what my familly thinks of me......please help

Discussion in 'Fibromyalgia Main Forum' started by misskittycat01, Mar 6, 2007.

  1. misskittycat01

    misskittycat01 New Member

    Hello, I am new to this board. I am a registered nurse,now on disability as related to the fibro and a whole laundry list of other maladies. The problem is this: I am one of ten kids, 5 girls... 5 boys.. we all live in the same state and city all except for one brother. My mom is 82 years old and has some very serious health problems and has been in and out of hospitals/ nursing homes. My sisters ( three of them,) and a brother all seem to think that I am " faking" pain and faking being sick ( never said that I was)They get angry and upset with me if I tell them that my arms hurt ( I have big painful lumps on both upper arms) I had surgery for a torn rotator cuff on my right shoulder last year- and that only made things worse. My family talks about me behind my back and it tears me apart because one sister ( works as a sect. in a mental hospital) and thinks that she knows it all told another sister that a psyc. doctor told her that fibro was a made up disease that doctors gave to people that are chronic complainers... she told that to my mom and other sisters and they all had a big laugh. It took me 2 years just to get the disability payments started- it was not the back surgery,not the osteo in both knees, but the FIBRO that got me approved... I am sad all the time because of the way they treat me. Because they all work they expect me to go to moms and cook and clean her apartment and bathe and dress her... and I cant... help! any advise would be most helpful... I really dont have anyone to talk to...
  2. Shalala

    Shalala New Member

    Yes Miss Kitty, I can totally relate. I was sad about the way my sisters have treated me and now I am estranged from my sisters over my health issues. My father and son are the only ones who speak to me but they think I am "in the wrong". I am the youngest of 3 girls. Mom passed away almost 2 years ago. Dad will be 80 in April and is lost without her. He is really upset over this estrangement but you know what ... he is the only one. I love my Dad but I am not going to act nice to these witches. I was hoping for the love and support of my family and I am not getting it. Last May (after a family vacation disaster) I finally decided that "toxic" relationships make us even more ill. I am not telling you to cut them off. I do feel your pain.

    (((((((((((( hugs )))))))))))) and best wishes
  3. pocahontas606

    pocahontas606 New Member

    happy b-day! read your bio.

    misskittycat - hope you are okay.
  4. misskittycat01

    misskittycat01 New Member

    I have said the same things... but you know, as soon as I say I can get along without them.. I get to feelng sad all over again.. one thing I have learned though is that stress makes me HURT much worse....
    ((((( sending gentle hugs back)))))
  5. lafont

    lafont New Member

    Hi MissKitty, I know how you feel. I had to stop working 6 months ago, because of fibro- I was A hygienist- the pain in my neck, arms, and shoulder was almost more than I could bare. But I kept pushing myself, I didn't know I had fibro at the time. I just wasn't getting any help with Dr's. I finally Had to ask to be check for fibro. Anyway to get to the point, I'm not a complainer, so my coworkers didn't know how much pain I was in. Well I finally had a panic attack at work and had to stop working. Every time I see anyone they say how good I look-(I don't look sick) so there for when they hear I'm trying to get on dissability they all think I'm just trying to faking everything. It really hurts to feel so bad, and not have people have any compasion and understanding. My mom also had to go in the hospital, and because I am the only one in town, I had to help my mom. I was Doing A lot, but it wasn't enough, and I kept hearing from my sisters I should be doing this and that. I kept telling them that I was not feeling good and I was doing my best, but they just wouldn't stop, til I had to get really mad and yell at one of them to(which I didn't like doing) make them understand how I felt. It's to bad people just won't listen to our pain. I really think this is the worst part of this illness-not to be believed or understood. Have you ever given them any written information on fibro. I did with my husband. That seemed to help him understand. Good luck, God Bless
  6. blkkat

    blkkat New Member

  7. Ginner

    Ginner New Member

    come in all forms! I will be your sister , or, do what I may do and just adopt another sister...ha
    You know, it is okay for me now. I think I have dealt with it this way: she doesn't understand,she doesn't have this dd.
    I have sent a letter, emailed her rather explaining fms, she chooses what she does and how she deal with this. I hope she comes around one day.
    I have to keep my spirits about me. I TRY to inspire if I have anything to inspire about...
    Those that don't support, they have just lost their sense of humor for a time maybe!!

  8. abbylee

    abbylee New Member

    Have you tried giving them one of the books that has been written about fms?

    Surely, after reading published books, some written by doctors, they will have to acknowledge that there is something wrong with these folks.

    Another option is to have a sleep study (if you've not had one). Many fms patients have a sleep disorder called alpha wave intrusion. If you're not familiar with this condition, it has to do with the (4) sleep stages that we all are suppose to go through.

