Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
Hello everyone. I am new and glad to be here. my name is Ellen. I am 33 years old and was diagnosed with FMS and CFS amongst other things in 2002. There is alot I would like to say and ask advise about but the one thing I am thinking about right now that has me really bothered, is how do you deal with the unkindness in family members who don't understand why you have all these medical issues and have to take meds for them. It's as if they think I am a hypocondriac or drug addict or just stupid and take a bunch of meds for the fun of it. The thing is, is I am not even taking anything right now but a anti-depressant and two heart medications for a heart condition called long q t syndrome. I have to take it or I could die but they will still sit there and argue with me about how that simply isn't true and that I am sick BECAUSE of the meds I take not because I take the meds for a illness. You know what I mean? That kind of logic of theirs makes me crazy!! My brother was just telling me "now wonder you have headaches all the time because all those pills mess up your chemistry in your body and give you headaches". He knows that migraines run in our family and have attacked many people in my family who are not on anything and that his thinking has nothing to back it up. But there he sits all smug, talking his crap anyway. The thing is, is he sitting there like he knows something while he pounds down another beer. He is an alcoholic and after being up all night doing drugs with a friend in which he actaully thinks hes hiding it from me. He thinks I don't know and has the gall to say these things to me. I don't do drugs, am going to college and really trying to better my life and he clearly sees this but still will run his mouth. I know it's silly that it even bothers me but it just does. If you guys havn't guessed all ready I am living with my brother right now. I take it personal when ever a family member says things about your illness they know nothing about and that is something so personal that you have fought long and hard with and they sum it up to be all so simple as to just stop taking my meds, it upsets me. And it's not just my brother. Everyone in my family is like this. That is where he gets it from. I have never been supported by anyone yet always gave support. I have never given any of them a reason for not believing in me or for not supporting me. And none of them even care enough to go look up some information on my conditions so they could at least know what I am even talking about. They just talk shit and wouldn't read something even if I gave it to them to read.The least they can do is just leave me alone then and not go out of their way to try and make me feel bad. I am sorry, I'm sorry. I am totally venting right now. I guess it's been along time coming is all. So if any of you who were able to get through this post have any advise for me I would greatly appreciate it. Love to you all, Ellen
I completely understand where you're coming from. My husband is not very understanding of these kinds of conditions. I have fybro and and heart thing as well, mitral valve prolapse. He's always asking me and I have a fever, meaning if you don't have a fever then you're not really sick! But every Friday he drinks a whole bottle of wine because he thinks he deserves it! In every other way my husband is great and I love him very much, but when it comes to being sick, he's really bad and judgemental. I suffer from so many different things that are not really real (for him) like depression and anxiety attacks and menopause, blah blah blah, they just don't seem to understand when it comes to woman things right?
Don't worry about what other ppl think! For support, come here! That's what this site is here for, SUPPORT!
I know for me, this group has giving me the understanding my family, and friends just couldn't seem to give. So I too understand what you are saying, your not a lone at all.
I don't know why the people some of us are close to, don't get it. Maybe because they are feeling like they are losing some thing they feel they need, so they go into denial about us being ill, and want us to join them. Not going to happen. or if they are just so nervous for us, and not sure how to be supportive back, I am just not sure.
I am really sorry your having to deal with all that. Remember we must be our own care takers first now. That one is hard for me too. lol But we need to put out there what we need, and be calm, and logic about it, well with a bit of emotion. I can't get through much these days with out emotion in it. lol
You seem to being doing good and positive things for your self, concentrate on those things, and try hard to not let family member/others negativity to get in. It really is not our friend, we need to find peace, I think that helps me so much, finding peace, but keeping that peace is another thing all together.
Sorry I couldn't really be of much help, but know I am thinking of you.
Sending you some good, positive thoughts.
Gentle hugs, Sherrall
I just wrote them off. I don't want them around me or my children. I don't think I will have contact with them after our dad dies.
It's kind of sad, because your family should be your greatest support and resource. This disease really sucks.
Hope things get better.
Hugs
There is something I did a couple days ago that might help you out too, since you mentioned them not looking into your illnesses and what they are. I went in and printed out one page explanations of what my problems were for my family. I had a page for fibromyalgia, CFS, Lupus and Sjodjerns disease. I told my family that it wasn't like I wanted them to "study up" on my illness, but I would like for them to understand them somewhat. And then maybe they would get a clue.
Of course, now I just have to get them to read the pages. ha ha!!!!
Anyway, maybe this suggestion might help to get your family to support you a bit more anyway. Best of luck.
I'm sorry you have fibro and need to be here, but happy you found us. This is a really great group.
My best suggestion is to find an Al-Anon meeting you can attend. You are living with an alcoholic, and while the rest of your family may not be alcoholics, they definitely have some characteristics (i.e. control issues) and I believe you would benefit greatly by talking to others in that situation.
I'm not active now but I was in Al-Anon for about 10 years, and it literally saved my life. I made some life-long friends and got support I never could have dreamed of, and almost as important, I learned some really important skills for living my life no matter what was going on around me.
If you want to talk about any of that privately, just PM me.
Again, welcome.
Families tend to have a lot of shared ideas, particularly it seems, about things like illnesses. You're never gonna change all their minds. Those closely held beliefs are a part of who they are. I have feiends who are like that and I just don't bring up the subject around them. It will only lead to disappointment and hurt feelings on my part so I choose avoid the issue with them.
We will always be here to listen and support and understand. And I'm always available if you want to talk.
Carol
I agree that the whole world should do a 12-step program. Honestly the people I know who have overcome addiction are the strongest, most grounded people I know - it's a hard way to get there, but if you get there it's a good place to be.
For those of us who just live with them (or did), Al-Anon is an awesome place to learn how to cope. As CSD said, it's about changing YOU, not them. You are the only person you can (or should) control, and you need to learn to detach from those who would torment you for their own selfish reasons.
It CAN be done - but it takes support - which is what you'll find in Al-Anon.
LOL
Glad you found us, and HUGS from down south :)