Fatigue

[Libby]

Hi everyone
I've posted elsewhere on the site but wondering if folk can help me out with the symptom of fatigue. I haven't been diagnosed yet - i have the label ME/CFS at the moment - but I have positive bloods and may have been misdiagnosed.

Can anyone tell me why fatigue isn't listed as one of the diagnosing criteria as everything I read on this site says its part of lupus? Do doctors take fatigue into account when diagnosing?

With an ME label, fatigue is my major symptom but its sounds like it could also be Lupus. I can't do anything for more than 1-2 hours at a time without being totally wiped out, I rest all afternoon, sleep (badly) for 10-11 hours a night etc etc. Can anyone adequately describe the fatigue in Lupus as I guess I'm trying to differentiate between Lupus-type fatigue and ME-type fatigue? Do folk feel 'ill' when they 'overdo it' or is it a 'normal', if extreme, kind of tiredness? I feel like nothing you can describe to any healthy person most of the time and when i misjudge activity then i feel ill enough to have to go to bed completely.

I?ve learnt to try to pace myself with the ?ME? but if its Lupus can I look forward to any additional 'relief' from fatigue from any of the drugs?

Thanks for all being so sane and helpful!

[Fruitloop]

Hi Libby
Regarding the fatigue, I describe the worst lupus fatigue I get to people as severe jet lag. But then, that is an experience on it's own. The fatigue is one of my main complains and used to send me to napping regularly. However, since starting on Plaquenil, it has definitely improved. I still have to try to pace myself (we never learn do we?). If I do to much in a day, which is a tendency on a good day, then it can take a few days to recover. But generally, I don't need to nap as much. I still can't go long stints at anything but I do take frequent breaks and try to vary my tasks.
Good luck and God bless
Keeping you in my thoughts
Fruitloop http://www.thelupussite.com/public_html/iB_html/non-cgi/emoticons/smile.gif

[careyann]

Hi, Libby! Sorry to hear you're feeling so exhausted. Fatigue was the first major symptom which took me to the doctor & has been my most "faithful companion" ever since! LOL I tell people it feels like the worst flu fatigue you've ever had. Where you can't do anything! Just lifting your head off the pillow somedays is like trying to lift a ton!

I pace myself, rest, rest & then rest some more! I've found if I nap in the day though I have a harder time trying to sleep during the night. So I kinda close my eyes (just for a few minutes) when I just can't keep them open any longer & try to force myself to read, watch TV, get on the computer, or just anything till my body pushes through the "lagtime" & then it seems like I get a little bit of a "second wind".

Will keep you in my thoughts & prayers that you get the right diagnosis soon & then some relief too!

Hugs.

[vt65]

Hi Libby,
Fatigue is also one of my major symptoms also. I also get muscle fatigue which feels like a tooth ache in my muscles (legs mostly). There are days when I just cannot seem to get going but I still push to get things done and I work full time also and I am on my feet all day and have absolutely no energy left when I get home. I seem to feel the worst around 1-3pm. My prayers are with you. Love Vic

[AZ Lupie]

FATIGUE!!!!! should be the Lupie Moto...LOL, I do agree that a nap is good medicine, even if it is just a few winks, and yes 1-3 is the worst time of day, all your get up and go....went LOL Take care, Denise ;-)

[cookie]

Hi Libby,
Yes, the fatigue is terrible. Since I'm only recently diagnosed, I really try to fight it. I work more than a full time and when I come home, I try to fix a healthy diner for me and my fiancee. But it is hard and afther dinner, I fall in a seat that I won't come out of the whole evening. But, I found someone to come clean our place for us, so that really helps. Now my weekends are for resting and sleeping. During the week, I try to hold on and keep going. I hope you will be properly diagnosed soon. Good luck to you.
Stien

[Libby]

Thanks everyone.. I really hand it out to those of you who struggle to work - wow! Anyway I have a private rheumy appontment in 2 weeks so we'll see what he reckons.
What does LOL stand for by the way?
Libby

[Fruitloop]

Hi Libby

LOL is laugh out loud.

Cheerio
Fruitloop http://www.thelupussite.com/public_html/iB_html/non-cgi/emoticons/smile.gif

[harryson]

I read that our fatique is best described as the tiredness that is felt in the evening. We have that feeling every morning and then we have to live thru the day. Since taking Celebrex the morning stiffness is reduced so the AM pain is reduced. At least until I get out of bed.

[Marilyn]

Ah yes, FATIGUE, we lupies all know that word all too well! First, please tell me what ME means. I just can't think, though I know what CFS is.

I have lupus and the fatigue is a major problem. I cannot work and if I do more than I big thing a day, then I suffer. Right now I am in a flare up that includes terrible fatigue and nothing helps but time and rest.

I don't know if any of us has helped you but know that you are not alone. Let us know the outcome of you rheumy appt. We care!

Marilyn

[sawilliamsrdn]

Hi Libby!
When you go for your appointment ask them to test you for the antiphospholipid syndrome (Hughes Syndrome) because research is showing that a lot of people diagnosed with ME/CFS /MS have this.
If you do have Hughes Syndrome, the treatment can, quite literally, change your life!
I think I may have sent a post to you before about this - sorry if I am repeating what you may already know!
Good luck with the private consultation. Remember to take a list of ALL your symptoms and ALL your questions!

[PLucy49]

My rheumatologist suggested that I get Ritalin to help with my energy level. I do try to get my 8 hours sleep, but the Ritalin gives me a little boost and helps me to focus. Does anyone else take this?

PLucy49

[LupusCat50]

Libby,

I describe the fatigue like this: I feel like I'm up to my neck in a fast flowing river and I'm trying to walk upstream against the current. It also sometimes feels like I have a 200 lb dead weight pressing down upon me so that my head, arms, legs and feet feel like lead weights.

This overwhelming fatigue comes over me when I've done too much. Surprise! It can be as simple as going shopping and getting in and out of my car one too many times to simply trying to vacuum my car. In the past 2 years, I've had to accept that I simply cannot do what I want to do. I've had to hire someone to come in weekly to clean my house. I do the laundry, cook and use the dishwasher to clean the kitchen. Sometimes, I don't even cook--we eat out, my husband cooks or we eat sandwiches and soup.

It's important for you to accept that there will be fatigue, learn what your limitations are and respect what your body is capable of doing and don't push it or it will get even LOL:lol: . Hang in there and laugh when you can, it keeps you from losing your mind.:rotfl: