Fibromyalgia-you look great-how can you feel so bad?Is this you too?

I understand that. People always assume I'm ok and I get yelled at for not doing more. They just don't understand that I look ok but inside I'm really not. I can hardly stand long enough to do the washing up. My mother is so unsympathetic. Sometimes I wonder if she thinks I'm putting it all on.

I get that A LOT! I've become very good at hiding my pain and acting like everything is ok. Most people have no idea I have Fibro and arthritis. It's obvious that I have a problem with my leg, I limp all the time because of arthritis in my lower back and hip. People ask me if I hurt my knee or ankle. When I tell them I have arthritis they are usually very surprised. I don't talk a lot about it because I get tired of explaining what Fibro is over and over again so I do my best to hide it. Oh, if they only knew.

My brother is an oncologist and he went to the Wm. K. Ishmael Lectureship at the University of Oklahoma Medical School and fibromyalgia is definitely NOT IN YOUR HEAD! It is a real disease because they studied pain areas in the brain and it proved that fibromyalgia is a real disease and not an imaginary one.

I do have the same problem. If I had a quarter for everytime someone tells me that "to be sick, you look so good." It is as if they don't believe that I am sick. I try to keep a positive outlook. This does keep my smiling through the pain and fatigue most days. Also, I don't want to be a downer, always complaining...and I try to make myself look good (make-up, fix my hair, dress nice). But, trying to keep myself positive does make people think that I can do a lot more than I really can. I visit a website called butyoudontlooksick.com on a regular basis. I have found a good deal of support there. Hey, just because we have a chronic illness and do feel really bad most of the time, doesn't mean that we have to give up trying to live each day to its fullest...we just have to pace ourselves and slow down a bit. Last, don't let the naysayers that think we have to look a certain way in order to be sick get to you. They probably haven't lived with a chronic illness...so they really have no idea what we deal with on a daily basis.

Oh ya! I have chronic fatigue syndrome and tho I look normal and a bit tired, everyone expects you to do everything that you used to be doing. Its tough when you are exhausted all the time...

I found this discussion when I was about to start one just like this, and wanted to make sure it wasn't out there alread. Living with fibro is never easy, no matter how strong, independent, and willing I am. The worst part has never been the pain, which I have learned to manage. It's trying to explain this to people - why I am not always on top of it at work, or why I snap at my dear loving boyfriend for no reason. Sometimes intimacy is a problem because when I flare up everything feels unpleasant. I'm not a depressive person, but sometimes it's impossible not to feel down when I am so young (only 26), so happy, so carefree - yet always in pain. I try to look at the bright side - and there are many. At least this syndrome will not kill me, it could be worse. I will not become worse over the years as if I had arthritis, because although my skeleton feels completely dislodged my X-rays and MRIs show that everything is perfectly fine. But that is exactly why it becomes so difficult to live with this. It will never go away. Never. I will deal with it every day. How can I explain that to someone who doesn't know? I work full-time, worked my way through college. I worked full-time and went to school full-time for a year and a half, because it was my only option in order to afford school. I'm a fighter, and I fight hard to get what I want or need. But when I have to set the alarm clock an hour early, because that is how long I take to drag myself out of bed... Or the fact that I could easily spend my whole paycheck on massages alone... Just the other night I was trying to explain this all to my boyfriend (again, loving, supportive, wonderful man). He couldn't understand, because of course he too is tired after a long day at work. His job involves a lot of physical activity, so he will be sore now and then. He also thinks that a hot bath, relaxing, or a massage feels great. But there is no way to explain that this is different. I remember the life before I had this. I would astound people with my flexibility. In spite of daily stretching exersices, I will never be able to do what I used to - not even half of it. I love riding horses - and still do, although it takes a week for my legs to stop hurting every time I do. And I'm still in decent shape, I exersice as much as possible. If nothing else, I always walk the 15 minutes to and from work (and back home is uphill the whole way). I have learned to be proud of what I can achieve, and not compare it to what I would do before this. The grief can go on. Thank you all who read this, because writing this is very therapeutic. I need others who know what I go through, because you are the only ones who understand. The hardest part is knowing I am only 26. I was diagnosed 6 years ago, although symptoms began appearing two years prior. I have many years ahead, and some days that really scares me - to go on living with this. I'll keep my chin up though! There is always a silver lining.

