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Newbie Here. What Triggers Your Flare-Ups?

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Posted 11/3/2014 2:56 PM (GMT 0)
Hi. I'm brand new to this board. This is my first post. I was diagnosed with fibromyalgia two years ago and didn't want to believe that it's a real thing. Fast forward: from August until last Friday I was doing great. First time pain free and thought fiber. was gone. Friday I had a flare up and it's making me depressed. I was taking a little valium to sleep (terrible insomnia for it). I was becoming dependent so I quit the valium last Tuesday and by Friday the flare up came. Do you think they are connected? What triggers YOUR flare ups. I have so much burning in face, arms and neck. I don't take anything for it. The no sleeping is the worst part. Thanks everyone it's nice to have someone to 'talk' to. Huddle.

I gave you a subject line so you will get more responses. Welcome!

Sherrine

Post Edited By Moderator (Sherrine) : 11/3/2014 9:39:32 AM (GMT-7)

Posted 11/3/2014 3:14 PM (GMT 0)
Yes, withdrawal can contribute to pain. Whatever "extra" thing is going on with our bodies (flu, new drug, throwing a party, etc.) will impact the condition.

Did a doctor prescribe the valium for sleep? Are you using it off-label or was it prescribed for something else? If it was working why did you stop? Does the prescribing doctor know you have stopped taking it?

Are you taking anything other than valium?

I am not trying to be mean, honestly. We see a lot of people who 'stop' drugs that are contributing to their well-being and then feel bad, going back to the starting line.

Bottom-line, you have written the truth--sleep is very important. There are better and more effective medications for sleep out there. You might want to talk to your doctor about your concerns.
Posted 11/3/2014 3:28 PM (GMT 0)
Thank you! This helps a lot. My internist prescribes the valium. She also doesn't think it's good long term but knows that it was helping. I guess I realized that I was taking about 3-5 mg. every night to fall asleep and that has got to take its toll in my body. Can you suggest something for sleep? I can't take ambien. I've been taking Bed-Rest formula by Pure Encapsulations but it does nothing to help me. I wake up every hour or so. I have been in denial about this so haven't done as much research as many of you. Thank you.
Posted 11/3/2014 3:29 PM (GMT 0)
p.s. no other medicine. I take lots of supplements and eat really well but no prescription drugs.
Posted 11/3/2014 3:52 PM (GMT 0)
Well, a healthy body with healthy habits is great, and contributes to overall well-being. People are split on how far into the medical pharmacy shelves they want to go. Most people find a good balance with both medication and supplements. To complicate matters, things work differently with different people.

Other are split on supplements. Some find them helpful, while others believe they aren't enough to really impact the problem. I used to take a bunch, but decided recently to cut back drastically, based on new studies. I currently take a multi, calcium, fish oil, and magnesium.

As they write on Chronic Pain, "Sure we are dependent on medication. But if the drug is serving it's medical purpose, then it is not addiction." Addiction is usually outlined as those who take the medication for it's off-label effects. So, I am not sure I would have quit the med that was helping.

Bottom-line, for me, I want quality of life. I made my peace years ago (2004) with daily medication. I have to take meds for Ulcerative colitis. Sleep is also quite important to me, as I still work, and I take ambien which works most of the time for me. If I don't sleep, I do not function. So the benefit is worth the side effects for me. I also take a muscle relaxer at bedtime, which really helps.

One last thing-I saw your other post and wanted to let you know that a cause-effect relationship with emotional issues and fibro is likely get a lot of flames on this board. FYI.
Posted 11/3/2014 3:58 PM (GMT 0)
Thank you. You are very kind (and extremely knowledgeable). I'm happy to have 'met' you. I really am grateful for what you said about if the medicine works for what it is supposed to do then take it. I'll try a little tonight. May I ask what muscle relaxer you take? Wondering if something like that would be a good substitute. I take all of the supplements you mention plus D and lots of B's. B3 (flush free niacin) works wonders. Thanks for the heads up on the flames. I certainly don't mean to offend. It's a question I ask myself often. I'm not suggesting it is psycho-somatic, more that it is real but something triggered it. My hope is that if I can figure that out I can heal it. Really meant it with the best of intentions.

