Fibromyalgia

[GloriaSilverman]

I also have fibro. the best thing that helps me is going in the pool I walk and exercise in the water and make me feel so much better.
I hope you all are doing better. Today is my first day and I hope it will help me. GG

[GloriaSilverman]

If you can get into a pool it would help a lot. Good Luck GG

[Spongy]

GloriaSilverman,

Wishing you the best with your treatments for fibro. The pool therapy did not work for me. If it helps you, 🙂

[Moominmama]

Thanks everybody for your suggestions and support. I cannot do much exercise due to the extreme headaches I get (almost daily at the moment) and the nausea and dizziness I get does not help. The nortripyline and gabapentin I am on helps but they also make me more lethargic and ‘doped’. But I am trying to get into my local hydrotherapy pool which I am looking forward to.
Its really good to know there are people out there in the same circumstance as I am so you all ‘get’ why we cant do things like others can. Normal people find it hard to understand why we cant just go out for a walk or a run. I find it extrmemely friustrating trying to explain why as all I get are blank stares.

Anyway, I send you lots of love and gentle hugs for the day xxxxxxxxxxxxxxxxx

[reinvent]

Hi Moominmama, I also have fibro and am a RN (retired because of fibro and back problems). I was on gabepentin/neurontin 4 years ago and gained 30 pounds in three months, so I refused to take it anymore. Recently I started on a good med that blocks the nerve pathways to the brain.
I understand what you are going through with exerercise because of increased pain and fatique. I am learning to pace myself to keep symptoms under control. It is hard somedays because things don’t stand still just because I have fibro, but I have to remember to remind myself to take a few steps back and quit trying to do more or please others. Take care of you! Hugs xoxox

[Moominmama]

reinvent – I have tried many meds before I got to gabapentin and am a little begrudged to change it as it seems to fit me just the weight issue is not great. But would still be inetrested to know which med you are on now, after changing from gagapentin?

xxx

[Spongy]

Have you tried taking Lamotrigine?

[ngoding]

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

[santeelady]

I have fibromyalgia too but I’m doing very well now. I went through 5 years of aches, stiffness in the joints, swelling, and pain. I ended up having seen 9 doctors before receiving a diagnosis. I was given prescriptions of various medications to try. Lyrica was the worst for me! The muscle relaxant helped me to sleep and I took that for some time. Now, I take nothing. Aqua physical therapy helped a lot. I had to see a pain management doctor who shot steroids into my back; would get spasms. I got an epidural block (series of 3) to stop the pain. I had to deal with fatigue syndrome. At times I’d feel really good, but later became extremely exhausted. I’ve gotten much better. It helps to do everything in moderation. You are in my prayers.

[Moominmama]

Bless you Santeelady. I have aqua therapy on my list to do next as I think I could cope with doing this sort of exercise.

I would just like to say, my heart goes out to all of you ladies. We all struggle with this condition and find our own way of coping and our own meds that help us and different medical people who decide on the best way of dealing with a condition that is ‘invisible’ to those who dont have it.
But, whilst we wouldnt wish this condition on anyone, I feel lucky knowing there are others who have this condition, knowing we are not alone in our struggles. I love all of you ladies, each one of you and I send you all gentle hugs and kises, wherever you are. xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

[santeelady]

Thank you Moominmama. It sounds like many of us have more than weight concerns. Our health has been affected in some way. We can share our experiences and keep each other in prayer as we struggle to make things better. Hugs to all of you too!

[Deborahjjhayes]

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.

[Moominmama]

Deborah,

Brilliant speech, honey. I will borrow it for my own use if you dont mind. Pretty much says it all doesnt it. Do you feel better for saying that. I bet it has worn you out somewhat?

Pace yourself honey. You are in my thoughts. Hugs xxxxxxxxxx

[Ritabj1723]

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.

[Deborahjjhayes]

It really wasn’t a speech… It is my own private walk with fibromyalgia that I wrote in my blog debbiesjourneytohealthandhope.com I shared it here because it seemed appropriate and I thought it might just help someone help their family understand better. 😛

[Author]

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