New here, have had FMS for 5 years

Discussion in 'Fibromyalgia Main Forum' started by snick63, Apr 3, 2009.

  1. snick63

    snick63 New Member

    Hi, I've been dealing with FMS for several years and I feel like I am fighting a losing battle. I'm hoping to get some support and learn some ways to quiet these flare-ups down. So far, I am not doing too well on my own.

    Currently I take Tramadol for pain and see a Rheumatologist. I cannot take the NSAIDs because of the side effects so Tramadol it is. It helps some but when the pain gets bad, I just can't move and feel pretty useless.

    My daughter is supportive but my husband and the rest of my family don't understand. I am unable to work like I used to and that creates tension at home. I recently quit a job that entailed me standing on my feet for several hours a day. My family (they live out of state) doesn't know I have quit and I am dreading telling them because they will be very upset with me. We have a family member who has severe arthritis and she is unable to work. Her condition is very much accepted among our family. Mine is not. I keep very quiet about myself as a result. I just go about doing what I can. I did find another job which I am able to do but it won't make my family happy I had to quit the other one.

    For a first post, I apologize for being all over the place. I feel like I have let everyone down who I love because I can't be 100% anymore. Some days I wish I could just run away and start over where no one knows me and won't judge me.

    I'm glad I am here. I look forward to reading more of the posts on this forum.

  2. Janalynn

    Janalynn New Member

    Hi there and Welcome!

    You're not all over the place at all! It's amazing that as adults we're still concerned about what our extended families think about the choices we make in our own lives. You're married, have a daughter, you're grown up enough to decide what kind of job (if any) you want, you need or can handle. I know that's not easy depending on the relationship, but if you start thinking that way, it might make it easier.

    Your husband doesn't understand? Your illness? why you had to make the decision to quit?

    You'll find a common thread among us where we've all felt at one time or another that we're letting others down. That's definitely something you need to work on. Having Fibro is beyond your control.
    No one says you have to be 100% for everyone else anyway. Give what you can - no one can really expect anymore - from anyone.

    You need support - that is critical. I'm glad your daughter is there for you. You need to get your husband on board. Do you have a good Dr.? This is a great board to come to for understanding, resources and support.

    PS. I think we've all wanted to run away at some point. You're not alone. =)

  3. snick63

    snick63 New Member

    My husband doesn't understand the whole FMS thing. I don't think he is really interested either, not that I expect him to be. It's my problem so I deal with it myself. The only thing I hear out of him is how our life has changed and how he yearns for the old days...I do too, but my body isn't listening:( I know, in his own way, he grieves for the days before FMS invaded our lives. I grieve as well.

    He is also upset about our finances. I feel like he blames me for not being able to work a full workload anymore. Sometimes I wish he would just leave me. I think it would be better that way. He didn't sign up for this. I feel like I am really making him suffer and that's not very fair.

    I have a great dr. who is very up to date on things. She likes to make sure all my blood levels are where they should be and if they aren't, we get vitamins involved to bring them back to par. I need to see her again soon. I am feeling awful and I think it's the crazy weather - winter going into spring. My body is having trouble adapting to the change.

    I really need to be more in charge of things, personally. I hope I can gain that strength from you all.
  4. ladybugmandy

    ladybugmandy Member

    snick..i am sorry your husband is not supportive. may i ask ..did something in particular trigger your illness?

  5. snick63

    snick63 New Member

    At the time of dx, I worked at a major food chain doing heavy physical work. I was doing okay and then I began to hurt, starting out with not being able to get out of bed some days. I had no idea what was happening to me at the time. I started out at my regular dr. who suggested I see a Rheumy who dx'ed me. I have stayed with the same Rheumy to this day.

    I was also in a terrible car accident 21 years ago. I fractured my back and arthritis has set in through the years. I'm not really sure how this happened.

    I was going to be a flight medic. I used to garden and could run circles around everyone. Now it takes two hours to put together a simple dinner. Most evenings we don't eat until very late. I need to start earlier.

    I'm very disgusted. I worry what will become of me. I don't think my husband is going to hang around the worse this gets. To tell the truth, I don't think I want him to. The less people involved in this, the better off I will be. It's hard enough for me to deal, let alone seeing others affected by what is happening to me. I can't handle that kind of responsibility.
    [This Message was Edited on 04/04/2009]
  6. ladybugmandy

    ladybugmandy Member

    snick...i am sorry. when i think about my future, it gets bad. i try not to most of the time. i am 38 and live with my elderly mom. she is all i have (aside from a sister who lives in a mental institution).

    i am trying antiviral treatment for my CFS. i have improved somewhat. i wonder if you have heard of this treatment for fibromylagia. i know there are some doctors doing it, such as dr. dantini in florida. some believe HHV6 to be the culprit.

    i am sure there are many other potential causes. i started to have FM pain a while ago on top of the CFS but when the doctor restarted me on Valcyte, it seemed to mostly go away. it was beginning on my upper arm, like someone was continually punching it.

