Fibro Warrior – Donna @fedupfatigue

Today’s Fibro Warrior is Donna Gregory, a freelance writer from New Castle, Delaware. She’s married and has several fur babies.

Donna, tell us a little about yourself.

I live in Delaware with my hubby, Morgan, and our fur babies. We have an old greyhound (retired from the track) and several indoor cats.

When we moved to our existing home, we inherited a feral cat colony, which had taken up residence at the end of our street. We worked with a local nonprofit to get them all spayed/neutered, and several of them now live on our front porch.

I’ve worked as a newspaper reporter/journalist for the past 20 years – most of which has been as a freelancer. I’m extremely lucky that I get to work from home, even more so after being diagnosed with Fibro.

What lead up to your diagnosis?

I began having noticeable Fibro symptoms in 2010. I was under extreme stress due to my job as a newspaper editor. The newspaper was growing very rapidly, the deadlines were constant, and by the end of each week, I was a frazzled, exhausted mess. I held that position for five years, and putting out a newspaper week after week for so many years wore on me mentally and physically.

In 2009, I had a long-term relationship/engagement that ended and my mother died of lung cancer. I was very depressed after losing my mom. I think her death, coupled with the stress from my job, triggered my genetic predisposition for developing Fibro. Over the next few years, I began having extreme fatigue, unexplained pain (particularly in my legs/hips/feet), brain fog, overactive bladder, etc.

In 2012, I ended up quitting my job and moved to a new state. I learned to meditate. I exercised. I cleaned up my diet. I lost weight. I began to feel better, but then I fell off the wagon and resorted to many of my old habits. The pain, fatigue and brain fog grew much worse after that.

I went to several doctors between 2011-2014, trying to figure out why I was so tired and achy. I was the patient that no doctor wants because I had all of these vague symptoms, but nothing was showing up in my blood work. Several doctors tried to diagnose me with depression. I walked out of those doctors’ offices feeling unheard and so frustrated.

At different points, I would give up on trying to find an answer, but then my symptoms would worsen, and I would restart the process of trying to 

find an answer again. In early 2014, I went to an orthopedic doctor because I was having extreme pain in my right hand/arm that was affecting my ability to work. When I told him that I was having unexplained pain all over my body, he referred me to a rheumatologist. The rheumatologist diagnosed me with fibro after running more tests

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What was your life like at the time you were diagnosed?At the time of my diagnosis, we had just recently bought a new home, and I was going to college for a new certification, so it was a very busy time. By the time I was referred to the rheumatologist, I had pretty much given up on knowing why I felt so bad every day. I had been to so many doctors at that point with no answers. It was a great relief when my rheumatologist finally put a name to what I was feeling. I figured he would write me a prescription, and it would fix my symptoms. Of course, I know now how naive that was. There is no magic pill to make Fibro go away.

This was me in 2008, prior to my diagnosis, with my friend, Sam. I used to participate in 5Ks-10Ks. (I didn’t run them, but alternated walking/jogging.) Unfortunately, I don’t do these anymore due to being sick. I gained 30 pounds last year after my doctor put me on Lyrica/gabapentin.

How did your family initially handle your illness?My family is very small and mostly male. They don’t really understand what fibromyalgia is or how debilitating it can be. I don’t talk about it much with them. I rely more on friends and online support groups.

What do you feel is the most challenging aspect of Fibro?The disconnect between what I want to do and what I can actually do. I was always an active, can-do kind of person. I still have goals, and there are lots of things that I want to do in life, but I am slowly coming to the realization that I may not be able to do some of those things. That’s a tough realization when you’re a person who is not used to having limits.

Do you have any other co-existing conditions? If so, what are they and how do they impact your Fibromyalgia?I have overactive bladder and GERD. I feel very fortunate that I don’t have some of the challenges that others with Fibro do.

What (if anything) have you found/ done that has improved your symptoms?Low-dose Naltrexone is the only pharmaceutical that has helped relieve my symptoms. It’s not a miracle pill, but it has reduced my pain more than anything else has. I also take magnesium and Curamin supplements to help with pain. I take Flexeril at bedtime if I’m having a really painful day, but it makes me really groggy the next day, so I try not to take it unless I have to. Exercise helps, but like so many others with Fibro, I struggle with doing it consistently. Meditation and yoga helps me mentally. When I do activities, like cleaning or shopping, I have better stamina when I force myself to take regular rest breaks.

