View Full Version : I am sick of being sick........
01-02-2009, 05:23 PM
I haven't been on in quite awhile, but I have been trying to keep up with threads when I can.
My life has been filled with little time because it's revolved around school and being sick.. :(
I would give so much to feel completely normal again and how I did before all of this started. I wonder what normal even is? I would love to feel like my friends do and not have to worry about how I am going to feel and how to prevent my symptoms from flaring up. I do not feel like my age a lot of the time (18 in a month).
I have missed soooo much school so far this year, and I have gotten so behind with homework, which, being on break, I am almost completely caught up (wonder what that will be like knowing I don't how piles of work to do....) But it has been so difficult. I have no life except go to school, find energy for homework and studying, and sleep. Within the past few months, I have had the stomach flu three times and bad cold, and it really seems like I am the first to catch any virus, then after it goes away, I am left with all of my "usual" symptoms.
The most difficult part for me is sleep. If I don't sleep enough, I get sick, then I miss more school. I have tried, but right now, school and sleep just do not balance, and for me, school is so important to me, but I am so sick of feeling lousy all of the time. A few weeks ago, I stayed up for about 36 hours straight (a thursday and friday) to study for some tests I had to do well on (which I did, thankfully!) Well, to my dissapointment, I realize staying up all night is going to get me sick. But I refused to believe that, and I get one hour of sleep about five days later, then about two hours a couple nights later. I missed about a week of school because I felt so sick (joint/muscle pain, fluey, all energy gone, exhausted, etc.)
I was prescribed Adderall a few months back to give me energy to actually function and to get homework done. Adderall is an amazing medication, it masks the tiredness, and gives me energy; but, no sleep=get sick. And adderall doesn't get rid of everything else(joint pain, headache, flu feeling, etc.), which then causes me to have to lay down despite having energy. I just can't win. :(
This is basically a rant. And nobody seems to understand any of this, which does make it harder. And I have read that people with lupus need to listen to their body and adhere to their limits (ie sleep when tired), but it just isn't possible for me. And stress of staring at the four piles of books on my floor isn't helping much either.
So, anyway, I see my rheumy for a routine appt in a few days, and something needs to change. This is ridiculous, I can't keep going like I am now, and I need to get all of this straightened out before next year in college.
For the lupus, I currently take plaquenil, prednisone(1 to 5 mg), and adderall as needed/most days. Is there any medication or something that exists that would give me a better quality of life? More specifically, anything that I can talk to my rheumy about to help me be able to get as little sleep as I want (within reason, I know, but like 5 hrs a night), and NOT have my symptoms flare up? This is just crazy.
I am soo sick of missing school and getting behind, and then not feeling well enough to get everything done. I can barely handle the current school schedule now of getting up at 6am and then going to sleep at around midnight, and doing it all over again. My mind is awake, my body is tired, and I would really like for both of them to be awake again.
What has medication or anything (I'm desperate) that has worked for you?
Please tell me there is hope, and that I do not have to live my life like this.
I hope you all had a wonderful holiday and everyone is well!
It's been awhile, hasn't it! You were one of the first people I met here. It's good to see you back. The powers at be saw fit to make me a moderator here. Can you believe that? Never would have thought that would happen. You'll recognize alot of names of people who are still here. Oluwa, Kathy, and others. We've also had a bunch of new members sign up lately, all of whom have alot to contribute.
Anyway, I'm sorry you are having such a tough time. I was healthy back when I was in college, and it was hard enough. Having Lupus while going to school has to make things incredibly difficult for you. I wish I knew what to suggest to you for a med that could help, but I don't know what would help. I know you have quite a conflict going between tending to your studies, and getting enough rest. And I don't have to tell you that the stress isn't helping you. I don't know if there is any substitution for sleep for people like us.
I'm thinking Saysusie or maybe Oluwa might have some suggestions for you. They'll be along at some point and they may have some ideas for you. It's good to hear from you again. I hope we can help you find the answers you need. Have a good night.
P.S. Thank you for your kind words over at my long night post. I am feeling better.
01-03-2009, 07:25 PM
Well, lucky you... you are the first topic/person I am replying to. Man, I can understand how you are feeling. It's an evil circle, isn't it? You don't get enough sleep, so you can't fight off getting sick, then you get sick, which makes your lupus flare up, which makes you depressed because you feel like you are sick all the time, and the depression makes sleeping hard...
