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.

4,403 Members

50,123 Posts

0 Online

Jessica-Cornejo 04/04/2011

It's very hard for me to go out, I'm always hurting and pretty much always medicated. Not only do I have horrible joint pain (well pain all over) but I also have Ulcerative Colitis. I don't have much in common with "normal" people. And they always eventually get annoyed when I constantly cancel on them. Sick people usually get better, or die. But as many of us know we are just in between that. And forever will be. So somehow I became a home body. My idea of a fun night is watching TV and cuddling. I love video games, doing photo-manipulations, and my cats. I find that hanging out with people can be tiring, both physically and mentally, specially if I am very medicated. so I kinda just hang out at home by myself. I've tried having online friendships, I've tried setting up meetings to play D&D with strangers, I've tried talking to people in online games, I've even tried going to face to face support groups. It just doesn't seem to work out for me in the end.
My best friend just told me that he doesn't want to hang out as much online with me. he told me I need to get out more, (even though I actually have been going out more than I use to. In fact I am going with my mom to the movies tomorrow) He said he feels bad going out and I'm at home. I suppose he wants to be able to have a life and not feel bad that I am getting left behind. This is just days after I told him that I am afraid I am loosing him and that I miss him terribly. (he visits during the summer every year) I don't think he gets how hard it is to maintain friendships when you are sick. Specially ones that are not simply online. And being friends with other sick people always made me think that there would just be two of us canceling lol. I've tried many ways to make friends, I am not socially awkward or anything, I was very popular in school and even years after. before I got very sick I was out daily and had many many friends. But over these last eight years I've slowly lost friends.
I feel like my girlfriend, and my best friend are the only two people I really have in the world. And even so I often felt lonely and misunderstood. which is why I cam here and why I have started working on my relationship with my family. But now I don't know what to do. Where can I put up a sign that says "hey want to be my friend and not murder me?"

deleted_user 04/04/2011

It can be very hard to maintain friendships/relationships when you are sick. What you need to do, is find a method that works for you. Educate your friends more on what you are going through. Talk to your doctor about different medications that can help you just as much or even better, without causing such side effects. Do what makes you happy... Often when you have fibromyalgia you have to prepare for fun. It's harsh, but true. You can find ways to maintain a normal life, you just have to not beat yourself up. You always have friends here, and every single one of us knows exactly what you are going through.

Be strong sister.

sleeplessinvictoria 04/04/2011

I can understand what you are saying .The friends that left aren't your true friends.I lost a lot of friends after i got sick and i only have a few close friends that understand.I don't even have a supportive family so i try not to talk to them as they just put me down and tell me that everything that is wrong with me is in my head which is not true at all fm is real.Have you ever tried to go to a fm support group in your area?I found this helped me a lot.I made some friends and yes they do cancel but i do to and we understand why we usually meat and go for a walk then go for coffee or ice cream .I also do art and crafts as im at home 80% of the time and i do embroidery.I don't have a lot of energy due to the fm and cancer.

LeoX3 04/04/2011

Friendships can be *hard* to keep going with FM. Just take it easy on yourself, and as was advised, educate your friends and family as much as you can (meaning: as much as they allow), and find quieter activities you can do out of the house. I find sitting on a bench people-watching at a popular park is a great way to at least chit-chat casually with people, so I feel less isolated, that kind of thing. Just an idea:-)

Hugs,
Leo

scootermom 04/04/2011

I've found a new group of friends via the web: www.meetup.com will show you what groups are in your area, how often they meet etc. My meetup group consist of 35 ladies, from various backgrounds, interests and ages. There are usually 5-10 activities per month, but you only have to attend one per month to remain an active member.

I love my new girlfriends! Hope you can find some as well!

lovingautumn 04/05/2011

Many of us know where you're coming from. I feel the same. I used to go out dancing and I was very sociable in HS. I am now 41 and I think due to my illnesses,getting older: people go their seperate ways and are busy w family-it gets harder to plan things. BUT I try to get out of doing things mostly because of the reasons you give here. I get tired easy and i hurt a lot and wear out faster than they do. trying to fake it is exhausting and then there's the point where you feel like they don't understand. I have my husband and BF who do get it...I've been friends with my BF since HS and she had previously been aggravated with me...but thankfully she understands more than ever now.

