so upset with family and people who will not even consider

Discussion in 'Fibromyalgia Main Forum' started by rosemarie, Aug 19, 2005.

  1. rosemarie

    rosemarie Member

    I havehad it this past months. Nothing makes me more angry than being told that I am taking to many pf my pain meds because i HAVE HAD SEVERAL GOOD DAYS AND NOT NEEDED AS MUCH OF MY MEDS . So suddenly I have a stock pile and I am going to take tham all at once and over dose!

    I am very careful with the meds that I take as they are Mscontin and MSIR . MScontin is 100 mg that I can take up to 5 x a day I have been trying to take the least amount possiable for the pain I have, I talked this over with my doctor before I tryed doing this as I do with all my meds. And I hvae been able to take a few less pills , most days I take between 2-3 pills but when I have bad days and I am flaring I will take up to the 5 pills but, but I don't like takeing that much as I am afraid that I will be a clutz and fall and shattersomething else and there wil be nothing to ease the pain I am in. { I shatter my left wrist a year and a 3 months ago and it now has a plate and 8 screws in it to hold it together and it hurts like heck some days}

    When I fell and shatter my left wirst I was given 500 mics of fentyanl and 20 of versesd and it did "NOTHING" al all to ease this horrid pain as they tried to set it. And then to have major surgery a week later and thenkfully the doctor I had was great and made sure that I was comfrotable with the pain and it I needed more than " normal people do I could get it"

    My husband does not believe in fibro or Chronic meyofacial pain syndrome. These are not real because there is no was to test for them and lupus in not real either as there is not a test that shows apostivie test. So because I get tired every day and I will be laying on the couch resting and all of a sudden my body wil jerk and I wake up and then I will doze off agin and as I start to relax my body jumps and I do this for about 10 minutes and then I really am in a light sleep I can hear the TV but I can't tell ou what has been on it at the time. and then about 9 pm I am watching tv sitting up and i will just doze off and I will start that jumping stuff again and I will finish watching the show and then take a warm bath and my night time meds and go to bed and I wil be up before 12 midnight totally awake this has happened with ambien too. So I am awake but sleepy till 2 am and then I cna go to bed after taking the last dose of pain meds. And I will toss and turn and finally sleep. But I have a tough time waking up so my family believes that I am over dosing on my pain meds because I am finally sleeping.

    My husband and two older girls do not believe that what I have is real. I also have degenerative disc diesase, spinalstenosis, two bulging discs both knees have arthritis in them, left wirst has nerve pain from being shattered and it all so has atrhritis in it. so I do have "REAL" reasons for the pain I have all the time. But how I feel is always the fibro nothing is ever said aboaut the rest of my chronic pain issues just the fibro and how it is not real, and how I can be feeling so lousy and suddenly I will be awake and will be albe to do things like house work.

    FAmily , friends don't understand it , every one has pain and they don't all take the a" Narcotic pain meds that you take" I am comdemed for the pain I have and for what I take. Someone else can have fibro and they are believed but they can work and it does not make them have bad pain or enough pain so they have to take narcotic pain pills.

    So I am condemed for taking narcotic pain pills. I had pain in my life all of it. MY girls remember that I was on tylenoyl #3 for pain for headaches adn female problems . I got married in 1980 and in the first 8 years I had four laperoscopies and two babies. I had a total abdominal hyesterectomy in 1990 and it was bad the surgery took over 6 hours becuase I had so many cysts on my overies tube and there were other complacations too. So in the years since then I have had my right knee scoped three times, I and I had more female surgery a year and a half ago to fixz my bladder and some other things, I had problems then too and I was to spend 2 days in the hospital and I ened up spending 6 days in there, the surgery lasted 6 hours and I was in so much pain and I was left alone and it was so bad becasue of the hospital I was in the nurses did not resopond to me because of the amout of pain meds I took. So how could I be in that much pain.

    Like I siad the family and friends don't belive in the pain I have I am faking it just to get attention, like the time I went to chruch useing a cane because it was slippery outside adn I did not want to fall but accourding to my husband the only reason I took it was so that people would notice me and comment on me and tell me how sorry they are tha I am hurt or not feeling good , just like I want people to tell me " What did you do this time?

