I'm glad I found this forum! Support is definitely needed right now!
I've suffered from pain and exhaustion for the last 7 years or so. I asked a doctor about it about 5 years ago but was told it was probably just stress, nothing to worry about, it'll go away. I feel a lot worse now than I did then, so I went back to the doctor (a different one) a few weeks ago, and he told me yesterday I had fibromyalgia.
He briefly told me what it was, but didn't really tell me anything I haven't already heard from tv commercials. Other than that, I'm sort of clueless. I'm also a bit depressed about the diagnosis too. From the little bit I read online last night it seems like a hopeless condition. I'm 27, and I've been dealing with this for 7 years already. To know I'll probably always have to deal with this is just depressing, and makes me feel really bad for my kids.
It's nice to know what's wrong so I can try to start managing it now, but I have no idea where to start or what to do!
Welcome to the group. This is definitely a great place for support. I too am young. I am 26. I was diagnosed at 19 after starting to show symptoms at 13. You are very right. Finding out that what you have will never go away is very depressing, but the thing to remember is that it can be managed. Working closely with your doctor and doing what they say can have a big impact. If you are lucky you will find a treatment that works right away. If not, don't give up. We have all been where you are and we are all here to listen! From what I can tell there is no guarantee that you will pass it on to your kids. So worry about that when you have to. Take one day at a time. You will have to do this for the rest of your life. I know it sucks but it is important to remember that every day is a new day and every day has the chance to be bright and maybe pain free. You will have your good days and your bad. Even when the bad out weigh the good, the good days do come back. Please message me or email me if you want to talk. ■■■■■■■■■■■■■■■■■■■■
I sure hope I can figure out how to manage it. I've never noticed any particular patterns that cause flares, except sometimes stress. Other times it seems to come out of no where. My mind/memory is horrible so most likely I just don't remember enough to catch any patterns lol. I decided to become vegetarian a few months ago, and I noticed that it did seem to help a little bit. I still have had flares, one was pretty bad, but I had no idea what triggered them.
As for the kids, I feel bad bc I've never been able to do much with them and this diagnosis seems to say that it won't change. I either hurt too much, or I'm too exhausted or both. Doing something with them, even if it's something small could mean that I won't have enough strength and energy to make dinner, or get a load of clothes washed. I only have so much in me, so it seems like I have to trade doing one thing to do another. Stress usually takes away most of what energy I do have.
I do have good days and bad days, but mostly spend most of my time in the better part of the bad days...then theres really bad days. Occasionally, I'll get an ok day. I usually spend this time getting caught up on chores, but then next day I usually end up with a bad day...or two, or three. I hope to eventually start seeing a few more good days at some point! :)
Welcome ! I’m new to this group myself. I think it is a wonderful place for information and support. I was diagnosed April 2012 so it’s been a year and I’m slowly starting to get to a point where I can share. I’m older (48) and I have three children the youngest is 14. I feel bad that I can’t attend his school and athletic events like I did with his brother and sister. I know as a Mom u want to be all and do all but love and attention even from the bed or the couch goes a long way.
Fibrofog makes it difficult to express my thoughts but I’m glad you finally got a diagnosis so you can find a treatment plan that is best for you. I wish you the best in this fibromyalgia journey.
Thank you! And I'm glad your getting to a point where you can share. I do what I can when I can with the kids...mostly from the couch these days. They're both boys, ages 6 and 7, so they're pretty active. I'm going to try and get them to the beach once a week, but idk, we'll see how that goes.
I don't have any friends, and my family lives 1000 miles away, so I really have no support. That's why the first thing I did after I got diagnosed was look for a support forum. I'm trying to get my husband and kids to start helping me out around the house, and to understand why I just can't do it anymore. I've been doing this for a few years now. I thought with a diagnosis it might make it more 'real' to them, but it hasn't made a difference yet lol. Kids are only 6 and 7 so I don't expect them to understand, but I do expect them to at least clean up after themselves.
That's terrible! I don't understand why anyone would think fibromyalgia isn't real? If you can see it, hear it, or feel it, then it's real. I feel it, and my family can see the look of pain on my face, and hear my painful groans....that's quite real to me.