Thread: Pain and Disappointment

I haven't been around here much (thanks for all the emails and concern). I have been just so ^%$# consumed with pain for the past few weeks. I am dealing with thyroid issues and Fibromyalgia-both have the same symptoms and pain, fibro has a few more like the trigger points and some other things.
My vent- It was bittersweet when they told me I had FM. I knew about the thyroid issue, my doctor and I had been going 'round and 'round about that for a year now. I have come to find out that I have probably been dealing with this in some form since I was very young. The main culprit to ALL of this, and all the things that have gone wrong with me for the past two years is...Fibromyalgia. It takes an averge of 5-7 years to get the proper diagnosis. And I have yet to see another specialist to learn more.
I thought I could handle the pain by being upbeat and staying positive-some days, like yesterday and today it's just impossible. I won't go into all the pain I feel and where. It's just unbearable some days and I refuse to just stay in bed! I won't be a victim to this. The "brain fog" gets increasingly annoying when I can't put a sentence together that makes sense.
The thing that hurts more than the physical pain is the pain that I feel when people think that I am making this up. Yeah, I LOVE to not work, stay in bed, miss my daughter's activities, and feel like I am invisible. Sure, that's the American Dream right?? I got tired of trying to defend myself to people who I thought were my friends, people that I trusted and cared about. I learned they were people that if I couldn't do anything for them, then they didn't want to be bothered. If I didn't go somewhere with them, because I just couldn't get the strength to go-they got upset. I don't need friends like that-also the ones that felt like I was lying, trying to get sympathy, whatever. I don't need them, but it hurts all the same to find that out about them.
I can't believe when I got admitted to the hospital, that people called me there...to see if I really was there! Now, two friends are falling over themselves tring to make it up to me...they thought that I just wanted attention. Yeah, rack about a huge medical bill, for attention?? To me, they can't do enough to take that away.
So, pain comes in forms, physical, mental and emotional. Right now I am feeling all them-and the pain is unbearable.
At first I was going to ask for some coping tips, something to ease the pain. I have taken Vicodin-it doesn't help when it's this extreme..
Instead, I am just going to ask you all, to stop pointing fingers of doubt at others. Yeah, I know there are people out there that for whatever reason try to make others feel sorry for them, but I am not one of them, take that for what's it's worth. But keep that in mind for others. A smile or a kind word can go a long way.

*Edited to add: for the friends that have stuck by me, encouraged me and was there to lend an ear or a shoulder-thank you! You will never know how much it means to me and have turned the dark days into lighter ones.

I'm so sorry you are going through this. My best friend has fibroidmyalgia, along with rheumatoid arthritis, and another neurological disease which I can't even remember.

She is in constant pain and I so understand what you are talking about. Unfortunately, she had to retire from teaching just a couple of years ago. She can barely get around as her feet and legs are so swollen.

She now lives on a pain medication which comes in "sucker" form. When she was started on it, it was with the understanding of both her physician and her family that this medication would be additive. It was her last resort.

I was worried because it seemed like she used these constantly until I found out that she was prescribed with THIRTY of these suckers EACH DAY!!! That's what she needs to just tolerate the agonizing pain.

I say this not to discourage you...but to let you know that I do understand what you are going through. I sincerely hope that you can fight this dreadful disease better than she has been able to.

It is real...as is the pain.

Sending you hugs and prayers.

Only the person in pain can determine just how bad it is at this moment.

Some hints that have helped me:
Go for a walk
Distract yourself with a hobby
Use heat or ice to the specific areas
Phone a friend to distract yourself
Pet your dog or cat
Take a warm or cool shower, or a tub bath
Lamaze breathing
Keep a journal for yourself
Prayer is a wonderful healer
Have your minister pray for specific healing.
I went with a neighborlady to a healing mass
and had an oil annointing at by her Priest.
(I'm not Catholic either)

Have you consulted a pain clinic?
Would a tens unit help?
Or some type of epidural injections?

So sorry you're having a rough go right now.
Warm Hugs,
Angie

I have myofacial pain sydrome which they say is a form of FM (from a car wreck 4 years ago.
Nothing seems to help but I am getting some relief.
I was put on a tens unit 3 years ago by my first pain dr. He also had me on morphine and oxycontin which made me sick more than I could stand flexrill, neurontin, and vicoden. When I lost my job I was force to go without treatment for a year. I finally went to a clinic but they only offered me "band-aids"
vicoden, lortabs, then methadone. When my dr left I was sent to UofL hospital pain management.
There I have received trigger point injections, I've had an epidural and will receive another one on the 23rd. I'm on zanaflex, methadone, elvil, neurontin. I also have two herniated disk and carpal tunnel in both wrist. I still use the tens and I also go to physical therapy. I also have to use heat or cold therapy and wear my hands in a brace and my left arm in a sling. I take up to 28 pills aday including allergy and migraine meds.

I know the feeling of everyone pointing and saying You're faking.
I would give anything to be back to work. Being without money sucks.
I'm tired of everyone saying there is light at the end of the tunnel and they know how I feel when they only thing they've had is a papercut or a stubbed toe.
I just want the pain to go away and I would like a smile eveynow and then letting me know they're behind me.

I know what it's like to be in pain 24/7. I don't know your pain so I can't say I know EXACTLY how you feel but I've been there.

((((hugs)))) Hopefully you will find something to ease the pain.

Big hugs to you LT!! I will continue to keep you in my thoughts and prayers.

Has anyone mentioned warm water aquatheraphy to you? That is supposed to be good for FM.

I know our patients with FM seem to get a lot from it. If you have a place that has a warm water pool, give it a try.

Edited to ask if anyone has ever heard of FM and sleep apnea being linked to each other? My cousin suffers from both.

(((((((LT))))))) Hang in there sweetie.

I have Fibro also and my pain dr. is talking about giving me 10 shots of the botox, I backed out the first time as it had me pretty scared. my dr. also has me on 8mg. of zanaflex a day. Please PM me if you would like to talk more about it I am not one to air my health on the interent..Iknow just what you are going thru.
Marcia

TO SIT HERE AND READ ABOUT EVERYONE THAT HAS ALL OF THE SAME ILLNESSES THAT I HAVE. THE PAIN IS THE WORST, THAT I HAVE EVER HAD, OTHER THEN A MIGRAIN HEADACHE, I GET THESE RALLY BAD. I GOT HURT ON MY JOB, MORE THEN A YEAR AGO. AND THEY WERE TRYING TO BLAME ALL OF MY PAIN ON FIBRO. I TOLD THEM NO I GOT HURT, I WORKED FOR THIS COMPANY FOR MORE THEN SIX MONTHS, I ALWAYS DID MY JOB, UNTIL I GOT HURT. WITH FIBRO THERE IS ALOT OF STREACHING, THAT YOU COULD DO BEFORE BUT, YOU CAN'T DO NOW WITHOUT PULLING OR STRAINING SOMETHING. PEOPLE, DON'T UNDERSTAND FIBRO, UNTIL YOU EXPLAIN IT TO THEM. YOU ALWAYS LOOK WELL, TO THEM, BUT, ONLY YOU KNOW YOU ARE IN ALL THIS PAIN, CAUSE THEY DON'T FEEL IT. WHEN, I READ WHAT EVERYONE WRITES ABOUT FIBR, AND ALL THE PAIN YOU ARE ALL IN, I WANT TO CRY, CAUSE I KNOW THE PAIN ALL TOOOO WELL. I'VE HAD THIS FOR MORE THEN 10 YEARS. AND THIS AIN'T NO PICNIC. HOPE YOU ALL FEEL BETTER.