I often get asked what does your pain feel like? The easiest way and shortest way to describe it is it basically feels like the flu aches. That is the fibromyalgia pain. The “unknown” (meaning the diagnosis they are waiting on) other pain I experience – the joint pain is different. That is like a burning, stiff, pressure aching pain. I did a “poll” on Instagram this week because I knew if I did that 1. They would help me decide on what to write 2. I would be held accountable and couldn’t back out. The 2 blog options were A. The physical and mental pain I experience like how my body feels. B. July-September have been crazy for me. Long story short I have been in a big flare up since end of July running low grade temps etc, thought we were finally going to get the blood work we needed since I was in a flare and get some answers but blood work came back like always and we were left with no new information. So many people voted for option A, so that is what this blog will be about. Since some voted for option B, I will probably do a blog later. I have not blogged and I hate it because I feel like every time I blog I say I want to blog more. Hopefully once we move into the new house I can get more organized and make myself more accountable. I thought about splitting this blog into 2 parts but decided I didn’t want to chicken out on part 2 so it is just going to be a long blog 🙂 sorry!
Wednesday night I came down with the stomach bug and I’m getting better – I think it was just the 24 hour one. I almost backed out of doing this blog post this week and postponing it because I didn’t want to publish this. I hate talking about pain. I hate it because some people think I am way over exaggerating when in reality if anything I downplay. I have had doctors tell me that they know I am in a lot more pain than what I am saying. The one pain doctor I visited at Cleveland Clinic could feel my muscles spasm and said all my muscles felt like wood, so he knew I was in pain. He had me do a couple of different “exercises” and there is something not communicating in my body. So he had me raise my foot and my arm and told me to move my foot up and down. I couldn’t, I knew what it was supposed to do but it wouldn’t budge. We switched to the other side and the same thing happened. We kept doing this different ways and individually it worked but as soon as it was together it would stop. He said my body was basically so “haywire” that the signals my brain was sending to my body was so crazy my body was basically on override. He told me there wasn’t much to do for the pain. They don’t prescribe any narcotics or pain medications to people with chronic pain. When I first got out of the hospital they had me taking norco on and off for a month – it didn’t really help. Once we got the Fibromyalgia diagnosis and knew this was chronic all my doctors said no pain medicine. They explained to me that its not good to be on a pain med for chronic pain. One because its chronic and two it will just mask my pain eventually making me worse then I was. Why? Because, when the medicine “masks” your pain, you aren’t going to tell yourself to stop you’re really in more pain and you need to rest even though you can’t feel how much pain you would be in. So then you would just run yourself into a bigger flare up. Pain medications don’t solve the problem they just mask it. After dealing with this for 2 years I’m glad I am not on pain meds or numbing block injections. Yeah, I would love to be pain free but that’s not even a reality. I really liked the 2nd pain doctor I met with locally. I remember him asking me on a scale of 1 to 10 what’s your daily pain. I said a 5 or 6. He said something along the lines of, “I just did a physical examination on you, I see the list of doctors you see, and you’re in a wheelchair and you’re telling me its just a 5?” I said ok maybe a 6 or 7 and on flare days an 8. He said we could try a medication that would help with nerve pain but we were both hesitant because it acts like Lyrica and I didn’t respond to Lyrcia well physically or mentally. He said there wasn’t much to do. I understood. The thing with chronic pain is it’s different than the pain you have during an injury. It doesn’t heal- it’s just there. They said with fibromyalgia pain light exercise can help. The doctors said I could only do water aerobics and not to do any work outs on land. We did water aerobics for a good year and then I bought a pool last summer and did it at least 3 times a week. It made my pain so much worse and my joints were red and warm and swollen and my spasms were getting worse. My doctors said I needed to stop then since it was making things worse. That’s where this “unknown” diagnosis comes in. I don’t just have Fibro so the treatments that “work” with that don’t always work on me.
I am always in pain 365 days 24/7. When I sleep I don’t feel the pain but during my sleep study they told me I kick and move around a lot which is what some people in pain do during sleep. Some days my pain is better and some days when I am in a “flare up” it gets worse. My pain was staying pretty “steady” I guess you would say this summer until the end of July. It’s been pretty high, especially this month. I pushed myself a little too hard trying to pack up. I still am learning and adjusting to my body’s limits. Ok, so now I will start to describe the pain I experience.
