I'm sorry you have had to find us. But there are a lot of very knowledgeable people on this site. First thing first, is that we are all different and our flare ups do different things and different medications work for some and not for others. The key is to finding what works for you.

For me, doing what I can at the moment works, but in moderation. If I am feeling decent, I may go for a walk. It might not be the 3 miles I want to go, but something is better than nothing. I have also found that taking short breaks while doing things I enjoy helps as well.

Good luck on this journey. Others will chime in with what works for them too.

Hey its good to know im not the on ly newbie on this site :). As has been noted "doing what I can at the moment" is working best for me but its really difficult when im trying to budget for a wedding this time next yr and trying to do that on social security is difficult.

Im really thankful Ive found this group and looking forward to getting more wisdom from those who continue to share their story.

lila, I'm so sorry you are dealing with this at such a young age. Did any major life event happen before you got sick? I hate to hear you started so early. I started fibro right after the birth of my twin girls age 30. I can't help but think hormones and stress played a major part in mine. I stay in a constant flare b/c I live life as much as I can. I try to stay active no matter how much I don't want to. I have 2 little girls age 5 that keep me busy and moving. I hurt all the time and pretty much stay in a flare. The only time my pain was manageable was when I took Lyrica, but there are so many side effects that I couldn't deal with it anymore.

Do you have a good Rheumy? You might also try and find a good doctor to talk to. I hear it can be so helpful. I don't have a lot of time to see extra doctors so unfortunately I don't see one. I work a full time job, luckily accountant sitting all day, and then I have to take care for my girls. It's a very hard life to live, but you are not alone. I still have a hard time handling the fact this is my new life. I stress and worry like crazy what the future holds. I hope we can all find more answers during this hard journey.

I have a hard time handling this too and I keep praying for more answers and peace from the pain.

Hi lila...I'm so sorry that you may have fibro.

I've had it since 1998 and it took me a while to accept it. Feeling useless was a common theme for me. But I learned to carve out a life....but still, I do have that feeling from time to time.

Has the disability department at the university been helpful? Can you finish the courses you started and graduate eventually? Even taking one course at a time, (even if you have to live at home and go to a different school) is worth it.

I, too, have used my copious down time to study languages and film. I had managed to take one course a semester and now I have good comprehension in 2 languages and am continuing to study them.

In general, it's helpful to just submit to the flare and treat yourself compassionately as you would a sick friend. Trying to stay in the moment and not catrastrophize is hard but worth the effort. You can learn about Cognitive Behavioral Therapy prinicples on the web and see how you're doing. Also, it would be good to move around to the best of your ability and stretch a little and not just lie in bed for days; you don't want your muscles to atrophy.

How long do flare-ups last? Days to months, highly variable to each person and among patients. But I would say that for me, the first few years of fibro, the physical symptoms were the worst. Now, I can tolerate air conditioning and lights. I know what makes my condition worse.

According to Robert Bennet MD who had several thousand fibro patients: one-third get better, one-third stay the same, one-third get worse. His website www.myalgia.com is a good reference, so is
the book, "Fibro for Dummies.":

Good luck and please let us know what's going on with you!

Welcome to the group Lila!

I'm sorry that you are having so much difficulty with your symptoms. If you don't mind sharing, an idea of your medication regimen would be helpful.

I highly recommend the book "Fibromyalgia for Dummies" too. You can find it on Amazon. The book will give you a good overview of this complex illness and a lot of ways to try and manage it.

Flares are pretty tricky. They can last a day, a week, a month and so on. There is no way to really predict it. I do however gently suggest that you be more active. Not doing a lot and staying in bed only deconditions you more. On my worse days, I *make* myself move. Generally, I feel better both mentally and physically when I do. Heating pads, hot Epsom Salts baths, muscle rubs, stick on heat patches, Salon Pas (OTC) patches, Tiger Balm rub/patches are all helpful. You can even buy Epsom Salts lotion on Amazon.

You should definitely be asking the school for accommodation since you are ill. I commend you for continuing to educate yourself by learning a new language. That is fantastic!

Every day for each Fibromyalgia (FMS) patient is different. We are all on different cocktails of medications and many of us have underlying conditions that contribute to our overall discomfort. For the most part, over time IMHO you become hardened to having chronic pain and learn to roll with it. At least to some degree. I've been ill since 2008 and ended up on SSDI in 2009. Many people continue to work, get married, have kids and so on. You can still live your life but at a slower pace. I'm older and have had my fun so I'm content with my situation.

