Fibromyalgia

I think Gabapentin is the one that helps me the most … I can really feel the difference shen I forget to take it. also this plan, eating with no chemicals has helped so much@@

Hi I just joined TDC. I have fibromyalgia too. I have been to a dozen doctors, drugs, therapy, and diets. Nothing has helped me, not even a little. I hope getting the extra weight off might give me some relief. I’m glad that fibromyalgia is discussed here. It helps to have a place and people to talk to. One hour at a time. Soft hugs to tall.

I have fibromyalgia and deal with all the ramifications daily.. That is the only way I can handle it… One day at a time. Some may think this part I am going to share next is too long… However , if they do they have never had fibro! 😛 “You Don’t Look Sick !”

I just wrote this on my new blog. The title is “YOU DON’T LOOK SICK!” (the invisible illness- what it’s like in the life of someone dealing with fibromyalgia)

Powerful words to someone with an invisible illness, are ,”I believe you!” sometimes it’s easier to keep silent than to tell others how you feel. BECAUSE it hurts so badly when you come to know they CAN hear you but they DON’T understand. Everyone knows someone with an invisible illness. Someone who puts on a brave face. Whether it’s PTSD, Anxiety, Depression, Diabetes, Lupus, Fibromyalgia, MS, ME, AS, Arthritis, Cancer, Heart disease, ALS, Epilepsy, Autism, Alzheimer’s, and many others.

NEVER JUDGE WHAT YOU DO NOT UNDERSTAND.

Behind my smile is a hurting heart,

Behind my laugh I’m falling apart.

Look closely at me

And you will see,

The girl I am , isn’t me.

(unknown)

The whole year of the worst of the valley of sorrow, I knew I hurt physically. Pain in my legs, fatique, but I thought it was just stress. Then, I went to the doctor. Dr. Vas An Dani, the most compassionate of doctors, and an Arthritis specialist, rolled over closer to my chair, and looked in my eyes, and said, ” Tell me every symptom you are experiencing!”. Since he wasn’t writing it down, I said, well, are you sure?”

He said, “ALL of them!” Finally, someone who listened.

I said ,”Well, OK, then. Here we go. My bones hurt, my joints hurt, I have extreme itching, headaches, nerve flares like pin pricking, tingling, numbness, burning, unusual sweating, nausea, neck pain, sciatica, hip pain, shoulder pain, hot flashes and cold shivering, insomnia, debilitating fatigue, falling, restless legs, hypersensitivity to touch in what seems like hot spots, brain fog, and anemia.”

With a twinkle in his eye, he teased, “Is that ALL? I just want you to know it’s not just in your head.!”

Laughingly I replied , “I think that about covers it!” Thinking to myself, ” Oh my Gosh, he believes me!”

Standing up he told me he was going to touch certain spots on my body to see how I reacted. Getting up on the exam table , he began poking me all over. On my shoulders, my neck, the side of my leg, so many, I could not count the number of times I wanted to scream when he poked. Looking at me again, he told me he could tell me exactly what was wrong with me.. but he wanted to run some tests to be sure. He tested me for Lyme’s disease, lupus, and many others, feeling like he took all my blood. When the tests came back, he called me in to tell me, I was borderline lupus, but he wanted to do one more test. After the test was done, I got the report stating I had fibromyalgia. In my heart I was afraid that is what it was but now it was confirmed. He would start me on Cymbalta, and Celebrex. Great, more meds. Then, he began to explain what to expect as it progressed. Now, I’m going to try to describe what it’s like living with an invisible illness, fibromyalgia.

LISTEN CAREFULLY, because someone you know and/or love feels what I am about to describe and hasn’t told you because they are afraid, and don’t want to be seen as a hypochondriac, or as complaining all the time. Have you ever had the flu for a year? Someone with fibro, has a hypersensitive central nervous system. There are pain trigger points all over the body. When touched , it feels as if little lightning bolts shoot through your body. Sometimes all at once, causing what we call a “fibro flare” It just happens to be more intense that day. It’s like a tree. It branches out throughout the entire body. Now, set those branches on fire! You have to be careful grabbing things. Sometimes I might get a shocking sensation shooting straight out of my wrists and hands that goes up through my arms as if an electric voltage switch had just been turned on high.

