A Few Really Bad Days

[JazzGirl]

Hi All:

I am normally not a big cry baby. At least I hope that is true. But the last few days I have been feeling absolutely terrible! My mother came to NY to go with me to the Rheumy on Friday so I think that I over did it!

I went out to the nail salon on Thursday with my mom and then went to my Rhuemy and Nuero appt. on Friday. I rarely go out two days in a row and these were two hot and sunny days! Even if Thursday was only for an hour or so. And Friday I was in a car most of the time but that does not seem to make a difference.

So here is what is going on. My skin is still burning! Not as badly as it was this weekend but my back is still really irratated. Does anyone at all relate to this? If not I am wondering if it has to do with some of my nuero medications. My body is aching even more then normal. I am so tired I don't know what to do. I feel like someone poured cement into my limbs they are so heavy. I am sick to my stomach. The fog in my head is unbearable and my routine migraine is ever present.

I called the Rheumy on Monday and again today but have not heard back yet. She said that she would probably put me on Plaquenel whether she offiicially diagnosis me on Monday or not so I am hoping that she will call in a prescription. Will that help? I am sick of only leaving my apartment to go to doctors appointments! I used to travel and sing and run my own indie record label! I miss being able to think clearly! I miss my friends! I miss my life! I am trying to be as strong as some of you are. I know that compared to many of you I have it good. I just want to feel better. Does anyone have any tricks to help and pick themselves up on days like this?

Thank you for being here!

Love,
Liza style_emoticons/<#EMO_DIR#>/sad.gif

[Lily]

((((((((((((((Liza)))))))))))))))) style_emoticons/<#EMO_DIR#>/hugbetter.gif

Yes we've all had days where we have gone out, had fun and paid the price. Because you are on no medications yet to help control whats going on its really going to knock you around. That should improve once you are on the right meds, and you will have more leeway. But in the meantime you really need to rest when you feel like this, I had to learn to listen to my body signals and that took some time but its something you will achieve and something that you will have more control over in the future, given the right diagnosis and meds.

I'm glad you are seeing the Rheumy on Monday and hopefully they will start treatment. In the meantime take every precaution with the sun and try and get some rest. Bring up all this with your Rheumy, because Plaquenil will take time to have full effect and you may need something else like pain meds etc to help get you through. Are you sleeping ok at night? Thats another consideration too and if we arent it seems to make everything else so much harder on our bodies.

Sending hugs and its ok to vent at times like these, we understand how you feel we have all been there at some stage and we all visit there now and again too. But things will get better, that much I can assure you.

love
Lily

[halfpintfl]

style_emoticons/<#EMO_DIR#>/wavey.gif Hi Lisa, I know just how you feel, especially the part about having cement
poured into your limbs. Yes, you probably overdid things when your mom came,
but thats something we all have to learn. Learn three things; 1-pace yourself, 2-
the sun is your enemy, and 3- stress=pain. They are all extreemly important, but the first one is the hardest to do, but you must work at it, cuz only you suffer. It would be good if you were put
on Plaquinel, but they say that it takes 3-6 months for it to kick in, for me it was 9 months,
so you see, we are all different. The only way I have managed to survive so far is to pace
myself. The laundry does not get done on one day anymore. I do several little loads throughout
the week. You have to think along those lines, then you will begin to have your good days
back. You can do this, I know that you can. Any more questions?? just keep asking Oh, how
long have you been diagnosed? and make sure your Rheumy has a list of all your symptoms in your
file/

Be well and keep posting, style_emoticons/<#EMO_DIR#>/cool.gif

[Joandublin]

Hi Liza style_emoticons/<#EMO_DIR#>/hugbetter.gif style_emoticons/<#EMO_DIR#>/hugbetter.gif

So sorry you are feeling so horrible. The way you describe the fatigue just about sums it up...cement in your limbs. It certainly does sound like you overdid it. My skin also feels burning and uncomfortable in the sun (despite the highest sun block I can get my hands on). Sometimes it feels like someone has a magnifying glass trained on it....and its just burning holes in me...!