    Patients with Narcolepsy, for instance, have a problem with REM sleep. They get no "good" sleep because within 10 minutes of falling asleep, they start dreaming.

    Alpha wave intrusion happens to fms folks in the deepest stage 4 (delta) sleep. Daytime (alpha) waves keep interrupting our delta sleep and our bodies need this sleep for them to be "restored" from our previous day's activities.

    When I had my sleep study, they found that I was in delta sleep for 20 minutes and alpha waves interrupted those 20 minutes 33 times.

    The doctor didn't say how many times I rotated through the 4 sleep stages, but we are supposed to rotate through them several times a night.

    If you have insurance, please ask your doctor to refer you to a neurologist for a sleep study. If you have this condition there is a medication that will help it. If you can take this medication it will help you get the delta sleep that you need, and it will help your pain and fatigue.

    Good luck (if you do this), and keep us posted!

    abbylee Oh, the point of all of this is that you will then have written documentation that something is wrong with you and you can share it with your family.

    [This Message was Edited on 03/06/2007]
  9. GigglePoet

    GigglePoet New Member

    can you tell me what that therapy usually costs?

    ~ GigglePoet
  10. GigglePoet

    GigglePoet New Member

    Everyone! I send my love and (((((((((((((HUGS)))))))))))))I hurt that there are so many of us suffering. Truly Christ suffers with us. We are all a part of his body. In these things we can truely understand his prayer " Father forgive them for they know not what they do" It is so hard to do this!I know it is hard for me. I know that we are given great oppertunity in our suffering in these way's to be given an oppertunity to forgive. I think of what Christ also say's when he say's When you have done it unto the least of these,my breathern, you have done it unto me. Picturing that in my mind helps me through all these things. My love to all of you.

    ~ GigglePoet
  11. abbylee

    abbylee New Member

    The appointment for the sleep study was $110.00. Interpreting the results was $1400.00. The medication depends on the dose. I take 9 mls. twice each night and my cost is almost $900.00 a month. The drug is Xyrem, the date rape drug.

    It is made in a lab, though, not on the streets, and is very safe to take. It's highly controlled, though, and is stocked by only one pharmacy in this country. It is delivered each month via FedEx and only you and one other person can sign for it.

    If it helps your pain enough that you can stop any pain meds that you take, it might be worth it for you. It has helped my pain, but not enough for me to stop my pain meds and since I take Oxycotin for pain with Oxycodone for break-through pain, those 2 drugs cost over $1000 (together).

    After $100 deductible for drugs, our insurance pays 80% of the cost. Once I've paid $1500.00, our insurance pays the full amount so by February, my drugs are free. Once we've paid $3000, all of our medical expenses are free for the rest of the year.

    If my husband ever gets laid off or fired, I'm up the creek.

  12. victoria123

    victoria123 New Member

    I can only offer sympathy & understanding.
    The worst part of having an invisable chronic illness & pain is that you feel nobody (& I really mean NOBODY)seems to understand. Initially you feel alone & isolated (even if you're married with children, you can still feel alone).
    It's incredibly hurtful & soul destroying to have people say you're faking it - especially your family.
    A friend of my sister-in-law who has FM told me she actually had to "divorce" her family ie. she actually cut them out of her life for several years. Now I'm not suggesting you do this. But I am suggesting you mentally & physically keep away from people or family members who say negative or hurtful things.
    Try very hard to spend time with those who genuinely love & care about you - friends who stand by you & accept your limitations.
    Learn to accept that this is the way it's going to be. You may not be able to change your current situation (other than improving your symtoms perhaps), you may not be able to change your residence, or your family, or your surroundings, but you CAN change the people you INTERACT with on a daily basis.
    You KNOW you hurt. You KNOW you're tired & can't find the energy to do what you would like to do.
    Talk to people in chat rooms who have the same problems as you. We truly understand where you're coming from, & most inportantly, WE BELIEVE YOU (because we feel the same).
    There are thousands of us in the world who you can reach out to & share your problems with. I'm from Australia. The next person you "talk" to, may live in the same town as you.
    Reach out to those who genuinely care about you (& care about everyone else who has chronic pain & illness).
    Best Wishes

    [This Message was Edited on 03/07/2007]
  13. momof471

    momof471 New Member

    It seems is a tough issue for almost everyone! My husband is supportive. Other than that no one understands or cares to understand really. I've learned to not say to much about the pain because no one really wants to hear it. If someone asks and seems interested, I might start to talk about it but don't you know they have the exact same thing and they do a certain thing and it goes away. If I do that it will be all better. I do know that I have to pace my activities and if something I'm asked to do does not fit in with my schedule, I say no. If I have an emergency come up and I have something else planned usually I have to cancel because the emergency wears me out. People do not understand this and that's ok because I have to do what I can live with. I have four children and my husband, so I have to do the absolute necessities first and everything else takes a back seat. Do the things you can do, such as spending time with your Mom. Things you can't, don't. To do this is hard and sometimes I feel resentful and alone, for this prayer works, as a poster above said, there is someone who knows our pain and it provides comfort for me.