If you are really struggling emotionally I'd like to gently suggest that you consider Cognitive Behavioral Therapy. Many of us see a counselor for extra support. CBT will give you tools that will help you learn to live with a chronic illness. It is very helpful. One of our members recently suggested this site as an option too:

https://moodgym.anu.edu.au

Join us on daily check in if you want. Our spokes model, Leo, does a terrific job every day with interesting trivia and some entertaining stories. Or, you can just lurk and read. Let us know if we can answer some more questions. You are not alone. Take care.

Thank you all so much for the support and suggestions. The most valuable thing to me of all of this is that I know I am not struggling with this alone, so thank you.

I did have a very emotional traumatic experience at the very beginning of October. About two and a half weeks after that, my symptoms started and gradually got worse and worse. Perhaps this is connected?

I saw a rheumatologist after seeing a neurologist, endocrinologist and other doctors. The rheumy thinks I have fibro, but like I said I have to get a second opinion. My mom thinks it is Lymes but there is no way for her to know-- she's not a doctor.

As far as spending time goes, I guess I will just continue to grin and bear it. If you guys can do that, then I can too.

I am familiar with CBT from dealing with depression. Good suggestion-- I will revisit the skills I learned a while back.

And for school, the disability services has been excellent and very accommodating. However, I am a music education major, which means there are not many courses I can take online. I will still look into that though.

Again, thank you! I look forward to returning the support to each of you.

FMS is a Neuro muscular issue. In some people, it can be triggered by an accident, surgery, childbirth, emotional or physical trauma. The mechanism that causes it is not understood. There is no cure but it can be managed to some degree with certain classes of prescribed medications. Take care.

HI Im new too dear...it seems like this is a good group to go to at this time though. I have either been in total denial of fibro or angry and depressed. I actually dropped classes and now owe a lot of money. I tried to go through the disability dep like you did but im having a really hard time with doctors and I had no one to fill out the paper work.

Hi, Lila! Welcome to the group!

For me the key is pacing myself, even on my good days, I have to limit how much I do even if I still feel good or "ok". I can accomplish a lot more and have more good days by doing that.

I learned how to play the ukulele while having a bad year in bed a lot. I think you are doing well on your bad days if you are reading, writing, and learning a new language. I can hardly read during a flare, so hard to concentrate. Try to do something pleasant when you aren't feeling well. It might help bring you out of it sooner or at least ease some of your suffering in the process.

Good days and bad days are all different for each person as far as how long they last and how good or bad they can be.

Good luck with everything and please keep in touch!

Thank you all! I guess I am handling this about as well as I can right now. I am going to make a list of easy, happy activities to do when I don't feel well and put it on my wall- that way I always have something to turn to

My fibro systems started just a few days after having a hysterectomy. So yes I believe now that anything major can stress out the body and push it to go haywire. For me I was already dealing with the major stress of having an addict son and mother. Then I was having major female issues (doctors did not figure out I had severe endometriosis until they opened me up for my hysterectomy) and I believe my body just couldn't handle all the mental and then physical stress. That being said the thing I think causes my flares are stress related. I have been taking a mixture of meds, supplements, vitamins and doing yoga. This all seems to work well enough for now but my son is getting out of prison in 4 days and my body is reacting! my neck and shoulders are the worse, its like major tension and pain up into my scull. I have upped one of my meds hoping it helps. So my best advice is to take it day by day, move as much as possible, get vitamin levels checked, most of us are deficient, try different meds and do whatever it takes to keep your stress under control. Good luck, welcome to the club and take care of you!

Fibro demands a long leaning curve. For one thing, some symptom you have under certain circumstances will not be there when those circumstances recur.
Years ago, I went through a horror of pain all winter because of the cold. I had geared myself up to fight it again the next winter, but it never happened (thank God). I have had some sensitivities to hot and cold since then but not to that level again.
I find that it's pretty much impossible to plan for anything. When my brother died in May Ii forced myself to return to Florida. I pushed and pushed and finally, even though there was a lot of work to do, i just collapsed and slept for an entire day and night. After I got home, I slumped into a major flare that is still going on right now. I need to return to deal with his house and possessions, but I can't imagine how. At this point, it is the fatigue that disturbs me more than the pain.

All good suggestions here. I would only add to google The Spoon Theory. That's good for friends and family. And you. It stops you from expecting that you can live as you did before. Good luck and keep coming back.