The past 2 months I have had this mysterious virus that has progressively gotten worse, especially in the last 2 weeks. I have had zero energy. I have wanted to take a nap every day and have just felt like no matter how much I sleep I just can't shake this exhaustion. I was finishing up a Whole30 detox the end of May where you pretty much only eat meats, fruits and veggies, along with healthy fats-very similar to a keto diet. Last time I had done a Whole30 I felt amazing and this time it just wasn't the same experience. I felt depressed. I had no energy. I just didn't feel myself. I kept waiting for that energy burst and mental clarity that I experienced last time and it just never really hit like it had last time.
Today as I was folding the 4th basket of laundry that I had put off doing after running around all morning doing errands something clicked. "Jennifer, you have Fibromyalgia! You are in the middle of a flare! That's why you have felt like crap for the past 2 months!" It was like a flood of "Oh wow, this makes so much sense." Some of you might look at this and be like, "Jennifer, how would you not realize this? You have a Fibromyalgia blog. You facilitate a Fibromyalgia support group. You have had a diagnosis of Fibromyalgia for almost 15 years. How would you not realize that Fibromyalgia is the cause of all of this?" I get it. I should have realized it, but I didn't.
I am not one of those that likes labels. I don't want to be the Fibromyalgia poster girl. I don't want people to look at me and say, "Oh, that's Jennifer. She has Fibromyalgia!" So I don't broadcast that I have it. Unfortunately I do and know all too well how real it is. I began to reminisce of the past few months to see what triggered it. (There is always a trigger that starts a flare in me.) As I thought back, it was when I hurt my back at work. It had to have been. Along with that traumatic injury, I have had 2 particularly stressful months while doing volunteer work. I used to pamper myself with "do nothing days" and take better care of my super-sensitive auto-immune crabby body. I haven't had a "do nothing day" in...well, to be honest, I can't remember the last time I had one. I have gone non-stop since March and now it is May. My body is in a full revolt and today the message finally made it to my brain and said, "WE ARE DONE! ITS TIME TO REST!!!"
Fibromyalgia is the closest thing to "a thorn in the flesh" that I can relate to. I am way too busy of a person to have to baby my body and take time out of a schedule to schedule rest. Yet it is what I am going to have to do. After this week my schedule should ease up and I can return back to my "do nothing day" routine. If I keep going at the speed that I am going at, things will only get worse. I share all this to say, even the pro with Fibromyalgia sometimes forgets to treat her body the way she knows that she needs to. I pushed too hard and let stress become overwhelming due to a beyond busy schedule. So (raises up her glass of water) here's to a relapse and working to get better! (virtual clink)
Wednesday, May 9, 2018
Saturday, March 24, 2018
The Trouble with a Diagnosis is...
I've had several people contact me within the last few weeks asking something similar to, "Hey! Is it true that you have Fibromyalgia?" I always reply with a simple yes and wait for their questions. In the past, the response would be something like, "but you don't act like someone with Fibromyalgia" or something along those lines. Here lately the response has been asking questions because they, or a loved one, has been recently diagnosed and they are looking for answers, and who better to ask than someone who has Fibromyalgia.
I was 26 when I was finally diagnosed. Many people who don't know me well would never know something is wrong with my body. I tell the ladies of the Fibromyalgia Support Group that I facilitate that I have tried to hide this for many years. In the past, the people who were diagnosed were of the dramatic nature. They would come to their doctor or the hospital and list off a series of ailments that many recognize and then in a sighing breath say, "and I also have Fibromyalgia" as they would collapse onto their bed or into their wheelchair. I hid my diagnosis from many people because I didn't want to be associated with "those people". However the symptoms remain and no matter how much I would like to deny such a diagnosis, I have the classic symptoms of Fibromyalgia syndrome and I'm not ashamed of that.
When I get the awesome text asking if I have this unknown disease that has gained popularity with the treatments of Lyrica and Cymbalta and the myriad of other prescriptions that don't usually work on my body, I know a person is confused and wondering what on earth they have just been diagnosed with. I send them to this blog usually and tell them that this is everything that I have learned over the course of time. Since I have had this diagnosis for 12 years I have cleaved a ton of knowledge from books, online seminars, and the physicians that I have visited. What I have learned from my support group girls is that nobody has the exact same symptoms and a treatment that works for some, doesn't work at all for another.
