It seems like all I want to do is go back to bed. I sometimes take two naps a day and the first is just after getting up and having breakfast. I'm also having a terrible time with depression. I wonder if I'm wanting to go back to bed because I'm depressed or if my being so tired all the time is making me depressed. Its one of those delima's of which came first the chicken or the egg.
I know what ya mean. I do think that for me it is a combo....fatigue and depression. I AM getting used to my new sjogren's "nap schedule". I just try to plan my day around it if I can..... hang in there....you are NOT alone! Wally
billydude, I guess that I would go with depression causing the fatigue and increased need to sleep. That is one of its more obvious symptoms. When one is dealing with depression and having need to sleep more there is a need to go to the doc and either consider an antidepressant ot have your meds renewed and maybe try a different antidepressant.
The interesting thing with depression is that it is not unusual to need a different antidepressant with the next bout of depression. There are numerous chemicals that are involved and each drug works on differenet chemicals. Hope you can get this beast under control as it sure ruins your ability to get anything done. Good luck Irish ;D
Quote from: Billydude on June 04, 2010, 08:11:02 PM
It seems like all I want to do is go back to bed. I sometimes take two naps a day and the first is just after getting up and having breakfast. I'm also having a terrible time with depression. I wonder if I'm wanting to go back to bed because I'm depressed or if my being so tired all the time is making me depressed. Its one of those delima's of which came first the chicken or the egg.
I can sure identify with the fatigue, my new rhuem (#3) says fatigue and brain fog are the two greatest complaints of his patients with sjogren's and unfortunately the least treatable. There's nothing wrong with naps, I'm sure you have productive days, maybe weeks and then end up like you are now. Things will get better, maybe just not on the schedule you choose.
I went through about every anti-depressant, mood stabilizer, etc. before I faced the truth that my depression comes after pain, fatigue, etc and does not cause those symptoms. The reverse is also true, if I wake up with reduced pain, etc, etc, etc I feel better. It seems all doctors want to call all depression primary, but when have you heard of arthritis or other autoimmune diseases being caused by depression or mania.
In my case the poor drs, counselors, psychiatrists, psychologists never had a chance. A med would only work until my sjogren's changed its activity or symptoms and then they would back to square one again. I know some folks get real long term measurable results from psych meds, but that's not how it works for me. Now, if a dr recommends any treatment I tell them the only thing I'd be willing to try is ect, they shut up quick when I say that. Funny thing is, ect works well for many people and is more humane than most other approaches, in my opinion anyway.
C991??? What is ect?
Billydude:
Fatigue, depression, fatigue, depression - it's a vicious cycle. For sure go to your doctor for advice. There are so many anti-depressants out there now and many have been on the market for 20+ years. I was lucky that my GP gave me Celexa years ago, mainly because it's been around so long and has so few side effects. It gave me some gastro issues for about 2 weeks then it went away. I remember sitting at work one day and that dreaded feeling came over me like I wanted to cry - only I didn't! It was so strange, but also a relief after feeling so down for so long. We all hope you find your way to feeling better soon.
Take care. LeoLady
I take Nuvigil, has anybody tried it?? I have complained for years about fatigue and they just mark it in my chart and do nothing. Finally I got my endocrinologist to listen to me. He wanted to do a sleep study which I declined because of my current situation, but he ran some genetic tests which came back positive for narcolepsy. I don't think that's 100% proof positive of narcolepsy - just like any other lab tests - it's just one part of the puzzle, but he put me on the nuvigil and I can at least get through my work day. Before, I was falling asleep at my desk, napping in my car on breaks and at lunch, then running home after work to take yet another nap :-[ Might ask your doctor about it. I sure know it's no kind of life to be sleeping most of the time.
Quote from: Billydude on June 04, 2010, 10:51:48 PM
C991??? What is ect?
Sorry, electro-convulsive-therapy
Quote from: Autoimmunity on June 04, 2010, 11:08:28 PM
I take Nuvigil, has anybody tried it??
You must be a Canadian, aeh? I take 800 milligrams of provigil a day. I do have narcolepsy and sleep apnea confirmed by 2 different sleep labs 10 years apart. It doesn't give me more energy, it just lets me stay awake when i want to (during normal daytime hours). I used to know every trick for sleeping on the job, although sometimes there's no way to hide a loud "clunk" when your head hits the desk :-X
Quote from: c991 on June 04, 2010, 11:19:57 PM
Quote from: Autoimmunity on June 04, 2010, 11:08:28 PM
I take Nuvigil, has anybody tried it??