Lily and Halfpint have given you some good advice. When you get to see or talk to the rheumy please make sure you tell her how bad things are for you. She may be able to prescribe something more short term like pred or pain killers or both. The Plaquenil wont work quickly.

However Liza the best advice I can give you is rest up now as much as you can. Try and go with the pace of things for a few days.

It will get better for you once you are on the right treatment but for now I know - it sucks...
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Luv n stuff
Joan style_emoticons/<#EMO_DIR#>/flowers.gif

[oesa]

Hi Liza - sorry you're feeling crummy. It does sound like you might have overdid things a bit. Figuring out how to pace yourself (and accepting that you need to) is (IMHO) one of the most challenging parts of having lupus.

Even when I considered myself completely in remission the fatigue was an issue. I'm in pretty good shape these days, but I ran a golf tournament yesterday, which meant an 18 hour work day and 6 hours on the course, and today I'm dragging myself around like I haven't slept in weeks. "Cement in my limbs" is a pretty accurate description of the feeling. Cement in my brain is accurate too....

Really the only thing that I've found helps is rest, which I know isn't what you want to hear. Eventually I think most of us have made choices about what is really important to us, and prioritized accordingly. For me, work, family and singing are really important, and I've made a few trade-offs in other areas (like cleaning my house...) so that I have time and energy for those. You'll get there - it just takes time.

I hope you feel better soon - please let us know how your rheumy appointment goes.

Lisa

[alobreto]

Hi, Liza! style_emoticons/<#EMO_DIR#>/wink.gif
Pacing activity with rest is one of the toughest dilemmas we face. And it seems like the energy level fluctuates day to day, sometimes even hour to hour. That makes it even more difficult.

I agree that doctor visits aren't the most fun activities as far as 'going out' goes. It would be much more enjoyable if we could have the energy to do more than one thing in one day sometimes.

Most people don't have a clue that taking a shower can put you down for the rest of the day because of the energy expenditure.

I'm sorry you're experiencing this horrible fatigue and burning skin, and hope that things ease up quickly.
Angela style_emoticons/<#EMO_DIR#>/hugbetter.gif

[helloos]

Hi Lize, everyone said so many true things.

I think yes, it is hard to get used to the idea that the body is weaker than the mind.

I went through periods of times that the skin was burning and I don't think it had to do with the sun for me. I am not sure why it happened except it was in the winter time too. It is such an aggrivating thing and no clue why it happens, except with me it would start and go all over the body different places, for a second, next place for a second. The worst was my arms and legs for some reason.

I hope that your doc does give the Plaquenil a start.

I think when you say you are not as strong as some of us is untrue. You are strong. Stronger than you think so give some credit where it is due. We all have our bad - weak days and our strong - good days. It is a rollercoaster that none of us enjoy. Vent on here. The strength comes from getting it all out - whether it be by crying, or coming on here and venting, or coming on here and giving advice. When you are done, we bring you up and when we are down you bring us up.

Just remember it is ok to cry. It is normal to have these on and off feelings when we deal with so many struggles, each of us a different one in a different way. But when it comes down to it, we are all one and the same.

Hang in there. Tomorrow you will open your eyes and feel better.

[LilliesPad]

Hi Liza,

Sending you lots of understanding and cyber hugs. style_emoticons/<#EMO_DIR#>/hugbetter.gif style_emoticons/<#EMO_DIR#>/hugbetter.gif style_emoticons/<#EMO_DIR#>/hugbetter.gif style_emoticons/<#EMO_DIR#>/hugbetter.gif style_emoticons/<#EMO_DIR#>/hugbetter.gif
I think most of us on the forum can say that we've "been there and done that" when it comes to overdoing it. I add my voice to the others - once you're on Plaquenil and hopefully pain meds you'll start feeling alot better. It did take about 4 months for the Plaquenil to kick in for me but the pain meds worked somewhat until then. Better than going it alone anyway. I can really relate to your wanting your life back. That was a tough one for me too. But like everyone has said things do get better and your outlook on life will also change once you realize there is life after Lupus. All the best to you and I hope there are lots of better days ahead.

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