HopeSprings Posted March 19, 2012 Report Share Posted March 19, 2012 When I say wellness, I mean you're feeling better to some degree - (just couldn't think of another word besides wellness!). I've heard a lot people talk about flares, crashes, relapses etc. - this means there are times when things are better. Just wanted to see what that actually means. Quote Link to comment Share on other sites More sharing options...
Katybug Posted March 19, 2012 Report Share Posted March 19, 2012 With the exception of the 2 wks I was on the prednisone recently, I have not experienced a full day of wellness in almost 5 years. Some are better than others but none are symptom free and I can be active for 3-5 hours these day but I crash in the afternoon or evening if I am active for that amount of time during the day. Quote Link to comment Share on other sites More sharing options...
puppylove Posted March 19, 2012 Report Share Posted March 19, 2012 For me sometimes days and sometimes hours. Just depends. Quote Link to comment Share on other sites More sharing options...
roxie Posted March 19, 2012 Report Share Posted March 19, 2012 I've wondered about this too.I also wonder what it means when people say they are "stable" ?For me, I've had a lot of ups and downs over the last 14 years but I've never been close to functioning. I feel like I've improved some over the past 2-3 months and am hoping thatll last Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 19, 2012 Report Share Posted March 19, 2012 Longest relatively (as in nearly normal functioning with some minor limitations) well Ive had was about 26 months. WIsh i could put my finger on what it was that got me there Quote Link to comment Share on other sites More sharing options...
L4UR3N Posted March 19, 2012 Report Share Posted March 19, 2012 With the exception of the 2 wks I was on the prednisone recently, I have not experienced a full day of wellness in almost 5 years. Some are better than others but none are symptom free and I can be active for 3-5 hours these day but I crash in the afternoon or evening if I am active for that amount of time during the day.That's very interesting that prednisone had this effect on you. Have you ever had a thorough endocrine or rheumatologic evaluation? Did they find anything? ...If I had that response to prednisone I would be tempted to stay on it hahaha Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted March 19, 2012 Author Report Share Posted March 19, 2012 Katy - I know what you mean. I haven't felt "well" or "normal" since this began, but there are times (measured in days) when things are more bearable. I find the people who have long stretches of significant improvement really interesting - I wonder what happens. Quote Link to comment Share on other sites More sharing options...
MandyBrook Posted March 19, 2012 Report Share Posted March 19, 2012 I've been dealing with symptoms off and on for three years. Always with long stretches in between a flare up. However, it wasn't until recently that I discovered POTS and all the symptoms described what I was going through. I am now going through the process to get diagnosed. And, eagerly waiting for this flare to pass Quote Link to comment Share on other sites More sharing options...
lgtaylor100 Posted March 19, 2012 Report Share Posted March 19, 2012 Good poll Naomi. I often wondered how others experienced this. For me it's hours at a time, usually in the late afternoon or early evening. It is a significant improvement and during periods of wellness I experience this everyday, although the mornings and early afternoons are still bad.Lynne Quote Link to comment Share on other sites More sharing options...
Sif Posted March 19, 2012 Report Share Posted March 19, 2012 I haven't had POTS for very long, only about 4-5 months but my periods of wellness have been going from lasting for about an hour or two at the beginning of my illness to about a day now. Mornings are by far the worst for me and I've yet to have a good one of those! My definition of wellness would be being able to sit up, be comfortable, not be in any pain and perhaps able go for a small walk. Quote Link to comment Share on other sites More sharing options...
Katybug Posted March 20, 2012 Report Share Posted March 20, 2012 Rissy - The endos don't want to see me because my basic endocrinology bloodwork comes back relatively normal. Have a rheumy appt on the 26th to see if she has any brilliant ideas that the immunologist hasn't zeroed in on. He re-tested my C4a (inflammatory immune marker) and found that it was still off the charts high as it was back in 2008. I was treated back then agressively for Lyme/Lyme co-infection. I don't test positive for any of the standard autoimmune testing (ANA, SSA, SSB C-reactive protein). We tried the prednisone to see if it would work and it did but after 2 wks I had a really bad rx to it (when I showed him the pics I took he yelled at me and said I should have been clearer about how swollen, red, in pain I was and he would have sent me to hospital..oh well,I lived without the ER. ) Anyway the original plan was to take it long term. We have been waiting to be sure all of the bad rx is over then we are going to retry at a much lower dose and see if I have the same abatement of symptoms without the bad rx. Naomi -It is interesting all the different manifestations that this syndrome takes on. I suspect through the coming years, we will find out that there are multiple different disease processes at work. Quote Link to comment Share on other sites More sharing options...
