I'm New

[sunisshining]

Hi Everyone. I'm sorry that you're all so sick. I am praying for all of us and all of the doctors so that we can get some relief.

So i just found this place. I'm in a hard position right now. I"m so exhausted and I'm a freshman in college. I managed to get good grades the first two quarters but i don't know what i'm going to do this quarter. I don't think i'm going to be able to take a normal amount of units because i've gotten to the point where even taking a shower is really difficult or just walking to brush my teeth. In addition, my muscles burn so badly and start to tingle. I've been diagnosed with POTS because of in-office tests and two holter tests. But my heart rate is too high most of the time. I've been given a small dosage 2.5mg of lexapro b/c the cardiologists here at stanford say that's what their colleague has had lots of success with in treating adolescent/young adult females with my problem. But they don't know what causes the burning in my muscles. I notice that my arms burn more when i get out of breath, which happens a lot. Writing or typing is even painful or if i get up to go to the bathroom and then get back in bed it takes a while for the tingling and burning to calm down to a semi-tolerable state. sometimes i get horrible pain from my belly button to my toes that lasts for about six hours and keeps me from falling asleep. And i just feel weak. It has gotten really bad this week so they put me on the medicine but i don't know what to do in the meantime. I"m also so nauseous right now. on thursday i threw up twice at the cardiologist's office. So i've been trying to maintain on crackers/plain bread and soda. plus apple sauce every now and again. My cardiologist said he could prescribe something for the nausea but then i emailed him and he said to email my general doctor at the student health center because he is just a heart specialist. i'm not going to email her,t ho, cause she barely ever emails me back and the only time she did was when i was telling her that i was having my cardiologist sending documentation to the Disability Resource place, and she emailed me back and said that sounded like a good idea. So i'm just so frustrate. I have been on and off sick since middle school after i got a cold/flu and what they thought was a sinus infection. I've been through so many doctors - pediatricians and pediatric specialists - neurologist, cardiologist, endocrinologist, nephrologist, GI doctor, psychiatrist, psychologist, ER visits, allergist, rheumatologist and the list goes on and on. I've been on so many meds in my life - for what they first thought were migraines - topamax, elavil, effexor, periactin, magnesium, b6, chlorproma-something, pain meds, some other antiseizure meds in iv to try to stop headaches, prednisone - that was the only thing that worked but then after a few months it stopped working. Then iron because i am anemic cause i wasn't eating enough iron but my counts are back to normal again but i still feel lousy . At least with this latest relapse i'm not haviing the horrible headaches (i would get so irritated by the tiniest sound, smell or light - my poor parents and sister!). But i just feel horrible. I have been meaning to post to this board for a few days but didn't even have the energy. i'm lying on my bed right now with my laptop leaning on my big stuffed panda in my dorm room. Most of my friends are going into SF today. So lucky! I want to have enrgy to have fun again...or just do normal stuff would be a good first step. So, i'm just kind of waiting, hoping and praying. I don't like being the sick one. I like making pwople feel better - i'm the "sunshine committee" in my dorm - i enjoy making cards and tea and loaning out stuffed animals to people who are sick...i don't like being the sick one and i don't like not being able to say "yeah, i'm feeling better." So, i emailed my cardiologist again asking if he could give me a higher dose of the lexapro to see if it will work faster or better. I figure it can't hurt because I'm starting to get pretty blue about feeling so icky. But the only problem is that i won't feel all happy until i feel better because that's alli want. that's all i've wanted since middle school. Senior year in hs i lost like 40 pounds before i was put in children's hospital. And i think i've started losing weight again..but only like five pounds in like a few weeks. But I really hope i don't start losing cause i lose really quickly and then i get weaker. I'm hoping that this med will work and all i ahve is POTS. The doctors say they don't think all of my stuff is caused by POTS and that it's probably something that is going to take a long time to play out, but there's a slight possibility it could be all pots. So, i have to go to a stanford neurologist and and internist at stanford since they say that'll be better than having a student health center dr. managing my case and i thinkt hey want me to go back to rheumatology or something like that...even though the doctors there looked at me like i was crazy. Like most doctors. i "ve only had a few who eventually trust me/understand, but they're at a loss cause they can't really do anything. that's like my cardiologist now. I WANT TO FEEL BETTER!!!!! I can barely stand up for long without feeling like i'm going to pass out - i never do i just feel ike i'm gonna faint. And i just feel weak like ineed to lie down. I've tried eating really healthy food and i've even tried exercising but it hasn't worked and now i'm to the point that i can barely walk to the bathroom without feeling out of breath. How can they let us suffer like this and not find a cure or recognize it as something serious? at least my cardiologists know that it is like my heart is running a marathon all day so that would be tiring and they say to rest, which i'm doing cause that's about all i can do, but i like doing stuff and being all social and doing work and i like to live a life full of energy...bouncing off of the walls. But i can't right now. I'm glad i found this place because for the longest time i thought i was the only one who felt like this and convinced myself i was crazy even tho when i try to ignore how i'm feeling i get so weak and almost pass out. This has been on and off for like most of my teen years..and i'm 18 now.