I've been going through that for years it feels like. It wasn't until July of 2008 that my lupus was actually diagnosed. Although all the symptoms finally had a name, it didn't make much difference. Unlike my diabetes (have had that since I was 14) where a shot of insulin can take care of the majority of the problem, the lupus has NO one-pop wonder drug and it becomes a game of prescription roulette.
Right now, my newest drug is Plaquenil which I will have been on for 6 months next week. I go back to the MD to see if it has helped any of my numbers at all (ANA, C3, C4). About 2 months ago, I had terrible ear swelling where they put me on Prednisone. Although my diabetes hates hates HATES the drug, the rest of my body just loves it. I never felt better for those 6 weeks it was in my system. But that's not a fix it all for me because it's not happy for the blood sugars.
In addition to taking Welbutrin for depression (which has been a wonder drug for me...no side effects), Buspar (for anxiety), Nexium (for terrible acid reflux) and iron supplements for anemia, I also take an Ambien every night for sleep. Most doctors frown upon taking it for long periods of time, but the fact of the matter is: if you don't get a good's night sleep almost EVERY night, your body can't renew itself to help it heal. It also causes depression. Ask yourself: When you do go to sleep, do you remember your dreams? If so, you are not getting into a deep enough sleep and your body isn't getting the renewal rest it needs.
You might just need something to get back on track. Don't try anything over the counter (supplements, tylenol PM). They don't go good with other drugs. Ask your MD. And don't resort to any pain meds you might have for decent sleep. In many patients, strong pain meds can actually cause insomnia.
Good luck. Keep us posted on how you are doing. And I know it's easier said than done, but try not to stress it.... it only makes it worse. (Easy for me to say, huh?) Smile and laugh whenever possible. :D
01-04-2009, 02:35 PM
Gisele, I'm sorry you've been struggling. How long have you been on plaquenil? It often helps with fatigue, but it can take a long while to work. Prednisone is often an answer for other symptoms, but you're on a pretty low dose so it may not be enough to really 'kick' the things like joint pain. Still, taking prednisone has it's own risks. Sleep is key, Gisele. I don't know if anyone is going to find something that will let you get by with only 5 hours a night (or less) and still feel well. Even healthy people have a hard time getting away with that, and lupus really, really requires rest. Taking something for 'artificial' energy is only going to help short-term. As you learned, going without rest usually means you get sick. I sure do!! I have to take something to help me sleep (I'm a long-time insomniac) or I pay the price big-time. I hope your docs can give you some answers on your symptoms. In the meantime, try to figure out a schedule that will let you rest - even take naps, if you need to. And fit in a mild work-out, too - it will give you energy, even when you feel tired. Good luck, Gisele.
01-04-2009, 11:52 PM
I am with SassyAuburn, you should look into Ambien or Ambien CR which is an extended release. I had to take Ambien for almost a year because I just wasn't sleeping. You could also look into over the counter sleep aids. Tylenol makes one that works pretty well and it is much more affordable :wink: I am starting to have that same issue again :( You are right, if we do not sleep we are just setting our selves up to be thrown full blown into a flare up :!: Like you said, what can you do if you just can't sleep. I think it is ironic that with our disease we need lots of rest and sleep; however, our disease can cause insomnia......sometimes it just isn't fair :!: Hopefully your doctor will give you something for it and you will find yourself getting more and more sleep and feeling a little bit better as you go. :sleeping: Until then keep your head up and keep talking to all of us, we will help you get through it :wink:
01-05-2009, 01:33 AM
Thank you Rob, SassyAuburn, mnjodette, and Danica01, for your sweet replies!
Congratulations, Rob, on becoming a mod! That's great!! =)
Welcome, SassyAuburn, to the forum! You'll love it here!
Jody - I've been on Plaquenil for a little over a year now, and it has made SUCH a difference with the fatigue, joint pain, and intensity of the sick feeling. So, it is a big improvement over last year, but it's still there and interferes with my life. :/
Danica, thanks for the idea of the OTC tylenol sleep aid - I didn't know they had any thing like that. I currently take ativan at nights on days I take adderall to get some sleep, and I worry that ativan affects my memory/retaining material that I studied on that night, so the tylenol OTC is something to look in to for me!
Actually, my problem is not being able to fall asleep/insomnia(although I wish it was!!) My problem is that I get worn out too quickly, no energy/tired, etc., and with school, I have NO time to feel tired or sick.
