May is Fibromyalgia Awareness Month so that’s what brings me to writing this blog post. I don’t really have a lot to update with my Fibromyalgia because since last year nothing has really changed. I’m still on the same medications. The pain has gotten a little worse over time but it’s a chronic illness so it’s not as shocking anymore.
So I’m going to run through a brief overview of how I got diagnosed and what I deal with everyday.
So this started back in the spring/summer of 2016. It was during my stay in the hospital that this pain and spasms had began. I either got diagnosed in August or September of 2016 officially. You have to have pain on the pressure points or tender points, whichever you prefer to call it, for 3 months straight. So there are 18 different points. This means on a normal person if a doctor put a little pressure there it wouldn’t really bother or hurt you but for someone with fibromyalgia like me, it hurts so bad. There were times when I automatically winced because of the pain. This pain is also usually symmetric – meaning if your right shoulder point hurts your left will too. However there have been some recent studies showing that you may not have as many tender points and it might not be symmetrical.
When I went to Cleveland Clinic in the winter of 2017 I met with the Rheumatologist who is in charge of the Fibromyalgia Clinic there. She put me on much better medications. I was on Lyrica and needed to come off because I was having horrible weight gain and paranoia among other things. She put me on a newer medication called Low Dose Naltrexone (or LDN). It has helped calming the spasms and giving me a bit of relief. I also was put on Wellbutrin for my depression but it helped with Fibromyalgia as well. I learned a lot about Fibromyalgia from her and she hosted some other doctors at Cleveland and they explained in depth about what Fibromyalgia is like for the person and they explained it to the caregivers. It was so helpful. She had a bit more tests and papers to fill out for Fibromyalgia. After completing the WPI (Widespread Pain Index) and SSS (Symptom Severity Skill) we learned that I had a very severe case of Fibromyalgia. She had said it was on of the more severe ones she has seen.
The local doctors I visited sometimes told me I had the worst case of Fibromyalgia they’d ever seen. Not all my problems are Fibromyalgia but you can separate it from my other symptoms. A doctor felt my muscles and said they felt like wood and they were spasming like crazy. I’ve kind of gotten used to the 24/7 spasms but they aren’t comfortable. Another doctor had me do a series of different stretches and walks. One of them was something with raising my right hand and then I wasn’t able to push my foot forward. So they see the disconnect there and that is a sign of Fibromyalgia. I know for some walking and exercising help so much with Fibromyalgia and some of the diet changes. Please know that mine is very severe and on top of having a severe case I have POTS and this undiagnosed auto immune disease. I’ve seen a really good pain management doctor locally and one at Cleveland Clinic and there isn’t really anything they can do. I can’t exercise like normal because it’s so severe that it would make it worse.
I’ve been reading so many different things this past year also and I’ve seen some articles and blog posts discussing that maybe Fibromyalgia is also an auto-immune disease. There is proof that it seems to be hereditary. They are also wondering if there are also different stages of Fibromyalgia like 1-6, and some are seeing that pain is worsening over time so they are starting to look at if it’s a progressive disease. So far there hasn’t really been anything to show that Fibromyalgia damages your muscles or anything.
It’s hard to diagnose because it’s invisible. There are things they do that can guide them in the diagnosis for you. I also want to let you know, please be wise and careful on who you see. Unfortunately there are some doctors that just slap Fibromyalgia on because you have widespread pain and they can’t figure it out. This is complicated because you could be getting diagnosed with the wrong thing and taking medicines you don’t really need. I had a lot of validation and many doctors telling me I had Fibromyalgia. They had their paperwork on me to back everything up.
Alright so now I’m going to talk about what living with Fibromyalgia is like. The best way I describe it is it feels like a flu everyday all the time and crazy spasms. My temperature doesn’t regulate well which is also related to POTS. My feet can feel like they are on fire and get really red. I have certain materials that I can’t stand to wear because it literally hurts my skin. I have a daily headache which they split into 2 different diagnoses. The one is called a chronic daily headache which is based more at the front of my neck then the other called cervicogenic headaches which is at the base of my neck more. Sometimes your body feels really heavy and sometimes all you want to do is lay down and sleep. There are so many symptoms that I could keep naming but these are the ones that bother me the most.
Also so many people think that someone who gets diagnosed with Fibromyalgia is a “baby” because they don’t believe it’s real and just like other invisible illnesses you can’t see it. Fibromyalgia is tricky because there aren’t any tests to prove it which can be hard for others to understand. We aren’t making this pain up, in fact, most patients down play it. I know I’m guilty of that and my doctors usually know that and we get the truth to come out. It’s painful and a nasty thing to live with. Also please know that someone with Fibromyalgia usually has tender spots so slapping on the back or patting shoulders or giving a hug can be painful. I usually just stick my hand out to shake or many of the people that know me give me really gentle hugs.
“The Lord is my rock, my fortress, and my savior; my God is my rock, in whom I find protection. He is my shield, the power that saves me, and my place of safety.” -Psalm 18:2
I got some information from a website named creakyjoints.org and here is the first article I got some facts of off and this is the second article. I also got some information from Cleveland Clinic’s website.