I am new to this board, and diagnosis, so I have LOTS of questions. Too many for me to even think of right now. lol. My first question is, what is a "flare up"? Is it a worsening of symptoms, or new symptoms. I seem to have pain/aches everyday. Of course, some days are worse than others, but it is there everyday. Should I expect there to be days with no pain? Should I expect there to be days with new/different symptoms, or worse pain? I am taking Lyrica and occasionally Tylenol 3. Any suggestions/comments on that? I guess this is a starting point for me, and more questions will continue to flow as I slowly get answers.
I have aches and pains to a certain degree everyday but they can be made worse by what activities I do.
I try my best to "pace" myself throughout the week, otherwise my pain and fatigue increases, which is obviously self-induced as I've done too much, for example one day during the summer I decided to get the curtains down, wash, dry them in the sunshine, iron them and re-hang them that evening!! Tooooooooooo much in one day I found out! My arms and legs were so painful for days after I was good for nothing, if I'd done one pair a day and paced I might not have been in such pain!! Silly me!!
A flare, to me, is when my pain and fatigue worsens due to no fault of my own, like changes in weather, damp and cold weather make me worse, stress, a few consecutive bad nights, illness on top of fibro like a cold or the flu, things like that induce what I perceive to be a "flare"
What I do now is map out my weeks activities day by day so that what I need or want to do is spread out rather than going mad on one particular day. I've been doing this via a weekly planner for about 6 months now and have found that I have fewer "bad days" but I do have aches and fatigue all the time.
Everyone of us is different and what works for me might not for others, best thing to do is to read all the replies you get and pick bits out that you think will help you cope on a daily basis.
Hi Jennifer, Lucy has done a great job of describing me too. I am Fairly new at this as well having only been diagnosed just under two years But I have the same problems. Pacing yourself is the answer. Weather will definitely affect you and when it hits you will know it. I have yet to have a day that I don’t have some pain but most days are tolerable with my pain meds and less activity.
Lucy,
Thank you for the great advice. These were things that I kind of already knew, but had no real confirmation that my thoughts were accurate. I second guess myself sometimes, and wonder if I am imagining things, but this just reaffirms that I am on the right track.
Jennifer
1. keep a journal that lists meds., amount of pain (1-5), what you eat, what you do, etc. This will help you see the patterns.
2. keep a list of your meds.(date started, and the effectiveness of the drugs, and be aware of adverse reactions for each drug.
3. Have your questions and various symptoms written down for your doctor visits. It is a knee jerk reaction to say "I'm fine," when you clearly aren't.
4. Educate friends and family about this syndrome and what they should or should not expect from you. (this should also be true for your co-workers and boss/supervisor.
5. Have adequate pain relief...no one deserves to be in pain, or[ what I was told 20 years ago] "just live with the pain." This may include seeing a pain specialist or pain clinic.
6. You are your own advocate now...only you can describe what you are feeling physically and emotionally.
7. See if there are support groups in the area...you need the support of other people and they can be a great source for coping with FMS....and of course stay connected online. We understand.