I am about to quit smoking and I am supposed to cut back on my caffeine intake. These 2 things are what keep my heart beating and keep me awake during the day (sometimes). What do you you for fatigue and exhastion?
I am sorry you have to quit smoking because i do know it is not an easy thing to do.I do not smoke but i do drink my pop cola whatever you want to call it :lol:.I do not drink all that much but my rheume says i really should try to get rid of it.I am not sure if you work or not but i do not work so i can take naps if i need to.I am not sure what to tell you to do but i sure hope you can quit smoking(((hugs))).I sure hope someone can help you with this.
Glad to hear you plan on quitting smoking soon! That's wonderful... I would recommend a slow reduction in caffeine intake over the course of a few weeks. This will help prevent the withdrawal headache at least.
As for fatigue - I just rest whenever I can. I also try to eat 4 small meals spread out throughout the day filled with better for you food (lean protein, some fat, high fiber, & very little sugar) to keep energy up higher & prevent "crashes".
There are some here that will take a medication (Provigil) to help their energy, but I'm not sure how effective it is or if it's a good idea (because with lupus, you probably do NEED to rest when your body is telling you to rest). It's very expensive, but it's something you could ask your doctor about.
Congratulations on taking such an important step toward better health. I know it won't be easy, but you can count on us to help you through it. Post about your progress/difficulities, triumphs, etc. if you'd like and we can all do this together. I'm sitting here with a smile on my face because I'm so pleased to hear when anyone stops smoking. Good for you!!!
As for fatigue, I rest whenever I can but if I'm too busy to stop, a cup of coffee gives me some temporary energy. I just make it a point not to overdo it.
I just get so frusterated because I get so sleepy that I feel like I am going to pass out and I can honestly fall asleep almost at any moment of the day. I go through periods where I feel like I am sedated and cannot stay awake. I just started the plaquinil and the prednisone. After the holiday weekend, I am so exhasted, I wanted to call into work for a day of rest after the holiday. How do you express to your family members that you are not lazy, you are exhasted? My husband keeps getting me to "help" him with projects at night when all I want to do is sleep. He also gets frusterated that the house is not always clean and I am too "lazy" to clean up after dinner (that is after I have worked all day, come hom and make dinner). I know that he is tired too, but what I feel is more than tired. It is barely functional. Well his understanding get better over time?
It is difficult for others to understand the difference between tired and fatigue. Unless you have felt the meltdown you wouldn't know. You are doing the right thing to rest instead of continuing on. There is no way you are being lazy, you are following part of treatment plan to combat the disease. Learning to say no is difficult, but you must when you feel the need. In time your husband will see that you make the effort when you can.
I was fortunate to have my first rheumy explain the facts about Lupus to my husband. He stressed the need for rest. That doesn't mean to say my husband doesn't get frustrated by it at times, but he does understand. Maybe your husband could go to one of your appointments and find out more about the disease.
Im suffering the fatigue too but Im lucky in one way as I dont have a partner to worry about.
Dont know if its any help but I gave up smoking last year with Champix it really makes it much easier. Its not a nicotine replacement it alters the receptors in your brain which tell you you need a cigarette.
I only smoked for 5 months after giving up 26 years ago but in those 5 months I was totally hooked and couldnt control the cravings. Champix worked for me and a friend who gave up at the same time.
Wonder if you could have decaffienated coffee. It doesnt give you the high of normal coffee but it tastes ok and might help.
Wishing you all the best with it.
Thank you for all of your advice. I tried to talk to my husband last night. I told him that I hoped he did not think I was being lazy when I am too tired to clean or I just have to go to bed. He said he does think that I am lazy sometimes but that he knows that he can be lazy too. It is a start. I guess I just need to have him clarify his definition of lazy. I do not think it is lazy when you are completely and utterly exhasted and cannot push any longer. I think you are lazy when you have no reason to be tired and you choose not to do things. I think that he is #1 in denial that I have Lupus, #2 does not understand I am not choosing to fall asleep when I sit down, #3 worried because he knows how bad Lupus can get and his way of dealing is by pushing me harder. My family is a family of really sick and older people always in pain, so being tired and not feeling well is not something you complain about. I am not using it as an excuse to not do things. Maybe if I get him some literature about Lupus, he will see that it is not something I can help. I know he is tired too, but he is not the one making dinner and cleaning up every night. I think when the treatment begins to kick in I will begin to feel better, but right now it is hard and I am exhasted from getting up in the morning. I also think it is difficult for him because I go through times where I am not tired and i have normal energy levels and then BAM one day I wake up and cannot get up out of bed and struggle to stay awake during the day. Thanks for letting me vent.
Absolutely, give him literature to read about lupus. After he's done reading it, keep it around and take it out as a gentle reminder if he starts to become insensitive again. Many of us here have had to deal with husbands who are less than understanding at times. It must be hard for them too, but not nearly as hard as it is for the person struggling with this day and night. You are to be commended for doing all you do in a day. I do expect that you'll feel better once the proper medication for you kicks in and it will be of great help. You'll still probably feel tired on occasion, but it won't be the bone-deep, almost-daily fatigue that you experience now. Hang in there. It will get better.
I quit smokin the day after my diagnoses 2months ago ... i hav to say it does help alot!!!!! and if possible sleep whenever u can plenty of rest helps to . some days i find myself sleepin every 2 or 3 hours. on those days i find it best not to fight the sleep
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