My problem is actually resisting the urge to sleep and being able to stay up and not have to sleep so much. My schedule with school and homework allows me to go to sleep at around midnight if I am lucky, and those 4-5 hours a sleep a night just seems to flare up my symptoms.
I am so desperate to have the ability to sleep as little as a I want and not feel sick. Some of my friends get only about 2 hours a sleep on school nights; if I did that, I'd get sick. This isn't fun. :(
I want to go from this :sleeping: :puppydogeyes: to :shocked!: :shock: . I am probably going to sound crazy this week when I ask my rheumatologist "Well, I would like to get minimal sleep a night, like 3 hours, in order to thoroughly do homework and studying, and not get sick with my symptoms over the next couple of days. What can I do so that I can stay up almost all night and not get sick like every one else?" :lol:
*sigh* Time for me to go to :sleeping:
I hope you all are well!! <3
01-05-2009, 10:50 AM
One of the hardest parts of this disease is actually accepting that we can't do things like everyone else. I was diagnosed my senior year of high school and missed so much school they almost didn't let me graduate. I had to get doctors note explaining why I was missing so much school in order to graduate with my friends. I did have to put off college for a while until I had my illness under more control. It's hard to not be "normal" like your friends, but you are right in you have to listen to your body. You are pushing yourself too hard and all you are doing is making yourself sicker in the end. You really need to be getting more sleep, my doctor always told me sleep helps us heal and I really think that this it true.
I was able to go back to college after a few years of having to just take the time and try to get my body under control. I have my AA degree and now work full time in a law office. It hasn't been easy but I have been living in relative peace from this disease for the last few years. I know it may not be what you want to hear, but you need to slow down and focus on taking care of yourself right now. Take care.
01-18-2009, 01:39 AM
Thanks, Kducks, for your reply. I am coming more and more to the realization that what you stated is what I need to become more accepting of. Generally, I tend to believe somebody can have it both ways, so I still am trying to live my life with the schedule I want and balance that with trying to not get sick.
It is promising to hear you got through college and now have a career. =)
When I saw my rheumy recently, he said himself that I need to stop pushing myself so hard. He ended up telling me to go up to 5mg of prednisone and instead of tapering down after a week, stay at that level for about a month straight, then if I am still having difficulties, he is going to try me on some immunosupressants, something that I do not want to be a part of and that he is not too fond of either.
The prednisone is helping, I do notice a difference, yet I still am struggling with school, sleep, getting sick, no time b/c tired and sick, etc.
I really much rather not go on a medication like that b/c my autoimmune labs have still been normal, so there isn't really a full confirmation enough for me to be on something so potent as immunosupressants.
Although my rheumy is wonderful, I am seeing a new rheumy this week just to merely get a second opinion and any other ideas. I plan to ask him to test me for anything at all that is relevant to anything just to see if maybe it's not lupus. It would be a miracle if I had something that was easily treatable, instead of sle. :/ Oh well, can only hope for the best!
I hope you all are doing well! =)
01-19-2009, 10:38 AM
Hey....I've noticed in your posts about your days..you are forgetting the most important rule. Maintain a reserve.....your bankrupting your energy..hugs. No deposits, you're going to bounce...
Juggling it all is difficult, but I suggest you need to find a way to. Lessen your class load...perhaps, lessen your extra curricular ones. If not, flare after flare will happen and some type of normalcy is further away.
Being on steroids, immuno-suppressants are just that, suppressing your immunities leaving you open for illnesses.
I think if you managed your schedule, adjust your classes...refueled your body with sleep, you would feel better and could forgo the steroids, the immunosuppressants.
Insomnia or even less sleep because of an alarm clock to maintain a schedule to me is one in the same that contributes to the pain, the symptoms of Lupus.
Maybe you should be asking your doctor for a a different drug regime. A common combination is at night is Mobic, Flexeril, Lyrica and Lortab they can be a very successful regime...or with other NSAIDS or a partial combo. I am positive the lack of proper sleep is a huge factor in your pain.
That recipe did me wonders, took me out of the cycle of insomnia, whether set by an alarm or by my mind and pain. It worked and I discontinued the dosing...
For me, I find most of my Lupus woes are caused by lack of sleep, stress, lack of movement..exercise. We have to live a life of balance to keep our body, mind, and spirit in harmony.
Please don't leave your tank empty too long...