Feeling hopeless and helpless

amandalee · Post by **amandalee** » Wed Jan 23, 2008 6:44 pm

I am at a point where I just don’t know what to do anymore. I am so exhausted that it’s all I can do to force myself to function. I am barely surviving, and I am scared that things are just going to get worse if I don’t do something, but I have no idea where to turn for help.

I have been using CPAP since the end of July, 2007. For awhile, it seemed to be helping, but now I feel almost as bad as I did before I started treatment. Today I am so tired that I sat at my desk and cried for no reason. I haven’t done that since before I started treatment. It’s awful. I shouldn’t feel this bad. Every time I check my numbers, my AHI is less than 1.0, and there are no major leaks. Everything looks good.

Yet I wake up feeling like crap. All I want to do is sleep until about noon every day, then spend the rest of the day laying on the couch watching TV. I have to force myself to be productive at work, and sometimes I have a hard time getting really easy things done, or just concentrating at all. I don’t know how much longer I can keep it up. I’m scared because I’m all alone, and only have myself to depend on for paying my rent, etc.

I’ve already had my iron levels tested (awhile back). They were low, so I take a supplement. It doesn’t seem to help me feel less tired.
I’ve had my thyroid tested. It was normal.
I’ve had my B12 level tested. It was also normal.
Before I was diagnosed with OSA, I had an abnormal ECG (preventricular contractions). I had to go to a cardiologist and get an ultrasound of my heart. It was fine.

I just don’t know what to do. I spent 5 years going to doctors and being misdiagnosed before I finally had to beg one of the PAs at my work’s employee health clinic to refer me for a sleep study. I don’t really trust doctors much after that experience, and I don’t know what to say to get them to listen to me and actually search for the cause of my fatigue, rather than writing me a prescription for Prozac and shoving me out the door (been there, done that, didn’t work).

Do any of you have suggestions for me? Anything is welcome… how to find a decent doctor, what specialist to see next, what else to get tested… I feel so lost and helpless.

MartyR · Post by **MartyR** » Wed Jan 23, 2008 6:51 pm

sorry to hear this...i am getting my cpcp mahcine this friday, and i so afraid i wont improve.....i do know many on this board seem to believe in it and say dont give up....

amandalee · Post by **amandalee** » Wed Jan 23, 2008 6:57 pm

MartyR wrote:sorry to hear this...i am getting my cpcp mahcine this friday, and i so afraid i wont improve.....i do know many on this board seem to believe in it and say dont give up....

At first, it really did seem to help. And CPAP seems to work for alot of people here, so hopefully you will luck out.

I'm scared that there's something else wrong with me, but that no doctor will spend any time trying to find out what it is. I've already had one tell me "It takes time to get positive effects from CPAP."

It shouldn't be taking this long, I am only 27. I should be feeling better by now.

Slinky · Post by **Slinky** » Wed Jan 23, 2008 7:04 pm

Did you have a full sleep evaluation study one night and a titration study a second night? Did you ever get a copy, not just of the doctor's dictated report (about 1-2 pages), but also of the full summary data report w/condensed graphs (about 5-7 pages) from both studies?? There might be indications in those reports of other sleep disorders than "just" sleep apnea.

Just because Prozac didn't work doesn't mean that another antidepressant might not improve your outlook and discouragement.

I totally understand your dismay w/the medical profession! I went thru it after a whiplash and the death of my long time family doctor in the same time period. Nothing more "fun" than being a woman doctor-shopping w/a hard to detect health problem!!!! That just screams depressed hypochondriac to way too many doctors!!! Grrrrrrr. They begin to destroy your self-confidence!

NeedinZs · Post by **NeedinZs** » Wed Jan 23, 2008 7:10 pm

Amandalee,

I am SO sorry you are still not feeling ANY better. I agree that you should be feeling somewhat better, by the sound of your numbers, so there must be something else going on.

First, I would get your Ferritin level checked again, and are you taking your Iron supplement with some Vit. C, like orange juice?

A while back you talked about going to a Naturopath, I believe....did you ever find one, or any other Alternative or holistic Dr.'s that might have (take) the time to actually sit down and listen to you?

