[sushi]

this only happens to me when i go out shopping. i feel like i have to push myself and if i do it just gets worse. my chest becomes tight and my eyes feel very heavy. i feels very tired and have to hurry up and sit down or else i feel like i want to lay down right in the isle.

it only gets better when i rest. i just would like to know your experience with fatigue because i hardly ever felt it before with lupus. should i call my rhumy on this? can he give me something that would make me feel better?

i know ive been posting alot lately. you have all been there for me and i will never forget how much help i have gotten from this site. thank you

 

[goats]

In thinking about this description I could get carried away and make it very long but I will try, have patience

before I was dx with lupus I had no idea what was happening to me.
I would go to a festival or sort with family. I would get so tired I would find a tree to sleep under, my eyes would just close .

after shopping I would have to sleep in the car before I could drive home. over wise I would be so tired I would forget where I lived or where the gas petal was

laying in bed after work I would be to tired to get up and go to the bathroom and didn't care ( I did get up. the thought of cleaning up the mess was to tiring to think about )
I have slept in the most strange places. bathroom stalls, under trees, on park benches. you name it and I slept there
after being dx and on the right meds for me this has improved quite a bit
but I still have it to the point of being unable to work (other reasons also)

Now I am careful in what I do and when I need to rest and what I say yes to. I have said no to more things then my family and friends like though, eaten toast for a meal. or use throw away dishes, because making a meal leaves no energy to do dishes

as each of as is different in this illness you may not experience all of these things or meds might help you get over this better

just remember to pace yourself and say no, and remember chores can always be done the next day. I dont shop much anymore. just grocery when I have to and then get help with that
best wishes

goats

 

[lazylegs]

Hi Sushi,

Your chest getting tight worries me but I know your doctors are investigating the cause so I will let that go.

When my lupus is out of control the fatigue gets me too. Just keeping my eyes open is a real effort. My entire body just starts going limp like a cooked spaghetti noodle. All I want to do is lay down. Even sitting isn't enough.

There are medications the doctor could prescribe to help with the fatigue. Most doctors are not willing to prescribe them though. They do have their fair share of side effects so may not be worth it in the long run. The more important thing is to get the lupus in control and that will lessen your fatigue.

Hang in there. With all these tests the doctors are doing you are bound to get some answers soon.

Take care,
Lazylegs

 

[*~aurora~*]

I cannot possibly function on less than 9-10 hours of sleep for more than a day or two... and on less than 6-8 hours for one day? I have to be feeling really good! Most days the alarm will go off and if my roommate was up late and I didn't get to sleep until late I'm just like "ARGH" and might start crying trying to get out of bed... some days if I go an extended period of time on little sleep my calf muscles will become paralyzed when I try to walk and my body will just go into a huge weak spell to keep me in bed.

Before I knew what was wrong, I used to really beat myself up for it. The way it works for me is I can half-function for a while but then eventually my body will rebel and just keep me in bed for a day or two! I do get it a lot shopping and walking around even with my walker... for me I have fibromyalgia too so muscle aches are 95% intertwined with fatigue. So I definitely associate fatigue with muscle aches but I'm starting to realize it's not the same for everyone.

Fatigue is different for everyone; I think you know when you're fatigued. ^_^ You just stop functioning as well, need more rest, etc.

 

[Douglas]

Fatigue is what I get from such great exertions as, say, breathing.
Having a shower can feel like a day's work, cutting the lawn is a marathon.
Fatigue is like having 800 pounds strapped to your back, like wearing cement shoes, like having lead eyelids.
Fatigue robs joys, friends, family, work.
Fatigue makes you waste time resting, sleeping, trying to rest, trying to sleep.
Fatigue has only one redeeming quality -
Fatigue is better than pain.
Douglas+

 

[teachmom67]

The spoon theory...

I did not write this. It was written by a woman with lupus. It is the best explaination I've found to try to explain what Lupus fatigue is like.

http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

 

[teachmom67]

Sushi, Plaquenil did help my fatigue some although it took a number of months to really make much of a difference.

Amy

 

[keebler]

(((Sushi)))

Have you thought that maybe the lighting in the stores are bothering you?

I was at a mall and I felt so awful. I was tired and wanted to go home. It was an overwhelming feeling of fatigue. I think the lighting had bothered me.

Take care,
Lyn

 

[sushi]

thank you so very much, all makes sence. since i have never experienced fatigue until just a couple of months ago. i never knew what it felt like.

to me it feels like the more you push yourself the worst your body reacts.
but i dont feel like going to sleep i just feel like laying down to rest thats when it gets better for me.

Douglas i like the way you put things, very selfexplanitory. thanks

teachmom67 i also take plaquenil but i dont think its helping me with the fatigue lately. unless something else is going on that the doctors cant figure out. and thank for the link but i cant really go on other sites. (this is my husbands work computer )

aurora, (thats my daughters middle name) i also beat myself for that i tell my husband that i cant do anything anymore, with tears in my eyes. its so hard not to feel "normal". i look at other people and think to myself i wish i had that energy (that i used to have)

lazylegs, i hope i do get some answers soon this is all so frustrating all they do is poke me for blood. and never get anywhere. im beginning not to trust them anymore.


goats, i get pleanty of rest i make sure of that. i have no problem saying no anymore if i have to say it i just come right out with it. just giving my dogs a bath is hard these days. can this be because my lupus is not under control what do i tell the doctor. (doc, i dont think my disease is under control can you please give me something for it? what kind of meds do they have for this.
or should i just weigh it out because of the side effects.

 

[*~aurora~*]

I make sure I get my 9-10 hours sleep a night when possible. Ginseng and acetyl L-carnitine both work wonders for me, especially together. ymmv though!

 

[Joandublin]

Hi Sushi

There was a thread started by me more than a year ago on this subject and there are lots of contributions. Some of them might help to explain what the fatigue means to different people. Here's a direct link to it

http://www.thelupussite.com/forum/showthread.php?t=67870

I hope it helps. Fatigue is one of the worse things to try and deal with in my opinion. Nothing really seems to help. No matter how much sleep I get it doesnt change it. It just wears itself off now and again and there is no rhyme or reason as to when it comes back.

Hugs
Joan:rose:

 

[Clare.T]

Dear Lydia
To me it means wanting to lie down on the spot and fall into oblivion. Since this is rarely practical it meant forcing myself to carry on in a zombie like state


Fatigue is the lupus symptom most complained about it but lupus isn't the only cause. Thyroid, diabetes and very commonly anemi,a as well as depression and extreme stress after great demands have been made on our systems. It is amazing how often B12 or iron deficiency goes unnoticed. Anemia caused by disease activity is also common
Rest is essential.

Please do not start taking supplements without checking them out for yourself or with the help of your friends here and your doctors if they know anything about it. Or get the help of a fully qualified medical doctor who is also trained and experienced in the use of herbal medicines
In my view, if they are effective medically they can also have side effects, contraindications and interactions like pharmaceuticals. Quality and medicinal content is variable depending on the source. With these very popular plant drugs the supply is often limited and ineffective substitutes are sometimes used.

From the AAFP here are potential benefits and problems that might be associated with Panax Ginseng. There are two different sorts - the other is siberian but I don't know what the difference is

Efficacy:
Psychologic functioning: effective; conflicting evidence Physical performance: ineffective Immune system: effective Diabetes: modest effect;evidence limited

Adverse effects: Nausea, diarrhea, euphoria,insomnia, headaches, hypertension, hypotension, mastalgia, vaginal bleeding,blood pressure abnormalities

Interactions |:Caution advised about concomitant use with phenelzine (Nardil), warfarin (Coumadin), oral hypoglycemics, insulin, or caffeine, and about use in patients with hypertension or bleeding


Dosage :Standardized extract: 200mg per day Dry root (tea form or chewed): 0.5 to 2 g per day
Cost: $15 to $20 for a one-month supply at a dosage of 200 mg per day
Bottom line: A safe, well-tolerated herbal medicine that may be used for a variety of medical conditions.

I wonder what effective for the immune system means.



For even more detailed information about ginseng see

http://www.all4naturalhealth.com/ginseng-side-effects.html

Unfortunately this is a commercial site which I am not supposed to link to, but it seems to have full and honest information. I have no problem with its general health recommendations such as the importance of a healthy diet but there are some therapies and naturals mentioned which are not recommended for lupus patients.

All the best Sushi I hope you get some answers soon and have less to worry about. I can't recall exactly how old you are but remember that the middle years of a woman's life are often extremely difficult even in the best of circumstances.

Many hugs
Clare

 

[LolaLola]

Sushi,
The fatigue is everything that the others have said. I dislike it but have had to learn to cut corners, downsize etc. Dr. D'Cruz said to me that Lupus is extremely debilitating, he is not a man to say things just to shut us up-so if he acknowledges it, it is a fact.

I hope this symptom vanishes for you. I don't often get a good spell (maybe 2 days a year) but when I do I am always amazed to think that other people feel that good or better all the time and still whine when they get a sniffle!

I think if I were fit again I would be unbearable-no one could keep up.

There is no pattern to this illness so you have every reason to think that it may improve.
x Lola

 

[sushi]

joandublin, thank you for the thread i read the whole thing. i like the way you described fatigue. for me it sort of feels like that but not as bad maybe less than having anesticia. but then again everbodys fatigue is diffrent.
i went to get an item exchange in the department store. and thats when it started and i wasnt even there that long.

then i cried to my husband in the car. because this is really new to me despite the fact that ive had lupus for 20 years. i had no choice but to push myself to go food shopping. my husband tries to help but hes not that good at what to get. (always gets the opposite and doesnt look at prices:lol

clare, i will definetly take your advise. and i thought about my age contributing to the way im feeling. im starting to think that maybe im premenouposal. i just hit 40 last week. :hehe:

Lolalola, for me this disease started like if it wasnt even there, for alot of years i was very lucky not to get any symptoms. i guess i ran out of luck
i know that for most of us it first hits like a ton of bricks but for me it looks like the opposite. i heard in the news that they found a cure for the common cold (its not going to be out for at least 10 years) now they need to find a cure for fatigue. and of course for these horrible autoimmune diseases.