It's a frustrating disease that is diagnosed by a trigger point exam. I believe that there are 16 trigger points that are pressed upon and you rate your pain on a scale of 1-5, 5 being the worst. At least that is how my doctor diagnosed me. I rated either a 4 or a 5 on all but one trigger point. Walking away with that diagnoses I felt lost. Now, 12 years later, I know what works for me, which is exercise and clean eating. If I don't exercise and eat processed foods for a long period of time, I find myself having migraines, joint pain, and having a hard time sleeping. My immune system is like a very dramatic 14-year-old who is on the verge of a meltdown over the simplest thing. My body decides that I have hypothermia when it gets cold and I develop Reynaud's where my body pulls my body heat from my extremities to protect my body organs and the only way it goes away is if I take a hot bath and get my entire body warm at the same time, otherwise it is hours before I can feel my hands again.My body reacts like I just broke my hand and will swell up and be painful to use for about an hour if I hit it on the door jam. If I overeat sugar I will get a migraine at the hint of a front moving through. If I get a muscle injury, my body will over-react to the point that I need physical therapy to get my motion back. I've had my skin over-react. I've had my ovaries and bowels have crazy reactions to the simplest of things. It's a raw deal, but it's mine and I refuse to let it get me down.
A diagnosis of Fibromyalgia is not the end of the world. There is no cure but there are ways to get your symptoms to go away. It's not a death sentence which is great! You have to find out what works for you and your Fibro. What works great for me might make your symptoms worse. I do encourage you to go back to MY beginning in this blog, especially if you just got diagnosed. There are books that I read and online seminars that gave me precious information that helped me get to a place where I don't take meds for my Fibro on a daily basis. There is hope! There is help! You just can't give up on it.
I was 26 when I was finally diagnosed. Many people who don't know me well would never know something is wrong with my body. I tell the ladies of the Fibromyalgia Support Group that I facilitate that I have tried to hide this for many years. In the past, the people who were diagnosed were of the dramatic nature. They would come to their doctor or the hospital and list off a series of ailments that many recognize and then in a sighing breath say, "and I also have Fibromyalgia" as they would collapse onto their bed or into their wheelchair. I hid my diagnosis from many people because I didn't want to be associated with "those people". However the symptoms remain and no matter how much I would like to deny such a diagnosis, I have the classic symptoms of Fibromyalgia syndrome and I'm not ashamed of that.
When I get the awesome text asking if I have this unknown disease that has gained popularity with the treatments of Lyrica and Cymbalta and the myriad of other prescriptions that don't usually work on my body, I know a person is confused and wondering what on earth they have just been diagnosed with. I send them to this blog usually and tell them that this is everything that I have learned over the course of time. Since I have had this diagnosis for 12 years I have cleaved a ton of knowledge from books, online seminars, and the physicians that I have visited. What I have learned from my support group girls is that nobody has the exact same symptoms and a treatment that works for some, doesn't work at all for another.
It's a frustrating disease that is diagnosed by a trigger point exam. I believe that there are 16 trigger points that are pressed upon and you rate your pain on a scale of 1-5, 5 being the worst. At least that is how my doctor diagnosed me. I rated either a 4 or a 5 on all but one trigger point. Walking away with that diagnoses I felt lost. Now, 12 years later, I know what works for me, which is exercise and clean eating. If I don't exercise and eat processed foods for a long period of time, I find myself having migraines, joint pain, and having a hard time sleeping. My immune system is like a very dramatic 14-year-old who is on the verge of a meltdown over the simplest thing. My body decides that I have hypothermia when it gets cold and I develop Reynaud's where my body pulls my body heat from my extremities to protect my body organs and the only way it goes away is if I take a hot bath and get my entire body warm at the same time, otherwise it is hours before I can feel my hands again.My body reacts like I just broke my hand and will swell up and be painful to use for about an hour if I hit it on the door jam. If I overeat sugar I will get a migraine at the hint of a front moving through. If I get a muscle injury, my body will over-react to the point that I need physical therapy to get my motion back. I've had my skin over-react. I've had my ovaries and bowels have crazy reactions to the simplest of things. It's a raw deal, but it's mine and I refuse to let it get me down.
A diagnosis of Fibromyalgia is not the end of the world. There is no cure but there are ways to get your symptoms to go away. It's not a death sentence which is great! You have to find out what works for you and your Fibro. What works great for me might make your symptoms worse. I do encourage you to go back to MY beginning in this blog, especially if you just got diagnosed. There are books that I read and online seminars that gave me precious information that helped me get to a place where I don't take meds for my Fibro on a daily basis. There is hope! There is help! You just can't give up on it.
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