NEW TO THIS(please read)

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

jennia
New Member


Date Joined Jun 2004
Total Posts : 14
   Posted 6/8/2004 10:23 AM (GMT -7)   
Hi everyone,

I was just recently diagnosed with Lupus and have been suffering with chronic fatigue. It does not matter how much sleep I get I am always tired and have no energy...I sleep more than I am awake it seems...I have tried many of different things and it doesnt seem to help..My doctor recently prescribed Zoloft an antidepressant to see if that will help..He said that people that are diagnosed with a chronic disease sometimes battle with some form of depression which can cause chronic fatigue as well...Although I have been taking this drug I have yet to notice a change in my condition and I have been taking it for almost 2 months..Any advise????

Brynn
Veteran Member


Date Joined Mar 2003
Total Posts : 1663
   Posted 6/9/2004 8:47 AM (GMT -7)   

Hi Jennia,
Welcome to HealingWell and the CFS message board!   I'm sorry to hear you are having these problems with your health.  But still glad to meet you anyway :-) .

I can make a couple of comments on your questions.  First, I am under the impression that chronic fatigue is a symptom Lupus.  Being newly diagnosed, you may not have made much progress on educating yourself about it.  So I would encourage you to learn as much as you can learn about Lupus.  It will be invaluable to you in the future, in terms of making decisions about treatments, and just to understand what's going on with your body.  If you do find that chronic fatigue is not a symptom of Lupus, please post here and let me know.  I would hate to be giving out incorrect info (Lupus patients do post questions here from time to time).

Second, people with CFS have a higher incidence of autoimmune illnesses, than the general poplulation.  And Lupus is an autoimmune illness.  So it IS possible to have Lupus AND CFS.

I don't understand your Dr trying to blame your fatigue on depression, if you're not actually feeling depressed--unless he does think you're depressed, and used the fatigue complaint to get you to take the antidepr.  As far as I know, there is no reason to think that someone is depressed, just because they are fatigued.  There are a number of symptoms that one must have, to receive a diagnosis of depression.

Gosh Jennia, I would just really encourage you to do a couple of things--1)Educate yourself about Lupus, and about Depression, maybe even about CFS (HealingWell would be an excellent place to start); and 2)Pin your Dr down on several questions, such as--Isn't fatigue a symptom of Lupus? Can someone be depressed if their only symptom is fatigue? Can someone have both CFS and Lupus? etc.  While it IS true that people with chronic illnesses often become depressed, it really does sound to me, based on the info you have provided, that your Dr has not told you everything.  My goodness, antidepressants carry as much risk as any other medication, when prescribed inappropriately!  Not only that, but antidepr can have fatigue as a side effect!!

I hope some of this info helps, and that you can sort out some of these things pretty soon, Jennia.  Good luck.  Keep us posted.  And take good care.


Brynn
 
Moderator for Chronic Pain forums and
Chronic Fatigue Syndrome forums


jennia
New Member


Date Joined Jun 2004
Total Posts : 14
   Posted 6/9/2004 9:14 PM (GMT -7)   
Thank you so much Brynn for your insite to things....I have alot to think about and to educate myself to become fully aware of my illness..I will do so, so that I will be better equipped to ask more questions to my doctor...One thing I did learn while inquiring about Lupus is that yes, fatigue is a symtom of Lupus...I have an appt. coming up tomorrow with my dr. and I will be sure to ask more questions...It frustrates me to be told about antidepr. when I do not feel depressed, just tired and no energy...This will be something I am sure to address with my Dr.. I thank you for all of your help...I will keep you posted...Thanks again...Jennia

Brynn
Veteran Member


Date Joined Mar 2003
Total Posts : 1663
   Posted 6/9/2004 11:07 PM (GMT -7)   
You're welcome, Jennia. I'll keep a good thought for your appointment tomorrow. I hope it goes well, and your Dr "minds his manners"!
Brynn
 
Moderator for Chronic Pain forums and
Chronic Fatigue Syndrome forums


snohare
Veteran Member


Date Joined Oct 2004
Total Posts : 2088
   Posted 10/18/2004 8:51 PM (GMT -7)   
Hi Jennia
Sounds a little like you're in the same boat as me - tentative diagnosis of an auto-immune disorder (but I'm Crohn's Disease), lots of fatigue besides, and a doc who hands out anitdepr's ! The reading up I've done all seems to say the right antidepr. can make a great difference, but finding out is usually hell according to all the folk I know.... they're prescribed not for "typical" depression but because they help the body use low levels of whatever neurotransmitters are missing, more effectively.
I spent ten years finding the right one, and I'm still not great, but it makes a difference, it took some of the pressure off when I needed some energy. But I don't trust the SSRIs.

