Hello everyone i stumbled across this site browsing the internet and just hoped maybe it may help me understand a bit more. As i said in my profile the thing i am finding most difficult now is i am forever questioning myself and then pushing myself too hard i think. I am have continuous problems with shooting pain, aching, headaches and tiredness, and i have terrible trouble sleeping at night if it isn't pain or the restlessness then i am worrying about things that really are not an issue and shouldn't be keeping me awake! I just feel like although i try to explain to people what is wrong that they are mocking me and just thinking i am making a mountain out of a mole hill and its all in my head and i am being a hypochondriac. i then start questioning myself.... am i making a deal out of nothing?? is it all in my head?? does everyone feel like this and it is normal to ache and get pain?? but then somedays i really struggle to walk up my stairs or to get out of bed although i still push myself to do it. I have a continuous ache all over. I've just had enough. i found Christmas and the family holiday we had this year the hardest as i had to go to bed early quite often and if i did push it and party like the others i was just awful for the next day or more. I think everyone just thought i was Lazy!
Im 23 and cannot live my life like any of my friends but is it just because im not letting myself and its all in the mind or that i just need to deal with it and stop making a fuss!
I am sorry to ramble on i just need some advice hopefully from someone that knows how i am feeling.
Fibromyalgia is not an easy illness to diagnose because it has some symptoms that could be part of different diagnoses. So, it is a diagnosis of elimination. As you were sent from doctor to doctor the pieces of the puzzle finally fit together and that was how the one doctor was able to come to the diagnosis. Don't start questioning the diagnosis, just be relieved that finally your doctors found the diagnosis. Be relieved and move on as you learn how to live with it. I believe that since you found this online support group where the members believe you, care and support you, you will be able to learn how others are able to live with it. It's so difficult and so frustrating when the people who should be supportive just are not. If only they would just accept what you say about how you feel, but that just doesn't happen. All of us have been through the same frustration, but since we found this support group we feel more positive as we learn to accept our diagnosis and learn from others how to function.
hey frosty, no it is not in your head. you are tired you haven't had much sleep and you just can't keep up to the pace of your friends. this is the reason that many of use do not discuss our illness with people, and it is also what brought us to this group. people don't understand how we feel because many of times we don't look sick. I am 46 yrs. old and only have been in terrible pain the last few years. I'm sorry that you have to experience this illness at such a young age. you are not lazy, and most of the time people with fibro. are over achievers. do people really think that we would rather be in bed all day then out partying or having fun? do not question yourself, you are suffering from pain. I really hope you feel better and you find encouragement in this website. I am fairly new to the site and I have really been learning a lot, listening and talking to people with the same types of problems.
Thankyou both of you. this has made me realise i am not the only one. My husband has been very understanding recently but we dont really talk about it. Maybe now after reading your comments and looking through stories i can feel less of a fraud and not feel bad in feeling rough.
Hi frosty12. I was your age when my illness really started to show its ugly face. I was working 40 hours a week and raising a 3 year old. I thought it was all in my head too. I pushed and pushed myself. The days of pain started to take over the days of no pain. I unlike some people did not want to admit that something was wrong with me. I wish i would have known back then what i know now. Stress makes it worse. No it is not in your head unless you have a headache. You will find away to manage your symptoms. You are not alone in this. It will get better you will learn what works and what doesn't. just hang in there we know what you are going thru. as for your husband he may really want to understand what you are going thru but he may not truly get it. Just be open with him and tell him what makes you hurt and what you need to tweak.
You are NOT alone! We all feel this way, if not at the same time, all at different times. This illness is a hardship I wouldn't wish on my worst enemy! It has also taken my life away. I wasn't able to see my very ill grandmother until it was too late. I called her once when she was in the hospital and in a lucid moment before she died and said we loved each other, that was 6 months before she died. Only at her wake did I see her again, I was devastated! I didn't know how small she had become as well as frail. I was unconsolable. My illness took her last months away from me. If I had felt better, I would have been able to stand up with strength to my crazy family and gone to see her. The hell with them. Because of fibro I lost her last moments,
Fibro takes so much away! I swear its the worst illness out there. It takes, takes and takes! It keeps taking until there is nothing left to take! By then its too late, and you didn't even realize it.
I hope you are getting some hope back by reading you aren't alone.
