Discussing fibromyalgia and mobility problems is apparently taboo.
Only one of my physicians have addressed the subject of mobility and it was only because I brought it up.
Then there are the opinions of the general public, and unfortunately, some fellow fibro warriors, who make those who need to use a mobility aid out to be weak or say we have given up. However, as I have stated time and time again, there is nothing wrong with a fibromyalgia patient utilizing various types of mobility aids.
The sad and funny thing about it is that nobody questions my use of mobility aids when I state it is for arthritis. But their eyes roll if I mention fibromyalgia. The worst part is that we are the only ones who suffer when we refuse assistance.
But what about your thoughts or needs? We need to stop feeling that mobility issues are only important if they are permanent or acknowledged first by others. Acknowledging areas where we are struggling helps to identify what needs to be modified.
I was diagnosed with fibromyalgia in 2003. Since then, I have made many mistakes. And not just little ones! Refusing to accept my physical limitations has landed me in the hospital. It has stolen precious time that could have been spent with family.
The good news is that I have also learned from those mistakes.
Today I am going to load you up with information about how fibromyalgia affects mobility, empower you with tips for sharing your needs, and encourage you to let go of destructive misconceptions.
Fibromyalgia is more than physical pain and fatigue. Muscle pain and weakness can make it difficult to walk and stand. Fatigue and nerve pain may affect balance.
Fibromyalgia symptoms cause physical stress. Our bodies have to work harder to do what used to come easy.
One mistake I made early on was pushing my body to do what I wanted instead of following its lead. My body completely freaked out and began mimicking stroke symptoms. After a week in the hospital, tests revealed nothing, and the incident was diagnosed as a severe flare.
Another mistake I made was walking and standing longer than my body was able to just to give friends and family the impression that I was just like them. This caused my back and neck muscles to seize and freeze. Had I obeyed my body, I wouldn’t have had to spend six months on my back. Six months of should have been spent enjoying time with friends and family were spent on the couch with heavy-duty muscle relaxers and heat/ice, and massage therapy.
Frozen muscles, dizziness, fatigue, and widespread pain limit mobility. If you are unable to walk as far as you used to, experience additional pain after walking or standing for an average amount of time, or fall often, it is safe to assume that fibromyalgia has affected your mobility.
My fibromyalgia issues with balance have led to a broken tailbone, toe, and many bruised bones. Each injury increased my medical expenses and decreased my productivity.
If grocery shopping feels like a form of torture, fibromyalgia has affected your mobility.
Before we begin, I want to make it clear that you do NOT have to discuss our mobility issues with anyone. Your health, abilities, and disabilities are nobody’s business. With that said, you should always discuss them with your physician.
Never hesitate to discuss new or continuing mobility issues with your doctors. Doing so helps them understand how your chronic illness is affecting your body. It may also bring to light other health issues that may have been overshadowed by your fibromyalgia diagnosis. When talking with your physician, be sure to emphasize the impact your mobility issues are having on your life.
When it comes to friends and family, it is best to inform those you consider as part of your support team. This will help them know how to help you. To be honest, it is okay to share your frustration over what is happening with your body. Be real when discussing your mobility options.
As for the rest of the world, it is none of their business. With that said, should you use a mobility aid, be prepared to be asked. Because society makes people feel that mobility aids are only for those with an injury or disability that affects the legs, it is easy to feel like we need to defend ourselves. But you do not need to.
If you do choose to offer an explanation, keep your calm. Don’t tell people to f*c& off, talk in a relaxed manner. Give a simple explanation and move on.
Wheelchairs are the first thing people often think of when they hear the term mobility aid. But that is only one mobility option.
Options for balance issues include canes, walking sticks, and rollators. When my daughter was younger, her stroller served as my mobility aid. Pushing it helped with balance and the basket to put my bag’s intake pressure off of my shoulders and back. Dog strollers are another great tool.
One of my favorite mobility aids is my rollator/transport chair combo. It allows me to walk, provides a place to rest my feet and back, and gives my entire body a break when in transport chair mode. While my family feels it is not as easy to push as my manual wheelchair, we agree that when my need to be pushed is limited, it is the best tool to use.
Power chairs are a wonderful option for those who have had their mobility compromised yet want to remain independent.
The most important thing anyone with fibromyalgia can do to keep moving is to listen to their body. Pacing and not exceeding your body’s boundaries will allow you to do more regularly. Pushing hard and continually running yourself into the ground is guaranteed to decrease your productivity, plus time and ability to do the things you enjoy with the people you love.
Many people wait until they can’t do anything before they consider using a mobility aid. In the meantime, they miss out on so much living!
Signs that it may be time for you to use a mobility aid include but are not limited to:
- Falling often
- Not enough energy to complete simple tasks
- More time is being spent in bed
- Going out less
- Growing more dependent on others
- Pain after simple physical activities
- Missing out family events
- Fear of pain that will occur if you leave the house
Choosing a mobility aid can be overwhelming. Lucky for you, I wrote an article to help you find one that fits your needs, budget, and lifestyle.
Improving life with chronic pain should never be a taboo subject! Talking about fibromyalgia mobility problems helps us prepare us for the future, no matter what it holds.
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