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Discussion Starter · #1 ·
This is for anyone who has already been diagnosed with Lupus.

How severe is your fatigue and are you on disability?

Can you even vacuum? If you vacuum, are you set back on exhaustion about a week?

CindyLou
 

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Hi, I've was diagnosed in 2003. When I was first diagnosed, my fatigue was so intense I couldn't stay out of bed. I'd be up and doing normal things and then it would hit -- such overwhelming fatigue that I'd stumble to something horizontal and be asleep by the time my head was on the pillow. I'd sleep for hours, wake up and eat and then need another sleep.

Medication helps. Plaquenil helped. Prednisone was the quickest relief. But I think the most important thing is learning to manage your energy. It's hard. I still have problems with it. And right now, my fatigue has reemerged and I'm going back on prednisone after being off for almost a year.

Housework is bottom priority for me. There are days when I can do some of it. There are days when I name the dust bunnies because you'd never dare sweep away something with a name. Mostly, we're very relaxed about such things now and the vacum is usually run by my husband or one of my sons, if at all.

I understand how overwhelming this must seem. Is your doctor giving you medications to control the disease (plaquenil) and put you on track to being able to function again? You really should see a rheumatologist.

Either way, don't feel guilty about what you can't do. It's not worth the anxiety. Life is different now. It's all about taking care of yourself.

Hugs,
Sunny
 

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:wall: I certainly understand how you feel Cindy Lou! Any exertion (ie: vcumming, requires a break for me). It's very frustrating for me, to not be able to keep up the housework like I used to, but starting to accept it! Cathy
 

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running the vaccuum makes my legs arms and back hurt, by the time I am done I have a fever that hangs around until I have rested for a couple of hours. I usually go lay down for a while before doing anything else:( . No dissability.
 

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Hi there, no I can not vacume, yes, it would set me back almost a week.
I am on disability. My fatigue is very severe. I get up in the morning about 9:00am, and as soon as I make it to the living room where hubby is reading the paper cause he gets up at 5:00am, I say Good Morning and I just want to turn around and go back to bed. I do nap in the afternoon, and I just barely stay up till 10:00pm-no later. I feel like a walking zombie.
 

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I don't vacuum anymore either. It really is exhausting these days, although I do have some brief time periods where I am well enough to do such a thing. From many, lupus has flares and remissions; but for many others it is a constant thing with only slight improvements here and there.

We have hired a cleaning service because I can't clean without major negative consequences to it, and my hubby wants his weekends to be with our daughter/me instead of cleaning & mowing the yard, etc.

I am on disability - due to lupus.
 

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Discussion Starter · #8 ·
Confused1

How does Plaqenil or Prednisone help the fatigue?

I am seeing a rheumatologist and he did talk tell me they like to start people on meds before the illness gets worse. But I didn't really understand much and I didn't say anything because I didn't have a diagnosis of Lupus. The ANA didn't show up till after I saw him--where the numbers went up.

He also said I could go to a dermatologist about the rash but I told him since it didn't itch or burn there was no sense because it doesn't bother me. I've had all this since 1998 so I figured you just live with all the symptoms.

CindyLou
 

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Postie;507980 said:
How does Plaqenil or Prednisone help the fatigue?

I am seeing a rheumatologist and he did talk tell me they like to start people on meds before the illness gets worse. But I didn't really understand much and I didn't say anything because I didn't have a diagnosis of Lupus. The ANA didn't show up till after I saw him--where the numbers went up.

He also said I could go to a dermatologist about the rash but I told him since it didn't itch or burn there was no sense because it doesn't bother me. I've had all this since 1998 so I figured you just live with all the symptoms.

CindyLou
DO NOT just "live with it". Basic fatigue is caused by inflamation. Steroids decrease inflamation thereby helping with the fatigue. The 'steroid sparing' drugs help with the inflamation without being steroids (plaquinel, Imuran, Cellcept). When I first went to see the doctor I could barely drag myself into work in the morning. With drugs I've continued to work for 4 years. I may go on disability soon but definitely I'm much better off symptom wise by taking the medication. If your doctor isn't a Rheumy and/or doesn't understand Lupus, try another one.
 

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Hi there,

Nope! I definitely can't vacuum, no way! My muscles are far too weak for that (maybe more a myositis thing but still...) so, we have a cleaning lady who does the worst and when she can't come hubby does it or the boys if they're here that week-end.

