BEE Posted October 11, 2007 Report Share Posted October 11, 2007 I hate to be a downer in fact I think I have done quite well for having pOTS now for a few years...I am typically the type of person to constantly push myself throughout symptoms no matter what..and do my best. In the last few months I have gone from functioning at a somewhat baseline deal to NO FUNCTION..concerning energy levels..I am exhausted by like 9:30 -10:00 a.m. and that is after only being up for like 2 hrs at most.I physically cannot keep myself upright to do anything lately without serious struggles...I am not depressed or anxious or anything like that..this has caused a downward spiral in my funcitoning.I think I posted before they are thinking mitochondrial but they aren't totally sure..medicare wont pay for bloodwork for it. and it is somewhere aound 2000.00noone is sure..All i know is there are no answers and I am struggling with this fatigue...talk about a downer...sorry girls and gents.I have researched left and right what could be causing such severe fatigue. I have been tested under the sun...EMG's and such were norm.Anyone have ideas?..I have also had thyroid checked about a million times..not that.Taking enzymes not working..its to the point that is is starting to really scare me.Thanks B Quote Link to comment Share on other sites More sharing options...
Jacquie802 Posted October 11, 2007 Report Share Posted October 11, 2007 Hi B,I wish I had some ideas, etc. to offer you, but unfortunately I don't have any at the moment. I have been wondering how you have been doing lately. Hmm, I just thought of one , have you had a sleep study?? My neuro wanted to do one but my cardio wasn't too sure if it would really help anything, and also to be honest, I can't deal with doing another test unless it's going to come up with some other ideas to treating the POTS. Lately my nausea has been horrible as well as severe nausea...I hope some other members have something to offer you. Please know that you are in my thoughts...Jacquie Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted October 11, 2007 Report Share Posted October 11, 2007 Bee.. girly you are so NOT a DOWNER!!! dealing with this stuff day in and day out can leave the most positive of people in a funk at times...I know that your fatigue has been bad for you... I wish i had something to say that could help you with that.. my thoughts go to maybe trying b12.. i dont actually know if this will be a huge help.. and i cant remember if you've treid this or not allready...another thought....i agree with jacquies suggestion of a sleep study.. it cant hurt to have one done if you havent had one done in a whuile...also another thought.. as it was pointed out to me recently.. you know i have nasty fatigue as well... but maybe the change in seasons is affecting you?? you know our bodys are so very senstive to changes in weather and seasons and what not..I dont want to sound like im down playing ur faigue at all with the season comment thing...i mean well sweetie!I hate that you blood test for mito is so freakin exspensive... I hope that you can find a way to get that test done so you can at the very least know for sure if there is mito going on or not.. then go from there.....it infurates me that you where told "I think you have mito disorder then no real folow up was done!!!Again wish i had more words of advice and suggestion to beat the fatigue.. if i find something that helps... ill be sure to let you know.. know that im here for you Bee!!!!love and hugsdizz Quote Link to comment Share on other sites More sharing options...
pat57 Posted October 11, 2007 Report Share Posted October 11, 2007 could you be dehydrated? Quote Link to comment Share on other sites More sharing options...
pastordari Posted October 11, 2007 Report Share Posted October 11, 2007 On please, you are not a downer!This illness is the downer Fatigue is so hard to deal with. I have been like you and trudge on through the symptoms until the last few months. My doctor told me that is the worst thing I can do. I have finally come to believe her. I am taking things a bit easier and paying more attention to my body and it's symptoms to slow down.Having said all that, I have found nothing to help with the fatigue other than rest. It seems things have to run their course and the fatigue lets up when it is ready rather than when I am ready for it to!Best of luck, I pray you feel better soon. It does get a bit depressing (downright depressing!) to feel so rotten so much of the time. Quote Link to comment Share on other sites More sharing options...
Dawg Tired Posted October 11, 2007 Report Share Posted October 11, 2007 I have reached the point where I know that fatigue like this just happens. It has been very very difficult to accept it, but I have to put myself in a mindset where I can "just go with it". If it means a ahile in bed then so be it. Sometimes I can read, sometimes I can just listen to music, sometimes I can't stand even having my eyes open or to hear any kind of noise. The more I push myself, the worse the fatigue will get. Then the only thing I can do is rest - and that rest will happen one way or another. No, you are not a downer.... this is what we live with day in and day out.Perhaps the changing of the season is having an effect on you too. But probably the best thing for you is to rest. Quote Link to comment Share on other sites More sharing options...
morgan617 Posted October 11, 2007 Report Share Posted October 11, 2007 I'm sorry sweet pea....There are so many causes for fatigue. It could be something as simple as low B12, or so many other things. I know you've been down for the count for awhile now. Hopefully they will come up with some answers.Fatigue has been one of my biggest killers for a very long time, so even though I can't give any advice, I can certainly empathize....and venting is not a no no here. If we didn't have outlets somewhere, we'd all explode, or implode, I think....morgan Quote Link to comment Share on other sites More sharing options...
Mrs. Burschman Posted October 11, 2007 Report Share Posted October 11, 2007 I don't have any answers, but please don't feel you are being a downer. That's what we're here for! I hope you figure something out.Amy Quote Link to comment Share on other sites More sharing options...
DSM3KIDZ Posted October 11, 2007 Report Share Posted October 11, 2007 Have you tried the B12 shots? Have you started any new medications? Also did you have a virus or anything before this all happened because I'm thinking maybe it set off CFS or something.I'm really hoping you can get some answers soon I know you want to get bad to feeling baseline.Hang in there sweetie were here for you, your an Upper to us not a downer I just wish you were feeling more up right now.dayna Quote Link to comment Share on other sites More sharing options...
BEE Posted October 11, 2007 Author Report Share Posted October 11, 2007 Thanks all went to have some routine bloodwork done today and another chest X-RAY...I have had alot checked my doctor suggested another sleep study but I personally know that ihave been sleeping fine...a little tooo fine..he he.I did get two cold viruses within like two weeks of each other last month so that just may be it...although it seems at the beggining of this summer I got a cold and my period at the same time and gradually this fatigue got owrse after that..and I think the last two colds set it off.How odd to get two different viruses one right after another though.I cannot for the life of me keep upright for very long at all...and I can it is nt like I am so much as tired but fatigued instantlywithin two hours of waking..Thank you all for understanding and suggestions...I tried the B-12 all it did was give me palps as I amnot low on it...I wish it wouldve helped. Also get IV fluids as needed...got some last week helped for about a day.TIRED OF BEING TIRED...how weird.Hugs to all..belinda Quote Link to comment Share on other sites More sharing options...
Maxine Posted October 12, 2007 Report Share Posted October 12, 2007 HUGS BEE--------------- I know you have been having a rough time. I can't believe that doctor dropped the ball like that on you,I hope you can find a way to get the blood work done.Nothing worse then feeling wiped out lke that. Makes your days really long when all you can do is lay there because your too fatigued to do anything.Take care Dear,Maxine :0) Quote Link to comment Share on other sites More sharing options...
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