and sitting can cause lower back pain. Spasms (intense cramping) are often due to increased disability and immobility.
Treatment
Back pain can be treated with non-steriodal anti-inflammatory medication (NSAIDS), physiotherapy, chiropractic, massage, yoga and other stretching and strengthening exercises. Treatment for spasms is generally anti-spasticity medication such as baclofen (Lioresal).Tizanidine (Zanaflex), diazepam (Valium) and dantrolene (Dantrium) are also used. This treatment is combined with physiotherapy - stretching and strengthening exercises, which should be done on a daily basis.
Multidisciplinary Pain Programs
For some people, even these pain relief therapies may not be sufficient to help control their pain. Pain clinics and accredited pain programs may be the answer. Such programs use a multidisciplinary approach to combating and controling pain. They tailor their program to the individual's needs. The Commission on Accreditation of Rehabilitation Facilities [telephone: (800) 281-6531] can provide you with a listing of accredited pain programs in your area (your health insurance may require that the unit be CARF accredited in order for you to receive reimbursement). You can also contact the American Pain Society , an organization for health care providers, at (847) 375-4715 additional information about pain units in your area.
Conclusion
It is critical that a correct diagnosis of the cause of any type of pain be made to ensure that it is properly treated. There are more available drugs and other therapies today for MS pain than ever before, and new discoveries are giving people more choices to combat that pain. But the most important point is that you don't "just have to live with" MS pain! Never assume that new pain is "just my MS". Have it evaluated by your health care provider and get the proper therapy to alleviate it. Take control of your pain - don't let it take control of you!
PAIN CHART
Type of Pain
Drug Therapies
Other Therapies
Acute:
Trigeminal neuralgia
Lhermittes sign
Paroxysmal in arms
or legs
Carbamazepine (Tegretol), Gabapentin (Neurontin), Phenytoin (Dilantin), Capsaicin
Meditation, deep breathing, relaxation, chi gung,
Subacute:
Optic Neuritis
Solumedrol, Prednisone
Meditation, deep breathing, relaxation, chi gung,
Chronic Pain:
Paresthesias
Dysesthesias
Amitriptyline (Elavil), Bupropion (Wellbutrin),
Carbamazepine (Tegretol),
Gabapentin (Neurontin),
Phenytoin (Dilantin),
Baclofen (Lioresal)
Physiotherapy, relaxation, meditation, deep breathing, yoga, chi gung, biofeedback, massage, chiropractic, hydrotherapy, acupuncture, TENS
Other Pain:
Backache
Leg spasms
Non-steriodal anti-inflammatory medication (NSAIDS),
Baclofen (Lioresal)
Tizanidine (Zanaflex),
Diazepam (Valium)
dantrolene (Dantrium)
Physiotherapy, chiropractic, massage, yoga and other stretching and strengthening exercises
Pain Websites:
http://www.theacpa.org The American Chronic Pain Association
http://www.tna-support.org Trigeminal Neuralgia Association
http://www.paincare.org The National Foundation for the Treatment of Pain
http://www.painmed.org American Academy of Pain Medicine
http://www.painfoundation.org The American Pain Foundation
http://www.ampainsoc.org The American Pain Society
http://www.painsupport.co.uk/ Pain Support - Natural Pain Relief
http://www.mayoclinic.com/invoke.cfm?ob ... 11D6C5723A The Mayo Clinic on Trigeminal Neuralgia
MSA Articles on Alternative Therapies for Pain Relief:
http://www.msakc.org/Articles/MattersoftheMind.htm
http://www.msakc.org/Articles/AcupunctureInterview.htm
http://www.msakc.org/Articles/MeditationCanCalm.htm
http://www.msakc.org/Articles/MedicalMarijuana.htm
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John was diagnosed Jan 2005. On lipitor 20mg .On Copaxone since July 4,2005. Vitamin D3 2000iu-4000iu (depending on sunshine months)June 10 2005(RX::Dr. O'Connor) Omega 3 as well Turmeric since April 2005. Q10 60mg. 1500mg liquid Glucosamine Nov 2005.