    I really dont' want much , just some understanding from my family some one that really believes in me and does not think they know how I feel or that I am taking too many pain pills when I have not taken the amount that I can take.


    sorry for the novel I just and upset that no one understands me . NO one believe that this pain I have every day 24/7 is real and not fake. Why dont' they understand it or is iit that they don't want to think about it. IT is ok for dad toh ave diebeties but mom can't have fibro and the other chronic pin issues but dad only takes insulin and mom takes hard narcotics. SO mom must be jjust wnating the pain meds , one day she can clean the house and go up town so shop and the next day she is in bed because she is too tired and is not feeling good. EVERYONE knows that all moms always clean the house and fix dinner and do the wash and itis not a big deal when they get up and do that.

    Maybe it is me? I don't know, I have stopped telling them that I am in pain although they know it from the way I am walking and when I stand up and can't move for a minute as I am so stiff and in pain. But I don't go around and tell them I am in pain and I don't feel good , I get up as early as I can and I do what I can everyday.It iss not like I have small kids as my girls are all not living at home one is married with a 5 month old baby { My first grandson and I love to hold him but I can't pick him up as he weighs 17 lbs. but I love to play withhim and he accepts me because he is being loved} I hvae a doaughter getting married in a few wekks and one is living back east as a nanny. So what they think should not matter to me but it does. I feel every thing they say that is negitive about me, aboaut I don't wake up in the morning, that i am taking pain pills that I really don't need. Or I get upset when my hisband thinks that HE knows what I think and feel better than I do and he has NO CLUE whow I feel. Or if I feel anything. HE does not know who I think or what I am thinking either.

    Well now that I have complained aboaut everyone and how they don't want to understand wht I have I will stop griping about it and I will try to let it go and quit trying to fix everything with my family and get them to understand how I feel it just is not worth the stress it brings with it. I have quit complaining about I aaam hurting as it only irrates them so I will just find something I can do and make it look like I am always happy and fulfulled. I do enjoy painting { decertive painting /tole painting it is alot of fun but like I said I am gracefull and tripped a few days ago and pulled the muscels in my shoulder and it is hurting really badly but I have not told my family that I hurt myself once again.

    Thanks for letting me gripe about everything. I really am just stressed with all that is going on as my husband is working 12 hours a day and with the diebeties he is onery all the time and gripes and snapes at me it I speak so I don't.
    Thanks foreverything I could not stand this life of painwith out all of you.
    Hugs to all
    Rosemarie



  2. ldbgcoleman

    ldbgcoleman New Member

    Sorry you are having problems! Tell you husband there is no test for MS or Lou Gerigs Disease, And until about 15 years ago Rheumatiod arthritis. 60 years ago there was no test for cancer. Did that mean people did not have it?? They can't even figure out if milk is or isn't good for you! Has he been to a Drs appt with you?? Maybe if he hears it from the horses mouth! Please take care and remember the people here understand! Lynn
  3. over50

    over50 New Member

    we cant waste our precious time and energy on them.I think at the top of our board,there is a letter to normals.
    My husband doesnt even care to read it. We have to be good to ourselves,I know you hurt and I know your tired and doing the best you can,and I know there are plenty of people here who know too!I am glad you can just unload,we are with you.
    ((((hugs)))
    Linda
  4. JLH

    JLH New Member

    I hate to hear that you are having so many family troubles.

    It is so hard for others to understand how we feel. I have told my husband that he doesn't understand, too. And, he has told me that I don't understand how hard it is for him to quit smoking. When you think of it, it does makes sense. When you personally do not have the experience with the problem, they is no way possible to understand how the other person feels.

    Maybe he seems so uncaring because he is tired from working those 12 hour days. When you get older, those long days are killers, too. Also, with him having some health issues, he probably doesn't feel good either. He must not be feeling that great or he wouldn't come home and gripe and snap at you.

    I think your girls are just concerned about your health. They have it in their heads that the amount of pain meds that you take was the cause of you falling, and they sound like they are on a mission to get you to cut way down on them, or stop them altogether. They just want their mother to be around a lot longer for them. It's because they love you so.