Going for several nights a week , without sleep makes anyone a tall 2 year old! You don’t know whether to take a nap or cry about being tired. You’ve never had fatigue until you have experienced the fatigue after you’ve taken a shower, and you need to rest. Fibromyalgia doesn’t work on a schedule, but responsibilities do. These conflicting realities are our silent pain. Excuse me for a minute, while I go lay on the floor! Sick girl problem # 45- feeling guilty about being sick and how it effects the ones we love. It feels like you are 85 in no time at all. Little things that shouldn’t be painful are excruciating. Plus most people develop fibromyalgia long before they should be experiencing age-related pain. Being in pain 24/7 takes it out of you not only physically but mentally and emotionally. It literally drags you down more and more. The worse thing is it’s never going away. NON-DISABLED people do not understand what it is like to struggle every day just to walk, bend over, get dressed, go shopping, or have fun. No one knows the daily struggle . No one knows how much it tears you up to put things on hold, or to cancel because the pain hit… again. The pain hit hard, very hard…So you lay in bed crying. People with chronic pain learn how to cope in silence. It’s extremely isolating. sometimes, it’s just too much. It’s a beautiful day and I’m inside.

Everyone sees who I appear to be,

But only a few, know the real me.

What I choose to show,

There’s so much behind this smile

You don’t even know.

unknown

Dude! You’re overmedicated, said no one with chronic pain, ever!

The Worse Things to Say to Someone With Silent Pain

1. You just need to give yourself a little kick in the rear.

2. No one said life was fair.

3. There’s a lot of people worse off than you.

4. Well, everyone gets depressed sometimes.

5. You need a _______.

6. Just try a little harder, it will get better.

7. You have no reason to feel that way, just look at all you have.

8. You’ll be OK. Just hang in there, it will pass.

9. You don’t like feeling this way, choose to change it!

10. I thought you were stronger than that.

11. Snap out of it, will you?

12. I’d go nuts if I had to just sit there all day!

13. You’re just a drama queen! Why does everything have to be life or death with you?

14. So, when are you getting better? (Ummm, never!)

15. Don’t you think you would feel better if you exercised? Just work on through it?

16. If you’d get more sleep, you’d feel better. (Ya think?)

17. If you’d just get out more you’d be happier.

18. Well, you are getting older.

19. You don’t look sick. (You don’t look stupid either, looks can be deceiving! 😛 )

I don’t want to be alone. I want to be left alone. Audrey Hepburn

Sometimes when I say, ” I’m OK ,” I want someone to look me in the eyes, hug me tight, and say, ” I know, you’re not”. Pain changes people. Excruciating, torturous, vice-like, raw, intense, thumping, grinding, stabbing, crippling, crushing, burning, shooting, electric-like, piercing, throbbing, pounding, stinging, itching. Wouldn’t you change a bit ,too?

endurance-(n) the power to withstand pain or hardships; the ability or strength to continue despite fatigue, stress, or other adverse conditions.

Sometimes the strongest people are the ones who love beyond all faults, cry behind closed doors, and fight battles no one knows about.

How are you doing? Oh, I’m great…

Adversity will come, grief is inevitable, and heartbreak happens but taking your life is never the answer. Love your family, choose life. There is always hope.

“But those who hope in the Lord will renew their strength. They will mount up will wings like eagles: they will run and not be weary, they will walk and not faint.” Isaiah 40:31

Having a bad day? Zephaniah 3 :17 Hope… He will quiet you with His love. He will watch over you with singing.

i am new and i have fibro it is nice to hear that other people struggle with the same things i do. i take amitriptlyn, baclofen and tramadol for the fibro this works really well for me mostly because i actually sleep now. i also have polly cystic ovaries g.u.r.d and heart disease im trying to get the weight off and get off of some of my meds. im a full time hairdresser and a mom i have 2 kids 7 & 10 so i dont have time to be sick, my faith and a postive attitude get me threw most days