The other thing is that sometimes we need to realize that not everyone is the same. Some are outgoing and some are not. God put different people on the earth so it wouldn't be 'boring'. That's what I believe. So instead of being negative on how I am,I try to see myself as 'different'. There are times I get resentful and I ask why are some people so healthy and strong and lucky...and some are just the opposite. I try to tell myself "god only gives us what we can handle" so he must think I"m pretty strong. And I'm not trying to be preachy or push my beliefs on anyone...This is just what helps for me.

Life is just hard and the main thing for me is to try and just be there for each other,try to sort out and focus on the good things: even if they are few and far between...

deleted_user 04/05/2011

Girl I play DDO. Message me with your toon name and we can play online!! It is my life line to the world when I am bedridden and can't get out.

deleted_user 04/05/2011

Sorry, I got so excited I forgot to add the rest. People on here talk all the time about losing friends to this illness. I thought, not me! But sure enough my family and friends fled. I only have one local friend left and its because she has family with chronic pain and can understand. My life line is my church but even they don't understand. They think that if my faith were enough, God would heal me and I would be well. So I try to get out and socialized but when I can't, I play DDO. It allows me to have conversations with people and feel normal. But we need human contact. You may want to try support groups in your area for depression. We have to deal with situational depression with this illness. It is very real. Some people you meet may have chronic pain issues themselves and you'll find friends that know what you're going through and won't be upset if you have to cancel last minute due to a flare.

deleted_user 04/05/2011

it is definitely hard you have to re do your whole life sometimes and that includes friends and family, There is a lot of people who are not educated about fibro and sometimes they dont care to know until it happens to them. sometimes i wished i could trade all my illnesses for one day with the ones who are think its all in our heads and see how they like it,and you do have to just get out and try and have fun it is hard one thing you could do is keep a log on how you feel daily and see what days are better than others and try to plan on those days to have some fun. I hope you can find your happy medium and start to get back on track with some fun.

deleted_user 04/05/2011

What is DDO?

deleted_user 04/05/2011

Dungeons and Drangons Online. I think.

deleted_user 04/05/2011

Yes. D&D or DDO is Dungeons and Dragons online. A MMORPG.

Jessica-Cornejo 04/05/2011

I played WoW for years, and I talk to a very few people online. But my best friend wants me to get out of the house...as I said before I think he wants to go out and not feel guilty. So online games I suppose don't count in his eye.
Just how many friends in real life are required to not be a loner. lol

deleted_user 04/06/2011

What you probably need to explain to your friend is that he is unique. Most people run far away from us in real life. So in order to fight depression, you have to use online friends to help you get by. Of course all of us would rather have human contact and friends to go out with and have fun with in real life. But through no fault of our own, these people don't tend to stick around. They have no idea that we still want all the same things before we got sick. I mean, look at me. The person I was dating found out about my medical condition and because I broke up with him, effectively tried to murder my soul. He purposely used my illness against me and said cruel things to try to convince me that no one would ever love me and I would never fulfill any of my hopes and dreams of a family. This is the kind of crap we have to deal with so it's not weird to seek comfort from people who understand where ever you can find them.

CarrieinSK 04/06/2011

I am very social by nature but geesh, I just don't have the energy or stamina to sit through things anymore. I was invited out for supper by my coworker on her last day (retiring) and I turned her down, using weather as an excuse. I just don't WANT to go out. My two kitties are great company, and my hubby and I usually play a game of crib, play my Cityville game and watch tv every night. I'm fine with that. If you are comfortable with staying home, then those around you should be too. It's okay to stay home as far as I'm concerned. :) As long as you don't get too lonely or depressed about it.

Jessica-Cornejo 04/07/2011

I think because I use to say I was lonely he thought I meant for company. But I didn't mean that. I felt like no one understood me because know one around me knew what it is like to be sick. But ever since I came here I don't feel that way anymore. It is so tiring to deal with real life outings.
Of course I'd love real life company but on days like today, I'm not even sure how I am going to get my lunch. If a friend was to show up with food, and wanted to watch tv with me, and I wasn't expected to make conversation (cause really I prob don't even make sense right now) I would be so happy!

Join the Conversation