Symptoms change daily?

[whitea]

Hey everyone,

Question, I know everyone usually has a set of symptoms for awhile and then sometimes it changes to something else that hurts but do any of you experience symptoms that change drastically from day to day?

Yesterday I was just stiff all over, the day before that I was fine except for a headache. Today I wake up to the left side of my chest being very tender (more to the side of my ribcage), extremely anxious upon awakening for no apparent reason, extremely stiff and achy everywhere, very tired, etc. Oh and also before I went to sleep last night I was dozing off and then my body jerked me awake, which scares the c*** out of me. Do any of you get that? Out of all of these symptoms (oh and my legs are killing me but I did a lot of stairs yesterday) the chest is the most troublesome but I am only 23 and have had the heart tests when this happened for the first time last year but it is still unsettling.

I don't know, I had a good couple of weeks up until the last couple of days which is extremely rare, I guess I am just not ready to go back into the depths of fibro...

Sorry for the rant, reading posts here does help calm my nerves and gives me things to try to help cope with this. So thank-you everyone!

 

[terbaer]

YES! They definitely change daily. I never know what I'm going to wake up to, or whether I'm going to be able to sleep. A new one for me is beyond just fatigue. We all get severe fatigue, right? But when I usually have it, I'm awake most of the time, I just can't get out of bed or do anything. Well, the new one for me is severe fatigue with a bad headache/migraine and I was literally asleep and in bed from Monday (this week) until this morning! I didn't get out of bed to even eat! My 13 year old daughter would wake me up to take her to school. It took a lot, but I did it. Then I'd come home and right back to bed. I had no appetite and realized I hadn't even brushed my teeth or taken meds until Wednesday morning....Ugh!

So this morning rolls around and my daughter wakes me up to take her to school. When I got home, I felt like having a cup of coffee so I stayed up. I just happened to have a massage today at noon, so I jumped in the shower and headed out around 11:15 a.m. After my massage, I felt great! I did a little shopping, then cleaned the kitchen (sooo needed it!). I'm sore now, but I got something accomplished...Woo hoo!

I don't know if anyone else has these 3-4 day sleep fests, but it's new for me! I'm usually struggling to get more than 3 hours sleep of very broken sleep. I calculated on my fitbit.....I slept 31 straight hours this week! WTH? Hahaha! I don't know if I answered your question, but now I'm curious if anyone else has done what I just did?.....Hmmmm.....

 

[whitea]

Yes you did answer my question, thanks! Today I feel pretty good, knees hurt (which never happens) and my chest a little but other than that I have been up and accomplishing things today!

I never know what I will wake up too or even what the day holds, it changes from hour to hour almost on some days.

And to answer your question, YES! I had a week about a month ago where I experienced the extreme fatigue you mentioned. It came out of the blue and it was one of the really bad weeks. I had the headache as well so I know exactly what you mean! (but I have chronic headaches so it really just added to the fatigue) My boyfriend had to do everything around the house. I didn't eat much and the only time I got out of bed was to use the washroom. Then once the fatigue lifted I too ended up cleaning the kitchen and bathroom (guys just don't do a great job, if they do it at all!) and felt bad after but I recovered by the next day.

So ya, I didn't quite sleep 31 hrs straight because I fought the sandman off pretty hard but I probably would have if I let myself. Not much you can do about it unfortunately I don't think. Just ride the wave like we did. Sorry I am not much help but I have been through the same type of thing recently for the first time as well.

Just part of the wonderful stuff we have to experience!

 

[cmetryme]

good morning. you said " before I went to sleep last night I was dozing off and then my body jerked me awake, which scares the c*** out of me. Do any of you get that?"

Yes i have that. that is muscle spasms. they are also continuing as you sleep through the night. mine will take my arm right off the chair and legs right off the floor. i have no control. your stiff because of this. i went to neurologist about this and he gave me muscle relaxers.

Just letting you folks know what i learned about it. i hope this helps you.

 

[Loftpat]

It's the unpredictability of fibro that wears me down. That and trying to not overdo on the random day that you feel decent.

 

[whitea]

Thanks everyone,

cmetryme, thanks for the explanation, it totally makes sense, I sleep all night but I wake up like I have done a fitness class or something, stiff and sore and tired. I figured my muscles were tensing during the night but didn't think that muscle spasms were occurring. I couldn't imagine having it as bad as you do, it would completely freak me out.

Loftpat, I sooooo agree. And HA, when I have a decent day I do take advantage of it because that is my nature and no matter what I usually feel like dirt the day after a good day whether I take it easy or not so why not go full tilt? So some days I do it to myself but I am prepared for those. The regular days, I hate waking up not knowing how I will feel like you said. I am usually anxious right at waking up because I don't know what the day will bring. Not a good way to start the day!

 

[Ruralchick]

My husband nearly always jerks when he drifts off to sleep, scares the heck outta me! He said he dreams he is falling,(he does not have any FM or other things). I take a sleeping pill that takes hours to work and he is completely out in 30 seconds or less!

