Not the same fibro I have....

Discussion in 'Fibromyalgia Main Forum' started by romanshopper, Jun 5, 2008.

  1. romanshopper

    romanshopper New Member

    There seem to be a lot of people who SAY they have fibro - who never got diagnosed, just decided they have it. Then there are those that tell me they have fibro TOO - but they are on disability and mowing their neighbor's grass for extra money in the morning and cleaning houses in the evening.

    Now, I am not on disability - luckly my husband is supporting me so I don't have to go through the stress of applying and getting turned down - and like I could figure out the forms anyway - lol - but...

    to be honest it upsets me. If these people do have fibro, it is not the fibro I have and that most of you seem to have.

    Know what I mean? I doubt - I may be wrong - that I am the only person that really, really wishes they would get a test for this stuff.
  2. erinwilburn

    erinwilburn New Member

    I am puzzled by the same things. The thing I have run into is having to expain myself more because of people who do function.

    My mothers best friend is one who has worked full time, traveled and been a single mom for 10 years and only gets sick once or twice a year.

    So as you can imagine my mother does not understand why I can't work and is mortified that I am now applying for SSDI. By the way the paper work is a lot easier online because you can't leave anything blank or have conflicting answers.

    What I have learned is that there is FM and acute FM, meaning it effects our quality of life. Thank goodness we do see those of us on bed rest here so I do know I am not alone!
  3. rosemarie

    rosemarie Member

    I must have the same kind of fibro as you do. I have ached , all my life, my knee's have throbbed for years, I get so exhusted that I could just lay down and bawl but it would take to much effort to lay down.
    After working as a Dental Assistant for 15 yrs, a cashier for 8 yrs, I could not work any more. I applied for SSDI but don't qualify for the SSI benifits.

    It only took me a year to get my SSDI benifits. I still wish that I could work instead of getting this money. But when YOu can't work any more and you have bills that have to be paid you do what you have to do. I know people who claim to have fibro too and they are working 8 hour days and out playing , water skiing ect. I wish I could do that but I struggle just doing deep end water arerobics. I have people tell me that i don't look sick but when I stand up and walk they notice that I don't walk right any more. I can't sit for more than a 20 minutes.

    So I do understand how you feel.
    TAke care
  4. Doober

    Doober New Member

    what you mean.

    I work full time and by the time I get home, I just want to crash on my bed and just not move. But with 2 kids and a busy schedule with them, I just end up crashing later at night.

    I have a family member who said to me, "I think I have Fibromyalgia." I asked him why he thought that, and he said because his knee hurts sometimes.

    What??? I almost slapped him upside the head, but I was too tired at that time to raise my arm.

    I told him to make a DRs appointment and tell the DR that he think he may have Fibro and give the DR his symptom. Now, I did not tell him everything I go through in order to keep him honest if and when he made the appointment.

    This is one of those people who tries sometimes to make other people look dumb and I was not going to stop him from making himself look not so smart if he actually made the appointment like I suggested. I have not talked to this person for quite sometime.

    I don't tell people I deal with as to what all my symptoms or daily feelings are so as to not influence anyones mindset. I do have a few people on my wife's side of the family who have Fibro and we talk comfortably amongst ourselves. Although I am a male and they are females, we do share a lot of things and ideas.
  5. CanBrit

    CanBrit Member

    I went to my first (and last) physio session a few months ago and one of the employees who was taking down my information, said she had fibro too.

    She was putting all these people through the exercise machines and showing them what to do. Running around the office, doing shoulder massages, and I'm thinking "what's this???".

    I'm guessing, that like many other conditions, there are degrees of severity. I've heard that there are a few different types of FM. This may explain why there are different degrees of disability with this syndrome.

    See the information below from the Fibromyalgia information website.

    "There are Four Types of Fibromyalgia which are mentioned below
    1. Primary Fibromyalgia: In this type of Fibromyalgia pain occurs in muscles, tendons, and ligaments throughout the body. the cause for this Fibromyalgia is not known till now. this type of Fibromyalgia affects young and middle-aged women, but they can also be found in men, children, adolescents, and older adults.

    2. Concomitant Fibromyalgia: In this type of Fibromyalgia that co-exists with another condition that causes muscle pain, such as arthritis, or other diseases of the connective tissue. This occurs along with another condition such as osteoarthritis or scoliosis, with no clear relationship

    3. Secondary (or reactive) Fibromyalgia: This type of fibromyalgia is caused by another disorder. It may also be associated with overuse or trauma to the muscles, such as that experienced following a motor vehicle accident. In this fibromyalgia, the pain is often localized that is it occurs in a specific area of the body. Men are more likely to have secondary fibromyalgia than primary fibromyalgia.

    There are two types of Secondary (or reactive) fibromyalgia
    a. Fibromyalgia that occurs in the presence of an underlying disease, such as RA, lupus hypothyroidism, or cancer.

    b. Post - Traumatic Fibromyalgia: This is a special type of secondary fibromyalgia which is commonly seen following a trauma such as a motor vehicle accident or work injury.

