Monday, July 13, 2015

Fibro Sufferers Have Many Titles

My normal pain day is having chronic pain, from head to toe, due to Fibromyalgia, a head injury from 20 years ago, and a long list of medical problems that even Santa Claus wouldn't be able to remember. With the crazy health issues I have, you may see me do crazy things or talk about weird sensations my body is doing due to Fibromyalgia (Fibro) or another medial issue.  We, people with Fibro, have many titles due to all the symptoms or crazy sensations that we endure. Here is some of what we go through (yes, I did say some, there is a whole lot more of what we deal with):


FURNITURE TESTER. Sitting on a chair or couch is hard because the cushion on the furniture can cause excruciating pain when pressing against the body.  Sometimes I prefer to sit on the floor. For some reason, it's more comfortable, but yet it still hurts. If that makes sense, I don't  know.  I do use cushions to sit on the floor. All I know is that, at times, it is more comfortable than sitting on a chair or a couch. I know it sounds strange. But this is my life. Wooden chairs without padding are the worst. It can shoot pain in places I didn't know I had.


FASHION UN-DESIGNER. There is the lovely added feature of things touching my body causing even more pain. Wearing certain clothes, shoes, jewelry, etc.. can cause pain. Fibro has made me tone down on my appearance.  Now, I tend to wear comfy clothes and supported tennis shoes or sandals. The fancier the clothing I wear, the more pain it causes.  So loose fitting clothes and pj's are a Fibro persons best friend. I didn't know how many comfy clothes I had until I was doing laundry one day. That is when it hit me.  Wow,  I sure under-dress nowadays.

Oh yes, because I have a hard time sleeping, have temperature and hearing sensitivities, and have tremendous pain, I watch my church LIVE on my Roku (where the internet is connected to my TV).  I have the option of  pajama attire for church which is great for me since I have to drag my body from my bed to the living room.  I do desire to go to an actual building and attend the services, but it is not feasible at this time in my life. I am grateful that my church has the benefit of live-streaming and they just started a new Sunday night service LIVE,  so I get to watch two different services on Sundays from my church. It helps make me feel like I am a part of my church since I can't get out much. I guess you can say, my church has the best parking and the "come as you are" motto in tack.


SPECIAL TECHNIQUE HAIR DRESSER. My hair hurts? Yes, you read it right. There are times that it feels like every hair strand, on my head, hurts.  I don't know what causes that sensation, and people may not understand it, unless they experience it themselves.  Even when I go to bed at night, I'm more aware of my hair. I have to place it a certain way when I lean on it against my pillow,  because if I don't, my hair will hurt and the pain radiates to my head and neck. It sounds funny, yet it is a constant pain. I even have to be careful how I place a scrunchie, bobby pin, or rubber-band in my hair.


MAKEUP UNDER-ARTIST. Applying eye makeup is more of a challenge this year.  I started experiencing pain when I would apply eye shadow to my eye lids. I never even thought that eye lids could ever be in pain, until recently. Yes,  I know all this sounds like I may be making things up, but I'm not.  Sometimes I have to resort to just smearing eye powder on my eyelids with my finger because the eye applicator causes a burning sensation.  


EXTREME SENSATIONALIST. The issue of pain sensation on the tips of fingers causes texting or typing, to be hard, at times. Now, they have the swipe features on the cell phones and electronic tablets which is very helpful.  An average person probably doesn't think about their skin that much. A Fibro sufferer is usually more aware of their skin.  It hurts a lot; it itches. We can't take our skin off to relieve the crazy, painful, yet annoying sensations.  A hug or cuddling can cause excruciating pain at times. Clothes or a blanket may make the skin feel irritated. Sitting on a chair can shoot pain down the back and bottom. Sometimes when I sit or lay on the carpet, I get a burning sensation on my skin like rug burns.  I didn't do anything to cause the rug burn feeling; it's just the way it feels. Yet sitting on the floor, at times, is more comfortable than sitting on furniture. So I guess you can say I'm not comfortable in my own skin. 


