People’s Experiences with Fibromyalgia – A Challenging Condition

dcci
July 20, 2017 by dcci

Introduction

For decades millions of people have been living with a challenging and horribly painful condition known as fibromyalgia. When the condition first appeared, many people were told they were simply getting older, or these were the normal aches and pains of daily life. All too often it was misdiagnosed as something else. So, what is fibromyalgia? Check out our guide for Disability Tax Credit Guide for Canadians Suffering from Fibromyalgia

Understanding Fibromyalgia-Challenging Condition

According to the National Institute of Arthritis and Musculoskeletal Skin Diseases, (NIAMS) fibromyalgia is: “a disorder that causes muscle pain and fatigue. People with fibromyalgia have pain and tenderness throughout the body. People with fibromyalgia may also have other symptoms , such as:

  • Trouble sleeping
  • Unrefreshed sleep
  • Depression
  • Widespread aches and pains
  • Morning stiffness
  • Headaches
  • Painful menstrual periods
  • Tingling or numbness in hands and feet
  • Problems with thinking and memory (sometimes called “fibro fog”).

The NIAMS states that the cause of fibromyalgia can be many things, but scientists don’t yet completely understand the condition. Some believe repetitive injuries could be involved, others suspect a genetic source for the illness, and some relate it to a traumatic event or accident. No matter what the source is finally revealed to be, people with fibromyalgia face numerous challenges to pick up their lives once the condition sets in.

Fibromyalgia-Challenging Condition

Getting Diagnosis  Fibromyalgia-Challenging Condition

One of the constants in the reports of people who connected with this writer, was that doctors typically told them they’d probably had fibromyalgia for many years. But, attaining a diagnosis isn’t easy. According to research conducted by the Mayo Clinic, fibromyalgia is often difficult to diagnose because it mimics other conditions. Therefore, doctors are often stymied by the convergence of symptoms which could be other conditions. Also, many people with fibromyalgia often have co-morbidity with other conditions. To complicate matters even further, there is no specific test for fibromyalgia. No imaging test, or blood test can confirm or deny the presence of  fibromyalgia -Challenging Condition

[intense_blockquote color=”#cccccc” font_color=”#0f0101″ border_color=”#ed0e0e”] To complicate matters even further, there is no specific test for fibromyalgia.  [/intense_blockquote]

Why Fibromyalgia Is Difficult To Treat

First, there are so many widespread symptoms related to fibromyalgia, that the doctor can sometimes be overwhelmed how to assist their patients with this condition. Second, many doctors have little to no understanding of fibromyalgia, and tend to prescribe anti-depressants and/or pain medication and send the patient home. This isn’t nearly enough to help someone, and could aggravate the situation. The person may believe this is sufficient, but become despondent when they realize it’s not working. Doctors may respond by simply increasing the dosage of the medications, which causes additional problems such as prescription addiction or dependence.
To treat fibromyalgia proactively, there needs to be a team approach. The team should ideally be assembled by either the doctor or a physiotherapist. Sometimes teams can be assembled at a pain clinic which specializes in the treatment of fibromyalgia and other chronic conditions.
Some people have found relief through alternative and/or complementary medicine and treatments. These include:

  • Homeopathy
  • Herbal medicine
  • Acupuncture
  • Chinese medicine
  • Reflexology

As with all conditions, it’s imperative to do some homework in order to find a treatment that works for the individual.

People Living With Fibromyalgia Speak Up

In the preparation of this article, there was an opportunity to speak with and interview several people who live with fibromyalgia. A consistency in these was that fibromyalgia can be coped with, but it’s never easy. While we know fibromyalgia is not progressive, we also know it tends to last throughout the person’s lifetime. However, that will NOT always be the case. Some people will experience remission, or find themselves pain-free through specific treatments. But, this is the exception rather than the rule at this time. One person stated they now live pain-free, but all the others interviewed maintained they cope with various strategies. Some of the strategies currently being used are:

  • Lyrica: A prescription drug which helps some but not everyone
  • Cymbalta: A prescription drug to help with the onset of depression. Again, it helps some, but not everyone
  • Medical Marijuana: Taken as a sublingual oil, several people reported this as being very helpful with the pain of fibromyalgia(Alternative therapies ).
  • Intravenous Lidocaine and Ketamine: Helpful, but only for a short time
  • Anti-inflammatory diet

Most individuals who responded to a request for an interview reiterated some of the same strategies:

  • Don’t let the condition control you, or define you
  • Try different strategies if one isn’t working. What works for one person doesn’t work for everyone.
  • Be straight forward with your doctor; let them know exactly what you’re dealing with
  • Try to maintain a positive attitude even though it’s difficult. Giving in to negativity could worsen the situation.
  • Don’t overdo things when you feel well, as this could lead to a relapse. Do what you can. Get plenty of rest. Exercise and stay as active as possible.
  • Try not to focus on it, or talk about it all the time. Allow yourself to live your life as fully as possible.
  • Develop a support network. The network can be comprised of many people such as friends, family, treatment practitioners and online groups. Several people reported the online network for fibromyalgia is very good, and highly supportive. This kind of networking is very positive, because it’s online and available 24/7.
  • Try not to burn out your caregivers or supporters. There is such a thing as “caregiver fatigue”. While people mean well, they are not always available to provide the support someone needs. This is why a support network should be comprised of many different types of people.
  • Find someone to talk about it with. This should ideally be a professional counsellor or therapist who understands the challenge of coping with chronic pain. This provides a time for the individual to express all of their frustrations and concerns in a safe and supportive environment.
  • Check into as many support networks as possible. Many are online, but some might be right in your community.
  • Find as many ways as possible to bring joy into your life. When one copes with chronic pain, it can be all too easy to give in and allow the pain to take centre stage. Try not to allow this to happen. Get together with friends. Watch your favourite shows. Cheer on your favourite teams, but try not to give in.
  • Fibromyalgia isn’t easy but there are many people out there also coping. Let them know you’re out there too and find positive ways to connect.

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