Did you ever return to the diet/ lifestyle changes you had found helpful early on?I continue to eat a fairly clean diet. We buy most of our groceries from the local farmers market, including meats, eggs and produce. I usually choose organic products when that option is available to minimize exposure to pesticides and other chemicals. I have a sweet tooth, but have found that sugar is a trigger for me. If I eat too much sugar, it increases my pain and fatigue, so I try to minimize my sugar intake.

I am not currently exercising regularly. I have tried to resume a workout schedule a couple of times since being diagnosed, but it has been difficult because exercising causes pain.

I understand from others that it will get worse before it gets better, but I haven’t been able to get over that hump yet. I know others have been successful at exercising, and I am in the process of researching what has worked for them, so I can get back into working out. Based on the research that’s out there and reading about others who are successfully managing Fibro, I’m positive that will help to improve my symptoms.

How open are you with friends & family about your illness & symptoms?I rely more on friends and support groups than on my family for support. Online support groups, like those on Facebook, are invaluable. Just reading the messages reminds me that I am not alone in this.

Do you blog about your illness? If so, what inspired you to do so?I launched my blog, www.fedupwithfatigue.com, earlier this year after being inspired by other bloggers who were blogging about Fibro. It’s amazing to me that there are actually more people diagnosed with Fibro than rheumatoid arthritis, and yet, if you asked random people, “What is Fibromyalgia?,” few would be able to answer. I want to do my part to change that.

My goal with my blog is to use my journalism/research skills to write about what actually works to reduce the symptoms of Fibro and its sister condition, ME/CFS. I can’t change my diagnosis, but there are steps I can take to better manage it. I want to encourage others to be proactive in managing their illness, too. I know there’s no cure for Fibro, but I’m still hopeful that one day there will be. I want to be able to report on that when it happens.

What is the best advice you’ve received regarding Fibromyalgia?Learn to pace yourself, and force yourself to take regular rest periods. There’s no shame in taking a break.

What was the worst advice that you followed?Looking to doctors for the answers. The truth is, most doctors are pretty clueless about Fibro. I’ve learned to be more proactive and seek out my own answers by studying ongoing research and finding out what has worked for others.

What is your favorite way to cope with your life as a spoonie?Fibro has given me an even greater appreciation of soft, clean sheets. If I’m having a really bad day, I try to escape for a couple of hours by taking a nap.

What is it that inspires you to keep going, despite your illness?Whew, this is a hard one. The thing is, what choice do I really have? These are the cards I’ve been dealt, so I have to play them. Also, I remind myself that there are people in the world who have it a lot worse than me. I have so many things to be grateful for in life – my loved ones, my fur babies, my home, etc. I still hold out hope that researchers will find a cure (or at least, a really good treatment) for Fibro. I know there are many out there who have given up hope, but I can’t let myself go to that dark place yet.

What is one thing you’ve learned about yourself since your diagnosis?I knew I was a strong person before, but now I recognize that I’m even stronger than I recognized. I’ve also learned to be a better advocate for myself.

What is the most important piece of advice you would give to someone newly diagnosed with Fibro (or even still seeking a diagnosis)?Be proactive in your healthcare. It is very hard to find a good doctor. So many times, I think people put doctors on pedestals, thinking they have all the answers. They don’t.

The truth is most doctors have hundreds or thousands of patients. As soon as you walk out of that exam room, they have forgotten about you and are onto the next patient. They do not live with your symptoms on a daily basis. You do! Do not be afraid to fire your doctor and move on if you don’t believe you’re receiving proper treatment. There are good doctors out there, but sometimes it takes a long time to find one.

Also, I think people fall into the trap of thinking one thing will relieve their symptoms. Since being diagnosed with Fibro, I’ve read a number of stories of people who are effectively managing this condition. Here’s the one thing they ALL have in common: They all take a holistic approach to managing their condition (i.e. they addressed diet, exercise, stress levels, supplementation, bodywork, etc., and incorporated all of those things into their overall lifestyle). I am inspired by these so-called success stories to make changes in my own life.