I can't do anything in the house at all except load the washing machine. I usually use the tumble dryer as we don't have anywhere to hang washing and even folding clothes can be difficult.

Plaquenil is a disease modifying med which over time (it is slow to start working) will help reduce the frequency and severity of flares. Pacing yourself does, however, still remain very important. Prednsilone can help in many areas including pain and fatigue and is often used to help you until other meds have a chance to work or docs use it to "test" and see if it improves symptoms. Doctors will try to avoid it as much as they can and reduce or eliminate it quickly as it does have long term side effects.

Even if you have no itching seeing a dermy can be very useful as he may, for example, do a skin biopsy which can sometimes clinch diagnosis for those with negative bloods. Make sure you take photos of any rashes you have as they will of course disappear the day you go to the doc (Murphy's law :lol:).

Katharine
 

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First let me clarify that I have NOT been dx with Lupus yet, however, I was dx with Multiple Sclerosis in 2005 and for the fatigue I was prescribed Provigil at 200 mg a day.

It really helps with fatigue.;) ;) ;)
 

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Discussion Starter · #13 ·
KarolH

I tried Provigil and it worked for the first couple days. I had do much energy I was doing everything. Then by the 4th day it didn't work at all and I had severe fatigue and then started getting depression.

They say Provigil is used alot for MS patients as it helps them.

CindyLou
 

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No vacuuming for me. It aggravates the Transverse Myelitis. Hubby has taken over this chore.

Yes I am on disability now, however I was able to work for many years prior.

Take care,
Lazylegs
 

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I am sure there are people out there who wouldnt believe me....but I honestly dont even know where my vacuum cleaner is! I think it might be in the press under the stairs but I havent seen it for ages! I must go look for it. I wonder was it stolen?

I have wooden floors all over the house. I got them installed because I never wanted to use my vacuum cleaner again!

To be serious about your question.. I just find that vacuuming wipes me out but I dont think it would wipe me out for a week :worried:

Luv n stuff
Joan:rose:
 

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Joandublin;508333 said:
I am sure there are people out there who wouldnt believe me....but I honestly dont even know where my vacuum cleaner is! I think it might be in the press under the stairs but I havent seen it for ages! I must go look for it. I wonder was it stolen?

I have wooden floors all over the house. I got them installed because I never wanted to use my vacuum cleaner again!

To be serious about your question.. I just find that vacuuming wipes me out but I dont think it would wipe me out for a week :worried:

Luv n stuff
Joan:rose:
You have got to get the Roomba for floors. It works great and you can sit on your butt and watch it clean your floors for you.:rotfl: :rotfl: :rotfl:
 

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I had never even heard of Roomba's before. They look cool but they're small so where does all the dirt (and in my case dog hair) go? Don't they need emptying every five minutes?

Katharine
 

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If the fatigue is being caused by chronic disease it will usually be relieved by effective treatment of the disease plus life style adaptations to the demands of the disease. By relying on a drug to keep you going you could be ignoring the body's need for rest and making it harder to fight the disease.
Of course sometimes it simply isn't possible to get as much rest as needed but most people can ease up in some respects. Many people these days have unrealistic expectations of themselves even when they are healthy and I have noticed that sometimes sick people do even more than usual as if this somehow means not " giving in" to it.

Fatigue can be caused by thyroid, anemias, diabetes and fibro plus other physical causes so any possible causes should be investigated

Clare
 

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I know i am always different (and honestly I am not trying to be !) but yes I can vacumme. But, I only to a tiny bit, we have a small house so it doesn't take long. I only do the open plan living kitchen area, the hallway and the bathroom. That's it. Everyone else is responsible for their bedrooms.

Vacumming takes me about 5 minutes, literally, and I bought a new vacumme recently - very light weight, very sucky motor as they say on the ads. But, although I get fatigued, I do not have fibro or myositis.

Actually it is so quick I can get it done in the ads while watching a tv programme - I just don't have a terribly big house (open plan area, hallway, tiny laundry, small bathroom and three bedrooms). And I only vaccume the communal bits. The kids help with the housework too.

cheers

raglet
 

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Count me in on the yes vote. I just wait until I'm having a reasonable day and I get it done (sometimes it's left for a couple of weeks ;) )

I often have a rest between the hall and the loungeroom which are the only carpeted areas in the house.

I too just got a new vacuum which is light weight and very efficient.

Being disabled as far as work goes doesnt fit into a neat slot, I'm sure there are things others can do that I can't.

love
Lily
 
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