I was watching some ms videos on youtube and it made me think that we need a commercial about ms that really shows what it can be like and maybe that would help with raising money. It seems like because ms isn't fatal it is less in the spotlight and doesn’t get the attention it deserves. There were some videos set to music and they really hit home I would like seeing something on TV about ms more than I do...http://www.youtube.com/index P.S who would pay for that?
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scoobyjude
- Family Elder
- Posts: 517
- Joined: Sat Feb 18, 2006 3:00 pm
- Location: suburb of Chicago, IL USA
- Contact:
I would think the NMSS could fork over some bucks for that. You're right Robbie, I don't think most people even understand how complex, unpredictable and life-altering MS can be. It is one of those diseases that is often overlooked. We need a strong spokesperson that will actually get out there and get MS some much needed fund raising. If we could get an A list celebrity, it would really help. Don't know how realistic that is though.
Try writing Montel Williams with your suggestion. Can't hurt. We could even collect all of our names here in support.
John was diagnosed Jan 2005. On lipitor 20mg .On Copaxone since July 4,2005. Vitamin D3 2000iu-4000iu (depending on sunshine months)June 10 2005(RX::Dr. O'Connor) Omega 3 as well Turmeric since April 2005. Q10 60mg. 1500mg liquid Glucosamine Nov 2005.
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lyndacarol
- Family Elder
- Posts: 3394
- Joined: Thu Dec 22, 2005 3:00 pm
- Contact:
A celebrity spokesman
Robbie, Melody, Lyon, and all--How about contacting Meredith Vieira (now on NBC's Today Show)? Any one of you has the eloquence and ability to do it! Her husband Richard Cohen has MS, has written a book on it in the last year, has even been interviewed lately in the NMSS Inside MS.
They have a personal interest and know their way around the media.
Just a thought.
They have a personal interest and know their way around the media.
Just a thought.
This statement makes me think that by not joining the band and letting them inject me with what ever, i don't have the right to complain. There is strong drugs out there that are being tested on us but in the same sentence they wonder if vitamin d might have something to do with it.Why would i buy a ticket for 5$ when the most you can win is 10$ They will not make any more money from me or should i say the tax payers, i already made my contribution(interferon). Now that i've said that there will be a cure tomorrow..but if you don't enter you can't win.
Robbie,
I think that quote was mine. All I am saying is that your efforts might be best focussed on getting on a trial. My trial starts in two weeks and I'll be in hospital for 8 days. Who knows what the outcome will be, but at the end of the day I can say that I tried.
It will also give me two weeks away from the internet and this website. I love all (most) of the contributors but this can take over your life - look at the number of postings I have made. I think you should join me on a two week break from this site.
Boredom is one of the real killers with this disease - especially when you think of what you used to do. I know you said your legs weren't godd but what about your arms / hands? What about making models or woodwork? I'm not trying to be patronising, but at least when your wife got home from work you could have achieved something / made something. Otherwise when she asks you what you have done all you can say is that you posted some comments on a website which told everyone what they know - this disease is a bastard and crap.
I really wish I could help, but my only advice is try to do something different, or only log-on every fifth day.
Ian
I think that quote was mine. All I am saying is that your efforts might be best focussed on getting on a trial. My trial starts in two weeks and I'll be in hospital for 8 days. Who knows what the outcome will be, but at the end of the day I can say that I tried.
It will also give me two weeks away from the internet and this website. I love all (most) of the contributors but this can take over your life - look at the number of postings I have made. I think you should join me on a two week break from this site.
Boredom is one of the real killers with this disease - especially when you think of what you used to do. I know you said your legs weren't godd but what about your arms / hands? What about making models or woodwork? I'm not trying to be patronising, but at least when your wife got home from work you could have achieved something / made something. Otherwise when she asks you what you have done all you can say is that you posted some comments on a website which told everyone what they know - this disease is a bastard and crap.
I really wish I could help, but my only advice is try to do something different, or only log-on every fifth day.
Ian