potsgirl

Hello Lisa!

Welcome to the Forum, and I hope you find a lot of answers here, along with support and friendships. Between the forum community, you'll probably find at least a couple people who can related to what you're going through. Take the time to read the info on the home page, too. I'm looking forward to your posts.

Cheers,

Jana

I would just be honest and tell them about the level of pain you have, and ask for it in a direct manner. My PCP prescribes 5 mg doses for me for my chronic pain, and then I take 1/2 when I need one, which is probably 4 - 5 days a week. They know that pain is an attribute of a disease that doesn't 'show' on any tests. Just ask them for a trial run with Vicodin, and see what they say. You'll never know if you don't ask, and it could make your life much easier to manage. Go for it!

Cheers,

Jana

Janey,

Yes, I would definitely say this is true. I can only be upright for so long before I have to lay down. It's not because I have to sleep, it's just that I can't take being upright anymore. I lay down after lunch for an hour or so (no napping), and then have to go back up around 4-5.

Jana

Yes - It's so frustrating! I feel so tired, and yet I just can't fall asleep. Then I end up going to bed early, asleep by 7 or so, and have a poor night's sleep with a lot of tossing/turning/potty runs. I'm awake again by 4 or 5, but make myself stay in bed until 6. It seems like if I could take a daytime nap, I could stay up later at night and perhaps sleep in later. What I'd give for a solid 9 hours of sleep!

I'm not sure about sleep apnea, and I don't think I'd sleep at all with little electrodes stuck to my body in a strange bed and room. Anyone done this?

Also, Notgivinup, I have the same experience with pain meds. I take 1/2 a Percocet on some days because my pain is so bad, and it does make my symptoms seem better, and gives me a little more energy.

Good sleep to us all!

Jana

THANK YOU all for your input and replies. I guess I need to think about it a little more. I just wish I could be gone while she's here.

Cheers to everyone!

Jana

Julie,

Yes - you've hit it on the nose. I feel like I should be able to at least do the dusting and Swiffering of the floors (we have a lot of tile downstairs) and some cleaning in the bathroom. Shouldn't that help me get better, by being a little more active? And it's only twice a month....Hmm. I've always had this wonderful little thing called OCD/perfectionism. I would clean the place before she came to clean the place!

Cheers,

Jana

I know I am...A good friend of mine died when she was about 9 years old because she choked on her vomit. Nasty, and scary!

I've found mine to almost always be worse when I'm standing or even sitting up. Lying down with my head propped up with pillows seems to be the best for me. I don't do have EDS.

Cheers,

Jana

My best wishes for your sister, and I'll keep her in my prayers, along with everyone else on the Forum. I also had gestational diabetes during my pregnancy, and would up with an 11 1/2 pound baby!

Give your sister a hug from me.

Cheers,

Jana

I also had similar pain when my gallbladder needed to come out. Have them do a HIDA scan, but remember - up to 80% or so of women do NOT show anything on their scans or other tests, so a negative test does not mean you don't have a poorly functioning gallbladder! Both my tests were normal, but my gallbladder had completely shut down.

Another idea for your urinary symptoms might be interstitial cystitis. It can cause a lot of pain and weird urinary urges. I have this, and it's not much fun. However, you can treat both of these things, which is good news. Good luck!

Cheers,

Jana

Greetings Friends,

My SO has been trying to get me to hire this house cleaner to come in twice a month to do the majority of the cleaning. I feel like this is something I should be able to do myself, in small increments, except for the vacuuming. It's one small area in which I still feel like I have some control, like doing the laundry. I'm home every day, and the guilt issues are huge. The housekeeper is very reasonable, but I can't leave while she's here, and I think I'd be pretty uncomfortable reading in my bedroom while she cleans the downstairs.

Anyone else have experiences/thoughts on this? Thanks!

Jana

Nauthiz,

Thank you for taking the time to write about what has worked for you, and for wanting to share it with others in this forum. You'll have some people in total agreement, and some in total disagreement, but I think your heart is in the right place and that these things have worked for you. I'm glad you're feeling better, and if you do take a turn back for the worse, I hope you'll feel that you can still come back to the forum.

