Interview with Donna Gregory Burch

Originally posted June 19th, 2017 on ProHealth.com
Interview with Donna Gregory BurchDonna Gregory Burch, founder of FedUpwithFatigue.com, recently responded to interview questions from Melissa Swanson.
Melissa: What was your life before fibro?

It was very different than it is today. I was your typical type A perfectionist. My life was mostly about work. I was editor of a rapidly-growing weekly newspaper, and with that came a lot of deadlines and stress. I loved my job, but the pace of it began to wear on me after a few years.

I admit I was bad about work/life balance, but I did have some hobbies. I liked working on home-improvement projects. I liked going to yard sales, antique stores or thrift stores and looking for deals. I love beautiful things, so I enjoyed museums and parks. I had an interest in New Age and paranormal topics (meditation, Reiki, ufology, ghosts, etc.). I love animals and have volunteered with animal-rescue groups over the years.

Melissa: When did you show your first signs and what were your first symptoms?

I had my first symptoms in 2010 following the death of my mom from lung cancer. My first noticeable symptom was severe fatigue, which wasn’t surprising given how hard I worked. I was so tired, but at the same time, it felt like my body was always in overdrive. I couldn’t relax, and I was having a hard time sleeping.

About this same time, I began having urinary urgency, which I chalked up to being hereditary because my aunts had dealt with that issue. I also had severe pain in my hands, which was diagnosed as carpal tunnel syndrome. I later found out that was a misdiagnosis.

Over the next couple of years, the pain in my hands migrated, and I began having pain throughout my body. After going to a series of doctors and being misdiagnosed several times, I was eventually diagnosed with fibromyalgia in early 2014.

Melissa: Besides fibro, what other coexisting conditions have been diagnosed?

Last summer, I found out I have chronic Lyme disease and several other tick-borne co-infections. My doctors now believe Lyme and the co-infections are the underlying causes for my fibromyalgia symptoms. I’m currently being treated for tick-borne infections, and I’m hoping my symptoms will eventually dissipate.

I also have overactive bladder, neuropathy in my feet and thyroid dysfunction – all of which are probably related to Lyme.

Melissa: How did your fibro diagnosis initially change your life?

At first, I thought I had adrenal fatigue or possibly hypothyroidism like my mom. I thought I just needed to rest and regroup. I gave up my stressful job and moved to another state. I started to take better care of myself. I slowly changed my diet. I started exercising. I meditated every day. I made all of the common lifestyle changes that you read about online, but no matter what I did, I still felt awful.

I began going to various doctors, trying to figure out what was wrong with me. Most of them thought I was depressed and tried to write me prescriptions for antidepressants, but I had suffered from depression earlier in my life, and I knew what I was feeling was NOT depression. It was a very frustrating time because my doctors and my family didn’t believe that I was sick.

Melissa: What changes have you had to make in your life?

Everything has changed. I no longer have my beloved career. I’m no longer able to work full time because I don’t have the stamina. I’m not able to take care of my home the way I used to. I’m not able to participate in many of the extracurricular activities that I used to enjoy.

Melissa: What is your life like now?

My life is very limited at this point because of the severity of my symptoms. Pretty much every decision I make now is affected by my illness in some way. Decisions are always tradeoffs. If I do XYZ, then I won’t have the energy to do ABC. Like many with chronic illness, my life revolves around treatment.

Melissa: What are your biggest battles now and how do you confront them?

Pain and fatigue are my biggest daily battles. I have always been a can-do sort of person, so it’s been a mental struggle for me to admit that I have limitations now. I still want to do all of the things that I used to do, and I tend to push myself, and then pay for it. I really struggle with pacing myself.

Melissa: What is the best/worst thing that has happened due to illness?

The best thing? I think I am a much kinder person than I was when I was healthy. I have a lot more compassion for other people, and my mindset is more service-oriented now. I am much less self-absorbed.

