Please help me
An_254004 posted:

I'm in my early 20's and still live at home. I'm not currently able to work or go to school. I've started college twice. The first time I dropped out because I was spending more time in the hospital than in class and he second my doctor told me to because it was affecting my health so much. Everyday all I here is that I have to get a job, that I need to get out of the house and get a life. I've tried countless times to explain to my parents that there's nothing more I want more than to do just that but, I'm not able to right now. Every day, every lecture I get is just another reminder that I'm not able to do this and it just gets worse every time. I feel like they just think I'm lazy and making this up. They always say I understand and know you don't feel well but, other people do it all the time, just suck it up. There's just a point when you can't push yourself any further no matter how much you try. Right now I'm at the point where I have to spend 2-4 hours just recovering and getting my strength and energy back after getting a shower. It takes me almost a whole day or more after I go out to the grocery store. I don't know what to do. I've tried everything I can think of to make them understand but, nothing works. I've tried in the past before I was as bad as I am now to get a job and everything would go good until the interview when they saw how slow I moved or the limp in my walk, or how tired I was. That was when I was feeling good and not even as close to as bad as I am now. I spend every day walking around in a fog, tired, and in pain. I wake up each morning and want nothing more than to go back to sleep, just to be unconscious and not have to deal with any of this. I don't like complaining, I can't stand people who complain and I hate it even more if I find myself doing it. But there's only so much I can take and I feel like I'm far past that point. If I'm like this at my age then what is the rest of my life going to be like? If I'm this miserable now how am I supposed to keep doing this for another 50 or 60 years? At the very least all I want is to be understood, given a little extra time to get things done, and maybe just a little compassion once in a while just to know that someone actually gives a damn. I have to be lectured every single day and it just makes me feel worse and worse both physically and mentally. How am I supposed to take it when everyone around you says I understand but, it's no excuse so get over it and do the physically impossible. I don't have anyone I can talk to and I'm completely lost. I don't know what to do. If there is anyone who has any advice or can help me in any way please do.
booch007 responded:
Good morning anon...

First thing I think of is don't think about 50-60 with today. Today has enough issues to think about wihtout being overwhelmed.

You have not mentioned what meds you are taking to help? Or that it is really FM you are dealing with.

If I were in this, I would get my parents tot he doctor to hear the truth of my illness. I would educate them with the information we have everywhere. Even using this board. Show Mom the Toolbox in "resources" It shows so well the struggles and the tricks we have come up with. How many doctors we went to to get diagnosed.

It is never easy to have another understand this problem, I feel for you. They really are trying to get you to "become" . You are so young and haven't taken flight yet in thier eyes. But they don't know the wings are broken....and you need help. It is so important to get out and be in the world. Maybe you can do some volunteering (this is short stays and self driven) Also it is doing good for another which is good medicine.

Volunteers of America might help. Go to the hospital and ask to help feed the babies, read books to the sick children or the elderly. Nursing homes can use help. The kids would love a young girl reading to them.

It doesn't take much but it can make such a difference ....even in you. The first step is the first step. IT IS HARD and BIG...but I can see how the life can become just being home and "knowing" you are in pain.

If I didn't push to go to work I would have a very small world.

This is the toughest problem I have ever had and I fight eachday to win against it. Some say this makes you stronger, well only stronger if your hands are up fighting.

I hope you get this figured out. Mom and Dad I am sure are looking for your benefit. Try again to explain and maybe try my idea, it is not a commitment of long hours and everyday. IT IS WHAT YOU WANT. But it is contagious.....once you light up a life, you will do it again.

Then who knows it may open a world to you as people take you under thier wings and you move forward.

I see this as a good thing.

Nancy B
missist responded:
Good Morning, just logged on and found your post. I am very touched by what you are saying. I am in my mid 50s but was about your age when I first got this. I had to quit my job back then and go home. Fortunately for me--at the time--I was already married and my husband was OK with me staying home. So in that respect I did have it easier than you--although I was busy at home taking care of children and having babies--and that was all pretty hard with fibro. I was exhausted and in pain all the time--I think people do not understand that-- it is literally ALL the time.

Now--that does not mean it never improves. My pain level is far less than it used to be and I can be productive much of the day-just really tired by about 2 or 3 pm. Which--I know what you describe-- I spend a lot of time just recuperating from everything I do.

I did work away from home some--including a full time job on my feet for almost a year, which sadly I got pneumonia and began to really wear down from it. At the time I had no choice as my husband had lost his job and we had 3 of our 4 kids still home.

I do certainly feel for you. As a parent of adults --I understand your folks concerns too.

I hope you will return and visit here often-- many of the folks here are very very knowledgeable about fibro and the many aspects of it--and how to 'have a life' inspite of it.

With some help -- Ideally--you can learn to set some goals and find ways to achieve them and eventually be out on your own--perhaps with a disability? check-- I'm not sure. About 25% of people with fibro do go on disability at some point.

