dizzygirl Posted January 24, 2008 Report Share Posted January 24, 2008 hi folks.....for some time now ive been battling with debilitating fatigue...actually many months..i actually lost count....i recently got diagnosed with hypersomnia/narcolepsy.. and that explains my "excessive drowsiness" BUT my sleepy dr said that my hypersomnia/narcoplesy are completely seperate issues from my other "disorders" and that my fatigue has nothing to do with my "sleep disorders"I have the fatigue so bad.. and i know that ive posted this before.. but just chewing my food.. something soft like a bannana.. exhausts me...i mean i can feel it deep with in my muscles..in my face as well....fatigue has always always been an issue for me.. but man its gotten to a peak that even surprises me...my dysautonomia/chiari i dont know which at this point is the worse of 2 evils...are having a hay day on my body... for whatever reason my body doesnt like any medication ive tried to treat pots... my beta blockers have been upped to high doses.. and would you know that my HR is still climbing up to as high as about 150 resting.. im baffled by this b/c im on som seriously high doses of bb's...i guess im frustrated ...and all i want to do is cry... im overwhelmed with the never ending pain that is running amuck thru my body.. and pretty much everything...and that i still havent after many yrs of trying meds found a combo or a med that realy works to relieve my pots symptoms at least... it certainly isnt for a lack of trying.. but gee willkers! how irritating!i guess im wondering do any of you who've experiences long term debilitating fatgiue.. and fatigue.. and oure exhaustion arent even close to what i feel.. but do you ever find a reason for it? i mean or do ya just gotta deal with it??oh yea. forgot to mention.. im going to see a neuromuscular dr in a few wks.. for the eval of periodic paralysis.. so maybe that will help with thing? if im not paraylzing all over the place.. maybe my muscle would be flipping out on me! Im also going to see a new neurosurgeon about my chiari and all those issues.. all i know is i really need some relief from something! Quote Link to comment Share on other sites More sharing options...
Rachel Posted January 25, 2008 Report Share Posted January 25, 2008 I'm so sorry, Linda. I'd been wondering how you were doing. I wish things didn't keep getting worse for you. I wish I could be there to give you a real shoulder to cry on instead of just a virtual one. Know that we care about you and you can come here and cry whenever you need to.As for your question about ever finding a reason for the fatigue...I don't know. My fatigue isn't as bad as yours and I'm still searching for the real answer. I haven't yet exhausted every possibility, but I'm pretty close to it. I hope you can find some answers and better treatment. If not, I wish you the grace and peace necessary to endure.Many hugs,Rachel Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted January 25, 2008 Author Report Share Posted January 25, 2008 your a sweetheart rachel thank you!! (((((hugs)))))))) Quote Link to comment Share on other sites More sharing options...
BEE Posted January 25, 2008 Report Share Posted January 25, 2008 DIZZ~ YOu know I am thinking of you~ Can' really tell you to hang in there cause thats all we really do sometimes...Just know I am here if you need me~Love ya my potsy friend..Bumblina~ Quote Link to comment Share on other sites More sharing options...
pamyla Posted January 25, 2008 Report Share Posted January 25, 2008 i guess im wondering do any of you who've experiences long term debilitating fatgiue.. and fatigue.. and oure exhaustion arent even close to what i feel.. but do you ever find a reason for it? i mean or do ya just gotta deal with it??I'm so sorry to hear you have to deal with so much fatigue, pain, stress, etc. And fatigue just doesn't really cut it as a descriptive word for how tired you really feel, does it? More like being hit by a truck I have had the fatigue that you describe, I can remember days where it took me an hour to crawl 10 steps to the bathroom I've also had to deal with pain, both joint and muscular depending on the day. Sometimes, even with pain killers, nothing has helped and I just want to sit and cry. For me, I did find a reason, and it ended up being multiple tick borne illnesses. Specifically, babesiosis really caused me problems with the high heart rate - and I've seen some improvement with treatment. Just wanted to mention in case you haven't explored that route..... I hope you find some answers and feel better soon. Pam Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted January 25, 2008 Report Share Posted January 25, 2008 Hi!With the muscular fatigue you were describing, are your electrolytes etc. balanced? This can cause muscle fatigue. Also, is it worse with particular meds that may be decreasing needed vitamins and minerals. Like some can decrease iron or folic acid. I hope you can find some help with that dr! Good luck!I have a decent amount of fatigue with everything, but not normally anywhere that bad. The closest was probably when I started the primidone, and struggled with every little movement. Quote Link to comment Share on other sites More sharing options...
