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08/03/2010 11:48 PM

Looking for a new support system

TCRegan
 
Posts: 1
New Member

It's been a few months since I've had a proper support group for my fibromyalgia. I left my old one because of several negative things that were said to me in regards to a post I made talking about my weight and how, although I knew I was more or less ideal weight now, it was thirty pounds heavier than I'd ever been and only ten under what I weighed at peak pregnancy weight. Apparently I depressed quite a few people by telling them my weight and the general outcry was that I should shut the heck up and stop complaining because I was perfect.

NOT what you want to hear when you just went through a really bad flareup over the weekend and were in a depressed as hell state.

I was diagnosed almost five years ago. It was December 13th, 2005. Funny what we remember, isn't it? When we can't remember where we put our cell phones even though we could've sworn we were JUST using it and .. oh wait. There it is. In our hand. Pshht.

I spent the better part of six months trying to get a diagnosis and I know I'm among the lucky when it comes to that. Some people take years to get diagnosed and I suppose I should be thankful for the smallest of favors. The first doctor was with was awful and refused to believe I had fibromyalgia, saying that I was too young to have it (I was 22 at the time) and that I should be fine because all the blood tests checked out (lyme, lupus, rheumatoid arthritis, etc). But then she wanted to test me for HIV. I was offended, mostly because three years previous to that I had been tested clean after giving birth to my son, and I told her this. I also told her that I had only ever been with my partner, a female who also was negative, since then. She either refused to believe me or refused to help me without the test.

In short, I told her that she could have her test only if I could have my rheumatologist referral. I got my referral, she got her test. (Negative, big surprise there). I was on a waiting list for about three months and in the meantime I found a different, more sympathetic doctor. Cut to four a half years later I've been through several other doctors (from moving and travel inconveniences), been on several types of medication, and have cried more times over this stupid, unfair pain (among other things) in a ONE MONTH PERIOD than I care to ruminate on.

So I'm here. With you guys. Possibly looking for any kind of understanding I can find. I don't want to feel like this anymore. And there are other things affecting my mood right now as well that I sure could use some advice on, preferably from people who are much more experienced and definitely wiser than myself.

Thanks for having me.

Reply

08/04/2010 05:38 AM
bluspider
 
Posts: 26
Member

I totally understand where you are coming from. I am pretty new here too but delited you have found this site as I did. seems like most people are super supportive.

I found the weight thing interesting. while i am not heavy, tend to be small, I find that a few pounds difference can make me feel terrible and add to the discomfort. but mentioning it to friend and family I am usually told to - shut up what do I have to complain about? well, it doesn't matter because no matter what the size if the clothes feel even the slightest bit tight I am majorly uncomfortable. I know that weight as an affect so I DO sympathasize, so I don't talk about it here, but it bothers me.

hope you find some relief soon, emotional as well as physical. sometimes, I think the tears are more anger then depression!


08/04/2010 06:10 AM
PCG
PCG  
Posts: 2259
Senior Member

Not sure if I'm more experienced or wiser, but I do give advice for free Laughing

Welcome to the boards, here we are sure t help you out in any way we can Smile

Post as much as you want, get into the discussions currently going on or use the search form to try and get answers Smile

We will be here to laugh with you, cry with you, listen to you and offer you a shoulder and a hug.

Big, big hug for you Smile


08/04/2010 06:29 AM
broken
broken  
Posts: 11044
Group Leader

hello,

you will find as we are told often this group is the best I am not tooting our horn its just what we are told..we have no protical exsept that we dont allow anyone to attack our members for any reason..

as for the weight I understand I no longer am the size I started with.I was always over weight as a child and finally got to the size I was suppose to be and feeling great when it all went down hill with back injury and fibro..I since have gained more weight then I would like to admit and only through fibro problems with my stomach did I loose some ( not away to go)..but even when you are small by other people standards gaining weight makes a diffrence on the body you have..

as for depression do you take anything for it? one of my worst times in my life was when my best friend told me I was depressed I cried like a baby,great something else now..but I have learned to except it and take meds for it..we all have our"blue moods" but true depression can not be something you just get over..if you dont mind me asking what meds do you take?

we support everyone the best we can we laugh we cry we stomp our feet,yell about our stupid doctors and some uncaring people in our lives,we all might not have the same problems but fibro has no diffrence in the way it has taken our lives and made us diffrent..I hope you find us helpful and your new ciber family welcome


08/05/2010 12:07 AM
faieriemama
faieriemama  
Posts: 3346
VIP Member
I'm an Advocate

so glad you chose to come here for support, we welcome you with open arms and hearts. Everyones weight is different and no matter whether your "small" or "large" or somewhere in between, what matters is how comfortable you are with it. Please feel free to post, read, PM and just get to know everyone, I look forward to getting to know you better.


08/05/2010 12:28 AM
MissStacey
MissStacey  
Posts: 14845
VIP Member
I'm an Advocate

Fibro is what we specialize in and multiple other conditions we are pretty familiar with. If you feel you have weight issues there are also groups for that as well. There's a group for almost anything on MDJ! Wink

08/05/2010 12:50 AM
Shelleysmilesalot
Shelleysmilesalot  
Posts: 503
Member

Welcome, so glad you found us. I have had a great experiance with this group and from reading different posts, I'm not alone. We need a support group, so many doctors are just plain in the dark. Others, don't reconize an illness unless they have a test which can scientifically prove the illness.

I was diagnosed over 10 yrs ago. My doc suggested power walking! Oh yeah, talk about flare ups. He reluctanly diagnosed me, with his back turned to me he told me I had fibro. Then he stood up, threw a phamflet at me and left the room. I found myself a new doc for my regular MD. Then he refred me to a rhumatologist. He was no good either but my mom was seeing another doc in the same office. She is fantastic. Currently all my docs are good. It took a long time to find them.

Well, its almost 4am. I am up due to a flair up and my brain is running on empty. So I shall say goodby for now. Welcome againSmile


08/05/2010 06:14 AM
Auntie3285
Auntie3285  
Posts: 9182
VIP Member
I'm an Advocate

Welcome, TC , we re glad you ve found us and you ll love it here as I do.

This is the most caring and supportive group of friends I have ever meant because we re all going thru the same things with Fibro pain, learning to live with it, struggling with dx s and drs., medications etc.

Feel free to express yourself here and glad to have you aboard ~~~ Smile

Marilyn


08/05/2010 06:25 AM
melissadulworth
melissadulworth  
Posts: 68
Member

Welcome, You have come to right site. Everyone on here is very sweet and can help alot. You can ask questions or just vent. We are here for each other.

Melissa


08/09/2010 03:18 PM
jenigood1
jenigood1  
Posts: 3311
Senior Member

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