I wonder is there anyone out ther that seem to experience continues fog and on going fatigue no matter what meds you are taking? My pain had gotten tolerable but the fog, fatigue and headaches continue to linger? Any suggestions or meds that work for you? Help! because I am suppose to start work in August teaching First Graders!!!!
Hi Purplefav,
Sorry to hear what your going through and fog and fatigue is a daily issue concerning myself and alot of other member's but i've noticed it hits me more when i'm in a flare and if you in one at the moment that may be making it stronger....headache issues is one of Lupus's main affect on us and it's always best to rest when your like this.
I cn't really suggest anything except taking a painkiller for the headaches, i usually take a valium to carm the head and also to sleep and reharding the foggyness and fatigue it's pure medication which we're given that helps.
Other member's may have better suggestions but my heart goes out to you where these ailments are concerned.
Love Terri xxx
HI Purplefav, I am constantly tired no matter what I do…Pain is bearable I guess just because I’ve dealt with it for so long. I am chronically tired do have awful headaches, but I just deal, I nap often on the weekends. My dr. gave me B12 injections to do once a week I self inject. Doesn’t do a lot of help but I am trying it. My dr. has me on bloodpressure meds for the headaches and that seems to have helped it a bit. I used to take Maxalt for Migraines but that stopped working. I hope someone else out there can help you out…good luck with the teaching you will have your hands full. Just try and get plenty of rest the night prior.
Thanks Terry and turbos mom for your responses. I know these are syptoms we all battle, I just began to become very concerned because this is the longest times it's been consistant since the end of March. I too am just dealing with it and nap often everyday since I have been off work since March.
I find that if I do some yoga at night it helps alleviate pain (helps also relax me) I’ve gotten worse as far as becoming more fatigued in the past few years. I am 44 so maybe that has something to do with it lol. Anyway I think that is one of the most difficult things to deal with is the fatigue. Trying to explain to people why I am so tired all the time becomes a pain in the you know what. Anyway I hope you can figure something out. Although I do find if I stay active and busy at work I can get through the day much easier (it’s when I have down time at work that makes it harder and that’s when I want to sleep) So maybe chasing around a bunch of 1st graders will be good 
Hi Purplefav,
If it's been consistant since the end of march it maybe that your in a chronic flare with these symptoms as chronic flares go up to 6wks and longer and that's when Lupus is really at an active stage or if you do have another flare going on, these symptoms we all put up with maybe hitting you harder because of the flare because your talking 8-9 weeks if so.
Purplefav after writing about a chronic flare i've just been really looking for what could help otherwise besides painkillers/meds and i was correct your in a flare causing it more often and when it's like this you need to see your GP or specialist....i had one chronic flare after xmas it invloved my skin/pain to my organs/the joint pain besides pains shooting around mt body and lodging in my elbow before moving on elsewhere...it totally drove me made and went into nearly 7wks before it eased up.
i wonder about this too...i don't have headaches like I used to---but the fog is still there, and the fatigue. I think accepting that I feel what I feel helps more than anything. If I am exhausted I don't try to fake having energy and if I feel energetic...I usually over do it and feel exhausted but happy the Next day.
We are all different --. If you can still work that is awesome, but if it begins to be too much...? My son used to admonish me for pushing through the worst pain. He said, "Mom, e=when you feel this pain you are not doing your body any good by pushing ahead...you are making the inflammation worse which causes damage.
Many people do not agree and feel that no pain is no gain...I am all about working hard and moving forward, but not if it means doing more harm than good. Now I (work very hard lol) to be moderate...it aint easy to be so driven i guess
Congratulations on are in order on you starting work in August I am on a leave of absence and with the meds I am taking I hope I can go back in August, I dont know if the meds I am taking will help you , I half to make sure I can take certain meds, I use to take Goody`s but now for my headaches I take tylenols ,I am on predisone sopposely for a short period of time and it helps with aches and musle pains.Now with the first graders you may want to invest in some stocks for tylenol.
Hi Purplefav-
Can I ask-is your profile name purplefav because you love purple? I go by Purplexed often, because I'm kind of a purple freak.
