Cutting out sugar and caffeine has helped me immensely with the fatigue. Caffeine is gone so completely that I don't even eat chocolate anymore. And by sugar, I mean everything with sugar, high fructose corn syrup, evaporated cane juice, etc. Honey works well as a substitute.View Thread
I'm also from a small town, and if there's one thing I can suggest, it's keep trying. Before you see a new doctor, ask if he or she has any experience treating people with fibromyalgia, or anything else you might want to know before making an appointment. That way you won't have to go in if they're not going to be able to help.
Taking care of you is more important than how you're seen. Try doctors in the next town over, if you have to. You may not find anybody who knows enough to help you, but you ought to be able to find someone who believes you and is willing to learn so that they CAN help you.
I've also found that making the time and setting aside the energy to read some books helps. The one that's helped me the most is "The First Year: Fibromyalgia" by Claudia Craig Marek. I read it over the summer and it's helped me come to terms with a lot of stuff, given me helpful ideas for how to take care of myself, and has helped me be a better advocate for myself when it comes to dealing with healthcare professionals.
Hugs! I hope you find someone to help you get back on your feet! Don't give up, mmkay? Giving up is the single worst thing you could do for yourself.View Thread
I wanted to chime in because I may be one of the few people here who has never taken meds of any kind for my fibro. To be fair, I've only been diagnosed for about two years, and provided I take proper care of myself, my pain seems to generally be manageable.
But it's hard. It is very, very hard.
If you truly want to manage your symptoms without medications, it'll take time, a lot of work, and one heck of a lot of commitment to it. It might mean overhauling your lifestyle in several significant ways. It certainly meant that for me.
Sleep is super important. I've found that keeping regular sleeping hours, seven days a week, no matter what, helps. But it also took some experimenting to find the best hours to sleep. Those happen to be between nine pm and 5 am, making me the lamest college student ever, but it works and gives me eight or so hours mostly free of the worst of the fog in which I can get stuff done. The regularity over time has also relieved some of my fatigue. In addition, when I have bouts of insomnia, I drink a cup of The Republic of Tea's Chamomile Lemon blend before bed. It's got several sleep-aiding herbs in it, and most of the time it helps me fall asleep and stay asleep.
Diet can be a powerful way to help manage your symptoms as well. I've started paying attention to what I eat, when I eat, and using elimination and re-introduction techniques have found lots of things that, when I eat them, make my symptoms worse. For instance, I can't have anything with caffeine (including chocolate), sugar, high fructose corn syrup, artificial colors and sweeteners, preservatives, or white flour. Cutting these out and sticking to whole foods has helped tremendously. I also eat small meals and snacks every three to four hours instead of three large meals, and those meals are mostly vegetables and fruits instead of grains. This has significantly improved my energy levels. Not everyone has (or has the same) food sensitivities which could exacerbate symptoms, however, and it's helpful to talk to a registered dietician, preferably one who is familiar with chronic illnesses. I would suggest asking about getting more omega-3s and magnesium in your diet, in case you're not getting enough. They help with the fog and pain, respectively.
Exercise is super important. Tai chi, yoga, just getting up and walking if you can. Something every day. Start small and take baby steps. I've found a physical therapist familiar with fibromyalgia, and the therapy has actually helped. It's miserable to get through, but over time I have had less pain and more energy.
I'm also seeing a therapist. This is the newest step and I'm not sure if it's helping yet, but I've also got some anxiety issues, and we're working on those first. Less anxiety means less stress which means less symptom flares, so it ought to help.
It's complicated and takes up so much time, and being a full time undergrad with a senior thesis to work on, it's hard for me to keep up with. But I am managing without meds, and making progress. Maybe bring up some of these options with your doctor? See if you can work out a plan with her to try some new things before coming off the meds, and see if they reduce your need for medication? Everyone's pain is different, but I think it's worth a try.View Thread
I'm seeing a physical therapist now who's treated fibro patients before, and she's very gentle with her hands-on therapy. Massage isn't helping me much, though, so she's guiding more towards self-stretching and exercises because I'm the one best in tune with my pain and can best avoid what'll hurt. Therapy still kicks my butt, but in the good way that's helping.
Definitely ask your therapist to learn, or offer to educate her on fibro. A physical therapist's job is to help you conquer pain, not cause it. If she won't listen to you and won't educate herself, ask your PCP to refer you to a different therapist. In any case, you're allowed to say "No, I don't want that kind of treatment because it makes my pain worse." Be assertive: it's the only way to convince people to learn.View Thread
Oh gosh, the cognitive problems are the worst for me, specially since I'm currently in college taking 18 credits on top of a senior thesis.
I've found a few things that help. FIrst and foremost is making sure to get enough sleep and eat properly. Straying in either area significantly impacts my cognitive functions.
Regular exercise of some sort helps, and I think this is because of increasing blood flow to the brain or something? Gentle exercise, of course, but exercise nonetheless.
Also, and this is super important, stay hydrated. Try keeping a bottle of water on hand all the time to sip on and refill throughout the day. Dehydration makes the brain shrink like a dry sponge, and it can cause headaches, and, in my experience, problems with thinking, awareness and memory. So hydration is super important.
Other things I haven't tried but have had good things about are meditation and braingames that are designed to boost memory and other cognitive skills.
