How long on average does a flare up of symptoms usually last. I'm quite newly diagnosed but I m still struggling with daily fatigue. I'm taking herbal suppliments to help me get a few hours sleep and same for energy but nothing works
I find that sitting or laying in one position for too long makes my body hurt just as much as over doing it physically. The key (for me) is to not over do it. Not to push myself past my limits and honestly, I do know my limits by now. I just get stubborn at times and want to do what I used to be able to do. Sometimes it is hard to identify a limit especially on a new activity but most of us do the same things over and over in our routines and we know what is an acceptable limit. The problem lies in feeling good and wanting to get as much done as possible because accomplishing tasks is theraputic. But even then, I know when my body is telling me, << uh...hold up there girl....you better give it a rest and come back to it tomorrow or you will be in a world of hurt, not be able to come back to it for a week or so and then you'll get unmotivated to finish it and then you'll get all bummed out.>> It's a viscous cycle but the key here is being in tune with your body, learning from past experiences of how long to engage and when to ease up and rest. I make plans to do things around my house and yard and when the day comes, if I dont feel up to it, I dont do it. (Yes! I have found that there will be another sunrise coming.) For years, I could hear those workaholics in my head, chomping at the bit about how bad it is to lay around and do nothing and that I am lazy, useless, good for nothing ...and it made me feel horrible about myself if I wasnt always busy. That little voice recording was going on 24/7 in the back of my head....(get busy, do something, stop being lazy, you dont need this much sleep, it wont kill you to exert yourself, stop making excuses.) It took me years of suffering to drown out and finally kill that little voice inside my head and say, I WILL DO IT WHEN I AM DAMN GOOD AND READY!! WHEN I FEEL LIKE DOING IT... NOT BECAUSE OF WHAT OTHER PEOPLE WILL THINK OF ME IF I DONT DO IT! And once I started to stop listening to that voice in my head and stop caring about what others thought of how I live my life, I began to nurture myself better. I started to listen to my body instead and took my cues there and I paced myself. I still do get flare ups and they last anywhere from 48 hours to 48 days, but I can prevent alot more of them now by being kind to my body and respecting my limitations. We are all human but we dont all function exactly the same due to illness that affect us. Be kind to yourself and take life one day at a time and soak up the beauty each day can bring even when you have to deal with pain. Dont let others who are clueless about what it takes to live your life try to make you feel guilty or judge you. What you give today is your best and as long as you are ok with that, most of the world will be too. Those who are not ok with that can take a hike.
Limit your daily activities, limit caffeine or eliminate it totally if POS. Eat more fruits and vegetables less meats especially red. If you get sick you get a flare up if you get a injury you get a flare up stress flare up. Monitor what you eat foods cause trigger flares. Remove negative ppl and situations. If you have kids try to get a support team in place now. Talk to your family about your fibro in advance. Explain/ give them articles to read about it. Allow them to ask questions and you answer honestly. Tell them what it feels like.
Best advice I can give!
I was diagnosed quite some time back, like 20 years or so ago. I've had flares that I wished I would die because I hurt so badly that even the sheet on my bed hurt. I couldn't hold a book to read or sit up to watch TV. My longest flare lasted about 5 days. That was quite a few years ago. Thankfully I don't get the flares like I used to. My mental state is key to the number of flares I get in my opinon. If I am good mentally meaning not overloaded or feeling stressed, I can manage the flare by backing off my physical activity enough to ease back out of it. I don't know if this makes any sense or not. Too much activity with not enough sleep , eating fast food or not drinking enough water all play on keeping a flare up going. Too much unhappiness or stress seems to start a flare up. And it will start 3 days after whatever stressed me out or made me cry.
There's hope. You'll figure out your own pattern and what works. Lots of epson salt baths with cups (not singular) of salt in really hot water. Lyrica, Cymbalta and Paxil together help, too. If you take one away, the other two aren't effective. And Aderall for the days your legs feel like lead posts and don't want to move. Eating gluten free has helped, too. Taking Advil regularly before I hurt terribly. I take 3 tablets 3 times a day. If need be, I'll add one more tablet. It might seem overwhelming but just take baby steps. And trouble sleeping - that was huge for me. If i can't sleep, I take a benadryl,
Maybe I gave you something that can help?