I wish I lived near you, I'd take you their myself!!
You must be so frustrated.

Is it possible to see your sleep specialist (if you have one) to go over your original sleep study, or give you another one, to rule out any other sleep disorders?

Please feel free to PM me anytime. I know sometimes just being listened to helps a little, but it sounds like you need to find someone you can help you find out what else is going on. Are there any hospitals or friends that recommend anyone?

I wish I had some answers for you. Just know we're all wishing you the best!
I'm sure someone else will chime in with some other suggestions.

Don't get down on yourself. Make it your #1 priority to locate and get yourself to a good Dr. I know they are hard to come by!!

Gail

amandalee · Post by **amandalee** » Wed Jan 23, 2008 7:13 pm

Yes, I spent two nights in the sleep lab. I haven't looked at the results lately.

I am not completely opposed to taking antidepressents, but I am wary of them after trying several that didn't work (Prozac, Effexor--horrible stuff, Wellbutrin, Lexapro + Adderall, and Cymbalta + Adderall).

When I get really tired and exhausted, I tend to cry. Do that in the doctor's office and your practically guaranteed to be seen as a "depressed hypochondriac."

My outlook on life would be alot better if I wasn't so tired. I just don't know if anyone can or would be willing to help me find out what's wrong.

ETA:
I take my iron supplement and a vitamin C pill together.
I have an appointment with a naturopath next week. I'm not extremely optimistic about it though.

My sleep specialist spends 1 day/week at the sleep lab where I had my study (30 min south of where I live) and the rest of his time at his pulmonology practive (1 hour north of where I live). I don't know if it would be worth it to try and make an appointment with him. Once I got my machine, it seemed like he and the sleep lab washed their hands of me. Maybe I need to find another sleep specialist.

I don't know. It's all so overwhelming.

deerslayer · Post by **deerslayer** » Wed Jan 23, 2008 7:19 pm

i am by no means a doc. can only ask common sense ?'s.

1. do you eat right ?

2 do you get any exercise ?

3 have you had a good thorough blood test , say for vit. d ,etc ?

4 do you sleep sound,wake up often ?

5 have you planned something that would get you excited(something to look forward to) ?

Goodluck sis !!!

goose · Post by **goose** » Wed Jan 23, 2008 7:22 pm

Hey Amanda.....
I'm really sorry to hear you're feeling so crummy!!! I sometimes wonder myself, but I know I'm feeling a bit better, so I just keep at it....

It sure sounds like you have something else going on besides the OSA (preaching to the choir -- I know).

My sleep doc offered Provigil to work on daytime wakefullness, but I just don't feel I need it at this point -- you may want to consider trying it to see if there's any improvement.....google it and check it out to see if it's something you might want to pursue -- I'm certainly no doctor!!!!

There are good doc's out there....

Keep plugging away at it!!!! You're obviously giving it excellent effort, so you'll get to the bottom of it.....

Take care
cheers
goose

amandalee · Post by **amandalee** » Wed Jan 23, 2008 7:30 pm

1. Yes, I eat right. I'm doing Weight Watchers, and it emphasizes having a balanced diet with at least 5 servings of fruits & veggies per day, drinking enough water, etc. I follow it pretty religiously. I'm not perfect, by any means, but I've managed to cut out most snacks and junk food, and I don't over-eat like I did before I started CPAP.

2. On the days that I'm not completely exhausted, I exercise. I usually spend half an hour on the treadmill and half an hour on the exercise bike. I feel a little bit better once I have worked out. (Won't be making it to the gym today though, unfortunately. I'm about to collapse). I exercise after work because I feel far too horrible to do it when I wake up in the morning.

3. I've had alot of blood tests for various things, and everything comes back "normal." Maybe it's time for another blood panel.

4. I usually sleep pretty soundly; at least, I don't ever remember waking up during the night. I go to bed around midnight and wake up at 8 am,

5. I think I am going to go visit my friend in Spain this April (that's something to look forward to). I'm just waiting to hear whether or not he has to have back surgery. Other than that vacation, I don't have much to look forward to.

