Only You Can Help Me

Discussion in 'Fibromyalgia Main Forum' started by dorothyr, Dec 18, 2008.

  1. dorothyr

    dorothyr New Member

    I am going through some rough times right now. I have had fibromyalgia since I was 18/and am 46 yrs old now. Basically, I have accepted it, and learned to live with it,at least to the best of my ability.But, Lately, I just feel like no-one understands me. I try so hard to be positive and stay in a good mood and do as much as possible,but I haven't been able to do that for about a month now. I would actually like to lock my doors, not go to work,answer my phone or deal with anything or anyone. That is very sad to me, but I think I am just tired!
    Tired of people expecting too much from me, even though they know what I am going through. I know they cannot truly understand, because they have no idea, besides what I have told them, how it really feels. That is why I say, only you can help me.
    I just don't know what to do anymore. I have been dating a man since May 28th, and he was wonderful to me at first. As the months have gone by, he is expecting to much from me, and doesn't seem to have any compassion anymore.I Don't want pity! that's for sure. I just need him to understand that sometimes I cannot force myself to pretend I am not in pain.
    That's usually how I deal with it, but lately I don't have the strength or the energy. He said he loves me with all his heart but he actually said to me that he is young,(only 3 years younger than me) and he feels like he deserves to have someone healthy. He complains all the time,about his back hurting him and does less than I do.I had him read the letters on here, so maybe he could better understand exactly what I am dealing with.He read them and said he understands now, and he will try not to upset me with rude words or actions, but really nothing has changed.
    My boyfriend, family, friends and co-workers are all expecting too much and making me feel like giving in and admitting I have fibro and can't keep up the fasad/and just living my life alone, then no-one would have to deal with me or try to understand anymore. Even though that is not truly what I want, I just don't know what to do , how to act or how to get past this anymore. I am usually a positive person, who is thankful for what I have in life, and try my best not to let fibro win, but I'm wondering if it has finally gotten the best of me? Please help!
  2. Jgavi

    Jgavi New Member

    Hi, what your going through is what most of go through, its a disorder/disease that is
    something NOBODY will really understand unless they have it-

    I call it the ISOLATED DISEASE-

    Most people who have a chronic illness and not just FMS go through this-
    People who are not sick dont want to be around sick people, we slow them down and
    they cant grasp the entire load we carry.

    All you can do is change your actions to cut down the stress on your body and mind.

    Most of the people I know like myself lead a new life of doing things alone, if you want a realtionship with a someone they would have to be super special to stick with you.

    Most can not, I woulndt put myself or another person through my chronic pain life.
    I would be asking for a miracle thinking they would understand me 100%, not worth making my life worse trying to convince the person what it is REALLY like.

    It seems you need to change some actions in your life,,, sorry you are going through this but a realtionship is hard enough to go through being healthy but to toss in a illness is placing way to much hope for a happier life.

    Bad news I would say...but thats the reality of this world of pain we live in,....
    good luck with your future.............Gavi
  3. Catseye

    Catseye Member

    Have you considered intestinal hyperpermeability as a cause? See It may be a lot of info and overwhelming for you at first, but take your time and study it carefully. There's no reason you have to live with this just because regular doctors can't fix it.
  4. DeborahLynn

    DeborahLynn Member

    It will only hurt you, as it already is. There is always hope! Don't give up in despair. I am mostly housebound by FMS and ME/CFIDS, but I have a wonderful husband and a caring family, all who support me, help me, and love me no matter what. Even if it feels like there's no one left in this world who understands, the Lord does! He has been my Lifeline and Sanity; He gives me self-worth and purpose. Even if all I can do is lift my head all day, I know I am worth much because the Lord loves me much, and He does you, too!

    My head is super foggy, and I can't think clearly; but I just HAD to write a couple of lines to tell you that there IS HOPE out there! Don't give up! I've found a meaningful life with being mostly housebound and sometimes bedridden, and you can, too. I do a lot of praying, and it helps me tremendously! The Lord LOVES YOU!!!