I have a daily headache that hurts in the front of my head and the back of my head down my neck. I have 18 “points” on my body that hurt every single day especially if they get touched. If you are interested in seeing what the 18 points are visit this website. Fibromyalgia 18 Points. I have spasms all the time some more intense than others – these are throughout my whole body. My medicine helps lessen these a little bit. My eyes and mouth are always incredibly dry and hurt. If I forget 1 night of eye drops I pay for it the next day. I sleep with a humidifier which helps a little bit. My jaw hurts after eating or talking for a while. My hands are starting to hurt more right now as I am typing and they are starting to swell up. My back always hurts and is constantly spasming which makes it hurt more. My hips have been hurting a lot more recently and getting red and warm which makes sleeping difficult because I sleep on my side sometimes but putting pressure on it right now hurts. My “lower” half is the part of my body that hurts way more. My legs, knees, hips, ankles, muscles, feet, joints. I don’t walk a lot and I am not supposed to walk a lot especially without my walker. I am only supposed to walk around the house not outside and need a wheelchair for anything longer. The reason is because my knees start to swell and turn red and warm. My rheumatologist has seen this happen which is why I have to be careful about walking. For instance if I stand to brush my teeth when I am done my knees get hot and swollen in just a matter of 5 minutes. Can you imagine what would happen if I stood on them all day? My calves are particularly painful. I’m not sure why, but they are. My feet also get really swollen by the end of they day which gets painful especially when the bottom of my feet turn red and burn. I am supposed to wear compression socks but during the spring and summer I don’t want to wear those with sandals 😬. I will try to do a better job this fall/ winter. I have been running a low grade fever ranging from 99.5-101 basically the whole month of September and I am still dealing with it. Tylenol and peppermint oils have been helping bring it down a little. This is the longest it has lasted. I had a lot of blood work done earlier this month because we thought it would finally come back positive but it didn’t. Anyways so that’s been happening. I usually always have a sore throat but when I am having a flare up that’s usually the 1st thing that starts hurting worse. I also get “mouth sores” pretty frequently. Orajel helps so much with those. I usually get 2 or 3 at a time anywhere at the top of my gums or tongue. I also get swollen lymph nodes along my neck and underarm and those get pretty painful. My shoulders hurt a lot especially after activity. That is the part of the reason I can’t get myself dressed or wash my hair anymore since it is way too painful and makes me exhausted. My arms just don’t have strength anymore. My grip is very weak and so is my strength, so I don’t carry many things anymore especially if it’s heavy. I “fail” the strength tests during physical exams. After being out in the sun my face usually breaks out in a rash that can hurt it more just feels really hot. I am doing so much better at remembering sunscreen even on a cloudy day so it is getting better. I deal with on and off stomach pain but that seems to be getting a little better. My head also itches a lot and that is due to fibromyalgia and also losing my hair, it itches really bad right before a lot falls out. I also can’t stand a lot due to my POTS. Which stands for Postural Orthostatic Tachycardia Syndrome say that 5 times fast. It’s a part of Dysautonomia. October is actually Dysautonomia awareness month so I will be doing a blog about that later this month. This makes standing very difficult for me also which is another reason my walking has become limited and why I rely on a wheelchair. It causes me to be really dizzy and I can fall or pass out due to the rapid increase of heart rate upon standing. My body also has a horrible time regulating temperature in combination with POTS and Fibro. My one doctor looked at mom and said sorry but she has and needs complete control of the temperature in the house especially in the summer 😂😅. I get sick literally if I am too hot. I am normally cold or hot there isn’t really an in between anymore or a just right. I also have Raynauds Disease click the link to learn more but basically it is when I touch something cold or my hands get cold they turn blue then white then back to normal color. It is really painful. I have it in my hands and feet. My hands are more sensitive. So summer time is fun when I need it to be cold but my hands or feet freak out because its too cold for my fingers and feet. I also deal with migraines more in the winter. Weather changes play a huge role in flare-ups especially snow and thunderstorms when a “system” moves in my pain changes. I also am constantly dizzy and nauseous so thank goodness for sea sick bands because those little wrist bands help me so much! I feel like I am rambling but it’s hard to keep track of all my symptoms and aches and pains and I am sure I am probably forgetting some but I think I’m just going to stop there.