The worst thing? Losing my independence. I’m more dependent on others now, and I don’t like that one bit. Financially, chronic illness has been a huge drain.

Melissa: How is your relationship with your family & friends?

Prior to my Lyme diagnosis, my family didn’t really believe I was sick. When I was diagnosed with fibromyalgia, I felt vindicated because I finally had a label. I didn’t realize that so many people see fibromyalgia as a “fake” illness, and unfortunately some of the people closest to me fell into that category.

They finally accepted my illness when I had a blood test showing that I was positive for Lyme disease. It’s better now, but it’s very hurtful and stressful when your family thinks you’re a hypochondriac and lazy.

Melissa: What made you want to start a blog?

Part of it was because I didn’t have the support of my family. I needed to connect with others who were going through the same thing.

I had also become overwhelmed with the information that I found online about fibromyalgia. There are millions of products and services marketed to fibro sufferers, and it was so hard to figure out what might work and what was a rip-off.

At the time of my fibromyalgia diagnosis, I’d worked almost 20 years as a journalist. I definitely knew how to research and write about health topics, so I decided to use my skills as a journalist to help myself and others, and that’s when I founded FedUpwithFatigue.com.

Melissa: What do you wish people knew about your illness? 

First, I want people to know that fibromyalgia and chronic Lyme are real! We are not fabricating our symptoms. We are not lazy. We are not trying to get sympathy.

Second, I want people to know that fibromyalgia is complicated. Despite those annoying Lyrica commercials on TV, there is no pill that fixes fibro. The fibro drugs on the market only help about one-third of people.

Third, I want people to know the medical system is failing those who are chronically ill – especially the chronic pain community. Our medical system is fantastic for broken bones and the common cold. It is a dismal failure when it comes to treating chronic conditions, like fibromyalgia and Lyme. These conditions require more than a seven-minute doctor’s visit and a prescription. They require physicians to take a holistic, systemic approach to treatment, and conventional medicine doesn’t allow for that.

Melissa: What is the most important piece of advice you would give to someone newly diagnosed with Fibro (or even seeking a diagnosis)?

I know some people are going to take what I’m about to say the wrong way, but I hope they will read my entire response before jumping to conclusions.

What I would say to someone newly diagnosed is this: Don’t accept that diagnosis. I no longer view fibromyalgia as a condition in and of itself. I see it as a collection of symptoms signaling that there’s a deeper problem.

Now, in no way am I saying fibromyalgia doesn’t exist. What we’re feeling is very real, and it’s painful, and it’s miserable, and it’s debilitating.

But what I am saying is to push yourself and your physicians to delve deeper. Don’t just accept the label of fibromyalgia. There’s a Canadian study that found up to two-thirds of people with fibromyalgia may be misdiagnosed. That’s millions of people who are probably living with conditions that could potentially be treated if they were properly diagnosed.

Our bodies are marvelous machines. They are designed to heal themselves. So, when our bodies go haywire, we need to question what’s the underlying cause for that? Don’t just accept that this is your lot in life, and there’s nothing you can do about it. Keep digging for answers!

My take has always been that if we can figure out the underlying cause for our symptoms, and treat that, then maybe we can recover. In the coming weeks, I’ll be exploring the issue of underlying causes for fibromyalgia on my blog in greater detail.

(I wrote a blog post a few months ago with other tips for those who are newly diagnosed, but it’s really relevant for anyone with fibromyalgia.)

Melissa: You are an inspiration to so many. What advice do you give to others?

Don’t rely exclusively on your physicians for answers. Do you own research! Become your own guinea pig – within reason, of course!

The truth is most physicians don’t know much of anything about fibromyalgia outside of what the Pfizer and Eli Lilly drug reps tell them. I know that sounds jaded, but the reality is fibromyalgia research is still in its infancy. We don’t know what causes it, and we don’t know how to treat it, and neither do our doctors!