Mary-Anne
Veteran Member


Date Joined Nov 2004
Total Posts : 508
   Posted 11/15/2004 7:14 AM (GMT -7)   

Hi there.  I have been diagnosed with Lupus and with CFS, and I have been reading through the postings here looking for answers.  What do I do if I am tired all the time, but sleeping at night is not easy for me?  I take klonopin for GAD, and I understand it also helps other things as well.  My legs hurt me at night, like I need to stretch them all the time.  I can usually fall asleep (although it takes me awhile) and then I am awake in the middle of the night and it's all about rolling the dice on whether I'll fall asleep again or not!  I desperately want to sleep because I feel like being well rested would help me.

I am seeing my pschiatrist on Thurday, can anyone tell me what kind of questions to ask him?  What should I be looking for?  I do have a rheumy, but she said to continue seeing the psychiatrist and they would be contact with each other.  Any advice, direction, encouragement, would be greatly appreciated!


Blessings, Mary-Anne
"When I call on Jesus, all things are possible
I can mount on wings like eagles, and soar..."


Brynn
Veteran Member


Date Joined Mar 2003
Total Posts : 1663
   Posted 11/16/2004 3:24 AM (GMT -7)   
Hi Mary-Anne,
Welcome to the CFS message board!
Being tired all the time probably has a lot to do with your sleep trouble. Have you ever had a sleep study done? You can ask your Dr about it. What happens is you go to a sleep lab, usually in a hospital, 3 to 5 nights in a row. When you get there, they hook you up to all kinds of monitors, especially to detect the patterns of your brain waves. And you get monitored all night while you sleep (or not sleep, as the case may be). Then they can look at the results and determine whether you have a sleep disorder, and if so, what kind of problem, and then they can offer suggestions for treating your particular disorder. Difficulty sleeping and sleep disorders are common with CFS. Fortunately, some people with CFS end up having some very specific and treatable sleep disorders. So ask your Dr about it!

I'm not sure what to say about seeing the psychiatrist, what questions to ask. I guess that would depend on why you're seeing him/her. Whether you want support for the CFS and Lupus, or the GAD, or the sleep, or just all of it. I think the first and most important thing that you want to look for, is how comfortable you feel with him or her. You have to feel at ease, you have to feel ok talking to him or her. You have to feel he or she understands you. And you have to like what they have to say about your problems. You might be able to come up with some "test questions" for your first appointment. Maybe think up something that you really don't need support about, but ask anyway, just to learn how the Dr handles your question and how well he/she answers it. Or if you favor a particular therapuetic technique, ask about whether the Dr can do it. If you mostly want support with your illnesses, ask the Dr a few detailed questions about them. But the very most important thing is that you feel comfortable with the Dr, feel comfortable telling him/her your problems, and comfortable asking questions, and feel comfortable with what he/she has to say about your issues.
 
I would make one comment, though, about your Dr and the psychiatrist keeping in touch.  I don't know if this is something that is different in different states, or if it is something that is true across the US.  Where I am, one must give their Dr special permission to communicate with one's psychiatrist or psychologist.  I've tried this twice, over several years, and with 2 different primary Drs and 2 different psychotherpists.  Both times, I regretted giving them permission to communicate about me.  Both times, I trusted my therapist.  When my Dr asked about therapy, I would tell him how it was going.  That worked fine until my Dr wanted me to take antidepressants, and I didn't think that was the right course of action.  My Dr tricked me into giving permission for him to talk to my therapist, saying he just wanted to keep up with some particular issue.  When I thought about it later, I realized the Dr himself had planted the seed of doubt in myself about this issue, which wasn't really an issue at all, for me.  It turned out, both times, the Dr used the opportunity to convince my therapist that I should take antidepressants.  And so my therapist began pressuring me to take them, too.  I could no longer trust my therapist and left therapy, both times.  So that's just my story.  So I would advocate against letting them communicate.  However you should make your own decision about it.  Also, it may just be some local regulation where I am, that a patient must give special permission.

