I met Trisha when I first began blogging last year. Like me, she also lives with fibromyalgia, and was the first spoonie blogger with whom I connected. It’s been a pleasure getting to know her, sharing “Me too!” moments from opposite ends of the country, and having an opportunity to learn about natural remedies that ease fibromyalgia symptoms. Trisha lives in Washington with her husband and two sons. She blogs over at Notes from the Fog.
1) So, what ails you?
I was diagnosed with fibromyalgia, but I’ve often wondered if I actually have Chronic Fatigue Syndrome instead. Or, if I have fibromyalgia and a mild case of Chronic Fatigue Syndrome. Or, if they are two slightly different manifestations of the same illness and it doesn’t really matter which one I was diagnosed with. The two illnesses are so similar it can be confusing.
2) When did you receive your diagnoses? How long was it from the onset of symptoms before you had a diagnosis?
I got the diagnosis of fibromyalgia in 2003. I’d had increasing fatigue and a generalized all over achiness for a couple of years. I thought I was just tired because I had a baby who never slept. Then, in the spring of 2003, I had my first massage, which triggered a major flare up. That’s when I knew something was definitely wrong and I went to a naturopath. I received my diagnosis a few weeks later.
3) How does your illness manifest itself, (symptoms)? Does it or has it manifested itself in a way that is atypical? Did that delay receiving a diagnosis and/or does that require you receive different medical treatment?
That first major flare up consisted of severe fatigue and kidney pain, which did delay diagnosis for a week or two while my naturopath checked out my kidneys. It probably would have delayed diagnosis for a lot longer, but I happened to look up the symptoms of fibromyalgia and realized it fit with what I was experiencing, (aside from the kidney pain.) My naturopath reluctantly tested my tender points and seemed really pissed off that they were, in fact, tender. I guess she wanted to be the one to come up with a diagnosis! These days the kidney pain only flares up occasionally. Most of the time the fibromyalgia manifests itself as all-over achiness, pain from “weird spots” in my muscles, headaches, mind numbing fatigue and brain fog and dysfunction.
4) Have any unconventional or naturopathic treatments worked for you? What are they?
The naturopath I was seeing a couple of years ago recommended the anti-inflammatory diet and I have found some relief from (loosely) following it, especially after cutting gluten, corn, dairy and refined sugar from my diet. I’ve found that 200 mg a day of CoQ10 really helps with energy and that a liquid extract (tincture) of valerian root helps with sleep. I recently started taking Siberian Ginseng and find that it helps with the fatigue too. I also use essential oils topically, mostly doTERRA’s Deep Blue, Plant Therapy’s Pain Aid and a combination of lavender, marjoram and chamomile at night. I think acupuncture would help if I could afford to do it regularly. I felt it doing something during the few treatments I had.
5) How has your illness affected your daily activities? How has it affected you long term? Are there things you used to love doing, but can no longer do?
My illness has forced me to slow way down. I used to work full-time and take care of my home. Now, I don’t have a job outside the home and I still can barely keep up with housework. I have to keep my life very simple and quiet or I end up crashing. I don’t see me ever being able to work full-time, unless I experience a miraculous cure. There are many things I used to love doing that I can’t now. The first one to come to mind is hiking. I really miss that.
6) How has your illness affected your mental health?
In one way, it’s had a positive effect. I’ve had to really get to know myself, to know what’s truly important to me. All the time home alone allows for a lot of soul searching. On the other hand, I talk to myself a lot now, so maybe I’m not as sane as I’d like to think.
7) How does your illness affect your family and friends? Have they been supportive?
Friends and family have had to get used to me not doing a lot of things I used to do. Some have been supportive. My husband is supportive most of the time, but he doesn’t really understand. My mom is as supportive as she can be, and she definitely understands because she has chronic pain and probably fibromyalgia too. A couple of friends are understanding and supportive. A few people have made it clear they don’t get it and others just exude skepticism without saying anything.
8) What do you wish people understood about your illness?
I wish they understood how hard this illness makes it to keep up with the daily things that need to be done, like dishes, meals and laundry. I wish they understood that those things take all the energy I have and some days I don’t even have enough energy to get through them. I wish they understood that I have pain every single day of my life and that when I say I’m doing good, I’m still in pain and battling fatigue.
9) What do you wish people understood about you in light of your illness?
I wish people understood the sensory processing issues and overstimulation that can come with this illness. I wish they understood how hard it is for me to be around people, to be out of my house, to be surrounded by noise and movement. That it doesn’t matter if I’m just sitting – it’s still exhausting. And I wish they understood that I do wish I could do more.
10) What has pissed you off the most during your journey with this illness?
I get really pissed off at life for continuing to demand so much of me when I feel so awful. I get pissed off that people continue to have so many expectations of me. Again and again, I explain how difficult driving is for me and I still get pressured to do it. I get pissed off that I have to do anything for or participate in holidays that don’t mean anything to me, just because it’s what everyone does.
11) What has been the most helpful?
The thing that has been the most helpful in my partial recovery is avoiding chemicals and food additives. Switching to a natural laundry detergent and not using any kind of fabric softener or dryer sheets made a huge difference in how I feel. I’m also discovering that even innocuous sounding food additives such as “natural flavor” increase my pain. If I could figure out how to make everyone else give up their fabric softener and perfume, I’d be in pretty good shape!
12) If you could shoot one of your doctors/healthcare providers out of a cannon because of their asshattery, who would it be and why? About two years ago, the clinic I went to put me in with a different doctor than I requested. I was not pleased and this doctor, who I call Condescending Bitch, was even more unhappy to have me as a patient. She was very rude, basically scoffing at everything I said. She refused to order blood work and sneered when I asked about trigger point injections, saying that “no one did those anymore.” She made it clear she felt nothing but contempt for me, and I’d love to shoot her out of a cannon!