Just shy of my 21st birthday I was diagnosed with rheumatoid arthritis. It altered the course of my life when I had to give up a career in music to pursue other paths that didn't hurt quite so much. My aches and pains came and went when they wanted over the next 20 years. In 2015 I started having more pain, different pain than I was used to having. I visited with my rheumatologist and after poking and prodding me, and my subsequent winces, he concluded that I have also have fibro.
It wasn't something that I had considered before. So I started reading and all of a sudden I realized that I've been living with this for years. All these pieces fell into place explaining all the off the wall pains and struggles that I'd been experiencing for so long. It wasn't a whole bunch of unrelated conditions, it was all one thing!
While I found comfort in knowing that what I was living with had an actual diagnoses, I also found myself blown away by the fact that I've just assumed that everyone felt this way... but they don't. People don't just hurt.
I'm angry. I'm bitter. I try to be strong and I push myself hard to stay active. I wish the people in my life understood me better. I don't like to complain about how I feel to my friends and family because I don't want pity and I don't want to sound like a whiner or hypochondriac. What I feel is very real and very invasive. I just need people who understand me in my life.
And that's why I'm here. To connect with you, to share with you, to commiserate with you and to celebrate with you. Please add me to your network.
Hi Lady, I was just about to resign the group because I don't love the format and because I mistakenly have my whole displayed. But when I read your words "I'm angry and I'm bitter", I had to stall. Thank you for expressing anger. Thank you for telling the truth. I had my career in music, and had to walk away in one day. Pretending that a monstrous disease has taken the wheel of one's life is someone's "plan", or posting little pastel-colored images with trite sayings is just sweeping it under the rug. Well said, L Nottingham! I'm angry and bitter, too.
Thank you, Melissa. I agree with you. I think that I have every right to be mad. I'm not pitying myself, I'm angry.
I'm very active (at least I try to be). I workout 3 days a week in a fantastic all ladies bootcamp gym. I modify when I need to or take days off, but they are so supportive and motivating when it comes to keeping me active. My husband has recently taken up trail running and I've been trying to run with him since it is something I'd love to be able to do. But progress is slow and not very progressive. I work so hard through so much pain and I feel like I don't make any gains. INFURIATING.
This disease wasn't put on me as part of a plan, it just happened and now I need to deal with it the best I can. Pretty images and sentiments don't help as much as real human interaction will, even virtually, I'm hoping to get that here.
There is an old phrase Melissa it that it is better to get pissed-off than pissed-on hopefully you will soon learn the difference. We have many members are who pissed off and fighting hard every day to prove it. They make plans because the disease will NOT go away. They remind themselves daily with those "trite sayings" that they have fibro, but fibro doesn't have them.
No one is going to give back what you think you have lost. All you will ever have is what you take and take back. Its not like you have Stage IV breast cancer (we have members with that too) Every second with your self glued to the pity pot pretending your self pity is righteous anger is a second lost of getting working for what you want.
Expressing anger for and about others that have taken up the fight in their own ways only puts you that much further behind.
Hi. I do understand how you feel and do not devalidate anyone’s feelings by no means. I have been chronically ill and disabled for very long time. I will not go into the long list. I do want to tell you that I did leave behind things that I love to do such as studying ballet for 18 years, singing, and playing the piano to name a few. No, I cannot do those things anymore however I am grateful and happy that I did for a very long part of my life. Now I take joy in watching and listening to those things. I did have to change my life and my perspective of my life. For me personally to keep anger and bitterness’s alive will place a negative and harmful impact on my life and it is certainly counter productive. I,on the other side of the coin have had people being angry at me because I am NOT angry or bitter and have made me feel hurt because I do not and have even challenged me as if I am lying or in denial which is certainly not the case.I have lost my independence. And I am mostly homebound. I have cried and cried and cried but I have stopped doing that for now for myself. Because it is my life now and I have had to change and I have had to make adjustments and had to make other choices. And one of those choices is that I am not angry and I equally don’t want other people to be angry at me because of that. I do not judge or criticize anyone for how they deal with illness and disability however I do want to be as supportive and compassionate as I can be as I hope others can be for me as well. I send you best wishes and
HUGGGGS for that is what I like to do and I hope you will recieve it in the spirit it was given
I'm here for all the hugs and all the connections I can make to help me stay positive!!!
