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brethor9

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Posts posted by brethor9

  1. I just got the call today and I have to say I am completely devastated and at the end of my rope emotionally can anyone explain to me about this illness and what to expect and what may have caused it? I already have MCAD/POTS/EDS....my symptoms that made my doctor test were severe pain and weakness in my muscles especially my legs, night sweats, headaches, sweats, nervousness, high/low BP, severe tachycardia.... ugggh

    Bren

  2. Hey Katybug :) .....I am having a love hate relationship with it like I do the Florinef :( unfortunately no matter what dose I take it causes really bad cramping and headaches....I suspect it is because it gets the little buggers even more worked up! I have tried it off an on a couple times now with the same results unfortunately :( its a great drug for some people but I guess it just doesn't like me ;) have you tried it yet?

    Bren

  3. I tried it too and it actually made my mast cell worse.....I actually had worse flushing and alot of sweating on it but I wonder if it could have been more of a filler issue....I would like to give it a go again sometime since the chromolyn sodium and I are not getting along well either :( hope you have better luck with the Quercetin :)

    Bren

  4. (Katybug I am the same as you).....before being diagnosed I was in stellar shape at a very healthy size 3...since battling POTS over the last 4 years I have gained atleast 40 pounds thanks to the florinef and beta blockers.....it has definately not helped with my symptoms....I am small framed and the joints are not liking it :( ......to be honest some days I feel worse than ever...so I really don't feel that weight factors much into it imho...although I also have MCAD and EDS so makes my case a little different ;)

    Bren

  5. I would love to go back to work. I miss the independence...had to finally stop in 2011 after struggling with severe symptoms for 5 years. I have other co-morbid illness ie mast cell and EDS so I fear my days of working a normal job may be over :( I think if I just had POTS to deal with I could have found a way to manage .... since I had worked in the medical field for many years I decided to take transcription to try and work from home ...... I am not letting this illness win ;)

  6. Thanks guys :) yeah I am definately thinking it's the beta......maybe the build up over time has just become too much for my mast cells.

    Katybug! :) we are having the exact same issues with the leg swelling.....for me it is all in my thighs....it is driving me bonkers because it has actually become painful :( I just found out I have some complex pelvic cysts and they are wondering if that could be causing some of the swelling issues.... it definately wouldnt be causing the breathing and cough issues though. I have never had real asthma issues and find it odd that someone could suddenly get asthma over a couple of months. I think I will look into a calcium channel blocker maybe..... please keep me posted about your leg swelling....hope you get some answers!! hugs

    Bren

  7. Hey everyone :)

    Over the last several weeks to a month I have been experiencing serious pain and swelling in my legs.....all tests have ruled out blood clots but no one can figure out what is causing the edema. Also at the same time I have developed a chronic unproductive cough, shortness of breath, muscle aches, etc....this all seemed to start around the time I started taking my beta more often..... all my docs don't think its related but I really wonder?? anyone have similar side effects??

    Thanks

    Bren

  8. Hey everyone.....looking for any suggestions or ideas to help me out of this severe flare/relapse I am in;

    I am literally falling apart and have become bedridden in the last couple weeks....it all started with swelling in my thighs and then pelvic pain....I ended being rushed to ER because of breathing issues etc...they did CT scan and blood work....everything was normal the only thing in question that was low was arterial gases....I now have a chronic cough out of nowhere and experience this feeling of being drugged...I assume from low oxygen in my blood..I can barely walk my legs are so shaky..I really haven't felt this horribly sick in a long time and it has come on so sudden.....I lay awake at night scared to go to sleep because of the oxygen issues and when I do I am jolted awake by tachycardia..this isn't my normal ...what the heck is happening to me?? all of my doctors are at a loss ....... I am not taking nay new meds and haven't changed anything I can think of recently :(

    Bren

  9. I wonder about this too.....I take a very small dose of bisopropolol and find it makes me incredibly irritable almost ragelike irrational at times....I use it mostly on an as needed basis and find that the longer I am on it the more rages and sudden fatigue episodes I have.....I never thought it could be a blood sugar thing but it makes sense. My mom has diabetes and said the episodes I was describing sound like sugar issues

    Bren

  10. I get the "you look good" all the time and really I find it incredibly annoying :( so now when people say it I usually reply with "well it's amazing what steroids can cover up ;)" because that is the honest truth.....on the inside I feel like absolute crap every day.....this is an illness that mainly attacks the inside not the outside of our bodies. Only the people who know me extremely well or who suffer from illness themselves can tell how sick I am. My hubby once said to an unbelieving dr that "it's not her fault she is pretty.....she will be pretty even on her deathbed......so maybe you need to look past that and take her seriously" lol if only! ;)

    Bren

  11. I get this a lot and figured it was likely the MCAS and EDS.....but my autonomic specialist said chronic dehydration and salt loss could also be the cause...... haven't really figured it out yet.....I know its not life threatening but its sure is annoying! Now I have started getting numbness and pins and needles in my fingertips :(

    Bren

  12. I agree with the whole BP/HR thing.....I finally gave up checking them all the time because usually my symptoms weren't directly related and then it would just make me feel more anxious. I also have high adrenaline levels and can completely sympathize with the feeling wired all the time. Thankfully it has gotten better with treatment of my MCAS and florinef but I still go through bad flares of it :( hang in there Hanice!

    Bren

  13. Hi Andy :)

    Sorry to hear about your diagnosis :( ..........I am also part of the MCAS/POTS/EDS club..... (my MCAS triggers are similar to yours).... the diagnosis of EDS recently was the last piece in my puzzle. I just wanted to say try not to despair it does get easier to cope. Through different treatments I have managed to go from being bedridden to being upright and mobile most of the day. I am not able to go to work and am far from 100% functioning but when I look at how far I have come my outlook is more positive. You cannot let this illness get the best of you.......I have learned life goes on around you whether you have it or not; adaptation is key. In some ways I am grateful...this illness made me take stock of my life, get rid of all of the negativity and toxic things and enjoy what's really important ;) You can still reach your goals in life..... don't give up!

    Bren

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