Many doctors are too busy to keep up to date on the research, so don’t rely on them to know about the latest and greatest treatments. Empower yourself! Learn how to use PubMed! Sign up for fibromyalgia-related websites, like ProHealth.com and FedUpwithFatigue.com! Join a fibromyalgia support group! I promise you that your fellow fibro warriors probably know much more about your condition than your rheumatologist or neurologist ever will.

I know there are some good fibromyalgia doctors out there, but at the end of your appointment, when you walk out of that exam room, he or she is on to the next patient and probably won’t think about you again until your next appointment. YOU have to live with this condition every single day, so take an active role in your treatment plan!

And consider branching out from conventional medicine. The only progress I’ve ever made was when I worked with physicians who practiced in the areas of functional medicine and/or naturopathy. These practitioners take a more systemic approach to treatment, as I mentioned before, and they’re much more likely to work with you on identifying your underlying causes for illness versus just treating symptoms with pharmaceuticals.

Melissa: What inspires you?

My fellow fibro warriors! My mom (who also had fibromyalgia and probably Lyme disease) used to say there’s always somebody who has it worse than me. Although I’m in pain every day, I know there are others in our community who are struggling with symptoms that are much more severe than mine. Hearing their stories and struggles keeps me motivated to stay of service to the fibro and Lyme communities.

Tell me about Fed Up with Fatigue.

FedUpwithFatigue.com covers the latest news, research and helpful tips to live better with fibromyalgia, Lyme and chronic fatigue. Because of my journalism background, my content tends to focus mostly on treatments and practical information for living with chronic illness.

How did you get involved with CIB (Chronic Illness Bloggers)? What do you do as a part of CIB?

I was a big fan of CIB founder Julie Ryan’s blog, Counting My Spoons, before I started Fed Up with Fatigue. We connected as bloggers, and I was super excited when she decided to start CIB. I’ve had the opportunity to try out so many great products as a result of being a CIB member and then share them with my readers.

As a CIB member, I write about blogging on the network’s blog and help with CIB’s weekly member link share.

Where can we find you on social media?

I’m most active on Facebook and Pinterest. I’m getting ready to start posting fibro and Lyme-related videos on YouTube. You can also find me on Twitter and Instagram. I have an extremely active Facebook group called What Works for Fibromyalgia.

31 Things You Should Know about Fibromyalgia

Fibro Info You Should Know: Day 1
May 12th was chosen to be Fibromyalgia Awareness Month because it is Florence Nightingale’s birthday and she had fibromyalgia.

Fibro Info You Should Know: Day 2
Reports of illnesses with strikingly similar symptoms can be found as far back as around 1500 BC.
The earliest description of a fibromyalgia-like condition is found in the Biblical account of Job’s physical anguish. “I, too, have been assigned months of futility, long and weary nights of misery. When I go to bed, I think, `When will it be morning?’ But the night drags on, and I toss till dawn…And now my heart is broken. Depression haunts my days. My weary nights are filled with pain as though something were relentlessly gnawing at my bones.” (Job 7:3-4 and 30:16-17 – NLT)

Fibro Info You Should Know: Day 3
What is Fibromyalgia: For Starters ~ IT IS REAL!

Definition: Fibromyalgia syndrome is a common and chronic disorder characterized by widespread pain, diffuse tenderness, and a number of other symptoms. The word “fibromyalgia” comes from the Latin term for fibrous tissue (fibro) and the Greek ones for muscle (myo) and pain (algia).

Fibro Info You Should Know: Day 4
It took hundreds of years but FINALLY there is a test that can tell if you have Fibromyalgia. Most insurances will pay for it. https://fmcfstriggerpoints.blogspot.com/2016/06/the-fma-blood-test-how-to-and-my-results.html#.WQth9lUrK1s
#fibrowarriorslivinglife #stopseefibromyalgia #fmatest

Fibro Info You Should Know: Day 5
Fibromyalgia can happen to anyone.