    God Bless
  14. artyreader

    artyreader Member

    First of all, I want to affirm you for your courage and for showing how serious you are about your health by (what to others may seem small,but it's not) coming onto this website, among other things.

    I wish I had the magic answer for you, re: other people's views of you. I don't, and still struggle with that in my own life. But, here are two publications you may want to look at and make available to the people in your life:

    1)" But You Look Good--A Guide to Understanding and Encouraging People Living with Chronic Illness and Pain"
    from "The Invisible Disabilities Advocate" (Their website is
    www.MyIDA.org) This 46-page booklet is written for the people in the life of the chronic invisible illness sufferer. One caveat: The authors seem to be very religious, and mention their faith a few times, but they don't shove it down your throat--But 99% of it is explaining to loved ones how it is to be in the chronic illness situation, and what things to say and not to say,etc. You can order the book from their website. My only problem (and here, I don't mean to discourage you--I think it's worth it to try) is actually getting people to read it, even written in an easy-to-read manner, the go-go-go pace of most people I know makes them leary of commiting to even a short read like this--I'm thinking of just sending a page or two at a time, little by little to freinds and family,and see if they will nibble) But I think it describes very well the physical/emotional/mental quandary we find ourselves in, and helpful hints for those in our lives.

    Secondly, the "Arthritis Foundation" publishes pamplets, among them one labeled "Fibromyalgia", that gives what I think is a good picture of the illness to those who want to know more ( patients, family, doctors,etc) As far as I know, the Arthritis foundation is a pretty well-respected organization, and these pamphlet/booklets (16 pages). You can call 1-800-954-2873 or go to website.Best of luck!
  15. sammo

    sammo New Member

    im sorry to here about your unsympathetic family. i have just split from my partner after a 5yr battle to more or less get him to believe that i am unwell. he came to a neurology appointments and when asked did he see what i was discribing said no and practiacaly insinuated i was faking it all. he only believed there was anything wrong when after being unwell for 4yrs i pushed myself to go to the shops and fainted, but he didnt even pick me up he just kept sayin get up get up !! now he has gone its like the negativity is out of my life and i am able to take more control over my life again, im a lot stronger mentaly emotionaly and physical. it was as if when he was here he sucked the life from me but now i am coping better without him even though i convinced myself i needed him here to help me. i get a sence of achievment almost everyday from doing things for myself and everyday this makes me stronger. negativity is a big no no to people with me or fms and i had read this but found out the hard way. one day they maybe unfortunate enough to bare the same kind of illness we have and actualy stop dismissing it and actualy understand what we have to encounter everyday
  16. gurlinottawa

    gurlinottawa New Member

    I have heard this over and over and experienced it for myself. I am now only getting true support since I went to a rhematologist and got an "official" stamp of fibro. Until then my family just thought I was lazy too.

    My doctor who gave me this diagnosis even basically said, dont join a support group, they are filled with people who just complain and dont want to make changes. Granted I do understand it requires alot of strength and will to make the changes she spoke of. This year I did make those changes. And I did get much much better. I started taking Ametrypteline and eating healthy foods, reducing carbs and practically eleminating any processed junk foods. this has helped tremendoulsly, however, after Sunday, I am in a flare up mode even after doing all these things... mind you, I started feeeling better so I have been skiing, and had an accident and probably went to far.

    anyway, I digress. I went through the same thing with my son, and family and collegues and friends. Hold true to yourself. It is frustrating. My advice would be to take care of yourself. Do everything thats in your control to help yourself, like truly committing to only good for you foods, and if you are able some exercise. I myself joined a aquatherapy class in my community, the pool is 92 degrees sojust the heat alone is awesome and depending on my abilities that day, they have chronic pain classes, to aqua fit, to aquaboxing, havent done that one yet, but their is variation and it has helped tremendously.

    Dont let them drag you down. YOu know the truth, so do we. I find this board very helpful, and read everything you can about fibro. But i certainly think the right combo of meds, a good supportive doctor, good foods, and good exercise can then lead you to better living.

