Tommyhoney

Got my first letter of denial from ssdi, expected it, was warned,etc.....but it just irks me as I read their "reasoning." I can no longer perform my previous job, but should be able to perform another. If I can't sit, stand, think for 8 hours a day (previous job clerical type, sitting, typing) I can find some other line of work. This just adds to the stress. I know there are lots of you out there who have been through this, and I just needed to vent. Thankyou for affording me the opportunity. Peace Tommy

I would just like to thank the forum administrator, sponsors, and all of you who post often, and share the trials of this diag we've been given. I don't post here very often, but I do come here daily, and gain so much support from all of you. I don't know what I'd do without this site. Just yesterday I was having IV fluids done and the nurse asked why......I gave her the brief rundown of POTS, and she left with a bewildered look on her face....came back shortly to ask more questions, and I pulled this site up to show her. I'm sure she then went and perused it for herself for awhile, as next time she came to check me she had a look of understanding. I really wish we could run into more of those looks of understanding. Peace to you all. Tommy

Hi there, You could probably try some "bike shorts" from a sporting goods store to start.

its funny,val- seems we have alot in common......my lymph nodes mainly in armpits, are either swollen and painful, or feel like they're about to be, this has been going on since last Nov.....when I was younger had alot of node issues whenever infection coming on....but now it's all the time. Dry brushing seems to help if I'm not very symptomatic. Joint pain. Crazy joint pain, comes & goes.....lately won't go.

Hi All, Let me start by saying that ya'll are so helpful to me, I lurk here alot and gain support, though I never comment. I'm having a huge problem now, and need some "fresh" ideas. I was dx'd in Jan of this year with dysautonomia-pots, and have some as yet undiagnosed autoimmune thing going on as well, docs disagree about fibro, and cfs. At least with the pots diag and the good luck of having a wonderful compassionate doc who treats it in my very own town, I got a little relief, in that part being treated. Now it seems my luck has run out. After 7 months of seeing this doc, I had to move a few hundred miles away due to my husbands job. Tried finding someone in this area (haha) and was reassured by orig doc that it wouldnt be a problem for him to work with a pcp, and whatever other specialists I find here, and I could go there every few months. I've been gone for almost 2 months, and can't get a call back from his office. I need to be clear the Dr. is truly wonderful, but the people between he and I are less than efficient, less than professional. When I talk to them, they say they'll call back and never do. I've had some problems, have been very symptomatic with the stress of move, change of weather, etc...and luckily the PCP I found here is very understanding, but his office couldn't even get a call back with info on IV hydration, so they could do an order for me. I am really starting to stress on this, and am not sure what to do. New PCP has referred me to new Rheum. and Heart Dr's, will they be able to help me? Thanks for allowing me the vent. No matter how understanding my loved ones are, it's hard for them I know to GET it.

Thanks for all the input you guys....I went for IV fluids yesterday, and noticed it didnt happen this a.m., also my husband says my skin has a "glow" to it now...hmm, maybe I was more dehydrated than usual?

Hi, I've been diag'd with pots for 3 months now, take florinef, clonidine, clonipin, and thankfully feel a little better most of the time....with the exception of the blood pooling concern. My doc says this particular symptom is very apparent in my case, looking back I've dealt with it for quite some time. Getting to my point- Do any of you who experience this in an extreme way, ever find the skin on the top of your feet "scrunched" up to the point of resembling a burn scar? Typically happens in the mornings, or after napping in afternoon. Very strange looking, although there are no odd feelings or pain at that point. Any ideas?

I'm trying to find a PCP in the area we'll be moving to in July....asking if they know anything about pots etc....yesterday I had an assistant call me back and ask a) what type of insurance do you have, and are you on disability......now that does not answer my question concerning his knowledge of pots, now does it? What an aggravation.

Has anyone here seen Dr. Janice Gilden in Chicago? I'll be about the same distance from her, as Dr. Grubb, however, cant get in to see him until April 2009.....I'd appreciate any info on her I can get...very nervous about changing doctors. Thankyou Tommy

I was fortunate enough to live in a town where a wonderful Doc treats this, and now I will be moving out of state in mid-July. I can't imagine how I can see him once a month, from 700+ miles away. The people who treat this up there are still far away, and have outrageous wait times for new patients....Any advice will be greatly appreciated. Peace Tommy