How to join in the group. i.e., discussions, etc,

Hi, everyone. I hope you are all safe and far from this hurricane and storm that is reaching it's ugly arm into New York. Keep safe, everyone. I am writing because I am confused as to how to get answers to any questions I may have. Do I write these on my blog and they are answered there. Do you have to be a friend of someone before anyone sees your questions. Should one write on their blog every day or whenever one can to keep in touch. I have so many emails waiting to be opened and I just don't have the time to do so. Does each email contain someones latest news on their blog. As you can see, I have many questions. I would appreciate hearing from some of you.

As far as how I am feeling, I am discouraged, depressed and cannot believe the change in me after a few months. I find the pain in my arms is the worse and whenever I get up in the mornings, I can hardly walk for the pain in my back and hips. Does one ever get better from FM? So many questions...answer what you can and hope your weather right now is better than mine.

I live in Peterborough, Ontario and it has been raining all day, cold and windy. At one point, it almost looked like it was going to snow. Do you think we will have snow for Christmas? Happy days, everyone. xoxo Mado

Mado, thank you for asking the questions I have. As an “old hand” at living with le Beastfibro (I was finallyl diagnosed in the '90s) I want to impress upon you that the you WILL have good - even very good - days. The weather you describe is le Beast’s favorite playground. Short of moving to someplace like Arizona, the weather changes of Canada and, indeed, good part of North America are troublesome but you will sorta get used to them.
The only coping mechanism I’ve found to work at all (besides the hot baths, heating pads, electric blankets and medicinal) is learning to say “No”. This is hard to do, family and friends don’t understand they’ll probably say things like “But you look great!”. Each time you hear this try not to rage, they"re just trying to “buck you up”.
If you go back to discussions there’s a wonderful piece - on today’s page 2 - under the heading “please read this”, that you may want to share with family and friends.
Please don’t despair, Fibro may not have a cure but it can be lived, even well lived. Remember, depression goes hand in hand with your physical feelings, it’s alright to feel down. Many times you will be depressed, and that increases stress and that makes flare ups worse. At the risk of sounding all touchy-feely, I will say that trying to find the humor - even black comedy - in things does help.
We’re all here, and we’re all pulling for each other so, can’t help you with the technology of the site , but can tell you that reading and talking with us is a good thing.
Please take care. I believe that you can reach me, if you wish, in the chat room. As I never shut down this site I may not be actually on line but I check in often and would like very much to hear how you’re doing.
Mama Suz


Hi Mado,

The Discussion Forum is the best place to post things that you want others to see, and comment on. It is visible to every member, and it is the first place that everyone goes to see new activity.

The blogs are basically used for your own personal writings. They are visible to everyone unless you change the options at the bottom stating who can see them, and if anyone can comment on them. But because they are more for personal writing, they usually aren't followed by others, so anything you want to share should be posted in the Discussion Forum.


These links can help navigate the different features available here:

http://www.livingwithfibro.org/page/first-time-user-guide

http://www.livingwithfibro.org/page/faq

As avenk said, the emails you receive are usually an update of a discussion you participated in. They can get overwhelming when it's a busy topic! At the bottom of each email you receive, there is a link to option out of further notifications on that discussion. I find that's the easiest way to shut them off.

If you have any other questions, please just ask !

As I live in NY, thank you for your thoughts during this crazy weather ! I hope you're safe in Ontario!

Hugs,
Renie

Hi, Mado! Welcome to our group. I'm sorry that you have to be here but it's a nice group of people to be with.

I think that if you have questions, it's easiest to get them answered in the discussion area. More people visit it and they go to it knowing that it's a place to discuss things. I'm not suggesting that you can't pose questions on your blog; they're just more likely to get answered here than there.

I'm saddened to hear that your symptoms are getting worse. I do find that mornings are the worst, and that sometimes the symptoms ease up some as we limber up during the day. Some pain meds help with that too.

I'm very sympathetic to your back/hip pain as I suffer from it too. I finally had the nerves cauterized in the back, as the doctor felt the pain was from arthritis. It's supposed to last 6+ months but it's only lasted about 4. I mention it because perhaps if you have arthritis in the back and the pain is being amplified from fibro, perhaps cauterization would be helpful. I will warn you, however, that it was EXTREMELY painful for 3 weeks after the procedure, like the worst flare I'd ever had. However, I was still doing physical work so that may have aggravated it.

Please feel free to post questions here and we'll be happy to answer you, as long as we can.

Most importantly, you are not alone. We know what you're suffering and are sympathetic to you. We also believe you.


Hugs,

Petunia

Hi Mado, BIG WELCOME !!! I’m so glad you found us, you will learn so much about fibro & how others deal with everything !
Posting questions on the discussions, just as you did with this post is the best way to get feedback, you can also request& accept friends and then leave questions or comments that will go on there wall.
I know the e-mails can get overwhelming, if you go to your page, on the right side tap on settings, then on the left side tap on e-mail, scroll down and uncheck the ones you don’t want to receive, if you have any problems let me know, but that should work, so you won’t get so many.
Fibro is such a difficult thing to live with, but I can tell you the support here is awesome ! For me I don’t feel like I’m so alone in dealing with this, everyone really understands !!! Take one day at a time it’s a learning process, there is no cure, but it can get better.
Hugs& blessings