Thanks for sharing your sage advice.
Posted 11/3/2014 4:20 PM (GMT 0)
I took niacin for four years and saw diddly-squat change. I took probiotics, and nothing. I took extra D, even after I tested with a good range. I took extra Bs, and again, no discernible effect. We are truly very different people with vastly variable bodies and systems. With every medication I try, it really is a benefit/subtraction analysis, after about 6 weeks on the med. Does it help more than it hurts?

I take generic flexeril, which is the most common kind of muscle relaxer. May use it regularly for sleeping.

I started on this saga a decade ago, but was lucky (?!?) enough to have an older sister diagnosed in the early nineties. Then, we learned that our paternal side of the family all have symptoms. Then brother came clean about his symptoms.

As far as the flaming goes, I try to be kind to new people, who sometimes write things due to a lack of information (pardon me) about the condition. I do get snippy when a poster bangs a particular drum often enough, and I am not alone in this. "it all springs from your childhood." "My massage therapist/psychologist/personal trainer/acupuncture provider/etcetera says...." "If you only exercised more..." "Food cures everything." "If you just got rid of your stress, you'd feel fine."

Unless you are a fibro-trained physician, your belief is just a personal opinion constructed by your own beliefs and biases and those of others you respect. This is the same for all of us. One thing I try to remember is that we all come in from different places, beliefs, education, family-status, and health conditions. Offer what works for you, but health conditions are far more complex than we might like them to be.

So, yes, it is triggered by something. But that is still unknown, might be different triggers in different people. We don't know, and definitive statements are not user-friendly.
Posted 11/3/2014 4:57 PM (GMT 0)
Hi, Huddle, and welcome! I was given Valium years ago for anxiety attacks and had to get off it because I was becoming dependent on them, even though I was taking them as prescribed, and they were changing my personality. I don't regret not taking them either.

I have myself on a sleep schedule and that helps me a lot. I go to bed and get up at the same time nearly every day. My body is accustomed to it now and I just get sleepy when it's around bedtime. There's info about sleep schedules on line.

Some people have good success with melatonin supplements. You can get these over the counter. You might ask your doctor about these, too. They are used to help with sleep.

I personally don't want to take the medications they usually prescribe for fibro because of side effects and I don't use narcotics either. I use ibuprofen with food, Tylenol, magnesium malate, vitamin D3, and a muscle relaxer called Robaxin (methocarbomol). I don't use the Robaxin for sleep but I do use it for pain several times a day and it has made a significant difference in my pain. AND, even though I don't take it before bedtime, because it has helped me get my pain under control, I now sleep even better. I used to get up about five times a night because pain woke me up. Now I get up once a night to use the bathroom. The extra sleep has helped with pain also.

I also take CoQ10 and krill oil. These help me also.

I want to be clear, though. I do take other medications for things like diabetes that I have. What works for one doesn't necessarily work for another with fibro so it's more a trial and error type if thing. Some do get help with the typical fibro medications but I tried a more natural approach first and it helped me a lot. I added daily walking and stretching, since gentle exercise is so good for fibro, and that had helped too. If you sit or lay too long you will be stiff as a board and have more pain.

Be sure to read Fibro 101...the first thread on the forum. There are links to good information about fibro and you will learn a lot there. You just might see yourself there, too. There are links about magnesium malate and vitamin D3 and how these work in the body. These have helped me and also quite a few on this forum so that might be worth a try.

I'm looking forward to getting to know you better. Don't hesitate to ask questions because we are here to help you. Hope to hear more from you soon.

Sherrine
Posted 11/3/2014 5:21 PM (GMT 0)
Thanks so much Sherrine,

I appreciate you sharing your story. I really do. Yes, my personality was changing and I think I was becoming depressed and foggy. I will try and soldier on. I am on a strict sleep schedule, have tried melotonin and take magnesium, D, Bs, kill oil and C. I don't take CoQ10. Everyone is different and exercise does help - when we can do it right! Thanks again. I love your quote.
Posted 11/3/2014 6:44 PM (GMT 0)
Huddie,

Maybe the anxiety of the fear of going off of the valium gave you a flare. I find that stress caused a lot of mine in the past. But withdrawal could certainly be a factor. But you know that the flare is going to come to an end. I hope that you feel better soon.