You must be a Canadian, aeh? I take 800 milligrams of provigil a day. I do have narcolepsy and sleep apnea confirmed by 2 different sleep labs 10 years apart. It doesn't give me more energy, it just lets me stay awake when i want to (during normal daytime hours). I used to know every trick for sleeping on the job, although sometimes there's no way to hide a loud "clunk" when your head hits the desk :-X
No, not Canadian??? The Nuvigil, as you prob. know, is made by the company who makes the provigil, they didn't want to lose their patent, switched the drug up a bit. Works pretty well for me, I take 250 mg a day. I notice if I don't take it on the weekend, nothing gets done. It's amazing what I can get done if I do take it.
Quote from: Autoimmunity on June 04, 2010, 11:28:12 PM
No, not Canadian??? The Nuvigil, as you prob. know, is made by the company who makes the provigil, they didn't want to lose their patent, switched the drug up a bit. Works pretty well for me, I take 250 mg a day. I notice if I don't take it on the weekend, nothing gets done. It's amazing what I can get done if I do take it.
Oh, i thought nuvigil was the Canadian version. I might have to read up on it, i'm maxed on provigil and it just works, nothing else.
Yeah, read up on it. Some say it works better than the Provigil, I don't know as I have never tried that. However, if you are doing well on the provigil, no reason to change.
I had a terrible reaction to Provigil. I had a bit of a breakdown....took a handful of pills and ended up in ER. Later I looked up Provigil and there was a huge warning that it can cause suicidal tendencies. Once I went off it I was much better.
Someone mentioned a test for narcalepsy. I didn't know one existed. I had to give up driving except around my small town due to excessive falling asleep at the wheel. I had a sleep study done and passed it so its not sleep apnea. This is still the one mystery part of my puzzle.
Hi Billydude,
Sending you lots of gentle
( ( ( ( ( H U G S ) ) ) ) )
my friend and I hope that your doctors can find an answer for you soon!
Take care of yourself -
Patze
I completely understand you, Billydude. On weekends I take several naps a day, the first one being after I have breakfast, just as you said. I do try to deal with the fatigue and pain on weekdays since I have to work, but sometimes it's pretty tough. I've had chronic depression for years but medication has made a big difference and I don't think I'm depressed at the moment...believe me, I've had moments in the past of contemplating suicide and I'm not feeling anything like that now. For me, it's "just" the Sjogren's affecting me. The past few days my body feels as if I have been competing in a triathlon. :(
Feel better soon, Billydude!
I understand you Billydude. Before being diagnosed with Sjogren, everyone wanted me to be depressed. Yes, I was sleeping a lot (10-12h a night plus sometimes a nap) and didn't do much. BUT I felt and still feel the desire to do things. I just can't. That's how I know it's not depression.
I've been depressed as a teenager. I was constantly in bed because I didn't feel like doing anything. Life seemed worthless and I felt it was best to curl up in a ball and wait for it to pass.
I'm not like that now. I want to go out and see friends, I want do draw, paint, watch movies, cook. Most of the things I end up not doing because I don't have the energy or I hurt too much.
How is it for you?
Quote from: Billydude on June 05, 2010, 05:53:50 AM
I had a terrible reaction to Provigil. I had a bit of a breakdown....took a handful of pills and ended up in ER. Later I looked up Provigil and there was a huge warning that it can cause suicidal tendencies. Once I went off it I was much better.
Someone mentioned a test for narcalepsy. I didn't know one existed. I had to give up driving except around my small town due to excessive falling asleep at the wheel. I had a sleep study done and passed it so its not sleep apnea. This is still the one mystery part of my puzzle.
As far as I know, Nuvigil doesn't have a black box warning, but I looked up side effects and it says -? a serious rash or serious allergic reaction. (See, ?What is the most important information I should know about NUVIGIL??) ? mental (psychiatric) symptoms. Symptoms include depression, anxiety, hallucinations, mania, thoughts of suicide, aggression, or other mental problems.
? heart problems including chest pain
Nuvigil is Provigil, basically, here is the difference -
Chemical DifferenceProvigil is a racemic drug, meaning it contains a mixture of two different versions of the same molecule, which each have a slightly different effect. Nuvigil contains only one version of the molecule. This means that 50 percent of the contents of a Provigil pill is actually Nuvigil.