    4. Regional Fibromyalgia: This is a type of localized form of fibromyalgia, which will have 11 of 18 positive tender points."

    All the best,

  6. momof471

    momof471 New Member

    we need to remember not to be to judgemental of others and how they handle their own illnesses.

    With fibro of course there are good days/weeks and bad days/weeks. When we feel good I think we like to do things we can't do normally.

    Also, people have to have the medical documentation to get the disability and who is to say whether or not depression might be a huge factor and a deciding point in their disability.

    Maybe they also really need the money to eat with or take care of basics.

    There are many different situations, I'm blessed with a husband who has been working 2 jobs for over 4 years, I've been approved for disability but payments have not begun yet. Other's maynot have the support you and I have.

    God Bless
  7. hensue

    hensue New Member

    I understand what you are saying! People that say they have fibro and run. Walk 2 miles a day. I do not understand it. If i did that i would be in the bed either in 24 hours or less. In terrible pain all over.
    I understand other people hurt in different ways. They fibormyalgia I have you hurt from head to toe. With bladder spasms, headache hurt all over in your ears. It is pain everywhere. So i have always been puzzled how people with fibromyalgia can go clean a house. Walk and run.

    I wish there was a test you are not the only one. Then maybe people would understand
  8. This seems to be a touchy subject. I think I understand how you feel.We had this conversation before. What I have noticed here is a few people do tend to exagerate the illness till they get social security.

    I have seen people get very defensive about the things they are capable of doing.

    If those people acted like that in front of the judge they woudnn't be getting social security
  9. charlenef

    charlenef New Member

    wow, i wish i could get well and give up my ssd im in bed so much. i would get tired going to a job id have to turn around and come home to rest. lol

    i guess some people just get minor aches im not one of them mine started with cmp then i hurt my back really good and fibro kicked in that was the end for me.

    my sister even has nerve to say to me i wish i could be like you so i dont have to work what?(she was always lazy)the sad part is i think she means it
  10. marti_zavala

    marti_zavala Member

    "Now, I am not on disability - luckly my husband is supporting me so I don't have to go through the stress of applying and getting turned down - and like I could figure out the forms anyway - lol - but... "

    I strongly urge you to file for disability. What would you do if your husband, God forbid, was killed in an accident or was paralyzed in an accident? How would you live? How would you get insurance?

    If you paid into the system, and you cannot work now, then you qualify. It is a hassle but I got mine approved in 60 days - I don't know how but I posted my experience in the sticky at the top of the page.

    I had no choice to file since I am divorced but think towards the future. the forms are not that hard and you owe it to your future to file.

    Please consider it and also, you lose credits after 5 years so please look into this. You could use Allsup and pay them a fixed amount which comes out of your backpay (used to be $5300) and they do everything. (you do a little bit)


    [This Message was Edited on 06/06/2008]
  11. Please tell me how you got money in 2 months? I am waiting for my hearing. Ruthie
  12. momof471

    momof471 New Member

    I struggled with disability for 3 years before I was approved and it will be several more months before payments begin for me.

    I have four children to take care of while my husband is working two jobs, I do volunteer at school and when I can do things when I can.

    My life has changed dramatically, I don't know when I am going to go into a flare. Every single day I deal with excruciating pain and I can't take pain meds because I have had a reaction with every single one.

    I have a psychologist, psychiatrist and a rheumatologist, that have provided valuable support for me.

    When I was in front of that judge, I let him know that I volunteer, he knows about my kids and that sometimes I do alot and other days I am practicaly comatose.

    Every day of my life, I grieve for the loss of my previous self, but you know what? I have to go on, I have to do what needs to be done, I have people depending on me.

    I don't mow yards and I clean the house as I can, its not perfect, I sleep a huge portion of the day while my children are at school. My weekends are spent trying to be normal for my family.

    Some may look at me and say, oh, she is out with the kids, she must be fine. Todday I had a headache of all headaches, but I was sitting in the heat at the park across from my daughter's school for their end of year celebration. It was excruciating but I did it for my daughter. Could anyone tell I was in extreme pain? I don't know, but its not for me to worry about what other's think.

    With this illness, I have gained compassion, I never could have posessed without it. Its not fair to judge other's because they are doing what they have to do.

    I don't want to argue and I'm not being mean, this is my point of view and it is not because I have been granted SSD. This is the way I run my life and others deal with things the best way they can.

    God Bless
  13. romanshopper

    romanshopper New Member

    Even if you ignore the whole disability issue - and I believe that most people with fibro on disability really deserve it - good grief - it is not even that much a month.

    But yes, what about the person that gets the pain in their knee, never gets diagnosed, but assigns themselves the label fiBRO? They go and tell everyone they have fibro! People just diagnose themselves.

    Then we get articles like this, saying that fibro is just a pain in the neck:
  14. PVLady

    PVLady New Member

    Unfortunately, you cannot be with someone 24/7 to know how sick they may be behind closed doors. Judging anyone else based on subjective observations is something you would not want yourself.