HYPERSENSITIVE HEAD BANG-ER. I wear ear plus daily because my ears are really sensitive due to higher pitch noises or sounds.  Some people wear them because they are sensitive to lower pitch sounds.  I guess you can say that concerts, movie theaters, baseball parks, race tracks, stadiums, and even church services are really hard for me to attend. You may see me at the grocery store or taking a walk downtown instead of going to other events or even church, but I've learned what I can and can't do. I found new ways to do things like attending church online which connects to my TV. If the music (or preaching) gets too loud for me, it is awesome to have the remote control handy. The days that I do go to a place that's too loud for me, I have to wear thicker ear plugs and still the next few days my headache will increase and may turn into a migraine-like headache.  And that is with wearing ear plugs; the pain is way worse when I don't wear earplugs.

I have learned to keep the TV remote control close by me, not because I like to hog the TV remote, but because I need the volume feature.  I may not realize it, but I might have the TV. or cell phone turned up higher than normal because I am trying to hear the people talk. Yet it is the higher pitch sounds that hurt my ears, so I have to turn the volume down, during those times. I find that the volume is going up and down a lot on my TV. (lol)  Certain sounds especially  musical instruments can cause an immediate sharp pain in my head.  All TV programs and commercials have music or other sounds that I have to turn down the volume to, yet I have to turn the volume back up to hear the people talk. I  hear really well, yet I don't always decipher what people say.  


FUTURE EXTERMINATOR.  The feeling of bugs crawling all over and then the skin itches everywhere.  Nothing seems to relieve the itch. Applying  tons of topical  creams doesn't work most of the time.


HYPERSENSITIVE WEATHERMAN/WOMAN. People with Fibro tend to know if the weather is about to change.  I usually know when it is about to rain or if there is any moisture in the air because my body will be in intense pain from head to toe.  If the barometric pressure or temperature changes,  my body feels that too.  We also deal with hot or cold sensitivities.  If it's hot, I turn on the air conditioner yet you may find me put on a sweater.  People with Fibro tend to be temperature sensitive. When it is hot, I have to turn on the air conditioner. Yet I throw on a light blanket or sweater because when the air from the air conditioner or fan hits my skin, my body starts to hurt more, especially my skin.

Due to Fibro, I get over-heated easily where I feel like I am going to pass out so I carry Gatorade packets, along with water, with me when I go out.  Then recently my body started the change, yes that dreaded peri-menopause I have heard about. The hot flashes and night sweats actually made my temperature sensitivity even worse.  Even when I was in an air conditioned room, my vision would fade and turn black, was lightheaded, and felt like I was about to pass out. I ended up going to my doctor. She ran some tests to be on the safe side yet they came out normal.  She said I'm just going through the change and I need electrolytes to balance my body due to sweating more. I don't need added symptoms, oh well, life goes on....She told me to drink Smart water, with electrolytes, to help my body out. Thankfully, it has been helping. (Please tell me that other women have had a bad reaction to hot flashes besides having to turn on the air conditioner or stick your head in the freezer. Lol) I  just hope the Smart water makes me a smarter person.

So now I have to keep Smart Water stocked. I have also been using Gatorade because it is cheaper, but I dilute it because it has a lot of sugar. So if you see me carrying Gatorade or reaching for some Smart water, now you know. I am just overly sensitive to hot temperatures including the ones in my own body. Crazy me....too funny.

HEARTBEAT NAVIGATOR ASSISTANT. With all that I go through, God is very important in my life.  Some people may think I shouldn't believe in a God who hasn't healed me of all these illnesses, disease, symptoms, pain, or crazy sensations. Yet God  uses it all to keep me close to His heartbeat and to help me encourage others who are going through it too. 

If you (or a loved one) are going through these weird sensations, extreme pain all over, or other symptoms, you are not going crazy. It is not all in your head, and you are not alone... I have been dealing with extreme pain and added symptoms, which includes Fibro for the last 20 years. I lead a Fibromyalgia group called "Fibromyalgia: Fibro Brothers and Sisters" to help encourage others who are dealing with Fibro.  It's good to be a part of a support group so you know you are not alone. 
Here is the Fibro support group: 

and here is the page where I give tips on managing pain: 


We all could use more people to understand what we deal with on a regular basis.