ddschool

I am (was) a nurse, but haven't been able to work for the past 2 yrs. I am truly convinced something in hospitals is making us sick (cleaning supplies, patients not being honest about their history, etc). I have known too many of us getting tumors & other debilitating illnesses in our 30s.

I think 0.2mg is the max dosage

Sorry, I should have noted the bumps are only on my legs

Do any of you notice large, red, itchy bumps after you shave?

This topic has me intriqued b/c I've been getting these bumps, & when I itch them, they welt up quickly.

And I know that we don't have a bug problem in our house.

Plus, I am currently having the worst allergies I've ever had-Zyrtec, Allegra, etc are not helping! I want to claw my eyes out!

Thanks for any help.

Thanks ChristyD! That is much closer for me than Vanderbilt where I was thinking of going!

I have had to wear one for 24 hrs & for a month. Your doctor will probably want you to do your activities & meds as usual, & keep a log (they always forget to tell patients this). The log is to go along w/ anytime you push the button if you have a symptom or feel funny. If you are allergic to tape, ask for hypoallergenic electrode pads &/or skin prep wipes-this will help w/ skin irritation.

If I can help anymore, let me know.

ChristyD,

Where is this Dr Afrin located?

StephL,

I am totally in your shoes. I want more of an answer than just dysautonomia too. All of my labs come back normal, & it frustrates me so much b/c of feeling so bad all of the time, why is there not an answer. I've been tested for Lyme's, Lupus, Rheumatoid Arthritis, Sjorgens Syn., cancers, etc w/ no answers.

I had to get a pacemaker for my low hr, & so I could tolerate increased doses of Midodrine (higher doses would lower my hr even more).

Hang in there, and know we are in this boat together.

Take care,

Danielle

Sue,

You mentioned buying your kit. Is this a doc ordered test, or are you doing this yourself?

Thanks.

Last wk at Duke, the doc put these pieces of paper in my eyes to test my tear production to determine if I had Sjorgens (since my eyes always always feel like they have sandpaper in them)-paper & bld test both neg

I've just been to Duke, and as usual, all my labwork came back negative (Lupus, Sjorgens, RA, blood cx), despite me continuing to have fevers, chest pain, fatigue, headache, nausea, etc. it seems as though no one can ever find anything wrong me, however, w/ as bad as I always feel, something has to be up. I've always thought I had Lupus, but lab work says no.

Is it possible to have false negative lab work?

Yes, I go once a week, and I feel it helps. It is not something you can feel a difference after one visit, it takes time to build up. I feel it is the only thing keeping me going, and I can tell when I miss a session. I would definitely try it.

I wear Mediven silk knee high stockings, & they do come in open & closed toe styles. I have 20-30mmHg, & I wear my open toe stockings w/ Birkenstocks. The Mediven aren't as thick, so they aren't as hot. I got a prescription, went to med supply store, & they filed insurance for me b/c the stockings are $90 a pair. I bought another brand, & they weren't as "compressive" as the Mediven.

Hi Pam,

I totally understand & sympathethize. I am 35, & my illness has been progressing over the past 5 yrs.

I went to 4 yrs of nursing school, worked for almost 10, & now have had to give up my license b/c I can't work. It is so discouraging & frustrating, esp when I haven't even paid my school loan off yet.

Just know you're not alone, & I'm grateful to not be in this alone too-it helps to have this forum!

Take care,

Danielle

I felt better too, much fewer episodes than at home.

Another example is Michael J Fox-he had no Parkinsons symptoms when he went to the Himalayas.

Yea, I go to acupuncture once a week also. I feel like it's the only thing that gives me some energy to function. I missed 2 weeks of it recently, & I really noticed a difference. Keep going (if you can afford it) & I'm sure it will con't to show small improvements.

Yes, I do. Mornings I feel the best, then about 1pm, I start tapering off w/ energy, getting worse as evening goes on.

I understand also. I've been out of work 2 yrs now on LTD since I got my pacemaker. I am 35 y.o., and I do feel embarrassed, but on the other hand, it is less stress on your body not having to work or worry about working. I also felt like I wasn't much use to my patients & co-workers if I couldn't function properly. I get 60% of my pay, & it is an adjustment, but like others said, it is important to take care of yourself.

Yes, I have this too. My temp ranges from 99.4 to 100.5, w/ night sweats. I'm figuring it's the days autonomic b/c none of my docs can figure out what is wrong.

Thank you for this topic!

I've have to get stern w/ quite a few docs lately b/c they don't take me seriously, or just want to pawn me off on someone else. I'm a nurse, and I've had a low grade fever for over 6 months & no one will do anything about it. If I was a patient in the hosp, this would not be acceptable-they would treat it somehow, but b/c I'm on the " outside" they really don't care.

My advise is read as much as you can, go in the office w/ info, and ask if you can try things if they don't offer it-you are your patient advocate, and you have to stand up for yourself. Don't be afraid to get second & third opinions also. Unfortunately, I've come to the conclusion that they are going to get paid whether they help us or not, so I feel they are trying to do the bare minimum.

Be careful you aren't getting garments/stockings that are too tight.

I've heard both theories-compressing vessels in legs & thighs, and I tried both. I noticed better luck wearing knee high compression stockings, but I know everyone is different.

No problem! Hope you get it resolved today.

One thing I've learned is people don't understand what it is like to be sick, esp to have what we do. It is frustrating that we feel bad, but when med staff doesn't help us, it makes it worse. The worst part is, I am a nurse & I know too much for my own good

If that nurse is still giving you a problem, talk to the office mgr- you don't have to put up w/ being treated like that when you are trying to get to the bottom of your health problems.

My hr would be in the 30s while sleeping, 40-50s while awake. When I'd increase the dose of Midodrine for my bp, it would in turn kick in my vagal nerve lowering my hr even lower (I could tell b/c I'd feel very weak, so I'd check my pulse & it would be 42). Also, one time I was trying to take a nap one afternoon & I felt these strong, weird palpitations. I hit the button on my monitor, & found out my hr was 41.

Yea, Midodrine is tricky if you already have a low hr.

Yep, that too, that's why I ended up w/ the pacemaker also so the doc could push my dose of Midodrine-didn't work. I started getting bad headaches around 125/85.

The way my doc explained it to me is our bodies work opposite of normal people-in that instead of our nerves sending the signal to our muscles to contract & raise our our bp's, it actually relaxes the muscles resulting in the low bp. This is why they suggest us wearing the compression stockings to keep our muscles compressed & blood flowing upward.

I wore a 30 day monitor a couple years ago before I got my pacemaker. First, I'd call the monitor comp & ask if they have any patches for sensitive skin-I had to do that & they mailed me some.

Second, go to a home med supply store & ask for stuff called Skin Prep. It comes in a box of little individual premoistemed swabs-apply that to your skin, let dry, then apply your patches. It creates a barrier & you'll have let irritation.

Third, I had a monitor that would record if I pushed a button, or if it sensed that my hr was low. Once I had 3 events, I had to call in & send it in over the phone line like a fax. This is how I found out my hr was 37 at night, or would drop while I was emptying the dishwasher.

Finally, stand up for yourself! Because if you don't, no one else will!

I hope this helps!