It is does not discriminate. In the United States, approximately 20 million Americans (6%) are afflicted with FM. While it occurs most often in women (80% women – 20% men), FM also strikes men and children of all ethnic backgrounds. I personally have friends that can recall having the pain as early as 4 years old. Unfortunately I know too many young teens trying to get through the drama of middle school & high school.
#stopseefibromyalgia #fibrowarriorslivinglife

Fibro Info You Should Know: Day 6
Fibromyalgia likes to bring friends.
There are over 100 “evil sidekicks” or co-existing syndromes.
I have currently been diagnosed with 19 “evil sidekicks” in addition to fibromyalgia.
http://fibrowarriorslivinglife.com/symptoms-syndromes-evil…/

Fibro Info You Should Know: Day 7
There is no cure for fibromyalgia.
There are prescription meds, supplement, and integrative therapies that have been helpful in treating the symptoms of fibromyalgia and it’s “evil sidekicks” or coexisting syndromes/diseases.

Fibro Info you Should Know: Day 8
Dr. Liptan is someone you should know if you have fibromyalgia.
http://www.prohealth.com/library/showarticle.cfm?libid=28876
http://www.prohealth.com/fibromyal…/library/showarticle.cfm…
#stopseefibromyalgia #fibrowarriorslivinglife #drliptan

Fibro Info You Should Know: Day 9
*Not one fibromite is the same
*No one”gets” Fibro for the same reason
*No one has the exact same co-existing conditions/diseases
*Not all medications, supplements & integrative therapies work for everyone.
*Treatments that were working will all of a sudden no longer work.
*No one can predict if they are going to have a good or a bad day.
*We might be able to do something today but the same thing could throw us into a terrible flare the next day.
*One this is for certain; We are always in pain, we are always tired and our health is unpredictable.

Fibro Info You Should Know: Day 10
“Patients with fibromyalgia do not become crippled with the condition, nor is there any evidence it affects their lifespan.
Nevertheless, due to varying levels of pain and fatigue, there is an inevitable contraction of social, vocational, and avocational activities that leads to a reduced quality of life. As with many chronic diseases, the extent to which patients succumb to the various effects of pain and fatigue are dependent upon numerous factors, in particular their psycho-social support, financial status, childhood experiences, sense of humor, and determination to push on.” ~ fibroandpain.org

Fibro Info You Should Know: Day 11
It is common for more than one family member to have fibromyalgia but does this mean it is genetic?
Most experts believe fibro is related to a genetic predisposition which means that certain genes increase the risk of a person developing fibromyalgia. Research is ongoing to try to learn which genes are responsible for predisposing.

Fibro Info You Should Know; Day 12
Today is International Fibromyalgia Awareness Day
I chose to share more feeling and less fact today. I did not chose to have this illness. I did nothing to cause it to happen. Life just happened and here I am. I am not going to sugar coat it. It sucks. It is one thing to be in pain every day 24/7, to be so fatigued you actually can’t think, to deal with the anxiety and depression you face when you are always in pain. However, the worse thing is it is a thief. It steals you of time with your family and friends. It steals the time your daughter should be chatting with friends instead of cleaning your house because you can’t physically do it. I can list so many more things but then it would not be a Fibro Warriors ~ Living Life motto. I have a new family around the world and it has opened up so many opportunities for me to help others. I do what I can when I can with the help of others. Please take the day to share with someone else why we are wearing purple today.

Fibro Info You Should Know; Day 13
Don’t believe everything you read. Find credible sources.
Easier said than done, right? I do not know all of the facts; can’t keep up with the advances in medicine or the laws trying to be passed that can harm us. This is why I am an advocate with the National Fibromyalgia and Chronic Pain Association fibroandpain.org. This is why I am friends with people like Celeste Cooper and Tami Stackelhouse. This is why I follow pages like US Pain Foundation and ProHealth. This is why I read books from Dr. Liptan and many more. I am simply a voice to spread awareness and education. BE A VOICE! BE YOUR OWN ADVOCATE!

