pamyla

Carolyn - I was curious what kind of exercises you did for your legs? I could use some of those

Thanks,

Pam

Hi, I ran into some vascular problems last year and went on the search for a vascular doctor. The only type I could find (that was covered by insurance at least) was a vascular surgeon. I tried to make an appointment and they told me I really needed to see my primary doctor first. So, I went to the primary doctor and was told that vascular surgeons usually do *surgery* and that if you're not going to be having surgery they're not the best ones to see. So, I was referred first to a dermatologist. (Who knew, they do things with veins?) And, then I was referred to a rheumatologist. The rheumatologist has been helpful to me in figuring out the underlying causes of the vascular issues. Are there other types of vascular doctors out there? Anyways, just thought I'd share my experience.

Hi, I took a cruise last year and did fine I do get sea sick and had gotten sick on a previous one so I came prepared - I took ginger root on a daily basis and I never felt sick. You can also buy seabands and - I'm forgetting the name - something similar to dramamine.

There was a lot of walking on the ship, so just keep that in mind, as some of the ships are quite large. I think it helped me to have a room that was near the center of the ship, and close to the elevator. Some other things I did - I requested a shower chair and this helped after sometimes long days, also I brought my own container for water so I made sure to stay hydrated. You might also want to look into tours that the ship offers, I went on a few that didn't have much walking.

Overall, on the cruise I felt pretty good and I think it was because I ate so much (salty) food that it was equivalent to a saline IV for me I'm usually pretty intolerant with exercise and I survived 6 ports!

Where are you thinking of cruising?

hth,

Pam

Pretty interesting article. I am especially interested as I'm going to school for Human Factors, and currently muddling through an aviation class

Looking through the web site I did come across contact information for some of the researchers. Looks like Patricia Cowell is the head person. It might be worth sending her an email...

http://humanfactors.arc.nasa.gov/ihh/psych...plications.html

I also take Thermotabs - just 1 every morning. The rest of the day I make do with a small amount of gatorade in my water.

If your pharmacy won't order the salt tablets, I get them from

http://www.immunesupport.com/

They run specials frequently where they offer free shipping.

hth,

Pam

Hi Amy, thanks for the information. I have heard that the main issue with plaquenil is that is only works for about half of people who take it. I guess I won't know if I'm a responder until I try it. Enbrel actually sounds like a great choice, but I have to try something first in order to have insurance approve it. That's good to know that others have been able to take it while pregnant.

Thanks again

Melissa, thanks for the support I really appreciate it! And yes, having an open-minded doctor helps alot.

Leah, thanks for sharing your experience with me. Plaquenil is the one I'm leaning towards, so it's great to hear that it's helped you You sound a lot like me with the exercise. I think I can manage 2-3 min on the bike, although about 15 min with just walking. The doctor did mention the pregnancy stuff to me. There's that other drug (Arava?) which she tells me works well but can cause bad birth defects. For now I'm gonna stay away from it.

Got one more question for you - was their an adjustment period at first when you took it? Any bad side effects? Hope your symptoms improve soon.

Thanks again!

Pam

Hi everyone,

My doctor wants to put me on one of the DMARD's (seems I have some autoimmune stuff going on). I am supposed to research and come to my appointment ready to give input on which drug I would prefer to try. So, I'm wondering if any of you have ever been on one of these drugs? Any experiences on what worked/didn't work for you? How did it affect pots?

Choices include Plaquenil, methotrexate, and possibly Enbrel or Humira (although I think the last 2 are only covered by insurance after one of the first 2 has failed).

Thanks!

Pam

Hi, I also find I have problems laying down. It's almost as bad as standing for me.... I tend to feel my best reclining with feet up.

I think, at least for me, that my blood has too much room to flow and therefore I need to have my legs curled under me, or head propped, or something to help with that.

How do you feel when you're sitting?

Pam

I second the 'clean a little each day' philosophy. Also, if I'm feeling bad at all, I skip the cleaning because that's when any exertion at all can put me in a potshole.

For tips, I have found this wonderful shower mildew cleaner that requires no scrubbing. Simply spray and rinse, and you can actually tell a difference. It came from Home Depot, and if anyone wants the name let me know.

I'm not a big fan of bending so if I do clean the floor I will physically sit on the floor with a dustbuster. Much easier than sweeping....

Hey Melissa, Congratulations on starting grad school I'm going into my 2nd year and hopefully last year, working on an MA, and like Nina sometimes it's great and sometimes I wish I was done

After hearing you guys talk about the disability offices, I guess I'm somewhat lucky because we have parking out front. However, I still don't understand why all parking passes can be bought on-line except for handicapped permits. They make you stand in line at the parking office Seems they could make that process a little easier.....

If you haven't already, I highly recommend getting a handicapped permit for campus. It has made my life so much easier. (and hopefully your school won't make you stand in line!)

One thing I have found in grad school is that my teacher's are much more understanding than I think they were in undergraduate. I feel like I get treated much more like an adult, and therefore teachers are more willing to extend deadlines and such. Overall, it's been a good experience going back to school. Last year at this time I was worried I wouldn't be able to handle the workload, but I've paced myself and have done fine.

Anyways, good luck with everything Let us know how it goes!

Pam

I'm similar to you, I feel just awful in the winter and can actually tolerate heat pretty well. I am always cold, and feel comfortable around 80 degrees My doctor told me that some with pots can actually constrict too much. So, I guess a little heat makes us relax a bit? I'm not a fainter, so I guess that constricting does help me compensate....

ps - my hands are freezing as I type this Too much a/c!

