ramakentesh Posted February 27, 2012 Report Share Posted February 27, 2012 Today i woke up with no POTS and Im like WOW!! But ofcourse within ten minutes my back starts playing up (ank Spond). its as if my body has to attack itself some how, it just cant work out how yet. When the pain stops the POTs will be back LOL. Quote Link to comment Share on other sites More sharing options...
issie Posted February 27, 2012 Report Share Posted February 27, 2012 So sorry, wish we could find answers. Maybe your POTS is autoimmune related and it is attacking you in different ways at different times. I'm sure that autoimmune things are an issue with me too. I'm going to start looking into things for support in that area. I'll let you know what I figure out. Go get your comfort drink - a Coke - and call me in the morning! LOL I'll go get a Dr. Pepper. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 27, 2012 Author Report Share Posted February 27, 2012 I have no doubt that its autoimmune related. My POTS doc thinks it is as well. Im used to it. I can handle ank spond no problems. Quote Link to comment Share on other sites More sharing options...
jangle Posted February 27, 2012 Report Share Posted February 27, 2012 There's no rhyme or reason to this. As well this past week I've had periods of time as well with remission from POTS. I wish my body would tell me ahead of time when it's going to give it to me so I can plan activities to do. Unfortunately they don't last too long. But I didn't have remissions for 6 years so I'll take what I can get. Quote Link to comment Share on other sites More sharing options...
julieph85 Posted February 27, 2012 Report Share Posted February 27, 2012 Sorry to hear that Rama, you know you have sympathy from me! My RA has also been especially bad lately so maybe the pots will go onto remission for a whole. I'm like you in that I would take RA any day over this POts. Pain for me is a lot easier to take than the shortness of breath and tachy. Quote Link to comment Share on other sites More sharing options...
issie Posted February 28, 2012 Report Share Posted February 28, 2012 It's never ending. There must be a way to suppress the immune system from attacking us - and not lower it too low as to cause issues with virus and bacteria. I've decided that IVIG has too many risk factors. Â I've done steroid packs and the results didn't last long enough and the dangers are very high with those too. So, there must be another way. Okay, here comes some more research. . . . . . Issie Quote Link to comment Share on other sites More sharing options...
jangle Posted February 28, 2012 Report Share Posted February 28, 2012 I always wondered why autoimmune disorders wax and wane. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted February 28, 2012 Report Share Posted February 28, 2012 Sorry about your back, but no POTS is good! You think it's the Mestinon? Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 28, 2012 Author Report Share Posted February 28, 2012 No its just a random fluctuation that I tend to get. I intend on staying on mestonin if that is any clue though More details in two weeks.Check it out though - back pain, no pots, pots comes on, back pain diminished, back pain returns after lunch, pots diminished... It almost makes me wonder whether in my case POTS is actually the result of the same inflammation as in AS just targeted differently or something. i wish someone knew... Quote Link to comment Share on other sites More sharing options...
issie Posted February 28, 2012 Report Share Posted February 28, 2012 Could be????? So, many with autoimmune problems and pain. Wish there was an answer. Yeah, my dad has AS, and many symptoms of POTS - but, he's not getting treatment for either. Poor Daddy! He hurts so bad and is so miserable. I'm determined to not be in his place (but, have changes starting - it can be genetic) - I hope we find the answer. Rama, I hope you're pain isn't too severe and that your POTS stays away too.Issie Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 28, 2012 Author Report Share Posted February 28, 2012 I often think about taking TNF alpha blockers for AS and my Rheumy has been pushing me for years to take these but my major concern is if they have a negative effect on POTS. Its more likely they would improve POTS but in some AS patients they can trigger MS and if they made my POTS worse id be pretty annoyed as its more a problem for me than AS. Quote Link to comment Share on other sites More sharing options...
issie Posted February 28, 2012 Report Share Posted February 28, 2012 What about the LDN? You said you have some. It's really hard for us to get it here in the states - we'd have to get it out of the country. But, it's helped some with auto-immune issues - even those with MS. So might help. Quote Link to comment Share on other sites More sharing options...
julieph85 Posted February 28, 2012 Report Share Posted February 28, 2012 I often think about taking TNF alpha blockers for AS and my Rheumy has been pushing me for years to take these but my major concern is if they have a negative effect on POTS. Its more likely they would improve POTS but in some AS patients they can trigger MS and if they made my POTS worse id be pretty annoyed as its more a problem for me than AS.Me too. My rheumy has been pushing enbrel for years but my fear is lymphoma. One day I will have to take it though because I have pretty bad RA and already have joint damage in my hands. I have also thought maybe the chronic inflammation is causing my pots but the pots started for me when my RA was in complete remission (pregnancy). So that doesn't make sense to me and lead me to think it is a separate disorder. Also I have noticeable red, swollen, and stiff joints all over my body and some days I get a low grade fever because the inflammation is so bad in my body yet I always have a normal sed rate and crp. Quote Link to comment Share on other sites More sharing options...
the4richards Posted February 28, 2012 Report Share Posted February 28, 2012 I get severe midmonth abdomen pain. This lasts 6 days and has been going on EVERY month for 8 years. Docs know it's hormonal, but it's inflaming my bladder. I NEVER put two and two together before...I just though my POTS symptoms got better midmonth....but I do NOT have POTS symptoms when I have the abdominal pain. Now I have to wonder if the inflamation is somehow stopping the POTS symptoms? Weird. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 28, 2012 Author Report Share Posted February 28, 2012 Yeah true - my POTs always kicks in when the AS is under control or even dormant. So I guess its probably not a biproduct of inflammation in my case. mestonin seems to be working ok. Not a magic bullet though.i will also eventually have to go on humira simply because the back pain when it kicks in lasts a lot longer than it used to. Id get flares of only four days or so and then it would settle but in 2010 I had a three month constant flare that NSAIDS wouldnt touch LOL Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 28, 2012 Author Report Share Posted February 28, 2012 As for LDN - the results of CFS havent been overly impressive yet so im waiting to see how others go. Quote Link to comment Share on other sites More sharing options...
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