** May 12 is National Fibromyalgia Awareness Day** I realize this is Mother’s Day but on this day wearing purple is showing support and awareness. If you wear purple please feel free to e-mail a picture, post on facebook, or tag me on instagram, and twitter. It means a lot**
So with all that being said my blog post today is focusing on Fibromyalgia.
I didn’t really know a lot about Fibromyalgia before I was diagnosed. I knew it was painful and that it involves your nerves but that’s honestly about all I knew. I didn’t know there would be doctors who didn’t believe in Fibromyalgia, people who questioned you. I didn’t know how many symptoms came along with it, what it involves, how it effects your daily living. I will kind of go through my experience with Fibromyalgia and some of the things I have learned, and I will end it by saying what I hope the future of Fibromyalgia will look like. I will try to keep this as short as I can. Also before I go any further I want to acknowledge where I am getting some of this information. First and foremost I have learned a lot from my Rheumatologist at Cleveland Clinic – Dr. Carmen Gota (Director of Fibromyalgia Clinic at Cleveland Clinic). I have learned a lot from my local rheumatologist who retired and my family physician. I have also learned a lot from Kristal at The Fibromyalgia Pain Chronicles. I have actually had several conversations with her throughout the last few years and appreciate her support and knowledge. Follow her Facebook page here- https://www.facebook.com/KristalPainChronicles/ You can follow her on Instagram here- https://www.instagram.com/thefibromyalgiapainchronicles/ I have also learned a lot through reading some books and articles, and doing my own research. I learned many things at the 2 day Educational Fibromyalgia Clinic hosted by Dr. Gota and several others doctors from different specialties from Cleveland Clinic, like pain and psychology came. This event was also for families to learn about care and what we experience. We went home with a lot of new knowledge and packets of good information. I also have been learning things and find support from a few Facebook Support Groups and friends that I know have it. **Also this is not medical advice – I am not a doctor this is just my personal thoughts and feelings experiences with it**
Ok so now I will start at the beginning. My official diagnosis came in September of 2016. I was 21. Fibromyalgia doesn’t really care what age you are although the average patient is diagnosed at 35-45. Right now it is estimated that Fibro affects as many as 4 million people, men and women, 18 years or older.You have to have 3 months of consistent “tender spots”. There are a total of 18. Mine have been consistently 18 and extremely sensitive since May 2016. There is not an approved blood test yet for Fibromyalgia, but I know there has been one developed, but to my understanding most doctor offices don’t use it (but I think you can request it). I have tried several medications. I have had to stop a few and try new ones. Right now I am content with the medications I take. I was on Lyrica for a while but the side effects got really bad I gained almost 30 pounds on it. I don’t think I have really shared about it here or really anywhere, but at night I started seeing “faces” and being paranoid that someone was in the house. I was like getting paranoid that people hated me and were talking about me. It wasn’t healthy and wasn’t helping with pain anymore and it was scary. I started getting really depressed. So my doctor took me off of it. So because of my reaction with that I can’t really take that type of medicine for treatment. I was asked to try Gabapentin but then after discussing with the doctor and Mom, I decided not to because the side effects mimic Lyrica. I know some people on Lyrica love it and it has greatly changed their lives. Everybody is different and everyone’s Fibromyalgia is different. I think I had a 2 week withdrawal period where I had to taper off and I got night sweats and had some scary thoughts but everything ended ok and I was glad when I was officially off of it. I went to Cleveland Clinic and she tried me on a newer treatment called Low Dose Naltrexone. It doesn’t reduce my pain a lot maybe like 20% to 30%, but we take what we can get, and it has been helping a bit. It mainly calms my spasms a little bit. The side effects are very minimal. I also am on Wellbutrin to help with Fibromyalgia as well as my anxiety and depression. Fibromyalgia treatment can usually involve anti-depression medicine because it does things with serotonin levels and some other things in your brain to decrease the signals your brain is sending to your body. In Fibromyalgia it is believed that our brain sends signals to our body that there is pain but there is nothing there. It’s really kind of cool and amazing what medicine can do to help you.
So the symptoms. This is always kind of a funny topic for me, because with Fibro there are a lot of symptoms that people question, or don’t believe you because they can’t see it or feel it. Also it is kind of weird- funny because I know my POTS symptoms, my Fibro symptoms, and this undiagnosed auto-immune disease symptom. It sounds hard but once you live with it for a while and go to several doctors and learn more about it you learn pretty quickly. The easiest way to separate for me is: Fibro is basically anything that you can’t see, blood tests don’t show anything. I have a very severe case of Fibromyalgia (and no that’s not just me saying that) I got diagnosed by several doctors with the severe kind and all the doctors agreed. In fact interestingly, my neurologist I see here said I am one of the worst cases of Fibromyalgia he has seen. If you feel my muscles they are constantly having spams. I have gotten so used to it that is has become normal for me. They hurt, don’t get me wrong, but I don’t dwell on it. My muscles have been described as feeling like “wood”. There a lot of symptoms associated with Fibromyalgia. I am just going to list the ones that give me the most issues – keep in mind some of these overlap with the others so it’s like doubled if that makes sense. Okay here we go buckle up!
*dizziness, *nausea, *fibro fog -confusion, *exhaustion, *itchy skin, *just a simple hug can really cause me a lot of pain, *horrible sleep, *nerve pain, *spasms, *aches all over, *daily headache (front & back of head), *knot in throat feeling, *weakness *anxiety, *depression,*numbness in legs and arms at random times, *ibs.