Now, the mental “pain” I experience can be hard. I have had to shift a lot of my future dreams and goals. I used to dream of having kids and getting married but it is just really hard to even picture or imagine that when I can’t even take care of myself. I also had dreams of going on trips with my best friend, we talked about it in high school and how we would travel around some after college but again that doesn’t really work out when I can’t do anything by myself and traveling takes a huge toll on my body. I can’t drive anymore which takes a lot of independence away. I mean, I miss just being able to hop in a vehicle and drive to Target 😍 or go meet friends. My career dream also had to change. I used to dream of being a teacher but now I can’t even work full days. I love my job though and it’s the perfect thing for me to do. I still get to be in a school and with kids and work 3 days which is what my body needs. I tell myself everyday I go to work how lucky and blessed I am that this dream actually all worked out and I found the perfect job. I honestly couldn’t picture me anywhere else or doing a different job. I miss being able to walk and run. I miss being able to work out! In fact sometimes during my dreams I dream that I am running or walking and when I wake up it takes me a few minutes to realize that was a dream. That is hard and is definitely the hardest thing mentally for me that I can’t walk like I want and that my stamina is so bad. I have thoughts that I let my friends and family down because I am not able to do things and help like I want to, but thankfully my friends and family are so supportive that as soon as I have those thoughts they quickly help me squash them. It’s hard sometimes to get on social media and see people have a “normal” life but I snap out of it because I am truly happy for them and I wouldn’t wish this pain or life on anyone. Somedays I just stay off social media if I am having a rough day. My doctor prescribed Wellbutrin and when I got the right dosage and I got put on anxiety meds I felt so much better mentally. I realize how important it is to take medicine. I would have times where I would get overwhelmed with all the medicine I take so I would skip a day or 2 on certain meds and it was not a good choice, and I quickly realized I needed them. The other thing that is mentally really hard on my body is when I found Dad. Many of my doctors say that it was very traumatic and that I could also be experiencing physiological trauma and I experience PTSD. I had some health issues before Dad died, but then after he died my doctors say my body just had enough and that’s when everything started happening. I often have flashbacks of that awful November 8th day. I wish so much I could forget that image in my head. I just miss Dad because I know he would have helped me so much through all of this.
I also sometimes get into the mental place that maybe I am crazy and I am not this sick, or that I caused this because my body couldn’t fight the cellulitis like it should have. My doctors have told me multiple times I am not crazy and that something else is going on. Sometimes when I have these thoughts I just go into my patient portal and look at my blood work and it reminds me I did not cause this and I am not crazy. I have proof that more is wrong than the Fibromyalgia and my body isn’t normal. The fatigue I experience is also really hard on me mentally. I get frustrated that I get tired so easily and that I am constantly tired. I wish I had so much more energy.
People often ask me how I stay so positive if I feel like crap. I remember the night in the hospital when everything changed. I woke up the next day pain everywhere in my muscles and joints and I had a rash on my face and I thought I was getting the worst flu aches I ever had. The doctor came in and did a nose swab to test for all kinds of things and the flu and everything came back negative. So flash forward a few days later the doctor that discharged me came in and said this looks like lupus, and she turned to her interns and told them this is what lupus looks like. She told me after I get discharged from the hospital I needed to see my family doctor to get tested. My head was spinning I was just in the hospital for cellulitis and now I am leaving with a body that hurts and possibly having an auto immune disease I know almost nothing about except what the doctor told me. Looking back it’s crazy that in that moment, my life as I knew it, was going to be completely different. I remember the first few months I thought the pain was awful and it kept getting worse. I thought how am I going to keep moving and working and living. Little by little everyday I just kept plugging away. I reminded myself that this life is just temporary. Then I came across this quote one day “You either get bitter or you get better. It’s that simple. You either take what has been dealt to you and allow it to make you a better person, or you allow it to tear you down. The choice does not belong to fate, it belongs to you.” – Josh Shipp. In that moment I knew I wasn’t going to let this pain stop me from living my life and having as much fun as I could. If I was going to be in this much pain I was not going to be on the couch everyday. I am learning to live and cope with it and still trying to do things. Think of it like this you get the flu aches it keeps you down for a couple days then you start feeling better and go on with life. When I got the “flu” aches I was down for awhile then many days passed and I was getting bored I had to get out. If you had the “flu” aches every single day wouldn’t you want to get out and not be bound inside? That’s kind of what happened. You start learning to live with it and you just keep moving on minute by minute. I can’t wait to soon move into our new house where I will gain some independence back. That will help so much physically and mentally. Thank you for taking the time to read this blog, not for sympathy, but more for understanding and awareness of what people are going through.
“He will wipe every tear from their eyes. There will be no more death’ or mourning or crying or pain, for the old order of things has passed away.” -Revelation 21:4
“The pain that you’ve been feeling, can’t compare to the joy that’s coming.” -Romans 8:18