Monday, September 22, 2014

Fibromyalgia


I started experiencing fibromyalgia symptoms around the age of 19.  Of course I didn't know what it was back then.  I remember asking a friend of mine who had arthritis about her symptoms because I wondered if that's what I had.  My body hurt a lot, especially when it was cold.  I had been tired my whole life and I just didn't feel "right".  As I got older my symptoms worsened.  In my mid-20s I was in visiting the doctor for blood tests.  They were trying to figure out what was wrong with me.  They tested for the usual suspects like thyroid problems and diabetes, but of course I was told, "Good news!  Everything was fine!". or "it's just stress"  I didn't feel fine and I although I've always lived a chaotic life I didn't think stress was the only culprit.

The older I got the worse I felt.  Eventually I decided to stop the mentality of "it's just how my body works" and start doing some research myself on what was going on.  Every road led to fibromyalgia.

These are the symptoms that I personally deal with on a daily or almost daily basis:

Fatigue- I can not remember a time in my entire life when I didn't feel exhausted.  It doesn't matter how much sleep I get.  I go to bed tired, I wake up tired and I'm tired all day.

Headaches- I deal with headaches and migraines on a regular basis.  Recently I had an extremely severe headache for three weeks straight accompanied by dizziness, confusion and blurred vision.  Blood tests and a CT Scan showed I was "fine".  Of course the doctor wanted to run more tests, but  I'm sure it was an extreme fibromyalgia flare-up.  I also get lightheaded and dizzy very easily.  Things like blowing my nose or going to the bathroom can sometimes make the room spin.

Pain-  I have so much pain!  Every day!  I have general all over pain.  I have joint pain.  I have hip pain.  I have very painful pressure points on my body.  Having a pressure point bumped or poked can have me bent over in pain.  Even the slightest touch on a pressure point is painful.  I have a heightened sense of pain.  Stubbing my toe or knocking into something can hurt so bad I almost throw up. I have head pain.  I have neck pain.  I have pain when I sleep and when I'm awake. The plus side of all the pain is that because I'm always in pain I have a high pain tolerance compared to most people.  Pain is my normal.

Stiffness- When I first wake up I walk like I'm 90.  I'm stiff and sore and it takes me about 30 minutes before I can walk freely.  I also have stiffness at the end of the day, especially if I was on my feet a lot.  My arms fall asleep a lot even if I'm moving around.

Sleep issues-  I love sleep so much, but I have a hard time getting restful sleep.  I need a minimum of 7-8 hours to even be able to function without massive headaches and sickness the next day, but it's hard for that 7-8 hours to be restful.  I move around a lot in my sleep.  I have stressful dreams.  I wake up multiple times in the night to go the bathroom.  I wake up in the night with my arm asleep or my neck hurting or my ear asleep.  I get night sweats.

Depression-  This is one I try to be very careful with.  Depression and mental illnesses run in my family.  I am VERY prone to depression, but I monitor it closely and try to keep it under control.  I do have times where I feel depressed, but I accept it, let myself pity party for a bit and then move on.  Permanent depression would be very easy for me to slip into, but it's the symptom I hate the most so I try to really keep on top of it.

It all sounds like barrels of fun doesn't it?  I pretty much feel blah all the time.

Some things that make my fibromyalgia symptons worse are: 

-Weather, season or temperature changes
-Stress & worry
-Overdoing it
-Not getting enough sleep
-Not sleeping in my own bed or with my own pillows
-Being on my feet too much
-Being sick
-Putting on weight

Life is life.  You can't avoid stress.  You obviously can't avoid the weather or the seasons.  I'm a single mom with a busy schedule.  For the most part I just go about my busy days, suck it up and just pretend I'm fine.

Here are a few things I do to try and lessen my symptoms:

-Use a heating pad on painful areas of my body, especially when it's colder weather bringing about the extra pain

-Drink LOTS of water & try to avoid drinking soda pop (SO. HARD. FOR. ME.)

-Have someone LIGHTLY rub my back, neck and other painful areas.  Any kind of deep tissue massage or trying to "work out the knots" leaves me very sick to my stomach, achy and dizzy for a full day.  When someone rubs my body they are always shocked at how many knots I have.  I'm pretty much covered with knots on every inch and the natural reaction is to want to work them out, but although it feels good (well, painful good) while it's happening I always feel way worse the next day and all the knots are back in like an hour so I tell people to not try to "fix" my knots.

-Swim in a pool or soak in a hot tub or especially hot springs

-Get to bed at a reasonable time and wear a sleep eye mask.  The mask provides darkness and pressure on my eyes that helps falling asleep a lot easier.  I still wake up a lot in the night, but when I do the mask helps me get right back to sleep.

-Avoid extra stress.  Sometimes this is unavoidable, but the older I get and the worse my symptoms get the easier it is to tell people "no".