Fibro Info You Should Know: Day 14
High Direct and Indirect Costs

The significant HRU and costs associated with FM in the US, France, and Germany documented in this study highlight the substantial global economic burden of FM. Knight et. Al.​

Several studies have examined the direct (medical care) and indirect (productivity loss, changes in employment status, disability, family assistance) costs of fibromyalgia. FM patients see a doctor on average about once a month and are hospitalized once every three years. The mean direct annual cost per patient ranges from about $2,000 to over $10,000 a year depending on severity. People with severe FM (65% in one study) averaged over $10,000 a year in direct medical costs.

Most of the costs due to fibromyalgia, however, are caused by indirect costs due to lost productivity and disability. The complete indirect costs of FM are rarely accounted for (an insurance company study indicated that FM cost companies $57-$143 in indirect costs for every dollar they spent on medical claims) but one study suggested that the indirect costs for a severely ill FM patient average over $30,000 a year. Throw the indirect and direct costs together and you have a staggering $40,000 plus bill year in and year out for the severely ill.

Fibromyalgia may impose a greater burden than some other chronic illnesses. Studies indicate that the burden of illness FM imposes is comparable that found in diseases such as osteoarthritis, rheumatoid arthritis (RA) and diabetes. FM’s direct medical costs – which account for substantially lower losses than the indirect (productivity) costs – are similar to those found in rheumatoid arthritis. In fact, people with FM visit emergency rooms, have more doctor visits and engage in physical therapy to a great extent that people with RA. Since FM is at least three times and may be six times as common as RA it likely imposes from three to six times as great a societal burden as RA.https://www.healthrising.org/forums/threads/the-high-cost-of-fibromyalgia.2973/

Fibro Info You Should Know: Day 15
My second worst “evil sidekick” is Chronic fatigue syndrome, CFS, or SEID. It is a common condition with Fibromites.
It is a debilitating and complex disorder characterized by profound fatigue that is not improved by bed rest and that may be worsened by physical or mental activity. Symptoms affect several body systems and may include weakness, muscle pain, impaired memory and/or mental concentration, and insomnia, which can result in reduced participation in daily activities.
https://www.cdc.gov/cfs/

Fibro Info You Should Know: Day 16
Have you heard of Fibromyalgia Health Coaches or Advisors?
Thanks to Tami Stackelhouse I am among the many that exist and are ready to help you.
What is a Fibromyalgia Advisor or Coach?
A Fibromyalgia Coach is someone who is trained to provide support specifically for fibromyalgia patients. It’s a bit of a cross between health coaching and life coaching, with a focus entirely on helping clients live as well as possible with fibromyalgia.
https://fibrowarriorslivinglife.com/2016/07/31/everyone-needs-a-coach-in-their-corner/

Fibro Info You Should Know: Day 17
Exercise is a very important part of fibromyalgia treatment.
I know that when I first heard this I said, “Yeah, right. I am in so much pain and you want me to move.” The truth of the matter is we need to keep moving. I do not suggest you sign up for “The Biggest Loser” class like I did a few years ago. Not smart. I do suggest and it has been proven that water exercise, yoga, tai chi, walking and gentle stretches help those of us in chronic pain. The key word is BALANCE. #fibromyalgiaawareness #fibrowarriorslivinglife

Fibro Info You Should Know: Day 18
There are many approaches to treating fibromyalgia and the “evil sidekicks”.
Check out this article by Celeste Cooper https://www.healthcentral.com/article/alternative-and-complementary-medicine-combating-chronic-pain

Fibro Info You Should Know: Day 19
You can never get enough facts: Check out this article ~ 10 Fast Fibromyalgia Facts;
http://www.prohealth.com/fibromyalgia/library/showarticle.cfm?libid=29408