You are not alone. Fibromyalgia is an insidious disease; and part of the hellishness of it is doubting ourselves, and wondering if other people think we're faking or lazy. Christmas is the worst: it drains every bit of our energy, while making us feel that we should do more and more. But Christmas is over. Get a lot of rest. I hope you have a good doctor. If not, get one--hopefully, one who is not tied to Westerm medicine being the only answer. Ambien can help you sleep and cut that vicious cycle of no sleep equals more fatigue and pain which leads to another night without sleep. And try talking to a good friend. If she or he is really a good friend, they do understand, or at least they will want to. You deserve understanding and compassion--from yourself and your loved ones. We all know how you feel. We're there, too.
You are definitely not alone. Everyone has to deal with this and I wish I could say it gets better with time. It's important to do what you can to manage this illness and improve your quality of life but this is a struggle. And while you can't control the people around you who don't understand, you can control the voice of self doubt in your own head. You just do the best you can and don't worry about what other people think. Fibromyalgia is real. It makes us feel awful and tired. It is an "invisible" illness and others can't see the pain and fatigue we feel inside. They think we can control it which we can't. It's not laziness and it's not in our minds. Hope this helps!
I was having a hard time explaining to my family and friends what I was going through. Even my son had a hard time understanding UNTIL he started having fibro symptoms himself. Sucks that that's what it takes for people to understand.
I finally posted the attached on FB for my family and friends...
Hi Frosty, I have this awful disease too. For me it's a part of Ehlers Danlos Syndrome with Hypermobility aka HEDS. It's a genetic connective tissue disorder that causes the body to make bad collagen. Our bodies use collagen everywhere. It's basically the "glue" that holds us together so it can affect any system in the body. Once I figure out how to make a subgroup our wonderful SK suggested making a one for hypermobility and I will post more info there. Apparently my Dad had HEDS and didn't know it. It can also cause Chiari syndrome which affects the brain and causes headaches. Personally, I think HEDS and other forms of EDS are under diagnosed because it's not looked for since it's "rare" but that's just my opinion. I just wanted to introduce myself. I'm waterfall_woman on yahoo and Waterswaves on facebook for anyone who wants to friend me. Hang in there. Invisible illnesses like fibro, eds, and more aren't easy to deal with but we can do it.
It's ok to ramble. You need to say to hell with the people who don't believe or understand. What's important is you know your in pain, and you need to look after yourself first. Pushing yourself won't help (I tried), it just makes all your symptoms feel worse. If you have a good doc he/she should tell you not to overdo anything. I know it's hard to tell where that "stop" point is. I felt good just before Christmas, so I did alot af cleaning, shopping etc. and now I'm paying for it bigtime. You'll like it here, everyone understands and that's an amazing help. Good luck :)
Thanks everyone. it helps. My husband is great he helps me up stairs when i struggle etc and tells me to sleep when he thinks i should. i just feel so lame that it flares up so frequently that sometimes it may just look like i am making an excuse not to walk to town or to do something and so is my mum due to her having M.E so she understands more and the way i'm thinking. I don't talk to her much about it though as i feel bad due to her being in a lot more pain i don't like to tell her my problems. Unfortunately i am one of these awful people that worry what everyone thinks of me and although people may show me some compassion in my head i feel they must be thinking "silly cow, man up!!" when in fact some of them may not be thinking that at all. Thanks all for your kindness and trying to help me see i am not the only one to feel like this :-) xxx
You are with us; you are not alone. This group has helped me when my dad and mom were telling me to get up and exercise. Please… Well, I printed off The Letter To Normals, and I’ve never heard anything else. The worse part to me besides everything is the weight gain. I have gained 35 pounds. I feel flabby and unsexy. Yuck.
I have also developed a skin disease which looks terrible, like bruises or burns all over my body.
This life is rotten, but I count my blessings: good drs, my dogs, my wonderful boyfriend, my reformed family, my home, my good outlook most days.
Today, I washed a load of clothes and put up clothes from last week’s beach trip. I also found my mother around a dozen skinny pants she can wear in my closet. I’m done.
Frosty12, I wish you the best. I would recommend a good pain clinic and a psychiatrist who can prescribe meds. My bipolar was really bad before I got stabilized. My mother has been institutionalized twice. You do what you have to do hon. Hugs.
firstly id like to just say as everyone else has, your not on your own through this, i was a very shy newcomer not so long ago as i didnt know anyone but mum who had fibro, now i realise theirs a whole group of people who understand how i feel more than anyone i know around here.
secondly, i want to say thankyou for your post, its another that i have read that i could easily have written myself because thats how i feel a lot of the time. Im 34 and after years of pain only got diagnosed a couple of months ago but even now i cant let it sink in and think its in my head, perhaps ill get up tomorrow and itll all be over but it never is. its been good to read your replies too, all these help everyone reading them. so thankyou, for highlighting your feelings, for being brave enough to put them on here, and for being so open and honest xx
Hey girlie! We really do know about this! No one can get lower than the ill, keep on the Doctors, keep telling them you need better care, better meds, let them know they are your only hope. Some of these Drs become complacent, and need a nudge, and we have to give it to them, we also need to hug them sometimes for taking such good care of us! Imagine what they try to do in a day!