Hi all

I got myself an ab compression garment yesterday I was about to order one off the internet at the sites that were recommended but, call me cheap, I was floored by the almost $10 shipping charge I started to browse a bit more and I found that Kohl's sells compression garments and that they're on sale this week. I ran over and tried some things on, and they seem to have a good variety of compression garments to choose from. The one I got was on sale for $20 - not bad

In case anyone is interested, here's the one I chose -

http://www.kohls.com/products/product_page...=pfx&src=k30908

I must say, this thing is tight!! It takes a little getting used to and I now fully understand Tearose's stuffed sausage reference I wore it last night while standing up to make dinner and it did seem to make me a little less lightheaded. However, I can definitely relate to what Emily is talking about with the indigestion. I had to take it off before eating. I felt too squeezed in. Personally, I think this will work well for short periods of time when I know I need to be standing (i.e. shopping trips) But otherwise, I'm not sure. This particular one has these side wires (similar to an underwire in a bra) and they kind of dig in when I'm sitting. I tried on another compression garment without those wires though, and it had much less compression. Hopefully after wearing it more, I'll become more used to it!

Just wanted to share my experience in case anyone else is considering.

Pam

I get my multi-vitamins from Trader Joe's. I like them because they have CoQ10 in them and you can get a 3 month supply for $15. They have a couple different kinds, I think the one I buy is called Super Crusade. I believe they do carry one without iron.

good luck,

Pam

I was born in Washington, DC and currently live in the suburbs on the Virginia side. I've also moved around a bit though and have lived in Virginia Beach, Raleigh, North Carolina and a couple of cities in Florida.

Fun thread

Thanks so much Tea and Sophia for posting pictures That helped alot and they don't look as bad as I expected

Got another question, do you find that it's worth the extra hassle to get the abdominal compression that compresses your thighs as well? I guess I'm thinking about something that actually would let me wear shorts!

Also, think I'd be okay ordering on-line or should I try and track down a store so I can try these things on?

And finally, Sophia, can you see those back support items through your clothes?

Here are the 2 that looked fairly easy to get on and off:

http://www.americanshapewear.com/prodinfo....aitem=2&mitem=9

http://www.americanshapewear.com/prodinfo....aitem=8&mitem=9

Thanks again! As usual, you guys are awesome

Pam

Thanks Tearose for all the great information I had no idea you were such an expert Just so I understand, most of the garments you have aren't necessarily "compression hose", but they squeeze you in?

Also, just wondering are there places to get these items on-line? I'd love to be able to see some pictures.

Thanks again,

Pam

Are you swelling EM or just trying to improve circulation of blood in your hands and arms?  Have you ever considered compressing your splanchnic / abdomen?

tearose

<{POST_SNAPBACK}>

I've been told that compressing my abdomen might help. Has anyone tried it? Did it help you? And where do you get compression for the abdomen?

Thanks!

Pam

Hi Dayna, it is tough to answer that question. I was just asked yesterday and didn't want to go into too much detail so my shortened explanation is that I have a circulation problem that affects my heart and I can't stand for long periods of time without fainting. At least this way I'm conveying that it's something to be taken seriously.... and people seem to understand my limitations better when I mention it's heart related. For example, then it makes sense why I'm taking the elevator versus the stairs.

Pam

Hi everyone, I posted a month or so ago about some bruising I had on my legs. I was at the doctor this morning and finally have a name for what it is - Livedo Reticularis. I'm curious if anyone else has this? Or knows anything about it? The dermatologist I saw didn't seem to know a whole lot, but she says it's often caused by connective tissue disorders. So, maybe an EDS thing versus Pots, although I still don't have a definitive EDS diagnosis.

Thanks, Pam

Original post:

http://dinet.ipbhost.com/index.php?showtop...l=bruised+veins

I had bad nausea when I started zoloft for the first month or two, but I got through it by taking ginger root pills. They helped me immensely! Just thought I'd mention that, as maybe it'd also help you....

Although if you're vomiting, I'd definitely consider switching. My first try was with Paxil and let's just say it went right through me

Pam

Welcome to the forum I also experience tachycardia when lying down. Sitting with legs up seems to work best for me. I believe this has to do with the blood having too much room to move, therefore standing and lying down are both uncomfortable.

take care, Pam

Hey Nina, just wanted to say good luck with your papers. I know how tough that can be.... I'm currently stressing over a presentation I'm giving in a few hours - yikes. Hopefully your papers are done as we speak and you are feeling a whole lot less stressed. Hang in there! (I keep telling myself that once school is out of the way work will be a breeze )

Pam

Thanks for all the replies I think I'll watch it for a few days and see if it gets any worse.....if so maybe I will have it checked by a doctor just in case. What is the technical name for vein doctors? I'm not even sure I know what vasculitis is, so I'll definitely look into that. And spider veins - yikes - does this mean I really am getting old I swear by my vitamins so I imagine I must be okay in that area, unless I'm not properly absorbing them..... I also occasionally end up with weird bruises that I have no idea how I've gotten. This one is just unusually large and my bruises don't usually have a vein-like pattern.

Thanks again you guys!

Pam

Hi everyone. About a week ago I noticed I could see a spider like web on my inner thighs and a little below the knee as well. I'm guessing I'm seeing my veins? Anyways, in the last day or two it's turned into a bruise - and is really not pretty It's got me a little freaked out...... I haven't done anything differently. And I haven't done anything that would have bruised my legs like that.

Has anyone else ever experienced this? Is it pots related? What could be causing this? And should I be seeing a doctor?

Any advice would be great.

Thanks, Pam