    I will keep you in my prayers; sending lots of love and hope across the miles to you! Debbie
  5. babyk902

    babyk902 New Member

    Im in a similiar situation, but i have cfs instead of fibro and unfortunately a boyfriend who doesn't completely understand.. i've been about 65-70% functionable since i've met him, the year before that i was completely bed-bound and had chronic swollen glands, fevers, headaches, strep etc, now i go to a cfs doctor on a regular basis so its really just the fatigue im having a hard time coping with, so he doesn't know how sick i truely have been in the past and how real this disease really is, he's only known the "tired" me, who has infections here and there who goes to the doctor every 2 weeks, which makes it so frustrating for me. he's seen the "me" who has put up with this illness, tried to put a happy face on, fortunately able to work full time, and tried to get on with my life, with as little discussion and complaining about it as possible.. so i know its hard for him to truely understand, like it is for anyone to understand especially your boyfriend as well.. don't give up on him, sometimes it just takes time for people to really see how sick some of us are, and that this is NOT the way we decided to live our lives, since we had no choice.

    no matter what everybody tries to do their best with this illness but it is inevitable to feel the way that you do, and i can't blame you bc i feel exactly the same sometimes, you just have to keep thinking positive, eating well, and having hope that there is something out there that will one day alleviate all of this pain that we're all dealing with. i hope everything works out with you and all of us are always here for you if you ever need anything, feel better!
  6. dorothyr

    dorothyr New Member

    I just wanted to Thank everyone for your caring replies to me! I woke feeling a little better about things today, and was anxious to see your advice. I am thankful for this site because I do know that you truly understand.After reading your advice, I realized that I have to change my way of thinking that I have to pretend I am not in pain. No wonder they don't understand. When I need time to myself to cope, from now on, I am just going to tell them, and if I need to stay in and sit in my chair all day, then that's what I have to do.I always thought and felt like that would be letting my illness win, but in pretending the pain wasn't there, was actually hurting me more, by making my family unaware and by overdoing as I always did. Maybe if I am a little easier on myself, my family and boyfriend would be too. I hate living with this because I hate to sit still for too long, and am a little ocd, so I hate when my house is messy and I don't have the energy or strength to clean it, but I guess I just have to face it that it will get done eventually, and I need to stop hoping everyone (the normals) will understand.If they don't that will have to be for them to deal with,(not to sound cold). I need to just keep reminding myself that God has a plan for all of us, which is one we may not fully understand. As for my boyfriend, goinna back off and let him have some time to decide if he really wants to continue a relationship with me and my illness.I never really put on a front with him, told him about it right away, but pretending sometimes that I was not in pain, and overdoing it, was making me worse, so if I stop doing that, hopefully things will get better. If not, then I will just have to accept that he was not the right person for me.

    Thank you everyone with all my heart!!! Thanks for being there for me and giving me the advice to get my life back into living and being happy for the gifts God has given me and not dwelling on the illness I have.


    Dorothy R

  7. wendysj

    wendysj New Member


    I'm sorry you are feeling the need to be isolated. I have had those thoughts lately too. They are brief thoughts but they are there. I always remind myself that my life would be empty without these peope in my life. I know they worry about me, don't know exactly what to say sometimes and get extremely frustrated because "there is always something wrong". I get frustrated too, so I understand when they say that. When they don't know what to say, I usually don't know either. I worry about the people I love too, so I don't feel guilty that they worry about me.

    I have been with my boyfriend for 8 months now. He is wonderful - but not perfect. He says things sometimes like "it's a lot to deal with" referring to my health. Well, it IS a lot to deal with so I can't get upset about him saying that. He is without a doubt the greatest boyfriend. He is just the man I've always wanted... but he isn't perfect and neither am I.

    You know from past boyfriends if this guy you're seeing is good for you. I'm sure you've realized in the past that the man you were dating wasn't quite right for you... We all have. You need to really be honest with yourself and you will discover you know what the answer is with your current boyfriend. You just have to be strong enough to do what is right for you.

    Good luck with everything... We're always here to listen.

    PS I am taking 20 Lexapro mgs to help with anxiety and depression... It hasn't changed my personality or made me feel numb. It did make me less anxious.

