s-pot Posted February 26, 2012 Report Share Posted February 26, 2012 Just having a bit of a rant....i try not to be miserable about this all but its 2yrs on and im getting nowhere except wasting alot of time and money on drs visits in clinics!Im sure everyone here has been thru the same thing and im guessing that hitting this wall at this point is fairly normal. Im fed up of feeling like rubbish and cant get anyone to listen/help me manage the symptoms better.Ive vomited/wretched nearly everyday for the last two years...its my most severe symptom (dont know why its happening!) and now a hiatus hernia i had years ago that had recovered is acting up again. Awake at night and vomiting with severe acid reflux, nausea and pain. Feels like my system is crashing again...the fatigue is starting to overwhelm me, constant flitting joint pains are back and the terrible stabbing pain in my right kidney area that no one could tell me what it was a year ago and still cant now. Fobbed off with musculoskeletal (its defo not!). Postural HR fluctuations are getting more extreme again...68 up to 124 on standing.Ive been taking midodrine 2.5 bd which is all i can tolerate without terrible migraine headaches but it seems to be given me a big burst of energy for an hour or two and the crash then afterwards is awful...dont kno whether i should keep taking it at all...not really helping things now!Im shattered and losing the will to keep trying to find out why i feel so rubbish all the time when no one is listening! Sorry for being miserable guys but no one understands this condition here...its sooo impossible! And friends/relatives really have no idea how awful i feel all the time...i try not to complain too much cos i kno the dont understand and am afraid of the 'attention seeking' label!! Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 26, 2012 Report Share Posted February 26, 2012 Hopefully its just a trough in an otherwise upword progression. Most patients do improve over time. Perhaps there are other treatments that may help? I find saline to be helpful if I start to crash. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted February 27, 2012 Report Share Posted February 27, 2012 I'm so sorry you are having a harder time again. I had fluctuations in symptoms over a few years before I was on a steady path of improvement. I agree w rama--in my case too IV saline helps with flare ups. Hope you feel better soon. Quote Link to comment Share on other sites More sharing options...
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