 

[mary520]

I guess the best way I can describe my fatigue is feeling like all the energy just drains from me suddenly. I am always tired, but can usually pace myself to get the things done that I have to, but when the fatigue hits I can barely function at all and feel like I've been drugged and feel like my head and extremities weigh a hundred lbs. each. It still scares me really bad when it happens because it's such a terrible, helpless, feeling.

I used to get really frustrated at family and friends who just don't seem to understand that I have no control over this. They seem to think that I should be able to rest a few minutes and pull my self up and carry on. I have learned to not let it get me down when they don't get it...I don't understand it myself and I live with it. It is the thing that effects me the most with lupus, so I consider myself lucky, even though it robs me of so much, I remind myself that it could be much, much worse.

Mary

 

[lazylegs]

Hi Sushi,

My husband was always getting the wrong thing or I couldn't remember all the things to buy at the market so I made up lists for all the stores on the computer. Each store has its own list. I just put an X by the items I want prior to sending him shopping. Each item has the brand name, size, regular price, etc listed. Now if he just wouldn't impulse buy it would be perfect :lol:

Take care,
Lazylegs

 

[Salopsally]

Hi Sushi,
I feel exactly the same expecially when shopping. I used to love shopping for hours on end but nowadays its such a chore. I avoid it at all cost but of course have to do it. I feel like you like I just could lie down in the aisle. I find the big supermarkets just too big to get round without feeling like Im wading through treacle and just cant go on.
Most times now I find myself sticking to small shops so I can just nip in and nip out.
Going round the town centre now seems a good idea until Ive done about 20 mins then I get that feeling and have to find a seat to sit down. I usually have a nice chat with the old ladies sitting having a rest too. I leave my daughter to carry on shopping and pick me up on her way out.
If I go on my own I always end up going home before Ive got half what I need but it just gets too much then I have to come home and have a lie down before I can struggle in with the bags and have another lie down
Im not pleased you are suffering this too but am pleased you posted about it. I feel such a whimp... and of course I dont look ill... but sometimes my stamina is zilch.
I was hanging on my trolley yesterday in Tescos and the lady said can I help you pack.. I usually say im ok but I thought Yes thankyou because Im going to fall into this trolley and go to sleep soon. When I get this real fatigue feeling I sort of feel breathless but there isnt really anything wrong with my chest.
Ive been on a couple of short courses of Prednisilone since Christmas and the first few days my energy really improves but as soon as I taper back down the old fatigue comes back.
Hope you manage to live with it like Im trying to do too. Ive been on the Plaquinnel about a month so im hoping for some improvement with the fatigue soon.
Good luck and best wishes,
Sal xx

 

[sushi]

lazylegs, my husband is usually good with everything taking care of me, washing the dishes after dinner, cleaning the house, doing the laundry, even doing to some extent the cooking but i usually do that, he only knows how to make certain things. but i truly appreciate him very much hes my life saver. i did the same thing you did i pointed out to him exactly what i wanted it was ice cream the had on sale that day.

when he came back he brought me something that looked exactly like the ice cream i wanted and it was so expensive. so i dont trust him there anymore.:lol:

salopsally, i have been wanting to ask my doctor for a short course of steroids to see if it helps me with some of my symptoms. i just changed to a new rhuemy today because the one that i had doesnt accepted my health insurance. so when i go see her on march 17 i will discuss my options with her. i hope that the plaquenil kicks in soon and you feel better.

 

[doodlebee]

Interesting, I just came here today to start this same topic! The fatigue has been terrible, and I've been trying to come up with a way to accurately describe it to my rheumatologist. It is hard for people who haven't felt this kind of fatigue to comprehend. People tend to think, "Well, I'm tired, too...everybody's tired." But it's not an ordinary kind of tired...even the word "exhaustion" doesn't seem adequate.

One of the things that wears me out the most is taking a shower, and it's so discouraging because showering is an everyday necessity. I wish I could shower at night and then go to bed, but my hair gets oily overnight and really needs to be washed every morning. So every day I'm exhausted before I ever even leave the house. Thankfully, I'm on disability; otherwise, I don't know how I would get by every day.

I just wish there were some effective ways of treating the fatigue that comes with lupus. It really interferes with quality of life! I want to do so many things! I try hard not to whine about it, which probably makes it even harder for others to realize how bad it is. I don't look sick at all, so people must think I'm lazy or unwilling to do things.

Anyway...I don't need to get off dwelling on all that. I'm just trying to find some good ways of describing things to the doctor so when I go back in March, I'll be prepared.

 

[KarolH]

I love the link that Joan provided and better yet the message it conveys.

It is brilliant and I could not have said it better myself.

I will use this now moving forward when someone asks about fatigue.:wink2: