Excuse my ignorance, but what is a flare up? My condition is very cyclical. Symptoms start worsening around September/October, just as the weather is starting to warm up in the Southern Hemisphere. They worsen over the summer and are at their extreme worst between February-April. At this point my body decides it’s had enough and I have seizure like episodes for about a week. They are atypical seizures in that they look like seizures but my right side is responsive and my left side isn’t.… read more
A flare to me is when i get pain or another symptom that lasts longer than my usual aches. It could be in 1 area like my back or it could be all over. They can last a day or 2 or months.
Hi @A MyFibroTeam Member, I’m new here too. The seizures follow the same pattern every time though the intensity can vary. I feel them coming on, like an aura. I suddenly get photophobic and phonophobic, and usually my right leg will start to get aggressively twitchy. I also feel weird in the head, but cannot explain what that means. I know at this point I really need to lay down. I also get a migraine at the back of my head, left side. My body will start to jerk and my eyes will roll into the back of my head. I can talk at the start but then I reach a point where I can not communicate. I may be able to hear others talking to me though they sound distant, but I cannot respond to them. When it is done my right eye will roll back into place and I can squeeze hands with my right hand and push against hands with my right leg but my left side is totally unresponsive and I still cannot speak. It will take maybe five or so minutes, maybe longer for the left side to start becoming responsive. A seizure will last anywhere from a couple of minutes to 20 minutes. When it is finished I have a migraine on the left side of my head, a piercing pain behind my left eye, and am photophobic and phonophobic. I also just want to sleep forever in a very dark and quiet room. I have not had an EEG during a seizure but have had a short one and a 24 hour one done through my neurologist. He says no epilepsy but the 24 hour one showed lots of muscle jerking throughout the night. He has diagnosed PLMD which is supposed to be a nocturnal condition. My body jerks throughout the day as well, not what I’d call seizures, just muscle jerks. (I’ve thrown a spoon across the room with one of my jerks. Am glad it went backwards and not forwards or it would have hit one of the kids. 🥴) He can’t really explain that as PLMD is supposed to be only a nocturnal condition. So at the moment I have no real explanation for the seizures other than they seem to occur when my symptoms are at their worst and my body is quite exhausted from them.
I’m in your hemisphere and my pain has no cycle to it. As others have said everyone’s FM manifest differently. However your the only other I’ve come across that describes seizures that are so similar to mine. I was diagnosed 2017, but seizures started July 2019. Woke myself up with my whole torso shaking back forth. Scared me to death. Had random spasms in my legs, arms, head and shoulders more like an exaggerated twitch. But this went on for what felt like minutes. Hubby finally witnessed an episode in August & bundled me of to a neurologist. Everything normal 😳. After that result & finishing up working they only come on when I’m exhausted or stressed. My last flare was after flu injection. 48hrs after, pain increased but the fatigue was the main system. Couldn’t walk to the bathroom without assistance. Lasted a week then back to what is my new normal. Pain 6/10, fatigue 3/10. So I’d describe a flare as any period that is out of what “your normal” is. Some it’s like you’re hit with a virus others it’s a Mack truck.
I’d be interested to hear more about your neurologist feedback on your seizures and what they are like. If same every time, same places or completely random? As there isn’t much mention Or detail of this kind of symptom That I’ve found associated to FM.
Take care, hope you find some support from here. Been here only a few days and feel the benefits of sharing experiences. 🤗
Hello @A MyFibroTeam Member
I have constant year long pain for about the last two years. I think I had good periods interspersed with bad periods before a significant event occurred which I have not been able to drastically improve from.
I think a flare is a word that describes a bad period which can last a short or long time, and can be precipitated by a known activity, or an unknown not yet recognized trigger.
For example, I remember having periods in the past where my body hurt from head to toe and I felt like I was having the flu, but I didn't have many of the other normal flu symptoms. I was unable to go to work for 4-6 days in a row. I was the only person in my home who was ill and I thought I had some type of virus. But I recovered and went back to work. I think that is a flare.
I didn't recognize that it was happening frequently and I didn't stop plowing forward until my body forced me to stop by hitting a brick wall. My neurologist thinks it was because I had a type A personality and I was driven to succeed in my career that I ignored the warning signs.
Maybe someone else will chime in and describe a flare better than I just did.
Have a good evening.
I have a worse time in late fall & early spring. We have a lot of weather changes during that time. I have a hard time with heat & humidity. I like the,A/C, but love to be outdoors. Everyone is different with this condition. I feel bad you are having such bad times. Maybe talk with your Dr. about pain relief of some kind. Hugs & Prayers