ETA: Thanks for the comments and support, everyone. It's really helpful.
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sleepycarol · Post by **sleepycarol** » Wed Jan 23, 2008 7:31 pm

I have found that many of the antidepressants either have side effects that I tend to have or simply don't work.

Prozac makes me a jittery mess, Effexor doesn't do anything, Cymbalta -- well I had a nervous breakdown taking it, etc. etc.

I am now taking Zoloft. It is like cpap mask there is no right one or wrong one in my opinion.

You have to find one that works for you and your body chemistry. You may not have found the one that works for you.

Are you taking other meds that could be making you tired? How is your stress level at work? Is your job taxing your mental ability?

I too am still battling the fatigue and tiredness. Don't give up -- try to hang in there.

deerslayer · Post by **deerslayer** » Wed Jan 23, 2008 7:41 pm

girl it sounds like you are doing bout everything right. are you taking any perscriptions that could be messing with your homeostatic (biological)clock ? cokes, coffee? othr than a good doc that will listen and take ample time with you & not treat you like a guinea pig. not the assembly line medicine type. above all try & stay positive . hang in there amandalee

deerslayer · Post by **deerslayer** » Wed Jan 23, 2008 7:44 pm

carol, my wife takes zoloft ! it is a life saver for both of us..plum scary without it. i love my soulmate nevertheless.......

amandalee · Post by **amandalee** » Wed Jan 23, 2008 7:48 pm

Other meds:
Right now I am taking Ortho-Tricyclen low and Clindamycin. My dermatologist prescribed them to clear up my skin.

My stress level at work is about the same as it's always been. I'm doing the same things I always have, and occasionally I have nothing to do. It's just that when I am so tired, I have trouble concentrating, and that stresses me out.

I'm not a big coffee fan, and I only drink coke (or other caffinated soft drinks) occasionally (maybe a couple of times a month).

I'm trying hard to be healthy, yet I feel like crap. It sucks.

sharon1965 · Post by **sharon1965** » Wed Jan 23, 2008 7:49 pm

amandalee
i'm so sorry that you're struggling...i know exactly how you feel, and i know how frustrating it is not to find a diagnosis...this month i passed my first year anniversary on cpap and i don't really feel so much better either...the only improvements i've seen are no more napping and being able to stay awake through an entire movie in the evening (and not always!)...i try to remind myself that i am at least keeping myself safe while sleeping by staying on cpap in spite of a lack of obvious results

forgive me, but i can't recall if we've discussed other sleep disorders before ie: fibromyalgia, periodic limb movement disorder--these would cause arousals that you aren't aware of and that aren't reflected in the cpap data and would certainly be a cause of extreme tiredness
do you have pain along with the fatigue? have you been checked out for chronic fatigue syndrome? i was going to suggest pernicious anemia, but you say your B12 is ok;

in my case i believe i've had osa my entire life, but was able to manage fairly well through my twenties and early-mid thirties, but 3.5 years ago i suffered an adrenal crash due to severe depletion because of panic reactions to apneas; could you talk to someone about checking into your adrenal health? when this happened to me i literally hit the dirt...couldn't get up a flight of stairs or do even minimal housework without having to rest in the middle of it; i cried all the time and was so exhausted i could barely function, even though i had been very active in the years leading up to this time

other than those suggestions i don't know what you could do...i think your idea of having a hormone panel done is a good one; could you get a referral to an endocrinologist or internist?

i'm so concerned about you, amandalee...please continue to let us know how you're doing

amandalee · Post by **amandalee** » Wed Jan 23, 2008 7:55 pm

I've wondered if I might have chronic fatigue, but I don't know how to get a diagnosis, as some doctors don't even think it's a real condition. I don't think I have the symptoms of fibromyalgia, but it is something to look into.

I don't know about periodic limb movement disorder, I'd need to check my sleep study again to see if there was any sign of something like that.

Maybe I will try to get an appointment at the clinic here at work tomorrow and see if they will give me a referral to an endocrinologist or internist.

They are probably so sick of me coming in and talking about how tired I am that they don't take me seriously anymore.

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