I have been on just about every drug under the sun that doctors prescribe "off label" for Fibro, since my Neuro determined a long time ago that Lyrica would have way too many side effects for me ( I can barely tolerate Gabapentin and have cut my dose in half for that reason. And when I was first prescribed the gabapentin,I was already on other meds. Well... The drug that has honestly helped me the most out of ALL of them is medical marijuana! I was approved for a legal State issued mmj license after I was evaluated. been an mmj patient for several months now and the cannabis has reduced my Fibromyalgia symptoms by at least 75%! I no longer have daily Fibro pain and flares ( which I used to get 5 out of 7 days a week/ sometimes EVERY day are now gone! I get maybe 1 flare every couple of weeks and that's it! I have cut down on all my "conventional" medications, eliminating 2 meds entirely and I have cut down on all the rest. I am in the process of getting rid of 2 more conventional medications. My goal is to only have to take 2 medications, plus the medical marijuana. I used to also be on opioid painkillers, and now I am down to just 1/2 a pill a day and planning on getting off the painkiller entirely except for once in a great while when I have medical procedures/ recoveries and the worst flares that accompany those as my system goes into shock ( I get injections and ablations often for other health problems with messed up cervical and lumbar disks). Also, the medical marijuana has helped my GAD (Anxiety Disorder), TMJ/TMD, IBS/IBD and sleep disorder. It also helps with my peripheral neuropathy and chronic migraines ( I only get about 1 or 2 migraines a month now down from 1-2 per week) and more! Marijuana has been a true god-send and I am so glad it's at least medically legal in my area. If you decide to go the mmj route, it is best to be honest with your doctors. I am transparent with mine, and glad I am. Some medications may not play nicely with mmj, so it is best to be honest. If your conventional doctor ( doctors) make you feel the least bit uncomfortable about choosing medical marijuana, time to find another doctor! If you work outside the home, it can be a bit tricky, which is the only reason I still take some gabapentin. If I knew I was not going to work ever again, I'd get rid of that medication entirely. I bet the mmj would actually work even better without it! It's a huge shame that marijuana patients are sometimes discriminated against. I interviewed for a job last Fall, but when I found out they tested for cannabis as an elimination tool for " pot heads" I opted out and did not call back. Employers really need to stop testing for marijuana since more and more people here in the U.S. are becoming mmj patients. Medical marijuana has really saved those of us that were prescribed a bunch of nasty painkillers and antidepressants and how they made our Fibro and other health issues worse!
My symptoms are pretty constant too. And like all of us, I’ve learned to live with the pain. Although I think it’s worsening as I get older or I’m just not as resilient as I used to be. I had Fibro symptoms for about 15 years and seen tons of doctors, even a genetic specialist, and have had a myriad of tests, but no one could tell me conclusively what I had. On bad days I thought I was dying (seriously). On other days, when I could barely carry my own weight I thought I’d end up in a wheel chair. Most doctors thought I had some type of autoimmune disease.
I was finally diagnosed w FM about a months ago. By now I pretty much have every Fibro symptom known. Really! It’s sad that it took so long for this diagnosis bc I may have been able to manage it better w intermittent rest. Instead, I thought I could over come the fatigue by pushing myself further. (You know, with the believe that exercise conquers all). Little did I know I was worsening my condition over time. Also explains why I often became over exhausted to the point of tears, like a kid needing a nap. And I didn’t like that helpless feeling of not being able to keep up so I just kept pushing through the fatigue and getting worse.
I’ve also learned communication is important. In the beginning I kept a lot to myself so no one knew how I was feeling. I didn’t want to appear weak. Of course later it became hard to hide.
We all take pride in fulfilling our responsibilities and not being able to is tough. It’s also demoralizing. But now I find support in my family who reminds me to take a break. And I’m ok with that. Sometimes I can do more in a day when I do take breaks and lie down for 30 or 60 mins, then when I don’t.
Impending storms keep me up all night and effect my motor skills. And grains definitely trigger brain fog. High alkaline diet has definitely helped me and to an extent the paleo autoimmune diet.
For inflammation, Intenzyme Forte (Biotics) has been a life saver. I am still an active person, but I am learning and accepting my limitations.
Yikes, I’ve written too much! And have probably addressed points from other postings too.
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