Well, good luck with your appontment!
Brynn
 
Moderator for Chronic Pain forums and
Chronic Fatigue Syndrome forums

Post Edited (brynn) : 11/16/2004 4:20:14 AM (GMT-7)


snohare
Veteran Member


Date Joined Oct 2004
Total Posts : 2088
   Posted 11/17/2004 12:55 PM (GMT -7)   
Sorry to break the thread of the conversation folks, but what's GAD ? (I'm an inveterate acronym collector when it comes to health ... tongue )
BTW you have my sincere sympathy MaryAnne, I've been having a lot of sleep/waking problems recently and I just don't seem to be able to "get back to the rhythm". It's as if I've suddenly become a pensioner, sleepwise. That's what happens after you hit 40.... eyes

Mary-Anne
Veteran Member


Date Joined Nov 2004
Total Posts : 508
   Posted 11/17/2004 2:08 PM (GMT -7)   
Hi there - my husband is in the military and my world is full of acronyms!  Anyway, GAD is Generalized Anxiety Disorder, but I don't know what your BTW means!  by the way?
Also, I looked up the word "pensioner" and I don't get what you mean, I ask because 40 is on my horizon, sooner rather than later (I am 38) and I think I am already beginning that reflection on my life thing that I've seen a lot of my friends go through these past few years.
I did some research about the difficulty I have with sleep - I found a site where I could put in the symptoms and come up with an answer, but I can't find, searched my history and everything, I happened upon it and I hope to happen upon it again.  I also posted my feelings on the lupus board and got the same answer, it's RLS (another acronym for you) Restless Leg Syndrome.  I see the psychiatrist tomorrow and I will ask him about that.  This DR's secondary specialty is rheumatology and he's a believer too, so I am praying that this works out well for me.
Sorry Brynn, for your experience, I would have run too!  I cannot stand being told I need something when every fiber in my being knows differently.  And for taking meds for depression especially, I have taken so  many different kinds, believing one of them held the cure, and now I am med free (other than the klonopin at night) and I have never felt better in my head, in spite of the lupus fog I am in quite often!  I will heed your advice and be careful.  But back to my appt tomorrow, I have written down some research on meds that I have done and the role lupus plays in affecting my areas of concerned, I am hoping  it all works in a 15 minute med check!  I have seen this doctor since we've lived here, and that's how he operates, wanting the patient to take control of what role the meds should play.  He was very supportive of my coming off of everything and he knows where I am at.
Thank you for your responses.  I do believe that being able to write like this is so helpful for me.
 
Blessings, Mary-Anne
"When I call on Jesus, all things are possible
I can mount on wings like eagles, and soar..."


Brynn
Veteran Member


Date Joined Mar 2003
Total Posts : 1663
   Posted 11/18/2004 3:22 AM (GMT -7)   
Hi Mary-Anne,
I think snohare was just joking about "pensioner". (old people sleep all day???) And yes, btw is 'by the way'. It's so easy to use all kinds of those...acronyms?...abbreviations, but I know a lot of people don't know them. I don't know very many myself, although I do seem to pick them up along the way.

I'm glad to hear you have such a good grasp on your own illness and treatment. It's unfortunate we are at a place in society, in history, which previous societies have not had to explore. Only those of us who have the courage, and intelligence and raging desire to be well, do well with their treatment. You know, I don't mean to sound judgemental, but there are plenty of people who can't understand science and medicine, who MUST depend on their Drs to take care of them. And I KNOW, I K-N-O-W how the great majority of them are treated by their Drs, and I KNOW that should be malpractice, if not criminal. I'm just waiting to connect with an attorney who has the guts to stand up to the system and who has what it takes to get a Dr either indicted or found guilty of malpractice, for not treating their patient's pain or other symptoms. But, forgive me, I rant!

Anyway, I know you'll do fine with the psychiatrist. You clearly are in control of your treatment!

When you first mentioned your legs hurt at night, the first thing I thought was RLS. But I was so unsure if your other issues might be more important...for you. But as I said, I realize now you are in control! The only med I've ever heard mentioned for RLS is Klonopin! And I didn't realize you were already taking it for the RLS. I thought you were taking it for the anxiety! Well, it could be a simple as taking a little higher dose.