My best to you, but I have one question....How do you get 'meditation' under the 'exercise' category? Just curious...

Good luck & cheers,

Jana

R,

Would this have anything to do with the fact that I have an abnormal amount of ischemic areas in my brain, where blood flow has been reduced to the point that little sections of my brain tissue has died? Thanks!

Jana

Hi Green,

I know that I do the same thing about remembering what questions I want to ask the doctor when I'm there, so about a week or so before my appointment, I start a list of questions. I keep a pad of paper handy and whenever I have a thought or read about something I'd like to talk to the doctor about, I just jot it down. This seems to eliminate a major part of that problem for me. Hope this helps. Also, having a friend with you during the appointment can be very helpful, or even to think of questions to ask.

Cheers,

Jana

Best of luck on your move, and please try to get back on and post an update when you can.

Cheers,

Jana

I've also been on Paxil for about 10 years, and really like it. I was on a 10 mg dose for years, and then about 2 years ago, I had to increase to 15 mg per day. Perhaps just a small increase in your dose would do the trick? Sometimes the additional of a small amount of another med added to the Paxil will do the trick, too. I take my Paxil with Klonopin, and it's worked pretty well. Perhaps the diarrhea and the Paxil aren't actually the cause-and-effect...I hope you figure out something that works for you better, soon!

Cheers,

Jana

I want to echo what Firewatcher wrote, because it's the same message I want to give you. I certainly hit days where I feel so sick that all I want to do is die, too. I think probably many of us here do the same. But, at least we have that day, and hopefully the next day, and we can usually count on the next day being not so horrible as the day we're currently enduring. There's hope, and so many days that's what has pulled me through.

Be good and kind to yourself, get through the horrible days as best you can, and know that there will probably be a tomorrow for you, and it might contain great gifts and joy.

Jana

Hola Fellow Tucsonan~

I had just moved here and gotten 'Valley Fever' when I first started to get sick.

Please send me a personal message if you'd like to chat, since we're both in the same town!

Cheers,

Jana

I second that, Amy!

Welcome to the Forum! I'm glad you found us, and hope that we can be helpful. I have symptoms that are very much like yours. While supine, my BP will be about 90/60, pulse right at 60 (it would be in the 30s or 40s, but I now have a pacemaker for the bradycardia); standing I'll drop into the 70s or 60s, with an average BP of 75/60-65 and a pulse of anywhere from 110-140. I'm also a fainter and a 'dropper', where all of a sudden I find myself sprawled on the floor, but I don't actually have syncope.

There's a great list of doctors on this site, so you can always look into them if necessary. Which part of the country are you in?

Cheers,

Jana

Well, I've only watched two episodes, and I won't be watching it anymore....

Nancy,

I don't have any new info, but the same thing happens with my kidney function. It gets really low, and then improves, then gets low...you get the picture. So far it hasn't stayed low enough long enough to do anything about it. We just keep an eye on it and keep checking my blood panels. I know I also have a lot of ischemia in my brain, too (dead spots where there's been too much lack of blood.)

Thanks for bringing the topic up, because it is a real worry for many of us.

Jana

How disappointing! I received an alert from a friend of mine about the show, and then it turned out to be a total bomb. I think Dr. T uttered about 20 words. Sophia, you're right about that show - nothing is in depth and important topics are pretty glossed over. Sorry for passing this on, everyone!

Jana

Elfie,

I commiserate with you. I did get the advance degree, before I got sick, and was very happily employed in my chosen field for about 3 years when I got sick. My work was pretty physical, so I ended up having to leave it entirely. I went back to school after my son started college to finish my degrees, so I was devastated that after all that time and work I could no longer do my job. I've thought about going back to school, but know that my health is not predictable enough to make classes regularly. Have you thought about taking some courses online? I know that it would isolate you from others, but at least you'd be working toward a goal and possible other career.

I've been trying to figure out how I can still do the work I love from home. I think we just have to be really creative and stubborn!

Cheers,

Jana

Yay, you happy! Good news. Have a great Friday, to boot.