| 1/15/2008 8:43:28 PM |
Fibromyalgia |
|
renonetwo
Waterville, ME
age: 57
|
I have had Fibromyalgia since 1996. If you don't know anything about it please go to fibrohugs.com and read the letter to normals, or I'll get you a link to another great site for fibro information. For far too long now people have had little knowledge about this disease, and for me and anyone else with fibro,? I have fibro, I am NOT fibro.
If anyone has questions feel free to contact me. I am in touch with groups all the time.
|
| 1/15/2008 8:57:47 PM |
Fibromyalgia |
|
renonetwo
Waterville, ME
age: 57
|
Home > Clothespin Challenge
Awareness At Your Fingertips
For the people in your life who don't understand your Fibromyalgia pain...
Invite them to take
The NFA Clothespin Challenge:
Here is how it works:
Place a clothespin on your finger
Set a timer for 30 minutes
See how long you can bear the pain. Did you leave the clothespin on for 15 minutes? 10? 5?
For each minute you adverted that clothespin pain, donate to the NFA-$20 a minute, $10 a minute, $5 a minute...
NOW. Imagine this pain forever... This should help you understand what it is like to live with constant pain - but people with FM can't just "remove" the pain the way you can remove that clothespin!
Interested in helping? Support the National Fibromyalgia Association. Every penny helps us support FM patients as they strive to manage their pain.
To make a donation for this campaign, click here.
Spread Awareness!
To view press release, click here.
"At work, I have a clothespin attached to me all the time; Working at a hospital facility gives me a chance to share with all types of clinical staff actually how much it hurts!"
- Susan
"I now have a better idea of what my daughter goes through, all day, everyday. I really had no idea. It has made a difference on how important it is to me to be accepting and supportive of her"
- Larry
"My friends treat me differently now that they have taken the "Challenge". It made my pain real to them. That's something that I have been trying to do in words for the last 5 years. In just a couple of minutes everything changed for them. I finally have the support from my friends that I have longed for.
- Melissa
http://www.fmaware.org/site/PageServer?pagename=ClothespinChallengeCampaign
|
| 1/18/2008 2:32:47 AM |
Fibromyalgia |
|
dionesia
Seattle, WA
age: 52
|
One huge plus to all who suffer fibro or cfs thankfully they are finally recognized by the AMA (American Medical Ass.) as a real disease. One very important factor in any type of arthritis or joint pain is weight. Every pound you lose will take pressure of the joints. I also strongly suggest eating natural whole foods. Avoiding suger, wheat products, and anything processed usually makes a big difference. Walking and swimming as much as you can but no high impact exercise such as jogging. Some also say avoid dairy but most of us need the calcium. Natural low or non fat yogurt or keifer is best. Yoga and pilates are also helpful for some. I personally prefer acupuncture. Is hard to make all these changes at once. Do it in small steps gradually and see if you get any benefit. Walking is very helpful in fighting the depression that comes with the pain. Unfortunately those with painful disorders will not be understood especially on a dating site where your date wants to do high energy things and you can barely manage to navigate. Sorry to go off on a tangent. Is very annoying and upsetting that many who have not experienced chronic or intractable pain do not understand. Most who suffer feel enough guilt due to their limitations. Anyone who truly cares will take another as they are. So glad to see all the good information from others. Remember you are not alone.
|
| 1/18/2008 3:02:12 AM |
Fibromyalgia |
|
whalemstr
Corning, CA
age: 50
|
First I've ever seen of the clothes pin challenge!
I have been telling doctors and others for a few years now - that I figured out how to describe the pain I am in with my back.
Have even had my doctor try it for awhile - and that is to take clothes pins - 5 of them and clip them to your your arm about an inch apart.
Then never take them off!
Blows me away that there are others that figured the clothes pin thing!
See I am normal!!!!!!!!
But,
I'm feeling muuuuucchhh better now!
Dan
|
| 1/18/2008 3:29:03 AM |
Fibromyalgia |
|
thepkk
Springfield, MO
age: 53
|
Dion, I have had this for years. The dr put me on disability because of it. The reason I am up so early today. Having a bad fibro day. I used to water exercising but I had to have a knee replacement and can't exercise now. Can't hardly move due to this knee. I wish I could get out there and do things.
There is another real good website that I like it is immunesupport.com. Good information on the new drugs for it and alot go good information. That letter to normals is a good one. I have seen it before.
|
| 1/18/2008 7:12:05 AM |
Fibromyalgia |
|
renonetwo
Waterville, ME
age: 57
|
Anyone with a flareup I wish you warm gentle hugs. I'm going through the first long one I've had in months. I too was put on disability just last year after fighting for five years.
I had one doctor laughing, telling him this is how I'd approach a potential employer.....I'd love to work for you, but you must be prepared for those times when I hurt and have to stay in bed for a few days, or hurt and goof up the work all day because my mind is on my pain and not you.
When I feel good I overdo because there's so much I've missed.
My doctors have all said yoga, anything in water would be good, walking I have to gauge because of another back thing.