I love u all and i'm praying for us.

Thanks for being here. Let me know if u have any prayer requests.

~sunisshining

[Ernie]

Hi,

Welcome to our nice "family".

I can understand how frustrated and sick you are and I feel for you.

The short answer to your question to why doctors don't know what to give us is that there are not many research going on because we are not profitable patients for doctors and pharmaceutical companies.

There are a few "good" doctors around. There is a list of them on Potsplace, the most famous being Dr Grubb.

You need to find a specialist who knows how to deal with our disorder. Then you try different medication until they find something that works for you.

Ernie

[Roselover]

Hello Sunisshining!

It really helps to know you are not alone. There are many losses with this illness and they vary depending on our age and circumstances. Remember that it's OK to grieve your losses and you need to allow yourself this grief. I strongly encourage you to read eveything there is on the Potsplace website. There are many good tips that might bring you a little relief.

Are you a student at Stanford? I grew up in Escondido Villiage - the married student housing at Stanford and went to school at Escondido Elementary. I have very fond memories of Stanford and football games. That was back when they were the "Indians" instead of "Cardinal"

I will pray for you too!

Roselover

PS: I am sitting in bed (no panda though) with my laptop in my lap too!

[sunisshining]

Thanks everyone. I appreciate your help It's comforting there are other people like me around. Right now at least my best friend is doing her art stuff in my room and we're listening to music while i'm lying in bed trying to do work on and off. Yes, I do go to Stanford. I'm a freshman here. I love it soooooo much. i just don't love being sick, but, oh well. We can be the lying in bed w/your laptop club

Yeah, how many medicines have all of you tried. my cardiologist basically said they're gonna try lexapro and if it doesn't work then they'll assume something else is going on and i'll have to go to some other specialist. I don't get that. Apparently there are so many medicines people try. I'm almost tempted to email him a link to the website but i feel like that won't win me any brownie points. Hrrfffggghh. So, i'm just waiting. I don't get low blood pressure when i stand. my cardiologist said he thinks that there is some problem with my nervous system that calms things down. And the other cardiologist (one's a fellow, who's the nicest, and one's been a cardiologist for like 30 yrs) said something also about vascular tone or venous tone or something like that. I wish there were some medicine that would work soon or quickly...

And i wish i could suggest more mediines to him.

oh well.

thanks for your support!

and yay that the sun is shining!

HUGS and prayers,

sunisshining

i love you all and hope to hear from more of you too. i've finally found people like me.

[Gena]

SunIs Shining-

I'm so glad you found us. I know how depressing this illness can be. However, keep in mind there are a lot of sunny days in between the cloudy days and you will have your share of them again.

You symptoms of burning muscle pain and naseau could be caused by dysautonomia or hundreds of other things. A few things that come to mind that you may want to discuss with your doctor (if you haven't already)

Possibly fibromyalgia? (this is a link to symptoms) http://www.hwcn.org/~aq226/symptoms.html

I had very similar muscle pains, anemia, nausea and mild tachycardia before I was dx'd with celiac (gluten intolerance). Once I was dx'd and went on a gluten free diet, the symptoms all subsided (my tachy came back when I got POTS though). A simple blood test can tell you if you have this. The muscle pains are because the body becomes deficient in all of the vitamins, especially B vitamins which are vital for nerve transmission.

You may want to try a calcium, magnesium, zinc combo supplement to help your muscles relax. A b-complex vitamin may help as well. (These are just possible suggestions, so please discuss them with a health practitioner)

Hang in there, and I'm glad you have supportive friends who care. That can make such a huge difference in our outlook. I hope you find some answers and relief soon.

Gena

[Ernie]

Hi,

Have you tried compression stockings, salt and Midodrine.

Ernie

[KathyP]

Hi SunisShining;

Welcome to the club!!! I know how frustrating it is to have a doctor tell you one thing and another tell you something completely different when you are telling each of them the same thing.

I feel for you!!! You are so young! I started having my dysautonomia problems when I was 28. I am now in my late 30's. It took over 10 years to figure out what I was dealing with and what name it has. I was just relieved to know I had a real problem and it wasn't all in my head.

I don't have a problem with muscle pain but I do get tingling in my hand, fingers and feet. I would guess the it's just a symptom with the rest.

Think positive!! Know that you are not alone. You will find the answers you need.

Take care!

KathyP