suzie said:
Hi. I do understand how you feel and do not devalidate anyone's feelings by no means. I have been chronically ill and disabled for very long time. I will not go into the long list. I do want to tell you that I did leave behind things that I love to do such as studying ballet for 18 years, singing, and playing the piano to name a few. No, I cannot do those things anymore however I am grateful and happy that I did for a very long part of my life. Now I take joy in watching and listening to those things. I did have to change my life and my perspective of my life. For me personally to keep anger and bitterness's alive will place a negative and harmful impact on my life and it is certainly counter productive. I,on the other side of the coin have had people being angry at me because I am NOT angry or bitter and have made me feel hurt because I do not and have even challenged me as if I am lying or in denial which is certainly not the case.I have lost my independence. And I am mostly homebound. I have cried and cried and cried but I have stopped doing that for now for myself. Because it is my life now and I have had to change and I have had to make adjustments and had to make other choices. And one of those choices is that I am not angry and I equally don't want other people to be angry at me because of that. I do not judge or criticize anyone for how they deal with illness and disability however I do want to be as supportive and compassionate as I can be as I hope others can be for me as well. I send you best wishes and HUGGGGS for that is what I like to do and I hope you will recieve it in the spirit it was given Suzie
Goodness, I can get cranky and I have to keep myself in check. I hope that by surrounding myself with people who can say, "I totally understand why you are angry, now let's focus on the positives" will help me. When I feel alone in this fight I can get pretty dark. It can be hard to climb out of the hole.
ModSupport said:
There is an old phrase Melissa it that it is better to get pissed-off than pissed-on hopefully you will soon learn the difference. We have many members are who pissed off and fighting hard every day to prove it. They make plans because the disease will NOT go away. They remind themselves daily with those "trite sayings" that they have fibro, but fibro doesn't have them.
No one is going to give back what you think you have lost. All you will ever have is what you take and take back. Its not like you have Stage IV breast cancer (we have members with that too) Every second with your self glued to the pity pot pretending your self pity is righteous anger is a second lost of getting working for what you want.
Expressing anger for and about others that have taken up the fight in their own ways only puts you that much further behind.
Its great to let go once in a while, we all need to and gosh knows it happens to all of us. But what you don't do, and leads to my VERY rare involvement is trash an entire community because they are too positive and don't "get it" That is going too far. There are people like Suzie who has had far more that her share and yet keeps on plugging and supporting others. She is an example to us all.
The other thing you don't do is EVER EVER trash my (our) moderators and the results of their hard work as being less than what you want. If don't fit, that's fine we'll give you a full refund and wish you well. The ladies moderating here, are mothers wives some able to work some not able and and have one thing in common FMS (and several them far worse Autoimmune piled on top) I will not tolerate them being marginalized in any way. They put in hours every day helping others here but they are NOT"Pretending that a monstrous disease has taken the wheel of one's life is someone's "plan", or posting little pastel-colored images with trite sayings is just sweeping it under the rug" They are DEALING with it or more to the point LIVING WITH FIBROMYALGIA. (the name of this community) They are NOT paralyzed by anger. Instead of someone threatening threatening to quit because this community doesn't meet their expections, and trying to pull others in their dark hole with them. They might be better served to see how others have climbed out of that place say like Ladynottinghams incredible photography
ladynottingham said:
Goodness, I can get cranky and I have to keep myself in check. I hope that by surrounding myself with people who can say, "I totally understand why you are angry, now let's focus on the positives" will help me. When I feel alone in this fight I can get pretty dark. It can be hard to climb out of the hole.
ModSupport said:
There is an old phrase Melissa it that it is better to get pissed-off than pissed-on hopefully you will soon learn the difference. We have many members are who pissed off and fighting hard every day to prove it. They make plans because the disease will NOT go away. They remind themselves daily with those "trite sayings" that they have fibro, but fibro doesn't have them.
No one is going to give back what you think you have lost. All you will ever have is what you take and take back. Its not like you have Stage IV breast cancer (we have members with that too) Every second with your self glued to the pity pot pretending your self pity is righteous anger is a second lost of getting working for what you want.
Expressing anger for and about others that have taken up the fight in their own ways only puts you that much further behind.
While I understand that the message that was left on my post from Melissa was aggressive (that's her business... not mine), I'd really like to get back on point with the fact that I'm a new member looking for support. That's why I posted. I feel like this introduction of myself has been hijacked and the focus has been directed toward an angry commentor rather than on my reaching out to a community.
So once again, I say hello! I suffer from fibro and RA. I'm hoping to find a community for support.
ModSupport said:
Its great to let go once in a while, we all need to and gosh knows it happens to all of us. But what you don't do, and leads to my VERY rare involvement is trash an entire community because they are too positive and don't "get it" That is going too far. There are people like Suzie who has had far more that her share and yet keeps on plugging and supporting others. She is an example to us all.
The other thing you don't do is EVER EVER trash my (our) moderators and the results of their hard work as being less than what you want. If don't fit, that's fine we'll give you a full refund and wish you well. The ladies moderating here, are mothers wives some able to work some not able and and have one thing in common FMS (and several them far worse Autoimmune piled on top) I will not tolerate them being marginalized in any way. They put in hours every day helping others here but they are NOT"Pretending that a monstrous disease has taken the wheel of one's life is someone's "plan", or posting little pastel-colored images with trite sayings is just sweeping it under the rug" They are DEALING with it or more to the point LIVING WITH FIBROMYALGIA. (the name of this community) They are NOT paralyzed by anger. Instead of someone threatening threatening to quit because this community doesn't meet their expections, and trying to pull others in their dark hole with them. They might be better served to see how others have climbed out of that place say like Ladynottinghams incredible photography
ladynottingham said:
Goodness, I can get cranky and I have to keep myself in check. I hope that by surrounding myself with people who can say, "I totally understand why you are angry, now let's focus on the positives" will help me. When I feel alone in this fight I can get pretty dark. It can be hard to climb out of the hole.
ModSupport said:
There is an old phrase Melissa it that it is better to get pissed-off than pissed-on hopefully you will soon learn the difference. We have many members are who pissed off and fighting hard every day to prove it. They make plans because the disease will NOT go away. They remind themselves daily with those "trite sayings" that they have fibro, but fibro doesn't have them.
No one is going to give back what you think you have lost. All you will ever have is what you take and take back. Its not like you have Stage IV breast cancer (we have members with that too) Every second with your self glued to the pity pot pretending your self pity is righteous anger is a second lost of getting working for what you want.
Expressing anger for and about others that have taken up the fight in their own ways only puts you that much further behind.
Sadly over 35% (depending on whos research you read) of Arthritis patients also suffer with fibro. While Bens friends does not have an RA community, they have a great fibro community. I will tell you the very best thing you can do for yourself here is take advantage of these folks experience. It sounds like you have a sharp doc. If you find one who doesn't stop because he has a good "working diagnoses" he's a keeper.....
When I say take advantage of these folks experience, I mean that in a very concrete way. As you learn to separate what is fibro and what is RA, your treatment will improve. (I know it doesn't seem that way when life starts piling on but it will) They can help you figure that out. Lots of them have multiple Diagnoses. I don't know how your RA effects you. Many patients have enthesitis. Although trigger points aren't much used for FMS anymore, the overlap between your entheses and trigger points is still important. Prolly one of the reasons it took so long to figure your deal out. Anyway the two charts below can help. There is overlap BUT its not the same. learning your body and learning the source of your pain and keeping track of it will help your doc evaluate his treatment. Its all little steps. One cool think is FMS work a LOT gaster than most arthritis meds. Hang in there and Welcome.................... (the black dots are arthritis the red dots FMS)
Hi Lady, haven’t been on in a while, wanted to say welcome! I completely understand where your coming from. I have had FMS since 95 and was diagnosed in 01, no Doc.understood the pain I was in. I was young, I needed to move more, I had 2 young kids at the time. You think I didn’t move? But I was always tired and in pain. They called it Chronic Fatigue Syndrome back then. Well I have just about got settled in my new place. It has been an exciting 2 months! Glad to be back with you guys! Thanks for being here! And again WELCOME b----h all you want I am here if you want to chat and vent we all need to now & again. Have a great day! Hugs Donna