You did the right thing, you reached out, you joined our family, and you posted and reached out! Look at the responses you are getting. There will be more too! Lean on us, we are there!
Sending you love,
Hi, there, I absolutely know exactly how you feel, hon. I've had fibro for many many years (I'm 54 now), and it can just take control of your body when your mind wants to do something else! When I was your age, my family thought I was lazy and just didn't want to work or go to school. But I've realized that you can't change people's minds, they think what they want. All you can do is try to tell them how you are feeling. I got my Doctor to write a note on a prescription pad (so my family would know that it wasn't forged) that stated I had Fibro and Lupus. He also put, "There is no mistake about the diagnosis." Even with the note, they still don't believe me. They don't say anything out loud about it but they still think I'm exaggerating. I don't know about your pain but sometimes it feels like someone has worked me over with a baseball bat. Even if I just tap my foot to some music, the next day my shin hurts so bad so I have to be careful. Are you on any meds for pain? Have you seen a Doctor? I'm on the strongest vicodin there is and my Doctor said I can take 2 at a time if necessary. It makes the pain tolerable. So it would help if you can seek the advise of an understanding Doctor who knows about Fibro (a Rheumatologist, preferably). This is not just in your mind, honey, trust me. My daughter has it, too. She's your age and we see the same Doctor. She really suffers alot, too but the pain meds make her life easier also. And don't worry about rambling on. We all need to vent our emotions to others who understand this condition. I hope the advise you're getting from us will help you in some way. I will be praying for you! : )
Hi Frosty, I am so glad you have joined our fibro family !!! Everything you have said is so right on, we can all say we have felt this & thought this. Fibro is a condition that can be so bizarre we do question our self, and learning to accept our limitations and not feel guilty & ashamed is something that takes time, at least it took me time. ( & I think most would agree) you will learn that pushing your self only makes thing harder, there has to be a balance, and you can’t look at what your friends can do, you have to know your limits, it can be difficult to listen to your body, when your head is telling you a whole different thing. But just know its not all in your head, I just told my dr. Last week after 2 years of learning to live with this I still have a hard time wrapping my head around it. Have you read the spoon theory ?
Please don’t ever apologize, we all know how you feel !!
Many hugs & blessings
I think it's especially hard to have fibro when you're 23 and all your friends want to go go go. I'm glad you're here, where you can find friends who also understand that we need to pace or alternate our activities. As for being all in your head, no. The central nervous system is a key to the varied symptoms we get. When I tell someone I have Fibromyalgia and they ask, then I simply say it's a central nervous system disorder. It simplifies the explanation. Then when I am having symptoms and need to mention them, I tell them it's just another "funky fibro thing". I keep my explanations simple and short.
Everything you describe is in my life, too. For social life, I tell them something that I can do. That helps me stay connected with my local friends. Do you have a good doctor? I have certain meds which help with the pain and lack of sleep. They aren't a magic cure, but they at least help..
Above all, I am sending you soft, gentle hugs.
There are several young people here in this community dealing with fibromyalgia. Did you know that there is a group here for young people? On the Main page go to the top and look for the tab Groups, click on it and then search for the group for young people.
It's really making me angry that with sooooooo many of us suffering from the exact same ailments worldwide, that fibro is STILL so unrecognized. Why should a girl like you have to be treated like a layabout simple because you're ill? Why isn't fibro better known/understood by now? When you see how many people stop by on this site and leave a message, not to mention all of those who don't, you grow to understand just how prevalent fibro is.
No, hon, you definitely aren't alone. Frosty, I'm just so, so sorry for you that at 23 you have to go through this insidious illness. You aren't making it up, you're not losing it. You have a painful illness that is not well understood.Everything that you mention is part and parcel of fibro.
I hope you'll find some acceptance of yourself and your illness here. You certainly deserve to feel better about both things. We do understand what you're talking about and will listen. In fact, I spent two Christmases just as you did. It was the low point of my life. Knowing what was causing the pain did help me to some extent, plus getting meds to help control the pain, somewhat. Hopefully you too will get both of these things and feel some better about your fibro.
Come again and post and read. I do think it's worth your time to read up on the posts, as they contain a lot of good info.