Stick around and learn and get support-- as you work out a plan for treatment that works for you--the right combination of meds & vitamins/supplements/exercise & etc-- you should begin to feel a lot better. Also as time went on for me--I did feel a lot less overwhelmed, painful and even less tired. I'm not saying I"m healed--I definitly still after 30 years have many fibro issues--but I really believe it is the worst for most of us when it is first begun. I was just so pained for the first several years and nobody then had any kind of clue how to improve symptoms.

Research is moving along as well--so don't feel you should ever give up--this may be cured in a few years-- could happen.

In the meantime--I've just jotted you down in my prayer list and I will be praying for you and your parents. Peace to you,
This will improve,
dollbug responded:
Hello and welcome...MiMi in sorry that you are having to deal with all of this. I do want to tell you that most people do NOT understand FM because the majority of people who have it do NOT LOOK SICK. Have your parents been with you when the doctors talked to you about what is going on with your health. (not all doctors even understand it). Perhaps you should allow them to go in when you have to go so that they will know you are indeed dealing with a real illness.

I want to ask you if the doctor has checked your Vitamin D level not then I would suggest that the next time you see the doctor to be sure and ask about getting your Vitamin D level checked. This is really important for a lot of people. Low Vitamin D can cause additional pain for some people and it can also affect other illnesses as well. It is a simple blood test BUT you must ASK the doctor to run it.

I hope you will check out the info here under *tips* and *resources* and be sure and read the *member toolbox* as well. I am sure you will find some good *tools* that just might help improve the way you feel. We are all different and what works for one person may or may not work for you. So hang in here with us and learn all you can about what others have found that has made a difference for them.

I also hope that you will tell your parents about this FM support group and even let them read about this. Perhaps this will allow them to understand more about what you are dealing with.

Know that you are not ALONE. It has been reported that there are over 5 million people who suffer from FM...and there are things that will help you cope better. You just have to find what will work for you.

Learning how to pace, pace and pace even more will help you. Also trying to keep your stress level low is a good thing as well. I know just how hard this can be though.

Chronic fatigue is a hard illness to deal with and I am still trying to find something that will help me with this. I have NOT found anything yet that has made a difference yet but I am sure that there is something that I have not found yet.

I hope you will continue to post here, ask questions, make comments and/or suggestions...Please know that we all understand the way you feel. Most of us have been there, done that and we know just how hard things can be for a person.

We, FMers, must keep on keeping on. Things will get better, with time. I hope your parents will take the time to learn more about just how this can affect a person's life.

Take care and good luck.


Zetty91 responded:
Hi, I'm in early 20's too ... And understand how you feel, and you are not alone! Sometimes I'm ffeeling bad for unable to do laundry on my own even people around me can do that without a sigh. It consumes time for me to do even a simple task. But it's ok, I'll ask help from friends because I don't want to stress up myself and think about what I am not able to do. I know it's hard to neglect and not think about it, but try to look on things you able to do. Still able to breath, thanks and praise Him, still able to see, walk, blink our eyes and many more. Eventhough we are a bit slow but we still can move compared to those paralyze. Sometimes it's small thing for us but it is something someone praying for.

I'm just sharing my experience on how to cope with FM problem and still fighting and regain back my spirit and strength. And now I'm having a week off from lecture and etc. Now Im just rest, sleep ,doing a light exercise and enjoy life without worries about assignments, reports and so on. I need to do this otherwise it will affect more. College life is quite hard when there have too many stairs plus with packed schedule. Between lecture period, I've always experienced severe weakness on both legs, arms...let say my whole body feel weak and fatigue, at that moment i just thinking of bed, i wanna sleep but my inner self said "you need to fight, or else you'll left behind" .then i still attend lecture, try to focus. I've tried my best and leave the rest to God. But sometimes , fatigue becomes unbearable, then i just stay and have nap at library or go back to have a proper rest.

I'm sure, you are a strong person for be able to stay fighting to do things you wanna do. I know sometimes you feel exhausted and tired, do it step by step. Don't force too much, enjoy every bit of living. Enjoy the things you still can do. You are strong, you must to beleive it! You can fight, you must to beleive it! Ask God to send us and be surround with kind-hearted and helpful people. God will, He will ease our way. Have faith!!! All the best.

Lotsa love, Zetty.
fibroinsd responded:
Sorry you are struggling so...but there are things you can do..Not sure what you are doing..

As others have have your vit D and vit B levels checked..

There are medications that might help..I know Cymbalta did help me for awhile..and I also have taken vitamins..Also, stretching is really important...

There is a section here called tips and resources..look for the member toolbox..things that have helped us...It is always a struggle..but we have to do it..

Good luck..I hope we can help you find some things that will work for you..

Let's put the fun back in dysfunctional !- Mary Englebright