    I hope things get better for you, and that you start feeling better, too.

    Take care,
    Janet
  5. 69mach1

    69mach1 New Member

    i too had a very critcal husband, told me i popped pills all the time. but in my situation that was hi guildt speking because he was having an affiar. so anything to make himself feel better.

    we are now friends and a little more. not sure where it is going. but finally he met a neighbor girl who has it and she over heard him talking to me on the phone, well she filled him inb. then he was watching a t.v show about at his house and called me up to tell me about and he didn't really understand what was going on with me. in may he bought me a book about natural cures.

    my poor son, called his grandma up during my diovrce, to tell her mom couldn't afford rent wanted to know if she could help, she said if she needs money to go get a job, he said mom has to go in for surgery next week. cody didn't want to move back to michigan to stay with family, while we weren't getiing child support from cody's dad.


    well theat was my e-xinlaws and now i guess they thought maybe my father in-law had it. i read a book at there house this summer.

    if is frustrating that they don't understand.

    but when your daughters get it then maybe they will understand what the hceck mom was going through all of those years.

    best of luck and take what helps you

    jodie
  6. rosemarie

    rosemarie Member

    I know that I am stressed out with all that goes on in my life, My husband is having a yard sale and he still has to deside what he is going to sell. And what he is going to price it at. And I haev infromed him that I AM NOT getting up at 7am to assist with this advendure. I have enoug Barbie stuff and dolll clothes and easy bake oeves that , I that I could put out to sell for $5.00 and I have lots of precut wood for tole painting and in this valley half of it tole paints so they could make up the pattern for the wreath. IT is just christmas trees and a reindeer made in to a wreath with the trees on the bottom and the deer on the top but it never came with a pattern and If I had know aboaut this " Yardsale " I would have coppied the patterns that I designed and charged at least $8.00.

    Now back to my question is it possiable for our daughters to get fibromyaligia? I have been having leg aches from the time I was 3 yrs old. I had knees that always hurt, I got headaches with every period and every month was horrid filled with cramps and I was in so much pain that I could not stand it all the time. AT 34 I had to have a total abdominal hyesterectomy with removal of my tube, overaies, utereus, and appendix. I found out that I had a cyst on my left ovary the size of a large hens egg, it was filled with every thing but eggs and full of infection, both tubes had some eggs and mostly cysts that were bad and filed with a greenish fluid.

    They also took out my appendix as it was infected. Before the hyestercetomy I had retrograde menstaratation, cysts that ruptured adn bleed alot and I was loosing blood and had blood transfusions three times. I hemoreaged with the first daughter adn lost so much blood that my hemocrit was at 18 { NOrmal is 40} I get three units of blood and still was weaker than a kitten for weeks.

    I had to have more female surgery to pull up the bladder and fix a cystacele adn rectrocele and it took over 6 hours. and I felt like death warmed over.

    I remember the day that my daughters started have that monthy thing they all have had bad cramps, My middle one had what looked like a bite on her breast and it turned out that she had sudomonsis and was hooked up to a IV and hep cap for 7 days and had to have it drained and it was so infected that it was so bad she was so ill. She went from having NO boobs to having boobs over night and now she has polycystic ovarian syndrome as does her older sister. The youngest is ok ,she had bad cramps and leg ached too.

    So with all this stuff I have I want to know if it is possiable for my daughters to get fibromyaligia? My oldest has legs aches all the time and has allergies.And she complains of having pain in her muscels and legs and her joints and does not feel good. AT all. I thinks that I complain all the time but she complainns about how sick she is andhow she does not feel good and whines about it all the time yet I say anything she glares at me.

    But it made me wonder if my daughters could on day have fibromyaligia? Could they go what I do everyday? I worry that they will have NO clue what is happening to them as what I have is all made up and I am faking it all the time.

    My hudband is stressed and takes it out on me. I said something to night about him changinga light bulb and he looks at me and sid you could have at least asked nicely and asked it I had time to fix it and I would have. He tales everything out on me and expects me to shut up and take it. So I am really confused about it. I don't know what to do about hima nd his attidue and why he treats me like he does, if I stand up to him I get chewed up and spit out but i am expected to bow down and accept his moods and his stress and crankyness all the time and never mention it.