I don't have fibromyalgia, but did go through a year and a half long fight with lyme disease. It started with a stiff neck (couldn't turn my head), then moved into my back, feet, knees, wrist and thumb joints over about a 10 month period. I *really* hurt! After discussing it with a friend of mine, she mentioned Lyme Disease. Said she'd had it and my symptoms sounded very similiar. When I first went to the doctor he prescribed heavy doses of steroids for a week to get the overall inflammation down. He pulled blood to check for Lyme Disease, Lupus and Rheumatoid Arthritis. All came back negative. He was going to leave it at that. I wasn't!! I made another appointment, but this time didn't take any ibuprofen or any sort of pain relief before going in. I hurt so bad I could hardly walk. The nurse noticed, the doctor noticed. I got their attention. We decided to treat for Lyme's anyway based on symptoms. Also he pulled blood for an inflammation test. Normal should be around 20, I was a 36. I ended up doing 5 weeks of doxycycline and 2 more rounds of heavy doses of steroids. Slowly the inflammation started going down. My wrist and thumb joints still hurt, occasionally my knees and back, but it's much better now. I am just now at the point I don't have to take ibuprofen every day. Other natural things I've done that I believe have truly helped are 8oz of aloe vera juice (mixed with juice) every day and I take MSM (anti-inflammatory and increases circulation.) I also make sure to take my multi-vitamin everyday and 1,000 mg of C. As I was researching Lymes on the internet, Fibro kept turning up too. I read where Lymes mimics fibro and sometimes fibro is undiagnosed lymes. The lymes test is not a positive, reliable test. You can get false positives and false negatives. I did my homework researching all this and printed up articles to take with me to the doctor. I hit most of the symptoms, so felt I was on the right track pursuing Lyme Disease. I'm glad my doctor listened and was receptive. I hope something from my experience helps you? Just like you, I hurt so bad, but looked fine from the outside. It is frustrating. Best of luck to you!

Although I have not officially been diagnosed with this I do believe I have it. I had one doctor ask me if I had been but then he dropped it. I think because he didn't want to deal with it at the time. I do have other problems though including degenerative disc and joint discease, straightening of the lumbar, compression of the upper spinal area and arthritis etc. I'm 38 and I'm often taken for being around 20. This might sound nice but so many just assume because I look young I must be able to do everything and anything. Even my own mother does this. It's very frustrating not to be able to do what I did in the past and it makes it all the more painful when people who are in your life cannot understand. It's bad enough from strangers but when it's ones you see you all the time and they cannot accept it you do start to wonder. I don't know a day without pain anymore. I haven't for a long time. I'm not even sure what that would feel like. I'd love to find out though. I'd also like to have others accept that I'm not able to do many things and that to keep asking me to do it really hurts my emotionally. There are many things I will struggle through just to satisfy my parents for example. I then come home and pay for it for days on end because I way over did it. They don't want to hear that their "baby" and I am their youngest can't do things I suppose. I don't know but I do know how aggravating it is to have someone think just because you look normal means you must be.

Just get out more. You are not doing enough. So on and so on. This is what I hear. I am on disability for my bipolar and I have almost constant joint pain. One of these days someone from my family is going to be supportive. I am tired of hearing you look good.

I know a woman with this. I have read up on it also as a trip to the hospital lead the Dr to believe the pain was from fibromyalgia, or CF. I read up and was relieved when it turned out to not be either. I know full well that looking well does not always mean feeling well. I might say you look good when seeing you after a time but never if told the pain was bad that day. Some people do not realize how the pain can be so strong let alone the other things that go on. Just ignore them and go on. Let them think whatever they want. Explaining to people like this will do no good. True friends will believe you, your family believes you and the Dr believes you. And God knows your troubles and he is the one that matters.

RAYDENE i AM SORRY THAT YOU HAVE TO SUFFER SO MUCH - I DON'T KNOW MUCH ABOUT THIS CONDITION (oops sorry for shouting!) but I do know that it is very painful! I haven't had the problem to the same extent but I have been in terrible pain for just over a year cos of my back problem(I am now waiting on surgery) and at first I wouldn't tell anyone about how bad it was cos I was worried that they would think I was at it! Luckily almost everyone has been very supportive - don't let it get you too down honey - you are a strong woman!

Oh yes, I've got that problem, too! Wish I could find someone to take it, but no one wants it! Blessings, JoannH

Oh my gosh...yes! I'm a 31 year old mother of two small children. I was very fortunate that I was able to quit my job 5 years ago when I had my first child (I worked until my due date). This illness has set in REALLY bad though. I feel like such a failure as a mother and wife. It drives my husband crazy and frustrates him to no end when the house isn't cleaned up or the laundry has stacked up. I try to explain that I do absolutely everything I can possibly do each day. There are days that it is painful to move at all..I want to just stay in bed and not move....but with my two little ones I can't. I get up and I feed them, hold them, talk to them, try to read stories. These are the days that it is so hard and the anger sets in. I am angry that I can't be like so many other moms and take my kids to a play group and then by the park and maybe even stop by the grocery store all before coming home to make a nice dinner. My kids have never been to an actual playgroup. I only finally have been able to take them to story time 1-2 times per month at the library because I have started taking Tramadol to take the edge off. Listen to me...I'm off and venting :) Sorry. I over did it a couple of days ago and have paid a heavy price. My heart goes out to all of you with this horrible illness. Thank you for listening!