For me getting enough sleep is essential to put those muscles in a stage four to repair themselves.
Dating? I find so many guys have ailments aches and pains that we understand each other well so I just stay away from the ones who climb mountains.
Depression, you are very right in watching out for that too. I was told it comes from losing life as I once knew it to be. "no ATV riding, no skating,no sledding,....the list is long. You have to focus on what you can do now. 
By the way Dan, I find that if you can't find clothespins? What you do is put your hand on the large muscle between their shoulder and neck?.....squeeze tight..it gives the same effect LOL! Glad you are feeling better...
[Edited 1/18/2008 7:20:55 AM]
|
| 1/18/2008 9:58:36 AM |
Fibromyalgia |
|
sunnyx56
Rochester, NH
age: 56
|
Nope don't have it but know where you are coming from back, shoulers, elbows and surgeries. And the part that bothers me the most is trying to convince a Dr., you know like I want you to make a big cut in my shoulder, dig around then just close it up and give me 6 weeks off to enjoy it. I have good Drs.now, but stay away as long as I can and go to a pain clinic when needed for shots. And onetwo things given up throwing a baseball so my kids could learn to hit, fishing and like you I can go on and on. Sunny
|
| 1/18/2008 10:11:58 AM |
Fibromyalgia |
|
whalemstr
Corning, CA
age: 50
|
Sunny - same here - I have twin sons, 8 yrs old, and my 11yr. old daughter.
Trying to play catch, baseball or football, they want to wrestle around on the floor of the living room, and help me build them a fort, and..........
They understand because they live it with me - but it still depresses the hell out of me.
Renonetwo - depression has been killing me. I am slowly working through it now.
This site has helped me a lot.
I bought a sailboat, got to sail it ONCE and then became disabled - it's sitting there laughing at me now. Kids never got to go out in it yet either. They just play on it and in it waiting patiently for dad to have a good day I guess.
Very familiar with - things you can no longer do - but my brain says I can!!!!
Take care,
dan
|
| 1/18/2008 10:23:05 AM |
Fibromyalgia |
|
beelzebob
Greenville, SC
age: 58
|
Reno, your knowledge on fibromyalgia has finally convinced me it's true that my doctor accurately diagnosed me with fibromyalgia. I also take drugs for depression, anxiety, and sleep.
Thanks for the information. I guess it's time for me to seek disability.
Thank you.
|
| 1/18/2008 10:26:02 AM |
Fibromyalgia |
|
beelzebob
Greenville, SC
age: 58
|
Reno, this is off the subject, but you look sexy, and I can tell by the hand in the hair that you are a sensual being.
Just an observation. I mean no disrespect.
|
| 1/18/2008 10:42:10 AM |
Fibromyalgia |
|
renonetwo
Waterville, ME
age: 57
|
Beel, there are really great sites on fibro, as I mentioned fibrohugs.com and National Fibromyalgia Awareness, do a search and find them. They put out some fantastic magazines, I bought a few and put then in my rheumatologists waiting room.
If you are going to seek disability, get a lawyer from day one. Mine did it pro bono, and I think most SS disability ones will.
Fibro fog is real LOL!
If there's a good sized hospital near you chances are they have a fibro support group.
No offense taken and keep us informed on your progress...I battled it for so long and the SS system, that I vowed to help others with this as much as I can.
|
| 1/18/2008 11:51:58 AM |
Fibromyalgia |
|
beelzebob
Greenville, SC
age: 58
|
Thanks, Reno.
|
| 1/18/2008 12:19:47 PM |
Fibromyalgia |
|
thepkk
Springfield, MO
age: 53
|
Fibromyalgia is a living hell. Yes depression is a very big part of it with the pain. I do so miss my old life. I had a job I loved making more money than I ever had and just bought my first new car. 2001 Kia Sprortage. I loved that little car. Then shortly after that it was like BAM I was hit with this. I couldn't keep up the payments. When you make nothing you can pay nothiing. So I returned it with exactly 9000 miles on it. They say I still owe $6000 on it. But I figure they can't eat me. I now own nothing. I barely keep the roof over my head. Social Security is not what I wanted to be on at this age. Oh you can work but only make like $600 a month. Who is going to hire you to work that few hours a week? The only jobs I can think of would require more energy than I have to give.
I hurt so bad today I just want to scream. And I feel so tired yet I can't sleep from waking up in pain. I wish I had a deep pool of hot water to get into. But I don't. So I get online hoping to find something to get my mind off of it. There is nothing fun today so it's going to be a bad day for me.
This is my day. I hope others are not as bad off today as I am.
|
| 1/18/2008 12:30:13 PM |
Fibromyalgia |
|
whalemstr
Corning, CA
age: 50
|
Did every bit of my fighting to get disability myself
no lawyers
just me
doctors
phone calls
letters
years
worth
basset turds
|
| 1/18/2008 12:37:14 PM |
Fibromyalgia |
|
thepkk
Springfield, MO
age: 53
|
Dan did you ever get it? I had to get a lawyer to get mine, but after I turned 50 it seemed like no time I got it.
|