    Does he not know or get it that I don't like haveing to ask him for money for the doctors appointment an dbuying my perscriptions and he makes me fel guillty ooover it all the time if we didn't ahve to pay for your screwy doctor we could havemore money and he shoud send you to therapy for exercise too. YOU know if yo lost at least 40 or more pounds your legs and back nad knees will
    feel better.

    All of my girls have had period problems and aot of cramps and cysts ,Anyone of them could lay down in the afternoon and in minutes be asleep and sleep for hours they are alwaays tired. I understandit with the youngest daughter as her son is almost 5 months old but she too has bad cramps and head aches and feels horrid during that time of month. I worry that they will get this dd and blame me for giving it to them and not telling them about it and how real it is.

    I know that my middle daughter wil have a tough time getting pregnant because of the polycistic ovarian sysdrome and it makes it so it is hard to conceve and she is already 23 yrs old and is not married or really dating, like I said at 13 she had a breast infection like mastitis and it was much worse ahd she had a temp of a 104 for 2 days and was in and out of it. and her breasts were so hot that as she said you could cook on them as they were so hot to the touch.
    I know taht they don't belive that fibro is real of that the chronic meyofacial painssyndrome is real either but when they get it they wil not know what to do. becasue of me and my taking paim pills they don't belive in them and I really worry that they will suffer needlessly because of how they feel.

    It is really scary that they could get this and as a mom I want to protect them fro anything that could harm them but I can't stop them from getting htis. there is nothing I cna do about it, I pray that they don't get it but it is not looking good for them at this time. MY girls are good kids even though they are 20,23 & 27 somedays they don't act like adults. like tonight I called the youngest to see how the baby is as he has a cold and she says to me" HI mommy I love you and I will call you tomorrow ok? I love you mommy see ya love you and hung up and she is 20 . IT is so hard to let them go from the children they were. I wanted tohave them grow up and want to spend time together and hang out together and let there kids play to gether and like it, and that is not want they want. ONe is mad because she asked her sister if she coudl borrow her wedding veil right after she had the baby in maarch adn the youngest was really out of is as they almost had to to a C-section and she was not thinking straight and suddenly my oldest is telling me to call her and have ME ask her if she could use the veil and I toldher that if she is old enough to be getting married then she was oldenough to call her little sister and tell her that it would mean a lot to her to beable to use her wedding veil as the some thing borrowed instead she said so can I borrow it? and she said i am picccky about it so NO I dont thing so.
    IF you have asked me when I was awake and acted like it was someting special I most likely would have let you but you were not even engaged yer and all I was hearing was when we get married or if we get marrid so she felt if they couldnot make up their minds then they were not really serious about usuing the veil and it was months before she called her sister to ask for the veil.

    I wory about my daughters and I want them to have the best lives without this pain and fatique that I have. I want them to be healthy and happy and love each other and respect each other and to be there for each sister if they get this adn most of all to believe that Fibromyaliigia is some thing that it REAL not fake, made up , and it hurts liek crazzy and makes you feel like you have the worst case of flu you have ever had and you ache all over x10 all the time, I want them to look at me and say MOm has this and we may get it so we need to keep in shape and keep our lives as free from stress as possialbe. I have asked the oldest to find some ting everyday that makes her smile. Or think of 3 thinnng in a day that are positive and she can't think of one. So I lookd at her and said 1. YOU have a good paying job.
    2. you have great insurance. #. your in love and marring a man that has loved you for most of you adult life. But to her it does not look that way she only thinks in teh negitive we don't have themoney we need for the guest book and ring pillow and we don't ahve this or that.

    When her dad and I got marrried we got our own apartment and lived with her as she was 2 at the time. WE did not expect anyone to support us at all. We were the adults adn had a child and we did what we had to do even if it meaantgoing without things for us. I just want her to liek herseelf and to be happy with her marriage, she is not going to have the greatest MIL .