morgan617 Posted January 25, 2008 Report Share Posted January 25, 2008 Dizzy, please make sure this neuro understands periodic paralysis..take some literature with you, just in case!I have mind boggling fatigue, there isn't even a word for what I feel most days. I have tried lowering my beta blocker, but then I feel horrible from surges and tachycardia, which are just as fatiguing..not sure that's a word.I do not know what to tell you, I do know how you feel, just not what to do about it. I can wake up after 12 hours of sleep and pack all my clothes in the bags under my eyes and then take a nap....morgan Quote Link to comment Share on other sites More sharing options...
pat57 Posted January 26, 2008 Report Share Posted January 26, 2008 are you getting 8 hours of uninterrupted sleep? Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted January 26, 2008 Author Report Share Posted January 26, 2008 oh yes im giong to take material on periodic paralysis.. this stuff *****!!!!!!My body is in full swing.. ive had 4 paralysis (possibily more b/c i was going in and out of it for a good 3 hours) epi's today and they where quite.. bad i had neuro symptoms that really scared the crud out of me ...once i could move i conteplated calling 9-1-1.. but thought they arent going to be able to help me... and tell me to folow up with dr grubb.. that is what they all say.....love dr. grubb he is great but he is not a neurologist ya know...i called my pcp here not long ago and im giong to get labs done first thing in the morning.. then see his after the results are in...morgan.. boy can i relate to the sleep thing... I just slept 7 solids hours (it was my afternoon nap.. ) and ive been awake like 1 1/2 and im ready to go back to bed for the night.. these things really knock you down...ive had to keep a sleep journal for a while now.. and i sleep on the average of 16 hours a day... and that is a good day.. bad days i sleep alot more.. my lordpamyla i want to be thuroughly eval'd for lyme by someone who is up on it.. but im having a dilly of a time finding alyme literate dr....i would try about anything to relieve this stuff going on for sure... Quote Link to comment Share on other sites More sharing options...
Ernie Posted January 26, 2008 Report Share Posted January 26, 2008 Hi,Sorry you are always tired. I wish I could tell you a secret to get rid of it but I have not found it yet! Hope you find a solution soon. Quote Link to comment Share on other sites More sharing options...
Maxine Posted January 26, 2008 Report Share Posted January 26, 2008 Sorry Dizz,Nothing worse then that overwhelmed feeling----too much going on.I hope the neuro-muscular Doc has some answers, and it will be interesting to see what the other neurosurgeon thinks. ANSWERS---------Hmmmmmmmmmm, how many times have we all hoped for these???Big Hug to you.Maxine :0) Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted February 4, 2008 Author Report Share Posted February 4, 2008 maxine i know right??????!!!!!!!!(((((((((BIG OLE" LOUD SIGH))))))))))))))))) im doing about the same fatigue wise.. and it driving me mad!!!!!! im so pooped out its not even right....i hope the nueorsurgeon and the neuromuscular dr canbe of some help for me.. im about going bonkers.. if i had the enrgy to do that that is...this paralysis stuff is CRUD CITY!!!!!!!!! my muscles feel like OMG!.. my leg muscles re the worst right now...trying to keep moving even a little bit.. but lordy i need some help! Quote Link to comment Share on other sites More sharing options...
Roselover Posted February 4, 2008 Report Share Posted February 4, 2008 Dizzy,I'm there with ya girl... fatigue wise. I almost didn't answer cause I takes way more effort to type than to just click my little mouse.Too tired to chew - yes! My family say they see it in my face muscles... to tired to hold any expression.No.. no cause has been identified for me Just wanted you to know you're not alone - wish I knew what to even do!(((HUG)))~Roselover Quote Link to comment Share on other sites More sharing options...
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