    [This Message was Edited on 12/19/2008]
  8. Janalynn

    Janalynn New Member

    Glad you are feeling a little better this morning. Sometimes we need to 'sleep on it' to get a little different perspective. I always remind myself, that the great thing about life is that every 24 hrs we get to start a new day! How wonderful!

    You can't pretend you're not in pain, but there are ways to cope. Sometimes we all need time to ourselves. I've been married for 22 years. There are still times I wish (don't truly) that I was alone so that no one had to see me laying on the couch. It just adds guilt. But ya know what, no one else cares that I'm laying on the couch, it's just me and my own guilt. I also have a very supportive family. When they know I'm having a bad day or week, which is almost always, they almost feel worse for me than I do because I'm used to it. I just say "it's okay, I'll make it through, it's the way it is". For me, the physical part absolutely sucks, but the emotional part has been much harder to deal with.

    I take ONE day at a time. I NEVER look further than that. I don't know how I've given myself that gift. I do not dread tomorrow EVER. I still carry the same dreams for the future I always have because I do believe that I'll find ways to cope. If I need to rest, I rest. If my house isn't perfect (I love a clean house) well it has to wait. I'm learning too.

    It IS hard for others to understand. Compassion is what is needed. Recently my sister cried to my Mom when she was sick, body aches etc. and said she couldn't believe that I felt like this most of the time. When you find a person who has compassion, you've found the right person.

    Think of all of the seriously ill people out there, the seriously disabled, many have life partners because they feel they are worthy like anyone else. We are too!
    You still have lots to offer - so what if you don't have an energy level of 10, or need to rest in the middle of the day, or can't clean your house every week. Is that really important? You can still love, still talk, still listen, still offer all of the important things in life.

    I don't know why I have this. But I do believe that there are hidden gifts that I will someday realize. I've always been a positive and grateful person like you - maybe I will be even more grateful, more appreciative, maybe I'll help someone, meet someone - who knows. I do know that I would much rather have this than anyone else I love. I may not beat this, but I'll handle it.

    Life may change, but it can still be beautiful. There's been a fork in the road...instead of sitting on a rock, stand up and see where it leads you in love and life, see what beautiful trees are ahead, what beautiful scenery. We never know cause many times we don't think we should be headed that way, don't want to, are fighting it or just plain old mad - all understandable.

    We are all here for each other. That in itself is a gift!
  9. Nanie46

    Nanie46 Moderator


    I noticed you live in PA also and are about my age...I'm 48. I have had FM for 22 years....very classic symptoms.

    Recently after noticing alot of posts on this board about people with my same symptoms being diagnosed with lyme, I started some research. PA has one of the highest incidence of lyme disease in the US.

    I have learned some very astounding information in the last couple months. I always thought that if you have lyme you must have had a bulls-eye rash and have joint pain. That is totally wrong.

    I am now convinced that everyone with FM and CFS should have a Western Blot from Igenex lab in CA. Lyme is a clinical diagnosis based on history, symptoms and sometimes supported by labwork. Other "regular labs" have been shown to be unreliable and they don't test all bands.

    I know you may be thinking that this doesn't apply to you. But remember I thought the same thing. I am going to have my Igenex testing done in the next week or so.

    Please take the time to read some very informative information from lyme experts. Lyme has alot of the same symptoms as FM, CFS, MS, RA, etc.

    Dr Burrascano (a lyme expert) says that all people with FM and CFS should have testing for lyme. It is a waste of time and money to have a lyme screen or have the western blot done at a regular lab.....I found that out the hard way.

    There is a possibility that this could change your life for the better. Dr Burrascano says that he thinks that only one in every ten cases of lyme has been diagnosed and reported.

    I am listing the best articles/papers that I have read during my research:

    "Advanced Topics in Lyme Disease-Diagnostic Hints and Treatment Guidelines for Lyme and other Tick-Borne Illnesses" Sept 2005...found at:

    "When to Suspect Lyme" by Dr John Bleiweiss found at:

    International Lyme and Associated Disease Society Guidelines found at:

    I strongly urge you to read these 3 papers/articles. Be open to the possibility because at this point you have nothing to lose and maybe something to gain.