-Get light exercise, like walking, but don't overdo it.

-Never ever put artificial sweeteners in my body.  When I was a diet drink fan my symptoms were so much worse!

-REST when I'm experiencing a major flare-up.  Some days it's not possible and I just push through, but I always regret it the next day when I'm twice as bad.  

-When I'm having a really busy day I try to make a conscious effort to sit down as much as possible and either get to bed extra early to unwind or lay down for 20 minutes during the day a couple of times.  It's the long crazy days that usually get me so I have to be aware of it and take breaks.

-Be honest with my family and friends so they know if I'm having a bad day so they can be considerate of the fact that I may not be up to whatever it is they want me to do. 

I know I'm not sharing anything new or super insightful, but I wanted to share my experiences with this very painful and very annoying disorder.  My biggest fear is that it will eventually take over my life and I won't be able to do the things I love.

I have friends with fibromyalgia who medicate, but that's not me.  I hate medications and don't want to become a slave to them.  I have friends with fibromyalgia who have gone to homeopathic doctors and ended up with stacks of foods and products to avoid.  I don't want that either.  If I went that route I MAY end up feeling better, but what would my quality of life be avoiding so many things?  I'm a cook.  I'm a party thrower.  I'm a social butterfly.  I believe in eating balanced, but at this point in my life there is no way I'm going to do a complete overhaul of my eating habits and avoid everything that is "bad" for me.   I'm 35 and feel 80... maybe when I'm 55 and feel 100 it would be worth it... haha.

It's insane how many people suffer from fibromyalgia.  Maybe someday they find a cure, but for now I'll just keep plugging along and do the best I can with what I was given!

5 comments:

Bridget said...

Oh girl! I'm so sorry! Big hugs!!

Audra said...

It's the absolute worst. I have Fibromyalgia and connective tissue disease as well as poly arthritis. I am 47 and can no longer work because of my autoimmune illnesses. I went from having a huge social life and great job to not working and having a life that fits on the head of a pin. Sigh. I too fight depression and will not let it get me in its grasp and hold me there. Proud of you for keeping up the fight, you are an inspiration for all those out there suffering who think they can't enjoy their life. It's just a new set of norms.

Paula Duncan said...

Thank you for sharing. I have been struggling with years myself thinking because I am overweight, over stressed, not enough sleep, I played too hard and now my body is paying for it only to be diagnosed a few years ago with Fibromyalgia. However I lost my insurance right after so I never was able to follow up. As you describe how you feel, I am right there. Some days are good, some are bad, and then there are the days I am so dizzy I can hardly get out of bed but have to work days. Thank you so much for helping me understand but also I too don't like to medicate. I take over the counter when I have to but want to stay away from the heavier stuff. Hang in there and know your words made a difference to me today!

Susan Morgan said...

Wow, as I'm catching up on your blogs...the next in line was this one. Hang in there. I'm 58, and finally diagnosed in 1992, in my early thirties, and my prime. It was not totally understood back then, and Dr.'s/family/friends, even less sympathetic at times. It was like going 90 MPH, and then running into a brick wall. You summed up so many of the symptoms very well. I was actually at my Dr.'s this morning. You may not want to hear it, but diet really does help. I had to cut out my beloved Pepsi's, as I had Vertigo, for two months straight. I would highly recommend Allergy Testing. Sugar is another culprit. My head is spinning today from lack of sleep. I have had a sum total of 4 hours a night, total, sometimes less,for a month now, if that. As I told the Dr. "Uncle". The less sleep I get, the more pain I'm in. The more pain I'm in, the less sleep I get! It's a vicious cycle that must be broken. Sleep will NOT cure it, but it certainly helps. I now have 2 medications again, that I have been on for years...but cut out months ago. It does not mean that I'm weak, as I'd rather not put any drugs into my body. It was hard to reconcile myself to the fact, that I HAVE to take something to help me sleep. I'm looking forward to tonight. One night's sleep will not help much for the past month....but I know a week's worth will help immensely. :-)

Susan Morgan said...

God bless you, Sweetie, and all of those suffering from this horrid disease. I was also diagnosed with CFS which years ago was almost synonymous with Fibromyalgia, as I later learned... Thank God, the days are over where Doctors can yell, scream at you, throw things at you, because THEY don't know what you have, and I forgave them eventually for their own frustration. As for Depression, it was at it's worst in the first 5 years. One Doctor insisted that it was Depression causing "all of my symptoms". I remember telling him, fighting back tears....."Wouldn't YOU be depressed, if all of a sudden your life was essentially gone?" "NO, I am depressed because of this illness, whatever I have! It is conditional. Take away this illness, and I won't be Depressed anymore!" Wow, just remembering that, I am proud of myself that I recognized while being very depressed, the root of my depression. And that I fought against the abusive Doctors of my day.