Differences in EffectAccording to the manufacturer, the primary difference between Provigil and Nuvigil is that Nuvigil has a longer half-life, meaning it remains in the blood longer. The actual difference in half-life between the two drugs is not specified. No other differences are noted.
*If you had such a bad reaction however, I don't think the drug is for you.
As far as lab testing for narcolepsy, it is a genetic test -Nearly 100% of Narcolepsy patients are positive for DR15, (a subtype of DR2) or DQ0602 (one of the alleles of DQ1). The association with Narcolepsy has been historically strongest, particularly in Caucasians, with DR15. HOwever, it may be even stronger with DQ0602, particularly in African-Americans. I came back positive on both markers.
Most doctors will not diagnose you with narcolepsy with just that test though, they require a sleep study. It's like I had a positive Ra test, a doctor would not say I have rheumatoid arthritis with just that test. However, with my history, my hip, neck shoulder pain, etc., likely they would say I have it.
It's just a piece of the puzzle if that makes sense.
Bluecat...you sound just like me.
Catcus Rose. The funny thing is that I always considered myself a pretty even tempered person. I never had mood swings or anything but the sudden onset of depression was on of the first worrying symptoms that appeared around the same time as some other telling symptoms. I don't have a lot of friends locally but I just started doing some volunteer work for a place that provides household things for needy people. I also just contacted my local SPCA to volunteer at the animal shelter. I think I just need a reason to get out of the house and something to make me feel like I'm contributing.
I had stopped seeing my phycologist recently as I was doing pretty good. I emailed her that I was having a troubling time again and she replyed back saying that I should just go on to this forum as you all are a big help. Its true but I think it a bit odd that when I reached out to my mental health provider she blew me off.
Perhaps your mental health provider thinks you're not too bad off and don't need her services? I tried to go back one of my old therapists a few years ago and she said she didn't think I really needed her anymore, that I was doing better than I gave myself credit for. Good for you for doing volunteer work...doing for others is one of the best things to take your mind off yourself. Being the anmial lover that I am, people are always suggesting that I volunteer for the local SPCA, but I'd want to take all the animals home with me. lol
Blue Kat, most of those places do have a foster care program. I'm just afraid I'd get too attached.
Quote from: Billydude on June 05, 2010, 03:33:04 PM
Bluecat...you sound just like me.
Catcus Rose. The funny thing is that I always considered myself a pretty even tempered person. I never had mood swings or anything but the sudden onset of depression was on of the first worrying symptoms that appeared around the same time as some other telling symptoms. I don't have a lot of friends locally but I just started doing some volunteer work for a place that provides household things for needy people. I also just contacted my local SPCA to volunteer at the animal shelter. I think I just need a reason to get out of the house and something to make me feel like I'm contributing.
I had stopped seeing my phycologist recently as I was doing pretty good. I emailed her that I was having a troubling time again and she replyed back saying that I should just go on to this forum as you all are a big help. Its true but I think it a bit odd that when I reached out to my mental health provider she blew me off.
Well if you are suffering from extreme fatigue from Sjogren and if you don't have a job (I'm assuming here) and looking for reasons to go outsite, if you manage to do what you're commited to (volunteer work), then maybe it's not depression. Everyone need people and activities to get motivated to get up and live.
It's fantastic that you're trying to find more activities, and props to you for doing volunteer work. I hope you'll feel better soon.
Fatigue and idleness can lead to feeling depressed, but here you seem like you have reasons to feel a bit off. Depression strikes without reasons. If you have reasons to feel bad and un motivated (you don't have anything in particular to do during the day, no one in particular to see), I think it might not be actual depression. Also, if you have the little bit of energy to fight to try to find solutions (coming here for instance) I think we can truly hope you'll get better.
Aren't there some sort of clubs in your city, cinema clubs, things like that, where you could meet more people. You could also try to take lessons, isn't there a language you've always told yourself you'd learn, or yoga, or something else, so you can meet more local people?
Good luck!
Hi Billydude
Sorry to hear that you've been having a tough time recently. It's great that you're able to get out and do some volunteering. Like the others say, that makes me think that your exhaustion is autoimmune-based rather than depression.
Hope your psychologist didn't charge you for the advice to chat on the SjS Forum!
Thinking of you - Chickpea
Yes, I'm trying to dig myself out of it. Looking and just starting the volunteer work has helped and I feel better already. Its also a reason to push through the fatique and not let the fatique always win.