    Peace and strength friend

  17. misskittycat01

    misskittycat01 New Member

    To all: it has been a tremendeous blessing for me to have find this web site... but I have a burning question, and I am sure everyone has heard this before... but it seems that a common thread runs through this syndrome.... a lot of our responses to the " top 3 symptoms " was chronic infection, muscle pain and fatigue.... I am thinking about the chronic infections-- I just got over a really nasty bout with brochitits about 3 weeks ago, and now I have a cold and sore lumps on either side of my neck... and I am having a eally bad flare up right now..... my sed rate is always at least > 47 and when I ask my doc why --- well.... there is never a good answer.... so... I am thinking that if anyone thing causes/ triggers fibomyalgia- it has to do with infection... what does everyon else think .....
  18. misskittycat01

    misskittycat01 New Member

    since I have been coming to this board I feel so much better just knowing that i am not really alone and that i do have some one to talk too... I have even had a better out look with my sisters.... I know how I feel and I am not going to waste my time trying to tell them..... today it was very warm and my daughter and I went to moms and took her out side to sit in the sun.. my eldest brother showed up and we all had a ball laughing and talking about growning up in the 50's and 60's......
  19. Shalala

    Shalala New Member

    Seems like there are alot of us "cat women" around. We rock! Well at least our kitties think so ;-) .

    I am feeling better that I am not alone (family not believing or supporting me). I cried it all out and grieved it but yeah I get sad about it at times. My son sort of threw it up in my face tonight. He said ... haven't you ever heard of "tough love" (referring to how my sisters treated me). Tough love my tushie. Nuff said.

    Back in olden times (1970's or early 80's) there was a best seller (book) titled "Looking Out For Number 1" ... I should still have it around here (along with the Body Language one ... lol). With our lousy health issues we need to be a little selfish and look out for #1.

    (((((((((((( hugs to all )))))))))) unless you hate cats
  20. monkeykat

    monkeykat Member

    Hi MissyKittyCat001,

    My parents also had 10 children: 5 boys and 5 girls.

    I have CFS, FM, MCS and ANS Dysfunction (POTS & poor sweat response with no specific CNS or ANS pattern)

    I have slow-onset CFS and developed the other illnesses on top of it.

    My mom was bedridden for 4 years and suffering from Parkinson's Disease.

    I was trying to finish the Occupational Therapy program and I was working part-time in the neuroscience lab when my health was declining some...I was still in the high levels of the CFS rating scale chart.

    Only a couple people in my family insinuated I wasn't doing enough but I was trying my best. I was calling my mom 2x/week and visiting as often as I could. I would buy products to train my parents to use easier methods to transfer mom, etc. My dad seemed miffed and treated me like my information was useless.

    When I would visit my mom, she would turn her head away from me and completely reject me unless someone else came in the room with me. I had my husband watch her do it to me once b/c I needed someone to see what she did.

    My mom never wanted to hear about anything in my life, even when I told her that I was getting married, she turned her head away from me and started telling me about people who were sick or in the obituaries.

    My siblings used to "forget" to invite me to family parties. I believe they were ticked off at me b/c maybe they thought I shouldn't be going to college.

    Anyway, I was just starting to get ill at the time and no one understood that I was struggling to survive each day doing what comes pretty easy to other people.

    My health has continued to decline and at my worst I was level 0 and level 10 most days.

    I am now up to around level 30. Some days level 10, 20 and part of level 40.

    All this to say, I know what you are going through. I understand the pain of rejection.

    Most of my siblings rejected me when I got this illness and most of them still don't understand.

    One of my sister's has become extremely supportive this year (year #4). She was starting to try to be more supportive year #3 but I don't think she really understood it back then as well.

    Another sister started emailing me some year #3 which was great but we had never had a good relationship so I didn't trust her much. She spent so many years judging and rejecting me that I didn't know what she was up to.

    My other family members say, "I'm a big f'ing baby" and compare my illnesses to a sprained ankle.

    It's pretty appalling but they are just ignorant.

    I've learned that I have to forgive. I called churches in the area and found a woman who counseled me on the phone and helped me understand family dysfunction. She helped a lot. I have worked through tons of anger and I still have some anger to work through.

    I don't know what religious faith you are but I believe all faiths encourage forgiveness...I would hope. It's not something that we naturally want to do but it sets US free and helps us live in peace.

    Because my faith is Christian, I meditate on what Christ did for me on the cross and How God loved me so much that he chose to suffer tremendously and die in order to forgive me of my MANY faults. I pray for willingness and help to do the same to others in my life.

    I have also realized that forgiveness is not reconciliation. I do not have to be close or let family members or friends into my life who are continuing to hurt me through their "mocking, questioning, discounting, guilt, judgment, etc.".

    My husband got some things from the library for me: a book called "Toxic People" by Lillian Glass which helped a lot. I also listened to cassette tapes on "Boundaries" by Henry Cloud and John Townsend as well as a CD from John Townsend something about people pushing your "Buttons". I can't remember the title. Anyway, it helps you understand protecting yourself and setting limits with others is the most loving things you can do.

    I hope some of this helps.

    I truly understand your pain.

    It's hard to have a big family who gangs up on you. It feels devastating at times.

    Keep Hope Alive, Monkeykat