And I hope the gingko helps if you try it! I've found that chamomile tea is great for concentration in the short term. It doesn't make me sleepy, just calmer and more focused. I've started making peppermint chamomile tea to drink before my more difficult classes, and it does wonders. I have no idea if this'll help anyone else with the concentration problems, but it certainly helps me.View Thread
I have been so overscheduled the past two weeks, with school and appointments everywhere. It finally all caught up with me this morning and I decided to stay in bed instead of struggling through class. I think it was the right decision.
Update time, I guess? I've started physical therapy! Just once a week, and it's kicking my butt, but Johanna knows what she's doing, understands fibromyalgia (hooray!) and I think this is going to help me a lot. She's already taught me a bunch of new stretches and exercises that I should be doing which should help correct the problems she found with my posture. Hopefully that'll reduce my pain levels a bit.
On top of that, I'm starting counseling. I had my intake appointment at the campus counseling center Tuesday, and Nicholas was very nice and easy to talk to. He also understands fibromyalgia! (Specialists nearly always do! If only I could find a PCP who did!) I hope he'll end up being my counselor, because I have decided I like him and I'm worried I'll be too nervous now to talk to someone new. That, and he thinks counseling will definitely help me.
School is still kicking my butt. I don't think that'll change. I am, however, making sure to take time for myself. That's important.
Life was stressful these past few weeks. I mean, super stressful. FedEx having lost my printer was literally the least of my worries. But it's getting better, and I think I'll manage. It'll be okay. I can do this. This small little flare is nothing. I will conquer it. (That's what I'm telling myself, anyway.)
Also, invisible illness week is next week! (invisibleillness.com, I think) I want to put up a poster on my door or something. Maybe make buttons to give to people! Who knows. I'll figure something out, I'm sure.
Gentle hugs to all of you! I'll be checking in intermittently because AAAAHHHH SO MUCH SCHOOLWORK but I am always thinking of you all! Hope things are going well!
Every book I've read and website I've visited has stressed the importance of having a primary physician to help coordinate fibromyalgia care and to check out new symptoms to be sure they're not from some other cause.
I haven't had a primary physician since I was fifteen and my pediatrician couldn't see me anymore. I've been to every doctor and nurse practitioner in the area surrounding my home, and none have been comfortable or helpful, even before the fibro hit me like a runaway semi. And now I'm back at school, I don't have the time or the energy to go anywhere but the campus health center. I thought it'd be alright, but my first appointment there today was a disaster.
The nurse practitioner who works at the health center is not a very friendly person. She's nice, but in a way that makes you feel like she's looking down on you, and I can't stand that. I had a list of things I wanted to talk about, and had been getting even more anxious as I waited twenty minutes past my appointment time to see her. Then I felt like she was rushing me through everything, and it made me uncomfortable. That's the reason I didn't stay with the rheumatologist who diagnosed me; she was always too busy, always rushing me.
Anyway, it was decided that we'd have my iron, Vitamin D and B12 levels checked, and they could draw the blood while I was there. Except she let the student who was with her do it, and that woman has absolutely no idea how to get blood out of someone with hard-to-find veins like mine. I was stabbed with that needle at least seven times, six of which were failures at getting the vein in my arm. She finally got one in my hand, but could only get enough blood for the iron test. I'm pretty convinced this is because she had that elastic band tied around my wrist so tightly that it was cutting off my circulation. And now I've got a couple of painful bruises and pain keeps shooting up my arm from my hand. It's so bad I'm in tears.
They want me to come back later this week for the other blood tests.
I am not comfortable with this nurse practitioner. But there isn't anyone else near enough to campus for me to go see while I'm fighting fatigue, an 18 credit course load and a senior thesis. I have no idea how I'm going to manage. I don't even know what I'm doing here, when I clearly need to get my symptoms under control before attempting to finish school.
I feel like things would be easier if I could just find a doctor who didn't make me feel lousy and actually took the time to listen to me and help me find solutions. I've been six years without a doctor I was comfortable with, but at this rate, I'm worried I'll never find one.View Thread
I've just moved into my dorm room for the year, and so of course it's time to start decorating the door. I really want to make my door decoration reflect things that are important to me.
And so I'd like to put up something about fibromyalgia. Preferably something inspirational or good for a laugh. Also preferably something I can print out off the internet, but if I like a poster or something enough, I'll splurge and buy it. Thus far my google fu has been failing me in finding something i like, however.
So does anyone have any favorite fibromyalgia posters (or something similar) you think I should look at?View Thread
That doesn't sound like fibro fog to me. Well, maybe when I'm also sleep-deprived to the point of cognitive dysfunction, but I wouldn't say what you're experiencing is typical fogginess. I get forgetful and less alert, find it harder to think, and sometimes I blank out but that's usually to do with memory issues. Fibro fog canIt literally feels like there's a fog in my brain and my neurons are having to slow down because of it.
I'd say it'd be worth it to get checked for silent seizures. If there's something else going on, you need to identify it in order to learn to manage it.View Thread
Yes, but I've been asthmatic since birth, so I know that it's normal for an attack and what to do about it.
The best thing would be to see a doctor about it. It could be something serious which is better to be caught soon, or something like asthma that you'll just need to learn to recognize and manage. But you'll never know until you get looked at.View Thread