masumeh Posted March 20, 2012 Report Share Posted March 20, 2012 I have "periods of wellness", as you're calling it, in degrees landing all along the spectrum. So, the options don't really fit my reality, unless you add an "all of the above" option. I mean, I've had a couple years where I felt like the POTS was "gone". Outside of those years, I've had good spells that lasted hours, days, weeks, and months, at various periods of the --hmmm about 10 years-- that I've had POTS. Also, the second question in the poll, it's been relative. Sometimes I feel like old self--that only started many years into the disease with several successful treatment steps. But before that, there was so much up and down, good and bad days, times when it seemed I was improving and other times when that seemed to have been an illusion. Generally, it was up, with a LOT of pushing and patience with many setbacks. Quote Link to comment Share on other sites More sharing options...
corina Posted March 20, 2012 Report Share Posted March 20, 2012 before octreotide i had a kind of baseline that over the years got worse. i never felt "better" (as in less sick) just felt at my baseline or worse (which made me set a new baseline )at my baseline i could dress and be in my reclining chair, go out in my electric wheelchair once or twice a week, have visitors (with them making coffee etc.) about once every two weeks and try to manage my family (writing down everybody's appointments so that i knew when they were home/out), instructing the cleaning lady and decide on the groceries (not going out to buy them) etc.although i had symptoms all my life pots hit me quite hard after surgery in 2001. from that time i slowly got worse, i can't remember having "wellness" moments, happy moments yes, but not feeling better physically.since being on octreotide i have a new baseline with a few downs and i need to keepi in mind that i'm not cured so not able to do everything i would want. but overall i'm very happy! Quote Link to comment Share on other sites More sharing options...
E246 Posted March 20, 2012 Report Share Posted March 20, 2012 When I am sitting I can forget about it when absorbed in work or with friends unless I am in a flare. But the minute I move I remember.Haven't had a day free from symptoms since diagnosis 16 months ago. Seem to stay in this grey area - not well but not awful. Quote Link to comment Share on other sites More sharing options...
issie Posted March 20, 2012 Report Share Posted March 20, 2012 I only have hours of improvement. Something that is a daily constant. Maybe a few good days and on those good days I over do it and then have some really horrible days afterwards.I'd say at times, when I was younger in my teens through 20's I was much better, more normal functioning. Then in 30's - not as good. 40's saw more ups and 50's just hours of improvement, and then when I get a good day - I overdo - then crash. Quote Link to comment Share on other sites More sharing options...
issie Posted March 20, 2012 Report Share Posted March 20, 2012 Of course, I did have that one period of trying some new stuff about 2 months ago that I had about 10 days of REAL GOOD - what normal must feel like and then I crashed big time and haven't recovered from it yet. I don't know WHAT went wrong. Still trying to figure that one out. Slowly adding things back one at a time and watching carefully for symptoms/improvements. Got a few things figured out - but, not there yet.Issie Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted March 21, 2012 Author Report Share Posted March 21, 2012 That's frustrating Issie - hope you figure it out and can get back there. Quote Link to comment Share on other sites More sharing options...
issie Posted March 21, 2012 Report Share Posted March 21, 2012 I'm working on it Naomi. I'm hoping so too. It was the best 10 days I could remember in years - was so wonderful. I was on top of the world and felt great. Then bam, back to bad again. I think some of the things over stimulated my sympathetic system and put it into over drive. I figured out what I think it was, so slowly working it out. It will just take time.Issie Quote Link to comment Share on other sites More sharing options...
Katybug Posted March 22, 2012 Report Share Posted March 22, 2012 issie,I can relate. The prednisone had me almost back to full throttle Katie for 2 wks...then, bam...bad reaction and back to POTS I go as the prednisone wears off. I do have a silver lining though...I have been able to monitor my symptoms as they recurr a little better because I know what I am looking for and have been able to give the docs some better feedbackand we are looking at some more leads. For example, was so used to my breathing issues/chest pain/compression that I didn't realize had bad they were. Now that they went away and are coming back I now know how severe they actually were and we are trying to track down new information based on this. Quote Link to comment Share on other sites More sharing options...
issie Posted March 22, 2012 Report Share Posted March 22, 2012 Yeah, I have lots of pain issues too. I know there are autoimmune components in my case - but, also wondering about inflammation - working on both things right now - we'll see. It's one step forward and two steps back -----all the time. It's so frustrating.Issie Quote Link to comment Share on other sites More sharing options...
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