Now, I am going to talk about my experiences with having Fibromyalgia. Including some bad experiences with Fibromyalgia because I am guessing if you have Fibro these things have happened to you and it needs to be talked about to raise awareness. Also I will be talking about things I have tried to ease pain and conversations I have had with people. (also take note this is one of the blog posts that is not intended for any one person- if you have said these things don’t worry, I probably forgot who said what but I’m putting it here because you may not know that it was actually hurtful to say to someone. I’m also sharing to try and stop it from happening to someone else)
Ok, so you may actually roll your eyes and not believe any of this but these events have ALL happened. I have had 2 doctors tell me Fibromyalgia isn’t even real and that I’m not really this bad.
Before I start this one, I want to make note, I did water aerobics class consistently for a year and a half at a swimming place. Then one summer I bought a waist deep pool and did these exercises at least 3 times a week. I got worse my doctors told me I needed to stop. I was falling in the pool and my joints were awful and I would have horrible spasms for hours. It wasn’t relieving any symptoms. If a person only has Fibromyalgia exercise is supposed to help in moderation. I don’t just have Fibromyalgia so for me and my body exercise actually makes things worse. I am only supposed to be walking around a house with my walker. Anyways several people have told me I wish you would just walk more. You would be so much better if you started exercising. My friend has Fibromyalgia and did this and she is much better than you. You shouldn’t be eating that. You shouldn’t have any pop.
Right now even typing it my stomach turns into knots. I place the guilt on me. I think oh my gosh what have I done wrong. I have tried all of those things and fail. What is wrong with me and my body. I have had doctors tell me you can’t really reverse anything that has happened to me, none of this was caused by me, it’s not my fault. Right now I haven’t been getting better. I am kind of stuck so we are just trying to manage things. So the ones who tell me I’m not managing my Fibromyalgia right… sorry but you don’t know. You don’t sit in the countless doctor appointments I go to getting my treatment plan right with ALL my doctors I see. You don’t have to pay the piling medical bills for it. You don’t deal with this pain every single day 24/7. I get a “break” when I sleep but not really. I have had a sleep study done and the amount of leg “kicks” I had were crazy. So no this is not like the flu where it goes away, this is like a flu that stays all the time. Your friend may have Fibromyalgia and those things may be working for them, (great I am glad for them), or he/she maybe putting on a brave face and faking it, but please remember I don’t only have Fibromyalgia and mine is SEVERE Fibromyalgia which no one really talks about. So please try to put yourself in my shoes when you say those things. Sometimes it feels like when you say those things you think all my symptoms are fake, that I can’t really be this bad, and that you think I don’t care and am being lazy for being in the wheelchair or walker. Or that I am fat and caused more pain on myself because I don’t eat salads and special drinks. I have held back tears, just nodded, I have gulped things down while listening to 2 doctors saying if you only did x,y,z. But you know what I have had enough! It is time for me to take a stand! Its going to be really hard for me but how I am supposed to advocate for others if I continue letting this pattern happen? We need to speak up! Fibromyalgia is different in everyone and there is still SO MUCH research to be done. (see I told you I was really passionate about this subject)
Which brings me to the next topic of this blog. What I want for the future. In a few words, CHANGE, ACCEPTANCE, AWARENESS. Those 3 things LACK so much right now and it is hard. Did you know there is so much unknown about Fibromyalgia. In fact there are still doctors who refuse to believe it as I have experienced. They think it is fake and it is all in our head. They have started researching if this is auto-immune because they have started noticing it seems to be hereditary. Also they have noticed that traumatic events usually trigger it. So my PTSD from finding dad and dealing with his death and then getting really sick was my body’s “firework” show for Fibromyalgia. There are doctors that want you to go back to your childhood because some of these symptoms were showing up in childhood. There has also been research done wondering if this is a progressive disease, not in the fact that it destroys things in your body but that it will get worse with time. They have wondered if there are different stages meaning more in depth parts to call things instead of mild, moderate, severe fibromyalgia. It has been proven that people with Fibromyalgia don’t reach REM sleep long enough and that we don’t really ever get into the deep stage of sleep. So sleeping isn’t really healing for us which is why we wake up tired and it becomes a nasty cycle. Now for change. I need a lot to change. I need doctors views and societies view on Fibromyalgia to change. I wish that applying for Disability with Fibromyalgia was more valid. Newsflash- it can be very disabling. Health care plans need to change but I won’t go into politics. Acceptance. Your friends and family should be accepting you, you are still you. (I am so thankful that my family has been very supportive) You may have to do things differently and you may have to cancel plans sometimes but hopefully they understand or will understand. Awareness. There needs to be so much more awareness. This chronic pain and illness is not FAKE. It is real. The pain is intense and doesn’t really ever let up. Doctors need more trainings on it. I don’t think there is enough information out there for doctors and nurses. Some of them are amazing – I love my doctors and nurses, but I have also came across enough experiences and heard experiences from other people and something needs to change. People need to understand that symptoms can hit suddenly and vary in intensity. So if I hope for anything in the future. I hope for better understanding from society, health care professionals, family, friends, being accepted by them. I hope to raise awareness so more people understand what this nasty viscous disease is. Something needs to change! I hope this inspires you to stand up for a change! Speak up for yourself or your friend or family! Let’s change the way Fibromyalgia is understood. I had never come across this bible verse before, or it hasn’t spoken to me until now. WOW what a powerful verse.
“Do not be afraid; keep on speaking, do not be silent.” Acts 18:9
Thank you for taking the time to read this blog! I appreciate you reading this! If you have any questions please feel free to comment or e-mail!