    Many people here have dealt with this same type of judgment from family, friends and acquaintances. It is very painful. We are not in some exclusive club having fibro.

    What do you mean "these people" There are many members here on disabilty who do odd jobs just to have food on the table. They are less fortunate than you, however that does not give license to put them down or be judgemental.

    When you learn more about fibro, you may realize it is often secondary to many other diseases, not the only problem someone has.
  15. lvjesus

    lvjesus Member

    It is true that not everyone has the same symptoms or serverity of symptom and some people just push through the things they have to do. I am having a relapse after being symtom free for nearly a year and although I was wasted Friday, I went to work for 8 hours because I don't have any sick leave and need the money. I went to church today even though I did not feel very well, because going is important to me.

    Some people are bedridden and have constant pain and fatigue, some people have less but if you truly have it, you suffer to a degree. Maybe you just caught them on a good day or maybe they are like the people who try to commensurate with you by sharing their aches and pains and really don't know pain. I wouldn't want someone to say of me because I can work full time (or because I do work fulltime) or go out of whatever I do that I don't really have it or compare theirs to mine. I am thankful that I am not bedridden and can work but the past few days have been hell and I have to get back at it tomorrow.
  16. marti_zavala

    marti_zavala Member

    I posted my experience in the sticky at the top of the page.

    I am not sure how I did it. I just filed and intended to find an attorney or use Allsup but I got approved before I could find someone.

    Then my letter came in the mail. Please read my post.

    I do not know what the magic key was but I am thankful as we were in dire straits.

  17. ironspine

    ironspine New Member

    Hi-I lost a friendship of 20 years. I was trying to explain my symptoms to my "friend" and she says she doesn't even like the word "Fibromyalgia". Seems that she knew 5-10 people in her neighborhood that said they had it. She thinks, how could so many people have it? She also says, her doctor told her it's just another word for pain, they don't know really what it is..etc. So, instead of believing me, (when I've had to leave their house before due to a horrible flare)she says I might be a hypochondriac. My mouth could have fit the moon in it, it was hanging open so wide.
    I cried for days about this-it's like the friendship died. Since then my attitude has changed. If people know I have it and don't believe, hell w/them! My family understands (and some good new friends) and I got a parttime job that I can work as little or as long as I want.
    I could have been a nut case worrying about what people think-but decided not to let it get to me.
    Good luck, fellow fibro people, however bad you've got it, I'm with ya!
  18. RENA0909

    RENA0909 New Member

    I think Fibromyalgia is like autism in the way that there are different ranges of severity and symptoms!!!A complete SPECTRUM !!

    Some of us may be able to work and some of us may be bedridden.............but we never know which way our lives will unfold in the future so I would never be judgemental.

    I now know I had fibro all my life but it only became severe when I had an operation.I was in bed for 2 years after that.

    I have a friend that had to finish work because her fibro got too much and yet she is able to do a lot more than me.....but I think her future could change at any moment because we all know that lots of things can kick fibro off.

    We have friends-in-common who said to me that she was a HYPOCHONDRIAC!!!!!

    They know how ill I have been but they judged her because she was not as ill as me!!

    I dont really bother with those ill-informed people much now as they will NEVER understand what I and the othere woman go through............even though I am more severe I would never say thet she was ok because like I say....who knows what the future holds??.


  19. spmom

    spmom New Member

    What I have learned from fibro is that I can never judge someone based on his/her appearance. I have had fibro for nearly seven years. I went four years undiagnosed because my symptoms did not fit the medical criteria, but I knew I had it all along. I have been in pain all along and have had a few years where my fatigue was so bad I could barely make it through the day, and ultimately had to quit my job. No one would have ever known that things were as bad as they were because I didn't want to believe it myself. I wanted to be well (mostly for my children) so bad that I just pretended my way through it.
    From what I know about fibro is that it is different for everyone and everyone handles it differently and that is o.k. I certainly know the feeling of wanting everyone to know what living with fibro is really like.
  20. autoharp15

    autoharp15 New Member

    I do understand what you mean about people who think they have fibro and are very active. I do work as a nurse full time and I have fibro . Is it hard yes very. Some days I dont want to move or get out of bed. But since my spouse was forced to retire from his job since they closed the plant that he worked at I dont have a choice but to work. I purchased disablity insurance in case I get to the point I can't work anymore. That is one of my greatest fears that I wont be able to work and support us. My spouse works at wal-mart and does not make that much. Its hard for him since he is 61 years old and who wants to hire someone his age since he is so close to drawing social security . No one does. He was lucky to get that job. He worked at this plant for 31 years and all he got was a pension that we cannot live off of. I am in pain daily . I have started taking Lyrica and it is helping me alot. Some times people like me are stubborn and are forced to do what they have to do to take care of their family. If I drawed SSI right now I would not draw but maybe 600 per month . That would barely make our house payment. I cant tell you how many times I have cried all the way home from work because I hurt so bad I could hardly stand it. So dont judge everyone by the way you feel. We all have our limits and sometimes we have to exceed them to survive.

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