Hi everyone. I was looking around online for a fibro support forum, and this one appeared to be the most active and the most helpful, so here I am. :)
I was just diagnosed with fibro a few weeks ago. I've been dealing with systemic lupus for 4 years and while I'm not happy with another diagnosis, I am relieved to know why I'm having so many problems that my lupus medication wasn't helping with (especially the back pain and stiffness, the fatigue and the nonexistent energy level).
I guess I'll leave it at that for now. I look forward to meeting all of you and learning more about this disease.
Hi Red - Glad to have you in our group! This is a fantastic website. I joined about 5 days ago and have made some friends who really understand all I am going through. Suggestions and advice are always going on here and I have to say, that mentally, I feel so much better knowing I can connect with others that have the same symptoms that I have. With Fibro,if you are constantly tired from lack of sleep and have no energy, we call it 'fibro fog,' How are you doing in regards to your balance? A lot of women have balance problems or tripping and falling down. This is what goes on with me. I have had Fibro for a little over 30 years, and I can manage it pretty good. It's important that your doctor knows everything in regards to what Fibromyalgia is. Through the Fibro website, you might also be able to find a doctor who specializes in this, that's in your area? I am so sorry about your Lupus. Feel free to ask any questions you want and really take advantage if what this website has to offer. Red, you are not alone in what you are going through. Gentle hugs, Laurie
Welcome to our site! You can find a lot of experience and assistance here. Members are always willing to share their experiences and info with you, as we all are in this together, so to speak.
Wow, that's a double whammy of a diagnosis. But you're right, now you know why you were having all of those mysterious pains. And it does seem that many fibro people also have an accompanying auto-immune illness. It's possible that they had the auto-immune illness first but it was "silent" until the fibro pain started up as a warning. That's one theory, anyway.
Please feel free to go through the other threads, as you will find a lot of helpful information in them. You can also look up a particular symptom by typing it into the upper right search area, and you'll pull up older threads dealing with that symptom.
Also, feel free to contact me (by clicking on my member picture) if you need someone to talk to.
Laurie, I don't seem to have many issues with balance. Sorry you do. I am sleeping better since starting Gabapentin (it makes me really tired), but back pain and stiffness wake me up throughout the night. My internist treats me for the lupus and the fibro (he is wonderful!), and he started me on Wellbutrin a few weeks ago. It does help the back pain and muscle tightness, but not enough. It has given me a nice energy boost though (it's a stimulant).
Petunia, my doc thinks the lupus pain brought on the fibro. He definitely agrees that they tend to go together. Thank you for the tips. I hadn't found the search feature, and I'm sure that will be very useful.
I'm sorry you both have to be here too, but at least we're not all alone.
Thanks Avenk! I am amazed at how active this group is. I joined 2 fibro groups on facebook and my initial "new here" posts weren't even responded to. I will be leaving those. This site seems to be what I was looking for. :)
It's interesting that your doctor thinks the lupus came first and brought on the fibro. It does make sense, doesn't it? Illness followed by extreme pain and overstimulation of pain signals.
I hope you can find the right mix of drugs to help you sleep better. I honestly think that poor sleep brings on more fibro - or more symptoms. But there are things out there that do help. I've been lucky thus far in being blessed enough to be able to sleep. I really feel for those of you who can't.
Yes, you've said it well - at least we're not alone. Another blessing.
Hi Redwingfan, that’s a hockey team right ? Anyway WELCOME !!! I know you will make lots of connections and learn just about all there is to know about Fibro, I’m sorry to here you have lupus, I have a friend that was just diagnosed, any special words of encouragement you can give me to pass on to her ?
Fibro is such a difficult entity on its own, put it with other things…Ugh
I can say you are in the right place for support
I’m so glad you have joined us !!!
Hugs & blessings
Hi Redwingfan, Im a little blonde so I had to look up red wing lol. Hockey fan are you? We have the Panthers not far from us, but I have yet to go to a game. Only been to the arena for a James Taylor concert. Im a Dolphins fan even though we have stunk these last few seasons. My daughter cheered for them for 3 years so its hard not to support lol. I am really glad you find our site, so many good discussions and tons of great people. There will always be someone here for you... Ask a question and most likely someone will know the answer or find it for you. Welcome aboard, Gentle hugs, Robin
Ps. Im going to watch some hockey when its season.... :)
Thanks Dee! Yes, the Red Wings are the best hockey team. Lol.
For your friend who was just diagnosed with lupus, my advice would be to educate herself but realize that no 2 lupus people are the same... the disease is different with everyone, so she shouldn't be frightened by everything she reads. I remember my first weekend after diagnosis, researching it online and thinking "I'm going to die. This is going to kill me". But, mine has stayed what they call "mild" - no real organ involvement so far, and my doc has me pretty well controlled for now. Also, she should be very careful of the sun. If no one told her that (most docs don't), have her research it. I have become a vampire, as UV rays and lupus don't play well together. I learned the hard way, so I try to educate newbies before they get surprised like I did. :P
Thanks for the warm welcome! I am happy to have found this site.
Thanks for the warm welcome Robin! Yes, huge hockey fan here. I am missing it this year. Due to the lock out, there is no hockey. Hopefully by next fall they'll have everything straightened out and hockey season will start.
Dolphins = football, right? I know nothing about football, but good for your daughter!
I'm glad I found this site and look forward to getting to know everyone better.
I'm new here myself, I just found the site yesterday. It looks great and people have been really nice before I could even get to my profile, LOL! Love your screenname, I'm a Habs fan myself. :) I've been diagnosed about 2 years, but can recognize my symptoms as going back a couple before that. I get the pain, the exhaustion, the horrible brain fog... Just this past week, I was severely sensitive to everyone in my office building who wore perfume. The elevator trips were making me gag. Welcome, and let's be newbies together!