126 posts in the category “Fibromyalgia”

“What do you mean I can’t bring my service animal in?” Member Craig talks life with fibromyalgia and service dogs.

Posted 10 months ago by

Craig Braquet (woofhound) is living with fibromyalgia and severe degenerative disc disease, the result of a multi-car accident in 1979. We first introduced Craig when he joined the 2015-2016 PatientsLikeMe Team of Advisors, but today we introduce his dogs, Luna, Oliver and Dakota (check out their cameo in Craig’s recent #MoreThan video). See what Craig has to say about training his own service dogs, taking them into public places, and how they’ve helped him manage his condition.

Service dog for fibromyalgia

Craig with his service dogs Luna (left) and Oliver (right).

Finding motivation to “get out of bed and rejoin society”

“Luna is where we began my journey with personal service animals,” Craig says. Luna, a Great Dane, is now retired from being a service animal, though she’s still one of Craig’s closest companions. “Before Luna, I stayed at home, my pain levels were more than I could handle. I spent most of my days sleeping, trying to heal my body from the stresses of constant pain, my illness had overshadowed me.”

Craig says Luna gave him a new purpose in life, and he found that training her to be a balance and stability service animal gave him the motivation to “get out of bed and rejoin society.” Regular exercise is beneficial for people living with fibromyalgia, and Luna helped make that effort worthwhile.

Since Luna, Craig has adopted Oliver and Dakota, also Great Danes. “Oliver took to his Service Animal Training just like Luna did,” he says. “He learned quickly and looked out for me in public, he’s calm in noisy, stressful situations and doesn’t pay attention to any other animals when he has his service gear on.”

When service dogs are turned away: Know your rights (and responsibilities)

While the American Disibilities Act (ADA) has clear guidelines about the rights of those with service animals, Craig has found that not all establishments are aware of these laws. On a recent trip to Truth or Consequences, a small town in New Mexico, he was not allowed to bring Luna into a local hot springs spa, even when he explained that she was his service animal.

Unfortunately, Craig has had several similar experiences with his dogs. His advice on what to do in this situation? “When you have a legitimately trained service animals and you are turned down by an establishment, you’ll get the quickest assistance if you demand your rights and require them to call the police instead of you making the call. This way the police can help to educate the proprietor when they arrive.”

Craig says that while knowing and understanding your rights as a service animal owner is important, so is the behavior of your animal, “the most important thing here is to make sure you have an impeccably trained service animal before you attempt to somewhat ‘force’ your rights. Even a trained Service Animal can be denied access if the dog is unruly, loud, or poorly trained.”

How to get a service animal

Service, therapy and emotional support animals: What’s the difference?

  • The ADA says a service animal is “any dog that is individually trained to do work or perform tasks for the benefit of an individual with a disability, including a physical, sensory, psychiatric, intellectual or other mental disability.” Other species of animals, trained or not, aren’t considered service animals. The ADA doesn’t require professional training for service animals, and people with disabilities have the right to train the dog themselves (but state and federal laws differ, so make sure to read up on your state’s laws). Check out this FAQ to learn more.
  • A therapy animal is an animal that’s been trained to help lift the spirits of people other than its handler. Therapy animals often visit places like hospitals and nursing homes to cheer up the people living there, though their handlers are not given public access rights like those of service dogs and their owners.
  • Emotional support animals provide companionship, relieve loneliness, and can help with depression, anxiety and other mental health conditions, but don’t need to have any special training to perform tasks that assist people with disabilities. While emotional support animals are often used as part of a medical treatment plan to provide therapy to their owners, they’re not considered service animals under the ADA.

On PatientsLikeMe

See who’s tracking their experience with service animals on PatientsLikeMe, and check out what some members have said in more than 150 treatment evaluations on pets.

FIbromyalgia and service dogs

“Always for the better”

When we asked him how his animals have impacted his health, Craig simply said “always for the better.” Their companionship provides him with physical and emotional support, and they act as “the antidote to any stressful day.”

Do you have a service animal? Share in the comments how they’ve impacted your life and your health. And join the conversation with others discussing this in the PatientsLikeMe forum

 

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Let’s make fibromyalgia visible today

Posted May 12th, 2017 by

Fibromyalgia awareness day

“I get so angry when friends come over to visit, after I haven’t been able to get out of the house for a month, and tell me how good I look. Or the idiots who ask you how you got the handicapped parking tag when you look so healthy. People just don’t see how difficult this disease is.”

-PatientsLikeMe member living with fibromyalgia

“I am so tired of the ‘but you don’t look sick’ comments.”

-PatientsLikeMe member with fibromyalgia

“I feel like I shouldn’t talk about it because I don’t expect it will make a positive impact on me if I do.”

-PatientsLikeMe member with fibromyalgia

This is the reality for those living with fibromyalgia – and since May 12 is Fibromyalgia Awareness Day, the fibro community is rallying to make this condition visible. The National Fibromyalgia Association has reported that it is one of the most common chronic pain conditions in the United States, affecting an estimated 10 million adults, with around 75%-90% of the people living with fibromyalgia being women.

Because fibromyalgia is an invisible illness, explaining it to others can be even more difficult. That’s why 2015-2016 Team of Advisors member Craig (woofhound), who is living with fibromyalgia, wrote an open letter to the “normals” describing what it’s like to live with a chronic pain condition while dispelling myths that often surround it.

Letter to the normals

 “We really do care about you and really wanted to visit, but if we listen honestly to our bodies we can’t afford the toll of that visit. We know that makes us come across as ‘flaky’ especially if we’ve had to cancel at the last minute, but if you understood this condition you would see that we don’t really have the choice”.

 

Check out Craig’s full open letter to the normals here.

 

So, how can someone with fibromyalgia improve their quality of life? According to the Centers for Disease Control and Prevention (CDC), there are a few things that people living with fibromyalgia can do – namely, exercise.

  • Get active – The CDC suggests physical activity can help improve symptoms of fibromyalgia, including pain, sleep problems and fatigue. It can also reduce the risk of developing other chronic diseases like heart disease and diabetes. However, physical activity can be extremely challenging for those living with chronic pain, so the CDC advises to start slowly and gradually increase your activity level. It can be as small as doing some stretches in bed each morning. They also have a list of recommended exercise programs which you can read more about here.
  • Self-management education – learning more about your condition can help you gain better control over managing your symptoms. Joining sites like PatientsLikeMe to learn about yourself and others like you can help you better understand life with you condition. The CDC also has a list of recommended self-management education programs.

There are more than 3,000 topics in the fibromyalgia forum tagged with “exercise”. Join the discussion!

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