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2/14/13 1:15 P

It couldn't hurt that bad!!!! If they only knew!

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2/13/13 11:23 A

It doesn't matter how much I explain, my fiance and my 15 year old son do not seem to understand -or care- about my disease. I think because I am able to function, it just doesn't affect them.

I Have a migraine today and general achiness... I hope everyone else is fairing better than I am today!

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2/4/13 12:03 A

You're welcome, Beth. Once I found that, I went crazy! You should see how many pages and articles I have saved now!!

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2/3/13 11:59 P

HIPPIEGURL----
Thanks, Sandy. There is a lot I still need to learn about using this site. I did save that link. If I read it enough times some of it will stick in my teflon brain. Maybe!
--Beth.

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2/3/13 10:41 P

PURPLEDRAGON

If you want to save the link to that article for yourself, go to your Sparkpoints Page, and find the line that says "Do a SparkPeople Web Search". On the left side of that page there is a column under "My Links" where you can copy and paste the links from the tops of the pages of articles you want to save.

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2/3/13 12:07 A

Excellent article and link, thank you for posting. Now if only I can remember the words when I need them...

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2/2/13 4:23 A

that is an good article, thanks for sharing it. There is alot of great fibro slideshows there.

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1/26/13 10:28 P

ALASKANMOMOF2, you are definitely heard, understood, and acknowledged here! I have the same issues....even my mom (who is an EMT) thinks fibro is just a doctor's excuse for not knowing what is really wrong. Of course she is worried it is something else, but I just want her to embrace what it is and acknowledge what I am dealing with. Thank goodness for HIPPIEGURL's link...I sent it to her tonight and hoping she reads it soon.

The people at work definitely don't get it and I gave up even trying to explain it months ago. I busted out in a panic attack on Wednesday and honestly it was embarrassing...especially when coworkers are saying "Are you feeling sick or something?" Duh, I can hardly breath, I even sound every bit of confused and I can't seem to get myself together. It can be so frustrating, but really there's nothing any of them can do to help...sometimes I just want to be left alone. We have a really nice employee bathroom with like a vanity area, but still a tile floor and I ended up having to excuse myself for about 5 minutes and I went and actually laid on that floor crying, panicking, with my face on the chilled tile...LORD, if they knew that they probably would have called an ambulance, but all I needed was those five minutes and a cup of coffee.....Whew...I have been all kinds of emotional this week! If I could stop being so mad at myself for these changes with my body it would probably help me deal with it better, but once the anger starts setting in it's so hard to turn the switch back off...until I have completely exhausted myself of course.

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1/7/13 7:52 A

I'm going to peek in and speak up on this post.

I've been hiding. I've been feeling isolated. Feeling like no one truly cares, understands, wants to know where I am. I'm wrong. I know that mentally, yet the exhaustion of being sick just takes my breath away some days. I have several diagnoses in addition to the Fibro-fun, yet the fibro permeates the rest of 'em. I think some of you are nodding your heads.

This was a wonderful way to "re-enter" this supportive team. I felt understood. Heard. Acknowledged.

I began to giggle a little when I read the response "Fibro isn't a real disease." :p Almost word for word from someone recently. I can't take any of those meds due to side effects/conflicts with other drugs I'm on, but boy does that give me words for later!

It was helpful, too, to see the other conditions. I do have several of those in addition to Fibro. Fibro is the primary that I cope with day to day the most, though.

So...thank you for posting this, thank you for reading my comments, and I will try to find other places to comment and contribute to this supportive group. Thank you for being here.

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11/21/12 6:19 P

Thank you for posting this. It's true... people who have never suffered from fibromyalgia symptoms cannot understand. That's not to say that they don't want to, but it really is difficult to explain. I struggle with feelings of shame and sadness when I can't provide the explanation "said person" requires to attribute my symptoms to a "real disease/illness.

MY PERSONAL FAVORITE:
"Well you don't look sick ...
If we let ourselves go and show how we actually feel, people are uncomfortable and don't want to be around us. On the other hand, if we manage to fix ourselves up and put on a brave face, no one realizes we're sick. "

Of course I work hard to manage my symptoms (like everyone here) and keep my own struggle hidden so that (they) don't have to suffer through pitying words and glances and frustration at how I don't feel "great" every day. I work hard at this. Which is part of the reason they are surprised to discover I cannot do everything that a normal 23 year old should. My illness has forced me to sacrifice and make more mature decisions since I was 19.

But on the bright side...
I have come far. I have fought hard. I've learned to be gentler with myself. I have succeeded in educating those who are closest to me. I will rest when I need to. AND I WILL CONTINUE TO TRY.

Thank God for the people who do care enough to try and understand. We have to keep trying to explain, they need us to try just as we need them to try.

Edited by: MEG-NATALIA07 at: 1/7/2013 (10:59)

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9/18/12 5:43 A

I'm very glad that this was appreciated by so many. I was diagnosed with fibro in my early thirties, so I probably had it at least 5 to 10 years prior to diagnosis, and I turned 60 this year. That means at least 35 years with fibro and nobody really understanding how I feel until I found this group. Thanks to all of you for your support!

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9/12/12 4:00 P

Thank you for sharing this. I am bawling right now because I am finally feeling a little validation. I am really good at hiding how awful I really feel, because I don't want people to think I am a complainer. I think the invisibility of this illness is the worst part. Dealing with the fatigue and aches and pains would be a little easier if I felt the people around me truly understood what I am feeling.

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7/23/12 7:03 P

Thanks for posting this Sandy!

It's very confirming.

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7/18/12 7:44 P

Ashley,
I can completely understanding! I have had fibro for over 20 years and it hasn't gotten any easier! Every morning I wake up feeling like I was beaten up during the night! Every morning I have to plaster a smile on my face, go to work ,and try not to complain too much! No one understands what fibro does to you mentally, physically, or emotionally except someone else who has it! Just know that you are stronger than your mother because you are enduring this! Maybe one day she will understand your pain, but if not, that's ok too. As long as you keep getting up every morning and fighting another day! Good luck!!

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7/15/12 1:21 A

I'm 22. I've had Fibro since I was 15, and my MOM is the hardest to make understand. She always yells at me when I'm crbaby and that only makes me MORE crabby because I'm always crabby when I'm in a frick ton of pain. I tell her that she wouldn't last one DAY of the 7 years I've had with fibro. She just tells me to shut up and walks away.

I honestly WISH she could feel the pain I feel every day. I wish I could show her what it's like to wake up in the morning and get out of bed, not because you're done sleeping! NO WAY! But because it hurts too much to lay there.

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7/5/12 11:25 A

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6/18/12 5:53 P

"Well, you know, you're in your 30s now...you're not getting any younger." Argh! Thankfully I've had at least one doc (chiropractor) who agrees with me. I say, "I am only in my 30s -- I'm too young to hurt this much!"

Thanks for posting, HIPPIEGURL! I think that, approached delicately, it couldn't hurt to share with your family. I personally would say something like, "This explains it so much better than I've ever been able to!"

JCISNEROS, my heart goes out to you about your husband. I don't think my BF (or anyone who doesn't have fibro) REALLY gets it, but I am grateful that he believes me. Because it really does sound crazy and like it could all be in our heads!

TWEETSMOM, can you see a physical therapist? I'd been to PT at least three times before my steroidal epidural injections, but it was the PT session AFTER them that helped the most. (I have what has been called a herniated disc/spinal stenosis/degenerative disc disease too - in fact, it may have "covered up" the fibro for years! Since I was so focused on the back pain, the headaches and the neck and shoulder pain and crappy sleep all become secondary for many years.)

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6/17/12 5:07 P

I hate when you get the doctor that tells you " Learn to live with it" I'd like them to walk a day in my shoes!

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6/16/12 5:00 P

It's so hard to explain this disease and how it links to hypothyroidism & chronic fatigue syndrome.......and now I have to deal with the added pain & disfunction of spinal stenosis........so on top of the other symptoms, I am now alienating myself from coworkers because they think it's 'all in my head'!! i am just so tired of being tired & hurting!!

I have recently had 2 sessions of spinal epidurals, and altho some of the pain is gone, I still have pain walking & sitting at my desk all day...........by the end of the day, I hurt sooooo much and am so exhausted that I can't do much when i get home.......my biggest wish is to sleep in a bed again.............I have not been able to lay in our bed since last August......

I am seeing a pain management specialist but have not found the right medication that does not make me a zombie during the day but helps dull the pain so can function at work. And exercise is so out of the question right now, which makes for more depression..........and the vicious cycle continues............

Our only hope is i continued research & articles like this one to try to brig enlightenment to those who have never had pain..........especially the kind that has no outside physical presence.

Thanks for sharing & listening to me vent my frustrations........it does help to know I am not alone.........

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6/15/12 2:47 P

Wow, I want to print this and hand it out to the jerk wads who choose to believe it is a choice to be this sick. I got angry at my husband, because I was telling him about an episode of Dr. Oz, where he looked at the brain and fibromyalgia, and he explained that the symptoms were not in our heads. My ever supportive husband said, oh, I thought you were making it up. It bothered me because as a woman, we are often told that what we experience is in our heads and isn't real. And it is. Thanks for this post.

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6/12/12 6:40 P

It's all in your head. Since they don't know what causes it, There's no use treating it. S
ince there is no definitive test for it, it's a made-up syndrome. Stop complaining; it could be worse. Just get up and exercise. Even recently, I was told some of this by my best friend who evidetly hasn't felt pain nor fatigue a day in his life, let alone every day of his life!

I wanted to strangle him. Instead, I educated him.

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6/12/12 8:05 A

I think you should forward it to family members. Like TRY2KEEPGOING said do it carefully. If they are interested they will read it. It may take them some time to understand it. Please be patient with them.

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6/12/12 7:43 A

I think it is worth a try as long as you set the stage properly. Make it safe for them rather than a complaint that they don't understand. You might say you received this from another fibro patient. And you were so surprised that it was so very descriptive, You are so excited that you wanted to share it. Focus on it as a positive, not a deficiency of their ability to understand you.

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6/11/12 9:53 P

My thoughts were to possibly forward this link to all the family members who say they understand how we feel but we really know they don't. Do you think this would alienate us from them??

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6/11/12 9:43 P

AMEN!!!!!!! Only fibro-mates understand the full depth of this. We don't look sick and we try not to complain too much because we don't want the stigma of "it's all in your head" (aka imagination). We get very good at denying how lousy we really feel---like holding your lap dog or having a grandchild crawl up on your lap. We keep going because there is no other choice. Here's to all of you who understand!!!! Thank you for posting this HIPPIEGURL!!!!


Gentle

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6/11/12 9:05 P

I found this site while browsing the web today, and boy!, does it ever hit the nail on the head!!

www.healthcentral.com/chronic-pain/cf/slid
eshows/top-10-things-not-to-say-to-a-f
ibromyalgia-patient/we-all-get-more-ac
hes-and-pains-as-we-get-older/?ap=825

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