Fibromyalgia Support Group

I am new here. I have recently been diagnosed with moderate to severe fibromyalgia after running the gauntlet of doctors, tests, Xrays, blood tests, and MRIs. To top this off I have had 4 surgeries in the last 2.5 years (knees and spine). I have a hard time relating what is happening to me to my friends and family because even I cant explain it. Im fine one mintue and the next I am in pain, or so exhausted I just want to lay down. My everyday activities that I used to love doing have been curtailed, and I am forced to use a walking stick to maintain balance. I have been attempting to get help from the Vetereans Admin. both medically and financially for the last year, and because I am sidelined from working money is more than a little tight. I just dont know what to tell people since I dont have any physically injury they can see; and I dont know what the next step of this disease is!! does it get worse? does it get better?? what happens next???

Hi welcome to the group you will find a lot of support here. I have just been diagnosed about 2 weeks ago with fibro and chronic fatigue syndrome. I have been suffering with it for 5 years. I will let the more experienced people ansewer your questions, but I will tell you I have a hard time with people saying you don't look sick myself grrr, and my youngest daughter has a bad habit of coming up behind me and slapping me on the back "youch" lol. but anyway I hope to get to know you better

Post edited by: skyrose, at: 12/17/2010 10:02 AM

Welcome to both of you! I am trying to cope with trying to choose what I can to do today and what I can save til tomorrow. Very frustrating. I have mild to moderate fibro and it is managable with my meds. I can go and do just not like I used to. I get very tired and wore out after a short period of time. It is challenging to try to explain to friends and family what is going on. My husband is very understanding and lets me determine when and where we go do and how for how long. I have found it depends on what I wear.... lol. If we go somewhere and I wear jeans then it is a shorter trip than if I can wear sweats or shorts. The pressure from the jeans is too much sometimes.

I too go to the VA. They will be managing my meds once my rhuemy has them down pat. Helps financially a lot to do that way. My rhuemy is all for it. He has no problem working with the VA on that. I hope you can do the same thing simplebeliever.

Many warm hugs to both of you today!

welcome to the group. There are a lot of caring people here to give support and listen when you need. There are some links in the resource forum under letters to family and friend. I tried to add the links here but my computer is freaking out today. I really like the spoons theory and the letters. They are good to have friends and family read to help understand what you are going threw and why you have limitations. Hope to be seeing you around the group.

Post edited by: john645, at: 12/17/2010 11:40 AM

john645 is correct, go and look at the letters there and it will help you and your family and friends alot, only if the SSD people would read them MAYBE they would also understand how dibilitating this disease is.

Welcome to the family, I'm so sorry that you are suffering. I'm glad though that you have found us, you have come to the best place for support, understanding and the greatest people ever!

You don't have to go through this alone anymore, we will help you through whatever we can. So many of us experience the same problems, first of all, gettting the dx and then after finding the right doc and meds that help, the real work begins, trying to help others understand. That can be a chore all of it's own. First I want to tell you that some people will never "get" it and they won't care enough to educate themselves or sadly, they simply won't believe you. These are what we call, toxic people and you will do better to stay clear of them if possible, the less stress you have in your life, the better off you will be.

The closest people to you could perhaps go to doctor's appt's with you and have the opportunity to ask the doctor questions. They could also come here, do some reading of their own or chat with us, real people that suffer and face the same challenges that you do.

We all have so much in common yet we suffer in different ways so it's hard to predict what will happen with you. Some people have "flares" now and then while others are never actually flare free. Some members can work and raise children while others like myself can no longer work, that's what I mean about everyone being different. I suffered financially and had to give up alot while I filed for disability but you learn to go without things that you probably never really needed to begin with lol.

Also, for me, keeping a positive attitude and learning to appreciate the little things in life that I used to take for granted really helps me alot. It's also a great help to me to be able to lend a hand to others in need, that is healing to me.

Feel free to make yourself right at home, ask questions, vent, whatever you need. You can also PM me or any member for that matter if you would like to talk privately.

I wish you the best of luck and look forward to getting to know you

Welcome!

we are here for you, to help you on this road that you have to take from now on.

Here you'll find friends and support through the good and bad times

I'm really foggy right now, so I'm not good for advice, but feel free to PM any questions you have and I'll do my best to answer them or help you find an answer Also Pm me if you wish to talk, any time

Hugs

Paula

Hi! very nice to meet everyone !!!!

I myself am new too, I thought I was the only one and thought I was going crazy!!! I too cant do much, and have been to doc after doc and so many tests I am surprised I have blood left and that I am not glowing in the dark from all the ct scans!!! I ache all over and am numb and tingly all over and feel sunburned from the inside ( I guess that is the "burn" everyone talks about) Its so frustrating, I too cant do the things that I love to do I use to be a fast walker, now I walk really slow and we live on the third floor, no elevator and it just kills me to walk up three flights of stairs.. I drop things and I cant drive sometimes cause I cant hold on to the steering wheel. washing clothes and taking them out of the dryer is such a chore cause my hands hurt so bad!

Talk to you soon and Happy holidays.

Post edited by: imhoneybunches, at: 12/19/2010 03:12 AM

Welcome Imhoneybunches, It's great that you have found us. You will find a lot of caring people here that all understand what you are going threw. As you read some of the forums you can see the openness that we discuss all the aspects of our lives and the challenges we face, so please just jump right in. One thing you might want to do is go to the resource forum and read some of those posts, especially the letters thread, they can be helpful to both you and your loved ones.

Once again welcome and hope to see more from you soon.