Find the Right Support Group for Multiple Sclerosis and/or Chronic Pain

By: Loolwa Khazzoom, Founder, Dancing with Pain

April 27th, 2010 • Living with Chronic PainPrint Print

The following is an interview with Rosalind Kalb, PhD, Vice President of the Professional Resource Center of the National Multiple Sclerosis Society.

What might be the benefits of a chronic pain support group, for people with MS?

Chronic pain support groups are not common in MS. In the 30 years that I’ve worked in the field, I have never encountered a support group that is focused specifically on chronic pain. However, pain is definitely a topic of conversation among participants in regular MS support groups, particularly when it becomes debilitating, distracting, and depressing. And certainly, the support group setting is one in which people might get ideas about how to manage and cope with any pain they are experiencing.

Although pain is a common symptom in MS, with studies suggesting a prevalence among 44-80% of MS patients, it is only one of many symptoms that people with MS may experience. Therefore, I would see more value in a support group in which people could address any symptoms they were experiencing.

How can joining a support group change the life of someone with MS in particular and chronic pain in general?

Support groups vary tremendously in their structure, style, and content, so it’s really not possible to answer this question in a global way. When a person finds a support group that’s a good “fit”— that is well-run, has a comfortable style and members that are mutually supportive and respectful, and offers what the person is looking for—it can be a very gratifying, life-changing experience. But it may take several tries to find the right group.

Some groups offer good information, emotional support, and plenty of opportunities for constructive problem-solving, while others allow misinformation to flourish, one or more out-spoken members to control and manipulate the conversation, and unconstructive complaining and flaming to go unchecked. The latter kind of group isn’t beneficial for anyone.

In a 2007 article entitled “Psychosocial factors associated with pain intensity, pain-related interference, and psychological functioning in persons with multiple sclerosis and pain” by Osborne et al., “catastrophizing” was found to be negatively associated with many aspects of coping with pain. This would suggest that if one were participating in a support group in which people primarily sat around catastrophizing about their pain, rather than discussing constructive ways to manage and treat it, the results might be more negative than positive.

What are some of the resources offered by the National MS Society, in terms of joining or starting a chronic pain support group?

If a chronic pain support group is currently being offered by any of our chapters, I have not heard of it. Society-sponsored support groups tend to be categorized by type of participant (e.g., newly-diagnosed, couples, caregivers, singles), or issue (e.g., employment) rather than a specific symptom. As I mentioned before, most people with MS are dealing with more than one symptom at a time, with each one creating its own challenges. When symptoms are the focus of a group, it would likely be time-limited (e.g., 6 sessions), addressing something like fatigue management, which the vast majority of people with MS deal with at one time or another.

Certainly, Society chapters would be open to someone starting a group, if none of the existing groups met the person’s needs. So if  person wanted to start a group to address chronic pain issues, I’m sure that the chapter would be happy to publicize it to clients in the area.

What are your thoughts on the pain and disability cycle that lead to the catch-22 of isolation?

My thoughts about this would be the same as for any other symptom of MS that might lead to isolation, for example, fatigue, mobility problems, depression, or bladder problems. People with MS and their family members need to recognize the potential for the symptoms of MS to be isolating. Sometimes just getting through the day is so difficult that finding the time and energy to connect with others seems impossible. The goal of comprehensive MS management is to ensure that a person’s symptoms—whatever they might be—interfere as little as possible with his or her ability to function productively, comfortably, and safely. 

What do you see as the potential fear of resistance to joining or starting a support group?

Many people with MS are reluctant to join a support group, because they are afraid of what they might see—i.e., people with severe disability or symptoms they find frightening, or mobility aids. Others resist because they don’t want to spend their time listening to other people complain. Still others don’t want to focus on their disease any more than they have to. And privacy concerns are another reason why some people won’t join a group—although the availability of chat rooms and other online opportunities have allowed more people to gain the benefits of support groups.

I generally let people know about the benefits that a support group can offer, give them some tips on what to look for in a group, and encourage them to try more than one group if the first one doesn’t seem like a good fit. I also suggest that they give it more than one session before they decide.

For those who are afraid of seeing wheelchairs or other signs of disability, I urge them to give themselves a chance to see and get to know the people who are using those aids. It is amazing how quickly the equipment slips from the foreground to the background as people get to know each other, find common ground, and discover that they aren’t alone with their discomforts, feelings and fears. And for those who are embarrassed by symptoms like bladder problems, cognitive changes, or sexual difficulties, I let them know how often I have seen groups of people laughing and joking together about shared problems that they previously had only been able to cry about.

What are your tips for identifying personal support needs around chronic pain? 

For any symptom, I would suggest asking yourself some questions:

  1. Do you think the symptom is being managed as well as it could be? (Is your healthcare provider listening and responding to your issues? Making appropriate referrals to specialists?). If not, it’s time for a heart-to-heart with your doctor. And if that doesn’t work, it’s time to contact the National MS Society for a referral to another physician.
  2. Do family members, friends, and colleagues have an adequate understanding of the symptom(s)? Fatigue, pain, cognitive changes, and any other “invisible” symptoms, are difficult for people to understand and easy for them to misinterpret. There’s nothing more distressing than being in horrible pain or overwhelmed by MS fatigue, for example, and having people think you’re being lazy or disinterested or incompetent.People with invisible symptoms need to be prepared to educate others about what’s going on. The National MS Society has print materials and Web-based programming about virtually every symptom, and people can share these materials with others.
  3. Are you feeling alone with the problem? That’s an important sign that it’s time to reach out for assistance. The Society (1-800-344-4867) can help people connect with others with MS, MS specialist clinicians in a wide range of disciplines and community resources.

What are your thoughts about how to know when a support group is working and when it is time to move on?

It’s time to move one when you don’t look forward to it, attending the group leaves you feeling worse rather than better, or it’s no longer providing what you need. Groups evolve over time and so do you, so you need to keep re-evaluating the benefits of the group.

The National Multiple Sclerosis Society helps people affected by MS by funding cutting-edge research, driving change through advocacy, facilitating professional education, and providing programs and services that help people with MS and their families move their lives forward.

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