What To Do???

[bebe127]

I'm really not sure if I want this question to be answered or not. Maybe this is just another rant/pity party from yours truly.

What to do when for all intents and purposes everything seems fine, but you still feel like poop every single day?

I wake every morning to a fluttery heart feeling even though my pulse is fine. I barely get any sleep as it is so hard for me to fall asleep and then stay asleep. I toss and turn all night with back pain that causes me to wake and even at times wake my husband as I groan. My chest hurts all the time, sometimes down my left arm and around my back even. Plus all the other unwanted symptoms that I have daily.

I take my vitals and all is well, but I still feel so poorly. My dr. is really not that big of a help as he only refills my prescriptions and doesn't have the inclination to test me for anything else. As you might know, I was dx back in 2009 and that's pretty much where it stopped. I suppose I should be thankful that I have improved somewhat, but not even close to being my old self.

I have taken some time off from this and other sites to see if I could focus on something other than my illness and its effects on my life, to no avail. I just don't know what to do anymore.

The thought of going to see the dr. sends me into a downward spiral as he hasn't really been able to help in the last 3 years. Going to see another dr. and thinking of starting the whole process over again is overwhelming. I feel like I should really go to see another EP and get a complete heart workup since it's been a few years, but again, the thought of starting all over again...well, I don't even want to think about it.

I just want to feel better...though don't we all??

Ok, I think I'm done. Might be due for a good cry.

Blessings to you all.

[ask2266]

Bebe:

I am sorry you are feeling so poorly. You deserve to be able to complain and to cry. I hope you will at least allow yourself that.

I don't like any of my doctors either. I have been to about 15 different ones in my town for my various conditions. When I told one of my rheumatologists about my chronic fatigue syndrome, he dictated into his notes (I heard him do this) as "quote chornic fatigue syndrome end quote," like it wasn't a real illness and/or I didn't really have it. This is after I had gone out to California to see a chronic fatigue specialist at Stanford who had confirmed my diagnosis. It's such a long battle to find someone, and sick people have such little energy to fight a battle.

Well, I just wanted you to know that I am sending hugs your way.

ask2266

[bebe127]

Thanks so much ask It's so nice to have someone just listen and understand. Don't get me wrong, my family is loving, supportive and helpful, but I just hate to dwell on my illness in front of them. So many times I keep the pain to myself and the answer "I'm fine" crosses my lips multiple times a day. Just having one of those days I suppose.

Thanks again for your thoughts

[bebe127]

I think I should see a new dr., but I just know that they always start out with routine blood work and mine always comes back fine, then they just kinda stop there. When I suggest maybe some specialty tests like the cata-thing in the urine or an ANA for autoimmune, I get "That's not necessary since all your other labs came back fine." I don't even know what type of POTS I have and can't find a dr. in my area to help me. Even my own dr. just glanced at my list of symptoms (that I had neatly arranged in a chart with frequency) and gave it right back without a word. Going out of town to a dr. is out of the question at this time.

I'm just tired of going in circles.

Again, thanks for listening/reading

[davecom]

I think you should continue to seek out a new doctor in your area if you are unable to travel. I would do extensive research - Yelp reviews, personal recommendations from other POTS people in your area, doctor review sites, looking into ones that have written journal articles that are even remotely relevant, etc. Doctors are service providers and are well compensated for what they do. It is time society stops putting them on a pedestal and demands they earn their exorbitant rates.

[bebe127]

Thanks Davecom, and I agree that they should earn their keep.

[Guest Hanice]

I was having a bad day yesterday and still am today. This page is very helpful but could be very depressing and cause major ANXIETY and panick for me. I feel better when I don't visit too often. I think you should go and get a full workup, even though the test most likely will all come back normal.

Ive been feeling so unsafe lately. That's probably what we all feel from time to time. I hope you're better by now.

[Katybug]

Bebe,

I'm thinking that you may want to look for other specialties before just finding a different EP. For example, maybe some of your poopy feeling is the lack of sleep and seeing a GOOD sleep specialist and a GOOD pain management doc could help. A good night's sleep is very important to how we feel. The first sleep specialist I saw was a quack, but I'm working with a woman now who is awesome and has bought me 2 hours a night. It's still not enough and we are continuing to work on it but she's good and her answer was not more drugs. I think you should advocate for yourself the same way you would for one of your loved ones. If you wouldn't be satisfied with your current care for them, then you shouldn't be satisfied with it for yourself.

[looneymom]

Hi Babe,

I can relate what you are talking about. My son has many symptoms to deal with but I think I would focus on my worst symptom. I personally think my son's worse symptom was not being able to sleep through the night. So I started researching sleep deprived and how it affects the body. I was amazed at what I found. Being sleep deprived can cause so many symptoms. Since you mentioned not being able to sleep well, I think I would go see someone about that. If you could start sleeping through the night, maybe some of your other symptoms would settle down. When my son had that three month period last year when he could walk and stand, he had made progress with other symptoms. His headache went away and he was not as super sensitive to touch. He was also sleeping through the night. After 7 1/2 months of not sleeping through the night, my son is finally sleeping through the night now thanks to a neurologist that put him on the extended release clonidine. However, since my son was not able to sleep though the night, I have know ideal how long it will take his body to catch up on sleep. If your body is sleep deprived this may have something to do with all the symptoms that you are experiencing.

Rachel

[bebe127]

Thanks all for your comments.

I might just look into the whole sleep thing. I am even friends with the head of the sleep department here at our local hospital. Maybe I'll give his wife a call and pick her brain a bit.

I want to feel better and find a dr. that can actually help, but just the thought is so overwhelming. Then again, I think...I'm not going to get better until I get out there and find someone (yes, unfortunately I'm one of those people that loves to complain and then do nothing about it). I don't drive much and don't go many places without my husband, so I have to take his work schedule into mind and I can't just have him taking off all kinds of days to take me here there and everywhere to find a new dr. Of course, if it helps then it would've all been worth it. Just taking that leap is hard for me. I've had such negative experiences before and I'm afraid it will all start all over again and I'll get nowhere.

I did talk to my husband about beginning to see new dr.s and he was very supportive telling me to go ahead and make appointments if that is something I think would help.

Thanks again y'all,

Bebe