Anyhow, I've been struggling with terrible, disabling fatigue for over 8 months now. I've also had bad headaches that last for days, and I guess I'm in a fog from being tired. I don't retain info that well. But I had internal issues that probably started a really bad flare, though I didn't know it at the time. Now that I've addressed the issues, and am finally being treated with Plaquenil, taking naps whenever I can, I'm finally having a couple days out of the week where I feel almost normal. But if I don't get at least 8 hours of sleep, I go out with friends in the evening, or overwork myself, I go right back to the fatigue and it takes days to recover. I also have Fibromyalgia.
For headaches, the best medicine I have taken is Relpax-I believe it is a Triptan and prescribed for migraines. I also sleep on an ice pack (the kind you put in a velcro sleeve) when they are bad.
I've been wondering if I'll ever be able to work again, but for now will be happy to just take care of my family as I was doing before.
I wish you the best in your work-stay positive!!
Nicole
My Rheum. said that fatigue is one of the things that medicine may or may not help. Plaquenil has helped everything but the fog and fatigue with me.
Best of luck!
Thanks for al your responses, Janice I am much like you I push myself, and when I have a day that I feel almost normal I get out and try to do just about everything outdoors because I am always in the house! I do pay for it the next day, but I got out and what I wanted with tolerable pain.
Yes Lia I will need my 800mg Iburophen. Tylenol does noting for me. I am excited, but afraid to go back to work. I need to be able to be there with no more than 3 day out in a year. I can say at least I tired. This school year I had 114 hours absences.
Yes Nicole purple is my favorite color. I too have Fibromyalgia, many people have told me I need to put my health first, I am trying to learn how. I will stay positive!
Hi dragonfly,
I actually don't think there is a cure for foggyness and fatigue it's something we must live with concerning Lupus but i do agree about the plaquenil it's an "Ace" medication and i can't fault it.
dragonfly77 said:
My Rheum. said that fatigue is one of the things that medicine may or may not help. Plaquenil has helped everything but the fog and fatigue with me.
Best of luck!
I agree Tez and Dragonfly, I am on Plaquenil and it has helped. I suppose I am going to have to work with this fatigue, foggyness and headaches. Frequent naps does help, I wish I could take the naps at school LoL!!!!
Hello Purplefav,
It's a shame how it's affecting you but it's something we have to live with but it does come stronger with a flare arising so beware...as you know now and plaquenil is brill it just stopped workingon me though but it does make you lose weight.
Regarding school go in with some strict rules mate and lay the law down....tell them so you can keep going you need a bed brought in 2hrs morning and afternoon for kipping :).....just having the crack mate because if we dow we'll end up crying with the amount we put up with.
All my love Terri xxxx
Purplefav said:
I agree Tez and Dragonfly, I am on Plaquenil and it has helped. I suppose I am going to have to work with this fatigue, foggyness and headaches. Frequent naps does help, I wish I could take the naps at school LoL!!!!
Thanks Tez I neede that laugh!! I have been on plaquenil for almost a year now. How long have you been taking it? I am taking 400mg a day. I have a gene deficency which can cause problems when taking plaquenil( G6DP). so far so good. I would never allow them to increase my dosage any further.
Glad i made you laugh mate....i was on plaquenil for a year & half then it stopped working, i was taking 200mg daily but the rheumo would'nt up it because of other meds besides my SLE but the correct amount is 200mg one day and 300mg the other but doing it on alternative days.,,,they have to watch with me because my kidneys play up bad and i've also got a tumour on my liver collecting blood which they won't mess with yet.
400mg a day is high and that's the highest they can go with Plaquenil but i hope it does'nt affect you otherwise, alot of meds for lupus only stretch 1-2yrs before your moved on to the next and i'm on Dapsone now a rarely used drug and it's a stronger chemo one but there's risks with your organs so at the moment i'm having monthly bloods done.
Purplefav said:
Thanks Tez I neede that laugh!! I have been on plaquenil for almost a year now. How long have you been taking it? I am taking 400mg a day. I have a gene deficency which can cause problems when taking plaquenil( G6DP). so far so good. I would never allow them to increase my dosage any further.