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my thoughts on this forum
16 Replies
Karen - September 18

I think this forum is a big joke all the way around. You people are only interested in people who feel a lousy as you do and are completely feeling a bit sorry for themselves I might add. Oh I now I don't have to come to this forum, there are others. But if I get a response after saying this then at least I got a reaction from someone!

 

Joni - September 14

Karen, quite frankly, I wish people like you wouldn't comment on this forum, but you do have the right to your opinion. For many this discussion is a god-send to have others who understand what they are going through and to realize you are not alone. Obviously you don't feel the depression, anxiety & pain the way people with fibro do or you aren't a very sensitive person, especially to others' feelings. I'm sorry you feel that way and think it is a big joke. I hope that you don't have to live with the pain, depression & all the symptoms fibromyalgia brings. God loves us just as much as he loves you! I am thankful for this forum. I feel better giving words of encouragement & helping people understand this illness. Good luck to you...

 

Jean - September 14

I concur. God Bless

 

Lora - September 14

Karen, I understand completely where you are coming from until the day I went from fit and active to barely being able to move or think. My exhusband died from a stroke and to be honest, that is the symptoms I experienced. No one can explain, unless you have been there, what type of feeling it is to have your body fail you after years of being in total control. I do think I am losing my last marble some days. I never thought this would happen to me or I would be a person with chronic pain. I do hope you don't have to experience such lack of control and things you enjoy. Thanks for sharing your thoughts. I felt the same until now. The upside to the disease, it is not terminal and it puts your life and those things that are most important in focus. Live each day to the fullest.

 

tonyab1838 - September 14

I think that this forum is the total opposite of what you call "feeling sorry for ourselves". I know that before I got sick I worked all the time and work was my #1 priority. Now me and my family are the #1 priority in my life. You don't know how lucky you are until something bad happens. I don't sit around feeling sorry for myself and drag everyone else down with me. I embrace life and realize that things could be worse. Even when I am crying from the pain, I think to myself that at least I have family and friends that support me. You obviously don't know what it is like to have chronic pain. I hope that you never have to experience it. I take that back I wish that you could experience our life for 1 day. Then you would realize that we are just glad to be able to have a forum like this. Every electrical shock you feel, every bit of swelling and numbness, some days you can't walk and other days you can't think straight because the pain is so bad. Yet we all find the strength to go on and help others. We are AMAZING people!!! We raise families, work our jobs, contribute to society and all while dealing with a horrible disorder. We thank God every day and maybe that is what you need to do. We don't feel sorry for ourselves, we feel sorry for people like you. I hope that God touches you, like he has touched everyone in this situation. Take care and God bless!!

 

Karen - September 15

I am sorry if I hurt any one's feelings, but I did get a response even though I didn't believe a word I said. I have fibro and it is getting worse. I was just lashing out becasue I was looking for support a couple of months ago when I lost my mother in law and no one even bothered to respond. I could have really used the support. It is sad that if I am looking for support for something like death I get no response, but I say something negative about something and look at the answers I got.

 

tonyab1838 - September 15

I am sorry for your loss. I didn't find this site until about a month and a half ago. I understand that you are upset but lashing out is not the answer. You have a lot of stress on you but making other people feel bad, is not a healthy way of expressing your anger. It would have been better just to say what you felt. Honesty is the best way to communicate. I hope that your life takes a good turn soon. Just remember that people on here do care. Take care and God bless!

 

Joni - September 15

I am also sorry for the loss of your mother-in-law. It is tough to lose people that you love. I can understand lashing out. Sometimes when I don't feel good I lash at those around me although I don't mean to. I didn't dicover this website either till last month. I hope that your life takes a good turn as Tonya said. We are now here if you need more support...Take care of yourself Karen!

 

Jean - September 15

Karen, I'm sorry for your loss. I'm new to this site since a couple of weeks ago. It is hard to lose someone you love. With life comes death and it's a hard reality. I can just imagine the stress you felt during that time and your fibro causing you pain and discomfort with the stress of losing a loved one. We all have to vent sometimes and when we do we are sorry for what is said. But on this site we understand so don't feel bad about it because now everyone understands where you were coming from. We all support each other here no matter what the problem. Now is the time to heal and go forward. Take Care Karen. God Bless.

 

Lora - September 15

Hi Karen, I too am sorry for your loss and how sad no one came to stand beside you in looking for support. I understand your feelings. I don't even like myself somedays and can't seem to control the change of my personality that comes with the ongoing pain. I am on my way to Cleveland Clinic Monday. I am hoping to get some new direction and hopefully learn things I can share on this site. When I think I can't take much more, I do use this site to realize I am not alone. Take care, hang in there and remember there are people who do care.

 

Karen - September 16

Thanks to everyone for all your support. I was wrong in saying what I did, but am glad now that the people responded to me after what I said. I do need support right now. My pains are so bad I could do cartwheels if it didn't hurt so much. I can't sleep anymore and none of the meds I am on even take the edge off anymore. I will hang in there and thanks again.

 

Lora - September 16

Good morning. Do you have access to a pool? I get much relief by just floating for an hour or so. I also had to switch to waterbed which was huge help for the morning stiffness. I still don't sleep well, but it did make one less battle... Hang in there? Have you gone to different doc?

 

Karen - September 16

Hi Lora,
Thanks so much for the idea of a pool but I have little access to one. I can't have a water bed becuase I live in an apartment on 3rd floor and they are not allowed. Anyway, I have thought about calling my doctor. She gave me sinimet for my restless legs but that doesn't work anymore and vicoden for my pain isn't working either anymore. I have never in my life hurt so much like I do now. Every muscle in my body feels like it has been hurled off the golden gate bridge. I don't know what to do, but I know I need to call her on Monday and let her know, I need something a little stronger. I have been to a rhuemy and sometimes they are not much help either. Anyway, thanks again.

 

Lora - September 16

I understand. I really don't have any true answers from drs. except for "here is a pain pill" Of course, I am a totally loopy on those.. Maybe I can get some guidance on Monday that may be helpful for you as well. We are still ruling out MS which is frustrating in itself. Let me be nosy a bit. Do you have insurance that has chiropractic coverage? Massage is a big help even if temporary.... They bill it as chiro manipulation, but you have to know what your coverage is. I can help you with that.... Do have the irritating nonstop tingling as well as pain? Are you exhausted on regular basis?
Hang in there.

 

Lora, - September 16

Hi again,,
Yes I have that nonstop tingling along with the pain. Sometimes at night anymore. My legs feel like I have something crawling on them or my nerve endings are jumping around. Any suggestions would be helpful. I have blue cross/blue shield. I am not sure what they cover anymore. I will check it out though. Thanks again. You are sweet!

 

Sherry - September 17

I searched out this website as a result of hearing something on television or radio re: fibromyalgia. I'm not sure I have it. I don't feel tired. My symptom is an excruciating pain in my lower buttocks, radiating down to my right calf. It occurs after I'm been still for an extended period. Chiropractic therapy did little to help; massage therapy has been the only thing that has given me relief. I've had these symptoms for about a year and a half. I also have suffered from restless leg syndrome for several years. Sound like fibro?

 

Karen - September 18

The only way to be sure if it is fibro is to have it checked out by a rheumotolagist. They are specialized in fibro and will be able to answer most of your questions. Not knowing what it is is worse than the fibro itself because you always wonder. Good luck!

 

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