    HEr soon to be MIL does not like what her feiance is wearing for the wedding. Sshe fells that he shoud be in a tux or a new suit instead he is wearing a cream colored dress pants witha bright blue shirt on it or maybe the shirt that has a strip of a bright pink so that it looks like it goes with the pink of her wedding dress. his mother has made a BIG deal about what he is weaaaaaring and has said that it is not right to get married in casual wear. They wil be going to see his family every other weekd end as that is what he does so that they can take his son to see his grandparents on the week ends that he has him. I don't care what they wear along as they truely love each other and want to be marriedd to each other adn to make a family with his son adn to love that boy like her own no matter what his mother feels about it.

    Bbbut I am afarid that the girls will get fibro and get sick with this and I pray that if they do they will be able to do lots of things and keep on working al long as they can. I can't work any more and I Never will be ale to do it agein and i miss it so I am going to do more told painting and tryh to sell it toearn some money and to amke me happy and content with myself and not like there is nothing to be happy about when you have fibro when ther is so much that you can be happy about. I know taht some peole can work and some can't some don't need meds and others can't work .But woither way learn how to be content and happy with your life I amlearing how to do this andit w ill take alot of owrk for me but I will do it so that I don't bite off my husbands head off when he speaks to me.

    I don't want them to have this fibro oor anything to do with chronic pain. i love them and would do all i cnal to save them from getting tis dd and i can't stop it but i can try to get them to read about what fibro really is.

    I am sorry that i am rambleing along going from subject to subjsct. I love my girls and i want them to be safe and not get this illness BUt no matte what happenes to them I wil alwaaays love tham with all my heart and soul. I Love ethem more than I have words for.

    Thanks for lettingme vent and wine and just get the tings off my shoulders . Since i cna't get the understanding from the family to keep on being happy and to fell that I am with them al the time adn that I love them alwyas andi always will.

    I pray that the wwill not get tis diesase that i have.

    Thanks for understnading me and all that.

    Bless-you always,
    Rosemarie
  7. matthewson

    matthewson New Member

    There was an article I read that said that the chances are greater that if one family member has FMS, then their children are more likely to develop this. I will try to find the article and post it.

    I think there is a genetic component to this. I pray that my daughter never has to go through this. She has already had some chronic pain in her back and the Dr. finally put her on skelaxin as needed. She just takes it if she is having a lot of pain. I pray that is not the beginning of FMS.

    Take care, Sally
  8. Adl123

    Adl123 New Member

    Dear Rosemarie,
    This must be so hard for you to bear! You must be so angry and frusrated. I'm so sorry that you are in this situation.

    I don't know why your family is like that. I do know that sometimes people just haven't developed the capacity for compasision and I know that some people become so afraid when a loved one is sick, that they go into denial.

    Whatever it is, Please know that you are in my thoughts and prayers. I believe you, as do, I'm sure, the others on this board, and we are many. You are not alone.

    I feel lucky that I have been able to distnce myself from those in my family who cause met the same type of hurt. The loneliness is nothing, compared to the pain of being around them all the time.

    God bless, and a big hug,
    Terry

  9. auntcon

    auntcon New Member

    I'm so sorry that you have to go through this without support of those you love.

    My husband and children are very supportive. Some of my siblings think I should exercise more, get out more, etc.

    I to don't take all of my pain med if I don't need it. Although my DR said to keep a level in my system so that when it wears off I won't be laid flat.

    Anyway, our local fibro support group is great. Nothing is like talking face to face with someone who understands you. We also have DRs come in and explain pain, sleep problems, how stress effects us etc. And you can take your family so they can see how very real this dd is.

  10. petesdragon

    petesdragon New Member

    Several doctors have told me it is better to take pain medicine before you have the pain. So take what you are prescribed and if you think you need less talk it over with your doctor. The new pain initiatives say if you are in pain your doctor had jolly well better give you medicine for it. Now a new one says people in nursing homes who are in pain must be given sufficient pain medicine to help them. Wow, wonder who thought of that!LOL Be aware, though, that some medicines cause a rebound effect so if you always have a headache three hours after the last dose it could be the medicine causing the headache so talk to your doctor about switching to something else.