Tuesday, May 22, 2012

The Silent Monster

Well, it has been a long time since my last post.  I do apologize.  My life has been taken over by a monster that can creep up on you at any time and, once in its control, you must just wait for it to release you.  This silent monster is fibromyalgia.

Those of us who have fibromyalgia  look like ordinary people. No scars or identifying marks.  We look NORMAL, but we are not.  A simple act of dusting or hovering, watering the yard, shopping for groceries, can leave us so tired we need to sleep for days.  Going to work for 8-9 hours daily is something that we may not be able to do.  Fibro can change your life.  If has for me.

How do you know if you have fibro?  Most doctors will ask you questions concerning your daily routine, if you work, how long, etc.  They will ask questions about your eating habits and sleeping habits.  They will do a  pressure point test on 18 spots on your body.  These 18 points will probably be very sensitive to touch.

For many, medicine and diet and exercise will help.  Avoiding stress will help.  I do not take the normal meds of fibro patients, as I have bad reactions.  I take a med that had a totally different use in the 60's.  This is taken at night, as it helps me sleep and keeps the pain tolerable.

Not every one with fibro will have the same symptoms.  I can feel when a 'flare' is going to happen.  I feel like I am on fire, actual fire.  The way I described it to my doctor was dousing myself in petrol and lighting a match.  After this, I will have a bad 'flare' within 12 hours.  A 'flare' is also different for everyone.  I get the 'burning', cannot get enough sleep, am restless and walk around in a fog (referred to as 'fibro fog').

In the last month or so, I have had several of these 'flares'.  One was so bad that someone had to stay with me, as I almost could not walk.  I did not have the strength.

Stress, for me, is normally what sets it off.  The last several months have been hard on me.  Things have happened that I never thought would.  I let this eat me up inside, and that's what set my 'flares' off.  Trying to be  'stress-free' is very hard.

Why do people get fibromyalgia?  There is no answer for that.  Doctors have thought/said it's inherited, others have said a reaction to another disease.  I have no answer either.  I know that no one on either side of my biological family has had this diagnosed.  I do know that my 20 year-old daughter has just found out she has this.  She is not on meds for it, as she is having a baby in late July.  I suspect my 12 year old daughter also has it.

For me, fibro started when my arthritis  was getting bad.  I also was diagnosed with lupus around the same time.  Were these factors?  No one will probably ever know.

The month of May was labeled National Fibromyalgia/Chronic Fatigue Syndrome Month.  If you have or know someone who has this, were purple.  I don't have a lot of purple clothes, but I have kept my nails polished with purple!  I have seen t-shirts with slogans on them, wrist bands, bumper stickers, etc.

I know it is at the end of May, but I think we shouldn't stop remembering people that have this.  We really look just like everyone else.  Most of us put on a 'happy face' and continue with everyday life.  I know I do, far too often.

So, if you know anyone with this disease, wear purple for them.  If you have it yourself, know that you aren't alone.  There are many of us that understand how you feel and how your life has changed.

Have a wonderful day,



  1. Hey Deb, this is an excellent article on fibromyalgia. I'm going to post a link on my blog. We have to spread the word on this. There needs to be more research until someone finds a cause, cure, or at least a more effective treatment.
    I know that feeling of being on fire. And all the other things you mentioned. I have not yet come to the point where I couldn't walk, but some days I can barely drag around, holding onto furniture, etc. I think my main problem is that I try to push through the flares. That time in Feb. when I had the heart scare and stayed in the hospital for two days, in bed, was an eye opener. For a couple of weeks afterward, I felt better than I have in years. I told myself then that when I feel a big one coming on, I'm going to bed. But I don't. There's always something that needs doing.
    God bless you, sister. I pray that today is a good day for you.

    1. I think my biggest fear is that I won't be able to properly be a mom. Even with Laura being almost 13, I still panic about that. The day she stayed home from school when I was having a bad flare made me feel so guilty. Which, of course, didn't help!
      Thanks again for talking about that post.

  2. Hi Deb, I know what you mean about looking normal on the outside but being far from normal on the inside - all without our vote or consent, too! I have had lupus for 12 years and can no longer work as a nurse, a career I had for 30 years and that I love.

    My doctor told me that lupus and fibro. often go hand in hand. I have tender pressure points that he called mild fibro. but since there is horrid fatigue associated with lupus, I am at a loss to say what symptom is from which disease. I realize it doesn't really matter, because it's an totally annoying huge bummer.

    If you haven't read this, it's a keeper. It's called the Spoon Theory ...

    I understand! Hugs!

    1. Thank you so much for letting me know about the Spoon Theory. I read it to my older daughter, whom I and my youngest live with. She had tears in her eyes by the end.
      I think I have probably have had fibro for 20-21 years. I was diagnosed with Lupus when I was 20. The doctor told me to have a nice life, which would be about 5 years, at the most. I had 4 girls then, one just 6 months old. I think I bet those odds!
      Have a great day!

  3. A friend suggested I read your Post. I'm so glad she did. I've just recently been diagnos with Fibro. So much I don't understand, but I'm learning from others that have the monster. I'm so thankful for all of you sharing your symptoms, aches, and what makes it tolerable. Two women that read a post of mine invited me to email them when I'm down, depressed, in pain from this monster. I've been so thankful for those kind women. So many people just don't get it, so you can't really share it with most people. I may not look sick, but I am. The pain makes me limp, not be able to stand on some days. So every chance I get, when someone asks what's wrong, I try to share what's going on. They seem to listen when they can 'see' the problems it causes. I've just started Lyrca. When they say take it with food, they mean that. Now I take it WHILE eating. No nausea that way. Thank you for sharing your life with this monster. That's a great name for it. I hope I haven't gone on too long.... PJ

    1. I'm glad you read my post. The biggest thing about having an 'invisible' disease is making others understand what is happening. All the talking we can do sometimes doesn't help. How doing simple things, like dressing or lifting a cup of tea, can be so hard and painful for us, is hard to understand. It gets very depressing. I have found that doing something I love helps. For me, crocheting, knitting, sewing can help me focus on something else. When I focus on the pain, it seems to get overwhelming.
      Please, write me when you feel depressed or are having a bad day. I will listen!
      Oh, and no comment can be 'too long'!

  4. Hi, Deb! I read Susan's blog (see her comment) and came to 'visit' you. I also have Lupus & its 'shadow', Fibro. Hateful, hateful pair, these two. But it is what it is, huh? Sadly, we can't wish them away, cuss them away (oh, how I've TRIED that!) or cry them away. People - mostly those who've never dealt with the daily 'surprises' Lupus &/or Fibro bring, 'advise' me to 'just take a deep breath and keep going.' Sometimes just the effort to BREATHE hurts. But we are HERE and we are not going to allow the monster to eat us. Your post is so well-written and I know you are going to have a lot of new readers who will truly appreciate your shared experiences! I know I'M one of those!

    1. So you've tried to cuss them away, too? I think I've made up new words and it still hasn't help! You're right when you say people tell you to 'suck it up'. My ex-husband would get so angry with me. Would tell me I was making it up. Why would anyone want to make up something so painful?
      I'm glad you read the posting. I am truly glad you are 'coming back'! Any time you want to 'chat', please write me!