  7. lynncats

    lynncats New Member


    Hi....My Name is Fibromyalgia, and I'm an Invisible Chronic Illness. I am now velcroed to you for life. Others around you can't see me or hear me, but YOUR body feels me. I can attack you anywhere and anyhow I please. I can cause severe pain or, if I'm in a good mood, I can just cause you to ache all over. Remember when you and Energy ran around together and had fun? I took Energy from you, and gave you Exhaustion. Try to have fun now! I also took Good Sleep from you and, in its place, gave you Brain Fog. I can make you tremble internally or make you feel cold or hot when everyone else feels normal. Oh, yeah, I can make you feel anxious or depressed, too. If you have something planned, or are looking forward to a great day, I can take that away, too. You didn't ask for me. I chose you for various reasons: That virus you had that you never recovered from, or that car accident, or maybe it was the years of abuse and trauma. Well, anyway, I'm here to stay!

    I hear you're going to see a doctor who can get rid of me. I'm rolling on the floor, laughing. Just try. You will have to go to many, many doctors until you find one who can help you effectively. You will be put on pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given a TENs unit, get massaged, told if you just sleep and exercise properly I will go away, told to think positively, poked, prodded, and MOST OF ALL, not taken as seriously as you feel when you cry to the doctor how debilitating life is every day. Your family, friends and coworkers will all listen to you until they just get tired of hearing about how I make you feel, and that I'm a debilitating disease. Some of they will say things like "Oh, you are just having a bad day" or "Well, remember, you can't do the things you use to do 20 YEARS ago", not hearing that you said 20 DAYS ago. Some will just start talking behind your back, while you slowly feel that you are losing your dignity trying to make them understand, especially when you are in the middle of a conversation with a "Normal" person, and can't remember what you were going to say next!

    In closing, (I was hoping that I kept this part a secret), but I guess you already found out...the ONLY place you will get any support and understanding in dealing with me is with Other People With Fibromyalgia.

    Snick63, keep your chin up!!!
  8. Welcome snick63, sorry u have been dealt this dd, as I and many have. I hear you, it is horrible, NO ONE understands, my husband tries, but I even see him roll his eyes. Just don't worry about others and think of you and take care of you.

    lynncats thanks for posting that , I am copying that and leaving it for my husband to read.
  9. faithinlove

    faithinlove New Member

    I too am new to this message board. I will let you know how good it makes me feel to come here and just tell exactly how I feel and to know that I will not be judge. I think we all understand to some degree of what the other has to go through. I know that is different for every individual but it is common here that this condition has touched us all. I have had to quit my job because of my condition and it makes me feel awful to have done this. I had to though..for myself. It is still hard for me to make a decision because I know what I decide not only affects me but others I am close to. I love all of my family but I also know that it is crucial for me to try to help myself in order for me to care for my family like I want. I just wanted to let you know there are some really nice people here and I know we all can help each other and we are bonded together because this illness has touched our lives. Lots of love and prayers..I do hope you feel better..Faith:0)
  10. otis89

    otis89 New Member

    I know you will find alot of comfort here, i sure have, its nice to know you are not alone, when so often times the friends and family that you belong to dont have a clue to what your going through physically and mentally. I seldom get the support i need from my husband, i try my best to explain how im feeling and what im going through, and sometimes i think he dont care enough to listen and try to understand what this illness does to me on a daily basis, and i too try to hide and mask my illness from family (especially his side), they are so critical and judgemental, I cant work and havent worked since 2005, and i admit that i feel ashamed of this, even though i know i dont have to apologize for your feelings, Ive felt the same way, about letting people down, i still do...knowing that i cant provide financially and often times emotionally to my family and friends....causes severe i try to stay positive as best i can.....because it makes my symptoms that much worse if i dont..and its hard, but thats all we can do, is just do the best we can, Im glad you found this site, its a great haven when you cant find one anywhere else.......I hope you feel better soon, otis89
  11. lynncats

    lynncats New Member

    you are so welcome. I showed my hubby the "My name is fibro" and he was like WOW, this really isn't a fun/good thing to have, he seems to understand more now than before he read that. Hope it help's your husband too. Take care!!
  12. SnooZQ

    SnooZQ New Member

    Welcome. I am sorry to learn of your situation. I hope you will get more understanding from your family. You will get lots of support here.

    There are different ways to approach your situation, and you will find there is a wide diversity of approaches here.

    There are those who are comfortable only with accepted medical standard of care (meds).

    There are those who are anti-med, who are pro-alternative approaches only.

    There are those who use whatever works, mainstream or alternative.

    There are those who are very private about what they've tried, who want emotional support only.

    There are those who want to be challenged.

    There are those who want a shoulder to cry on.

    There are those who like to make our days brighter by giving us a chuckle now & then.

    There are some who have made significant progress with their disease over the years.

    There are some who have struggled, tried everything, and find they are not winning.

    In defining a few of the "types" of fibro sufferers, I do not mean to disrespect any of them. There is a lot of crossover, people may participate in more than one of the subgroups.

    One thing I have found very helpful (in a concrete way -- I am much improved) is to learn all I can about what people attribute to causation of their FMS & what they attribute to have helped make improvement. By trial & error, some of us do find our way through the maze.

    Public libraries also have educational resources.

    Best wishes.

    [This Message was Edited on 04/06/2009]