I find walking helps me a lot. In fact if I don't, I feel worse. I hope you are living somewhere where you can walk. It helps mentally too.

Keep plugging along, it sounds like you are doing the right things to feel better. This is a mysterious type of disorder and you never know what tomorrow will be like. But often it is better than today.

Hang in there and do keep posting.

Hugs, Karen...
Posted 11/3/2014 7:12 PM (GMT 0)
Karen,

Thank you! I have a lot of anxiety over my son right now and had a bad week of worry over him last week so it was probably over that. You have talked me into walking. I'm going to walk our dog now. I do feel better when I walk and stretch. When I don't sleep it's hard to do anything. Thank you again and how are you feeling now?
Posted 11/4/2014 2:43 AM (GMT 0)
My flares are triggered by: travel, not getting enough rest, anything that changes my body chemistry in any way, such as flu shot, dentist appt, when my house was painted, etc.
Posted 11/4/2014 4:48 AM (GMT 0)
I have several other nasty pain causing diseases, but all of them can trigger a flare of the others. I've found stress or overdoing things can trigger flares too.

I went to a birthday party yesterday and the place was very cold and lit with fluorescent lighting. I'm photosensitive. Before an hour was up I was in terrible pain. I'm still hurting through my shoulders and neck.
Posted 11/4/2014 12:53 PM (GMT 0)
Well thank you all for responding yesterday. I learned so much and all of the advice quelled my anxiety. Last night I was able to sleep a bit better and just felt better in my head (still have pain). Because I have been in denial about having this I haven't done much research (and I'm a research fanatic). Hearing about the causes for flares/triggers really helped. I thought I was crazy because travel, cold and anything that changes body chemistry (like one nice poster said) it's the same for me. So how do you ladies (and men) travel and have fun and quell the anxiety before the trip. I need take my son to ski camp in CO in less than three weeks and I don't want to go. I need to get positive very quickly. Reading this book Spark. It's great and speaks about how much exercise helps every illness (and fibro. sufferers). Although on days of flareups I don't feel I can do anything. I will push through. Thanks and feel good.
Posted 11/4/2014 1:01 PM (GMT 0)
Huddie,

Feeling good. Got up at four but went back to bed from six to eight. So I feel refreshed.

It is raining here again and cold. Probably wont walk today. I have a big hill behind my house and I try to climb it half way each day. Sometimes I go to the top. It is quite the challenge. I am glad you are walking. I try to take my dog out daily. She pulls me up that hill...Ha!!!

I hope you have a good day today. Keep on keeping on!!!

Hugs, Karen...
Posted 11/4/2014 1:06 PM (GMT 0)
Good morning! Well good for you going back to sleep, and more importantly, waking up refreshed. Nice to know that can still happen :)

Dogs are so wonderful for making us go out. I had so many positive responses yesterday. Most echoing how walking/stretching helps (I used to be super fit and exercise almost everyday and then almost nothing for these past two years). So I took our dog and walked 20 minutes.

I notice it says depression on your page. Did you have that before the fibro and do you take anything for it? (I hope this isn't too personal a question). I have come to the realization that I may be suffering from that and I don't want to sink under this winter. I've never tried anything but it may be time. I don't know how to tell when it is time. I'm trying to just stay positive. Rainy days are good for stretching and reading. Have a good day.
Posted 11/5/2014 9:23 AM (GMT 0)
I just found out a few months ago that i have it so i am not real sure just yet what flares mine up. I know the weather does. Summer time the end of July -August is real bad time for me and so far the cold air has caused me to have a few real rough days
Posted 11/5/2014 1:39 PM (GMT 0)
Hi,

I hope you feel better. The weather thing is odd. I seem to flare up with cold weather especially. I wonder why this is. As long as we end up with more good days than bad right? I find the not being to plan part - challenging. Right now there is a parent coffee for my son's grade and I said I have a cold and can't make it, after rsvp'ing that I would be there. I don't like this part of it.
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