Or...have you ever had a sleep study done? Your Dr would have to order it, and basically, you go to sleep in the sleep lab for 3 to 5 nights in a row. You get hooked up to all kinds of monitors, especially brain wave monitors--I think you like wear a cap full of electrodes. Like, have you ever had a...what's it called...EEG? Electroencephalogram? I think that's it. Anyway, sometimes if you've had a head injury with lingering symptoms, they do that. Well, plus I'm sure they have lots of reasons, but that was why I had one! Anyway, they collect all this info while you sleep, and later use it to analyze your brain waves and other things to determine if you have any patterns that fit with known sleep disorders. There are treatments for some of them, although I don't know what they are. So it's just an idea.

Oh, I so agree that writing on message boards is helpful. It's been just SO valuable to me in my--I call it my illness journey. I don't know exactly why, but I seem to be attracted to Drs who later treat me badly. Well, attracted isn't quite the right word. I guess maybe it's bad luck, or maybe I just expect too much, I don't know. Anyway, the ability to vent myself into some semblance of peace, helps me regain my center and decide which step to take next. Plus I like to think sharing my experiences is helpful for others in my situation.

Ok, well hang in there and good luck at Dr appt. Take care.
Brynn
 
*Co-Moderator for Chronic Pain forums
*Moderator for Chronic Fatigue forums
*Temporary Co-Moderator for Fibromyalgia forums


Mary-Anne
Veteran Member


Date Joined Nov 2004
Total Posts : 508
   Posted 11/19/2004 12:13 PM (GMT -7)   
Hi there...just wanted to update on the CFS and lupus combo, visiting the psychiatrist and all the fun stuff that has filled my week.  Bottom line for me is that both the psychiatrist and rheumy feel it is RLS but the referral needs to come from my PCM in order to see a neurologist (I posted this on the lupus site under "overlapping syndromes").  In the meantime, I was given Serequel to help me sleep at night, and I will try it tonight, but I couldn't for this morning because my plate was/is full for today!  I called my PCM and told him I needed to talk with him about referrals, so hopefully he will call me back before we leave for vacation and I can get this ball rolling.
My psychiatrist was very nice yesterday, and he told me too, that he didn't think a sleep study would be completely necessary (I doubt the military health insurance would spring for it, but it would be interesting if they would...).  He wants me to continue keeping him informed, so I 'll see him again at the end of January, I think that's when I made the appt for.  It made me feel good to know that he seemed concerned, and knowing what kind of health insurance I have, I am not a money maker kind of patient, if they accept "assignment" from Tricare, that's it, they get their money from them, whatever it is, and I pay nothing.  That's the good news.  The bad news is the network of providers that accept Tricare is rather small - for example, my rheumy is up at Bethesda, MD and I am in VA!, it's a good hour and a half plus, ride, never mind the traffic.
Anyway, just wanted to let you know where I was at, I am learning as I read the different posts on this site that something can be learned in every little thing, so I wanted to share.
Blessings, Mary-Anne
"When I call on Jesus, all things are possible
I can mount on wings like eagles, and soar..."


Brynn
Veteran Member


Date Joined Mar 2003
Total Posts : 1663
   Posted 11/20/2004 7:12 PM (GMT -7)   
Good to hear, Mary-Anne! Thanks for the update. We'll see how things go. And by the way--have a great vacation!!
Brynn
 
*Co-Moderator for Chronic Pain forums
*Moderator for Chronic Fatigue forums
*Temporary Co-Moderator for Fibromyalgia forums


artpainter
Veteran Member


Date Joined Feb 2006
Total Posts : 620
   Posted 3/3/2006 2:05 PM (GMT -7)   
just want to pretty new myself, not a-touchtypist so i look  at keyboard;starting to do it blindfolded, tho,   say a great big "hello" to tne newest members!hope this makes some sense;i goofed...words out of order;lord, this could take a long time! anyway, hi to you all & welcome, welcome :-)
New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, December 05, 2016 8:07 PM (GMT -7)
There are a total of 2,733,317 posts in 301,103 threads.
View Active Threads


Who's Online
This forum has 151244 registered members. Please welcome our newest member, Wedge.
341 Guest(s), 9 Registered Member(s) are currently online.  Details
Tagier, Bloom93, Vwblush, Teamchris, Scaredy Cat, Charmed3, time2reclaim, Wedge, iamamess


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer