Today I am reflecting on many things. Most of them are positive and some of them aren’t as positive as I wish, but they are becoming so. Let me explain.
Since December I have been feeling strange symptoms that had me worried I was having a heart attack. Seriously: heart racing or pounding even when I lie down, my left shoulder and neck aching, trouble breathing, weird bathroom experiences (I won’t go into detail on that one!), dizziness, headaches, eyes twitching, insomnia, extreme fatigue, nausea, weak muscles (I can’t get up off the floor), shakiness and pain all over.
Some of those didn’t surprise me - I had been diagnosed with fibromyalgia a couple years ago. But everything seemed worse than usual. And the added shoulder pain and heart problems had me worried that I was having a heart attack. My dad just had quintuple bypass surgery 3 years ago, so it was natural to think it might happen to me, too.
I waited until last week to see the doctor, partly because I was trying to make sure I had adequate insurance just in case it turned out to be serious. I had to wait on getting insurance because my husband has been out of work since November and just started a new job last month. Crazy.
Here’s some other things I’ve been ignoring: my daughter is going through a divorce, my son moved home for a little while to save money, I can’t decide whether or not to keep up my business (which also stresses me out sometimes), and I can’t get a job to help my husband out with bills because of the fibromyalgia. Ugh!
I’ve also stressed over other duties I’ve had, but that’s just icing on a mud cake.
I finally saw the doctor and, looking at my chart, he calmly explained that it was my fibromyalgia acting up. All the stress and anxiety I’ve been feeling are making my symptoms worse.
By the way, I quit a couple of the volunteer positions I had and started seeing a therapist to help me deal with the stress. And I’ve started a health group on Facebook to help people get in shape and become healthier. That, I have to admit, was mostly for me so I’d have someone to be accountable to for my health. And I have been reading “The Gerson Therapy” which helped me add some juices to my diet to help give me more nutrition.
The doctor was able to relieve my fears and for that I am grateful. He said I was doing everything right by exercising and eating right and going to therapy for help.
He also said that the anxiety was worsening my symptoms - but, never fear! - since 2 years ago when I was first diagnosed, there have been improvements! They have found a couple medicines that actually help with the fibromyalgia, not just treat one of the symptoms! I am so excited!
It takes a couple weeks to really start working (similar to anti-depressants) and I am in my second week. So far, it seems like I am improving each day! There is hope!
For those of you who don’t know what fibromyalgia is, here’s a brief lesson, thanks to WebMD:
With fibromyalgia syndrome, the following symptoms commonly occur together:
Decreased pain threshold or tender points
Fibromyalgia is the most common musculoskeletal condition after osteoarthritis. Still, it is often misdiagnosed and misunderstood. Its characteristics include widespread muscle and joint pain and fatigue, as well as other symptoms. Fibromyalgia can lead to depression and social isolation.
Fibromyalgia causes you to ache all over. You may have symptoms of crippling fatigue -- even on arising. Specific tender points on the body may be painful to touch. You may experience disturbances in deep-level or restful sleep, and mood disturbances or depression.
Your muscles may feel like they have been overworked or pulled. They'll feel that way even without exercise or another cause. Sometimes, your muscles twitch, burn, or have deep stabbing pain.
Some patients with fibromyalgia have pain and achiness around the joints in the neck, shoulder, back, and hips. This makes it difficult for them to sleep or exercise. Other fibromyalgia symptoms include:
Hypersensitivity to cold and/or heat
Inability to concentrate (called "fibro fog")
Numbness or tingling in the fingers and feet
(see WebMD.com for more info, especially if you think you may have these symptoms!)
Boy, did that explain a lot! It explains the shoulder aches, heart palpitations and many other symptoms that made me think I was having a heart attack. That certainly didn’t help my anxiety to think that, so I was very relieved that the doctor knew this.
I write these things in hope that this article helps someone else who may have or know someone who has these symptoms. Maybe even just understanding what someone with the syndrome is going through will help. It’s not fun, that’s for sure, but it is treatable and manageable, to a point.
Here’s what it feels like, day to day: I have a really hard time moving. Even getting up from sitting is hard. I get shaky and weak. I can’t hike or bike (which I love) very easily because I just hurt all over and the fatigue makes it impossible to keep going. The problem is that being stationary actually worsens the symptoms. Imagine when you have the flu and you ache all over - all you want to do is stay in bed, right? And it hurts to move. You just want to shrink up until it’s over. That’s a daily occurrence in my world.
There are also these weird pains, which I call “Demons With Knives”, all over inside my body. It will randomly occur and you might see me say “ow!” and grab my arm or leg or head. My description is about as accurate as it gets - it feels like there are little demons running around inside me making random cuts in random places. And sometimes it last for 10 minutes. And they aren’t little pains, either. They are BIG. Exactly like a knife.
I want to play pickle ball with my friends or go hiking with my husband or even just sit and play with my grandchildren, but I can’t even move sometimes. Which is why I don’t even like going to the theater to watch a movie any more. It’s just so uncomfortable!
Other times I can’t even go to church or a friend’s house without feeling like I’m going to explode. I often get really restless in my low back and legs. And then my shoulders and neck hurt from tensing up so much. Then someone asks me how I’m feeling and I either want to cry (which is what I do a lot) or I just lie and say something like “I’m good. How about you?” That way we don’t talk about me.
Let me tell you - I have a really high pain threshold. I told the doctor that I described a (I can’t think of the word, give me a sec …) kidney stone as a 7! He laughed. I know, but childbirth and kidney stones aren’t the worse thing I can imagine. Being tortured or maimed, those are worse. But truly, if I were to be honest, childbirth is really difficult for me. And having a kidney stone was right up there along with it. And now I have to deal with this. Fibromyalgia.
In some ways, this is worse. First of all, I’m a “tough girl.” I like everyone to think I am strong and independent and well-organized. “I can do it myself” is something I think and often say. So having a disease that is invisible to others can be hard. When I can’t walk or stand up or dance like I used to, and when someone sees that, I can’t help but think that they think I’m crazy. If I had a cast on my leg, it would be more obvious. But there’s nothing on the outside to tell others what I’m going through. Once someone asked me if something was wrong when I stood up funny. I just said “I’m just getting old.” Bleh. Why did I say that?
Most people don’t even know what this disease is, let alone what it does. So it’s hard to comprehend. I’m hoping this article helps with that.
If you know someone who has this disease, just be good to them. If they cancel dinner plans at the last minute, just know it’s not you. It’s the fibromyalgia. And if they don’t speed walk through the store like they used to, it’s just that they want to cry with every step. It hurts. And maybe they are trying to be tough so they don’t say anything. They joke about being old. Even when they are only 52.
And exercising? That is the toughest of them all! I physically don’t want to move. I don’t want to do anything strenuous because then I’m down and out for a long time. So walking on the treadmill is absolutely excruciating. Well, it’s not that bad, but it’s still the last thing I want to do. Doing yoga helps keep my muscles working but it hurts a lot. And doing floor exercises and lifting weights is just horrible to me. But I do them because if I don’t, I will just keep gaining weight (which makes things worse) and I actually hurt more. It seems like a losing situation either way, but there it is. It’s what I gotta do!
I hope someone benefits from this and can see a doctor and get treated. I also hope it helps others to understand. Because it’s a little intimidating to put yourself out there on the internet. I naturally want to hide when something is wrong and someone else might be feeling the same way. Please, get to a doctor because it’s not YOU, there’s nothing wrong with you, it’s a disease that makes you feel that way! And you can get help!
“You are not the circumstances which brought you to this point in life, but the desires in your heart; follow them and become what you dream. That is the real you!”