Hi:
I totally understand the fatigue and depression would be the cause of you sleeping so much. Well, just think, at least you can sleep. Some of us have insomnia.
I am off the Tango Dancing again tonight. I did 3 hours worth Friday night- that solved my insomnia problem instantly.
For me, the key is to have something positive that I have a passion for - to look forward to . Have a group of friends with similar interest also helps.
Natural antidepressant, exercise is what I believe. As long as I am still alive, I am very thankful and grateful! I do make a great big effort trying to find natural therapy that works, with less side effects and complications. Until the day they don't work anymore, I am going to try to take the least amount of prescription drug as possible. I am on prednisone, and my doctor is worried about osteoporosis. I use it very infrequently.
Ya, get out of bed, get out and exercise, fresh air, have lunch with friends, get that body going.
Pegasus
I'm having a battle with depression right now. My husband and I are separated, and it seems like all I do is cry these days. I'm lonely, and I miss my home, and I miss my family (his mom, brother, and niece), and I miss my four furbabies (kitties.) It's hard some days to even get out of bed, plus, when I do, I feel so bad physically with muscle spasms, joint pains, tremors, etc. that I wonder why I even bother getting up.
However, life does go on, and I do count my blessings. I have three grown children and seven beautiful grandchildren and a great job and a nice apartment, so I try to focus on these things that God has blessed me with.
As for the fatigue, I don't have much of that anymore since I started taking ALA and ALC. These two antioxidants have given me my life back. I can do things that I haven't been able to in years. It's been nothing short of a miracle.
Big hugs,
Lisa
I'm gonna ask my doc about that Nuvigil. I thought I just had accept the fatigue. I'd like to be able to get something done around the house. I know I'm not depressed. Although being tired all the time can be depressing.
Quote from: bloodless on June 07, 2010, 02:33:26 PM
I'm gonna ask my doc about that Nuvigil. I thought I just had accept the fatigue. I'd like to be able to get something done around the house. I know I'm not depressed. Although being tired all the time can be depressing.
Please let me warn you about a few things. Your insurance may not cover it. I believe it is generally covered only if you have narcolepsy, are a shift worker or have obstructive sleep apnea. It is apparantly pretty expensive.
Also, when my doctor started me on it, he put me on 150 mg *think it comes 50/150/250. I was also taking armour thyroid. It gave me tachycardia - rapid heartbeat. So when I went back to him I told him I did not like this, it wasn't helping me at all and I didn't want to take it. His response was to increase the dosage to 250 :o So I decided to take it with a little bit of food, take my thyroid later in the day, and you know, it actually ended up working for me.
http://www.nuvigil.com/
CARPE DIEM !!!
Billydude,
I know when I was badly depressed (still am but coming out of it now I think), I just sat around all day and fell asleep every couple of hours. I am sure it will run its course but can you help it along by ensuring you are eating a good balanced diet and doing some gentle exercise (even sat in a chair lifting legs will be a start)? I have found this very helpful and as my mind has healed and the flare that caused it settles, I have had more energy which means I can exercise more, prepare better food and so on.
I really hope you feel there is a light at the end of the tunnel soon.
Beverley
Touch? LeoLady, touch?.
Patze
My insurance won't pay for Nuvigil. Dang the luck.
Quote from: beverley on June 08, 2010, 01:52:25 AM
Billydude,
I know when I was badly depressed (still am but coming out of it now I think), I just sat around all day and fell asleep every couple of hours. I am sure it will run its course but can you help it along by ensuring you are eating a good balanced diet and doing some gentle exercise (even sat in a chair lifting legs will be a start)? I have found this very helpful and as my mind has healed and the flare that caused it settles, I have had more energy which means I can exercise more, prepare better food and so on.
I really hope you feel there is a light at the end of the tunnel soon.
Beverley
Thanks Beverly, I do feel like I'm coming out of it. When I'm fully depressed I don't feel like or am interested in anything. So many things with Sjogrens seem to come in waves. This is one more thing that I feel a wave of.
Quote from: syng4hym on June 08, 2010, 12:29:37 PM
My insurance won't pay for Nuvigil. Dang the luck.
Check with your doctor and see if you can take the ALA/ALC supplements. For me, they work way better than Provigil (which my insurance wouldn't cover and which gave me bad chest pains when I took the samples that my doctor gave me) or Amantadine or any of the other meds used for fatigue. And the good thing with them is that they are natural substances which our bodies need anyway. But again, always check with your doctor before trying them or any other medication or supplements.