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Friday, October 31, 2014

Living With The Pain of Multiple Sclerosis

Are you in pain?

There is a striking difference between pain that is acute in nature (sudden injury/fracture/laceration severe headache,) and pain that is chronic (daily, ongoing, unchanging, long-term.)

The body has mechanisms in place to cope with sudden, severe pain, with responses mimicking the "flight or flight" response. The body responds with adrenaline, increased heart rate and blood pressure, and natural pain response chemicals (endorphins)  that help to ease the pain a bit. The body mounts an all-out response to sudden illness and pain, and is well equipped to cope with these periodic occurrences. 

How does the body cope with pain that is chronic? Pain that is daily, ongoing, never relenting, and does not stop? Pain that goes on for weeks, months, years? It turns out, the body isn't very good at coping with this type of pain, the pain that many experience with multiple sclerosis.

Chronic pain is difficult to treat and difficult to live with
MS pain can be periodic, experienced only during a relapse, or it can be a daily battle for many patients. Pain can result from inappropriate nerve response to the damage caused by MS, or it can result from spasticity (muscle spasm,) which is also a product of damaged nerves. Regardless of the type of pain, most MS patients will cope with chronic pain at some point.

Unfortunately, we don't have a lot of great medications to choose from for chronic pain. There are medications like gapapentin (neurontin) and Lyrica that may help calm nerve pain. There are anti-spasmotic drugs such as Baclofen or Zanaflex that can calm spasticity. These may take the edge off, but many patients still experience daily pain. Opiate medications such as vicodin and norco are not a good answer for chronic types of pain, because they can lead to dependence. These medications are designed only for short term, acute pain types. Many chronic pain patients end up needing more and more opiate medications, eventually leading to severe dependency/addiction issues. My feeling as a healthcare provider is: opiates should never be started for chronic pain because they are a dead end road. They only lead to more problems. Do we really need more problems?? I have several close friends who have become dependent on opiate medications, and I have seen first hand the devastating consequences of prescription drug abuse while working in healthcare. It is better to never even consider these medications for pain management if you don't absolutely have to. As always, follow the advice of your pain specialist or neurologist.
Opiates are a slippery slope: Be wary of the potential risks

Medication and traditional treatment aside, how does the mind cope with this pain on a daily basis? I can tell you, I have felt pain on a daily basis for probably about two years now. I never appreciated how life-altering chronic pain can become. I spent the first three years after diagnosis pain-free. I felt so fortunate at that time, but soon I began to experience muscle spasm, leaving me feeling like I had just run a marathon every single day. The muscle pain was so intense, I could not walk on some days. I have neck and shoulder pain that shoots from my neck, down to the shoulder-clavicle, and down my arm. I also began to experience facial pain, like a severe type of dental pain on one side, that turned out to be trigeminal neuralgia (at one time called "the suicide disease" because so many patients ended their lives after suffering from the intense pain.)

My neurologist has been excellent, helping me find the right "cocktail" of medications for pain, including gapapentin three times daily, tegretol (an anti-seizure drug that is indicated for trigeminal neuralgia), and baclofen daily for spasm. I have good days and bad days, but on many days I feel fairly severe pain by the end of the day. 

One of the problems that goes hand-in-hand with chronic pain is substance abuse. It is a dangerous, tempting road for those who cope with daily pain. The temptation to ease pain by taking a drink is very real. Unfortunately, alcohol does ease the pain, but as we know.....it is no solution. It is another dead-end road. I have experienced the euphoric relief that alcohol can give me, but I have to fight the urge to have another, and another tomorrow, and another the next day. It is not the answer. So, what IS the answer?

Alcohol is not a good answer for chronic pain
A National Institute of Health study notes: "Substance abuse may be present in 19% of MS patients and contribute to high rates of depression. There may be greater risk of harm due to substance abuse in people with MS because of the potential magnification of motor and cognitive impairments. Comprehensive MS care should include substance abuse screening and advice to cut down or abstain from use" (http://www.ncbi.nlm.nih.gov/pubmed/14760950.)

In essence, the effects of alcohol and drugs on MS patients are amplified, causing existing MS deficits like balance problems and weakness to become even more severe. Though the immediate pain relief these substances provide us might be tempting, we must see these substances as a poor solution. We must find solutions that we can use for a lifetime. Solutions that can be maintained daily for the rest of our lives, safely and effectively.

Alternative treatments such as biofeedback, acupuncture, massage, meditation, and yoga have been studied and found to show promise for the treatment of chronic pain for some patients. The key is to find your magic combination. Try not to make assumptions about whether or not a treatment might work for you. Give it a try if you get the okay from your provider.

Pain specialists are found worldwide, and the treatment of chronic pain conditions such as MS is a medical subspecialty. Certain physicians specialize in the management of chronic pain, and it is important for MS patients to connect with a specialist such as this. You cannot manage your pain without help. For those like me who don't like to ask for help, you must. For those who feel that they can manage this type of pain without treatment, please reach out. No one should suffer daily from any pain unnecessarily, and treatment can improve your life dramatically. Don't waste one day suffering, when there is a world out there for you to experience. 


Pain Resources:


American Chronic Pain Association (ACPA)
P.O. Box 850, Rocklin, CA 95677-0850
800-533-3231 (toll free) or 916-632-3208 (fax) or email

TNA- The Facial Pain Association (Trigeminal Neuralgia)
925 Northwest 56th Terrace, Suite C, Gainesville, FL 32605-6402
800-923-3608 (toll free), 352-331-7009 or 352-331-7078 (fax) or email
* please make sure you state your diagnosis of TN*

American Academy of Pain Medicine
8735 W. Higgins Rd., Suite 300, Chicago, IL 60631-2738
847-375-4731


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