It is either my age or back/spine problems that I have learned not to go "full out" on a good day as I will pay, pay, pay. Pain is a great teacher.

As to roving pain, oh yes! I never know what body part will rise up against me at any given time. I certainly agree with Loftpat, the unpredictability of FM that is so very hard. All the last minute cancellations I've had to make I'm sure have some believing I've become quite a flake.

 

[cmetryme]

I totally understand the waking up thing! after some time and the lose of my best friend, i realized that everyday is a new adventure for me. each day i add something new to it. weather it be with people,my wife, doctors and even the pain. i make it so no two days are alike. i cant be anxious right at waking up because of my pain levels(8/9). i do dread some days that i wake up. no lie. my wife and i have an agreement that i must get up and walk,talk and breath correctly before she will go to work. if its a work at home day.. she checks my breathing and lets me sleep. now if i sleep too long she wakes me to be sure i can do those other things. before either of us go to bed/my chair we say good bye and good night because we dont now what tomorrow brings. i could not imagine not saying good bye to my wife before i go. we have come to terms with the it can kill you any dose drugs. if there were something else that works we would do it and stop that med (increased dose yesterday). i woke up one morning before i was on all the drugs and couldnt walk. it lasted for around 2 months. doctors think it was part of the muscle spasms and the Lupus. that day was a real new adventure!

im sorry to vent here about this,, i just think you folks are so caring and i pray that none of you have to go through this. if i could take your pain away by adding it to mine i would. wake up everyday and make it a new adventure! take what works for quality of life. even if it is a bad high pain day. you still got to see your kids and hubby/wife one more time. thats the gift god gives us each day. the rest is up to YOU.

 

[terbaer]

I am still in awe that I slept basically 3 days! I have such horrible insomnia. I had only slept about an hour the night before and a couple hours here and there the week before, but that's normal for me And, ya, I have daily headaches and migraines, but usually my meds take them away or mostly away. Not those 3 days. That's the other weird thing....I can't usually sleep with my headaches. I was very active the day before, but not excessively so. I chased our horse from our place, to my parents, to down the hill, then up another hill to a pasture that she stays in sometimes. Sounds like a lot, and maybe it was too much for me. Sure wasn't planned! My fitbit said I walked about 7,000 steps (more than twice what I can usually manage).

I also get spasms and muscle jerks. And Ruralchick, my husband does the same thing! Big jerks when he's falling asleep! I can't help but laugh and then he pokes me, cuz it woke him up too! Hahaha! I don't know if I've asked him what he's dreaming about. He's almost smacked me in the head with his arm....Sorry, it's just funny.....

Whitea, if there is any way possible, you need to work on not feeling anxious about what the day will bring. You are setting your day up with a negative. I know you know this, but just tell yourself the night before that you are going to wake up ready to take on the day and not analyze it before you get out of bed. Practice makes progress....

 

[sukie31]

Yes, I too have sleep-fests! lol! Thankfully most of them are when my husband is off work to help with all the chores and kids. But somedays,,,I know how you struggle to get the kids to school! I always feel like the "other" moms are giving me the eyeball b/c Im running late too! If only they knew the pain and struggle it was to even get them there - let alone on time! As for my long sleep days.. usually 2 are the most done, but a 24 hour one is the norm almost weekly in the Winter! Fatigue is hard enough without the lack of Sun too! I only had these boughts of long sleep days for a little over a year now. I just thought it was from 2 kids and a small farm to take care of, but now that you say you do it too.... maybe it's just ONE more lovely side effect of this dumb disease! Only thing I can say that I try to do to avoid these is..... try to stick to regular sleep pattern every night, eat fresh foods - limit processed, sugars and caffeine, and try to put your feet up and relax at least 30min a day (which is hard to do w/o falling asleep!), of course try to exercise too IF you can find the energy somewhere ! Good luck! If you find anything that works... let me know.

 

[cmetryme]

whitea, you said: I couldn't imagine having it as bad as you do, it would completely freak me out.

that's why i dont have a blog or a journal on here. my life would freak you guys totally out!
if you only knew what i have to do each day just to keep going.
helping you folks understand your pain helps me. i may know im alone with the metal reaction, but i know you folks are real and experience some of what i do each day.

It does upset me when i hear folks talk about how hard it is and how they would take their life over it.
if i can go though each day and make it, so can you.

Hang in there everyone. big hugs and hearty hand shakes to the guys!

 

[terbaer]

Sukie31, It's amazing the number of illness tentacles this illness has. I have now done the sleep-fest twice! I didn't fall asleep Saturday night until 9:00 a.m. Sunday morning......Acid reflux (which is new and the 3rd time I've had it now). I slept all day yesterday and didn't wake up until this morning to take my daughter to school.

I keep waiting for the school to tell me I'm unfit. Seems like we're always running to get her to school on time, or I hate to say it, if she says she doesn't feel well, I find myself not pushing really hard sometimes. I know it's so I can go back to bed. I can't shake the fatigue. It's been almost non-stop for 6 months or more and with this new sleep-fest, I'm nervous it'll get harder to get her to school....