Fibro Info You Should Know: Day 20
The Difference Between Fibromyalgia Tender Points and Myofascial Trigger Points by Celeste Cooper
http://www.prohealth.com/library/showarticle.cfm?utm_source=google_plus&utm_campaign=google_plus_article&LIBID=29668

Fibro Info You Should Know: Day 21
https://www.verywell.com/the-acupuncture-experience-for-fibromyalgia-and-mecfs-715644

Fibro Info You Should Know: Day 22
Sleep; Should be a 4 letter word. Do I sleep? Yes…How? Meds that put me to sleep and Meds that keep me asleep. Am I ever rested? No… I am always tired. I was diagnosed with sleep maint. disorder. I recommend to all my clients that they have a sleep study done to really know what is going on. Attached is a great article; https://fmcfstriggerpoints.blogspot.com/2013/08/the-mystery-of-sleep-in-fibromyalgia.html
#celestecoope

Fibro Info You Should Know: Day 23
Books from credible sources are a MUST!
Attached is my GO TO list; http://astore.amazon.com/fibwarlivlif-20

Fibro Info You Should Know: Day 24
Journaling is so important for a multitude of reasons. I use it to track my pain, emotions, medication, to problem solve and explore possibilities.
http://www.celestecooper.com/journaling.html

Fibro Info You Should Know: Day 25
I slept 20 out of the past 22 hours today. Still tired but much better than I was last night. I am going to sleep soon – Thankfully only one more day of work this week. CFS/ME/SEID… whatever you call it.. It SUCKS being so darn tired all the time.

Chronic fatigue syndrome has eight official signs and symptoms, plus the central symptom that gives the condition its name:
Fatigue
Loss of memory or concentration
Sore throat
Enlarged lymph nodes in your neck or armpits
Unexplained muscle pain
Pain that moves from one joint to another without swelling or redness
Headache of a new type, pattern or severity
Unrefreshing sleep
Extreme exhaustion lasting more than 24 hours after physical or mental exercise
http://www.mayoclinic.org/…/ch…/basics/symptoms/con-20022009

Fibro Info You Should Know: Day 26
There are going to be days when you have to let your body win.
My SEID, ME, CFS or whatever you want to call it nowadays finally beat me. I’ve pushed myself for too many weeks. I slept 32 out of 36 hours with no sleep aids. That was Wednesday night thru Thursday night. I am lucky I didn’t push myself into a fibro flare. I also know better. I plan on taking it easy the next 3 days. Don’t push yourself. Be kind to you.

Fibro Info You Should Know: Day 27
According to the National Fibromyalgia & Chronic Pain Association about 20% of people with fibromyalgia (FM) have a co-existing depression or anxiety state that needs to be appropriately treated with therapeutic doses of antidepressants or anti-anxiety drugs, often in conjunction with the help of a clinical psychologist or psychiatrist. Basically, people who have a concomitant psychiatric problem have a double burden to bear. They will find it easier to cope with their FM if the psychiatric condition is appropriately treated. It is important to understand that fibromyalgia itself is not a psychogenic pain problem, and that treatment of any underlying psychological problems does not cure FM.

Fibro Info You Should Know: Day 28
Several studies in the past few years indicate that fibromyalgia symptoms may arise from mitochondrial dysfunction.
https://fmcfstriggerpoints.blogspot.com/2015/07/coenzyme-q10-coq10-for-fibromyalgia.html#.WSt0uGjyvIU

Fibro You Should Know: Day 29
Weather truly does affect our bodies. http://fibrowarriorslivinglife.com/…/04/29/hows-the-weather/

Fibro Info You Should Know: Day 30
There are many different tools that can help alleviate pain. Here is my review of Oska Pulse. My results have been amazing.
http://fibrowarriorslivinglife.com/2017/01/28/success-with-oska-pulse/

Fibro Info You Should Know: Day 31
There are so many great bloggers out there.
I will be continue to add to the list but here is a start;
http://fibrowarriorslivinglife.com/2017/06/08/blogs-to-know/