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Toradoradi
03-23-2011, 03:25 AM
I am really feeling it today. For the most part I haven't had much pain going on but today is not that day. I feel like my body got hit by a truck and all my joints hurt. My fiancÚ and I had our engagement shoot yesterday and it was on the beach, it was sunny out which was nice. In Washington that is rare in the middle of march. I have never noticed a diversion to the sun before but I have read all of you having issues with it, I don't have a rash or anything from it but my body just aches horribly. Maybe it from that. Maybe it was the stress leading up to yesterday's shoot. Maybe it was all of the above. I don't know but I don't want to feel like this right now, though when do I ever want to feel like this, but today, my fiancÚ is home sick & with his back out so I get to be somewhat of a caretaker today and need my body to work right, looks like we may both be bed ridden for a bit today. Well I hope this finds you all better then me today, because today is not going to be an easy day.

steve.b
03-23-2011, 04:11 AM
everybody has different symptoms. unfortunatelly there is no "fits all' with lupus.

it does sound as though your symptoms could come from a mixture of reasons.

in me, i would feel like you for the following reasons.
1. being in th esun for too long.
2. increased stress.
3. doing too much in one day.

hope tommorrow is a better day.

Southshore
03-23-2011, 07:16 AM
Hello -

I know exactly how you feel today! I, too, have been hit by that same truck! I simply don't have time for this is what I am thinking. I got the children off to school, (all four), and thank goodness for my husband! Now,, i have to get to work and put in a full day. I feel like I need two extra hours just to get myself going in the morning. Please know we all know how you feel and support you - this is the biggest challenge for me,, being newly diagnosed. I do have to learn to slow down and take it easy. The problem is when I feel good, I do too much and then pay for it later. I need to learn to manage things better. Take Care!

tgal
03-23-2011, 09:28 AM
Good morning everyone. I too see several things that could cause you to feel the way you do. The biggest of these is something we all have to come to terms with. When one has an autoimmune disease like Lupus the wiring inside us doesn't tell us when we have had enough. On the days we feel better we do way too much because we that thing inside most people that says "it is time to stop isn't there. We just keep going and going to make up for the days that we couldn't do anything. This causes us SOOOO many problems!.

Another problem could be the sun. Not everyone gets rashes from the sun but a large percentage of us have some kind of reaction. It can be rashes, it can be that it pushes us into a flare or increases the flare we are already in. For many of us the sun is not our friend no matter how much we enjoy it.

As Steve said, another HUGE issue is stress. Stress is not good for anyone but especially people with Autoimmune disease. It can send us spiraling into a really bad flare. So you see, the there are many things that may have worked together to make you feel bad. I know it is hard to think about but you need to start making some decisions that will help you feel better. For the most part you don't have to give up your life you just need to rearrange it a bit!

SandyR
03-23-2011, 09:47 AM
I don't always get a rash from the sun. In fact I don't always get the same exact results. Sometimes I get a malar rash, sometimes a bumpy rash somewhere else on the body, sometimes just extremely fatigued, sometimes achy joints, sometimes swollen joints, sometimes just really tired eyes, sometimes a headache and some times a combination of some or all of the above. It's so crazy how it can be some, all or none. I do notice that when I combine the sun with stress I get more things then when it's just sun. Sometimes it takes me a few days to feel normal again. I've also noticed that I am more likely to react when the sun is strongest in the middle of the day then say around 4 or 5 pm.

Peridot20_Gem
03-24-2011, 07:32 AM
I am really feeling it today. For the most part I haven't had much pain going on but today is not that day. I feel like my body got hit by a truck and all my joints hurt. My fiancÚ and I had our engagement shoot yesterday and it was on the beach, it was sunny out which was nice. In Washington that is rare in the middle of march. I have never noticed a diversion to the sun before but I have read all of you having issues with it, I don't have a rash or anything from it but my body just aches horribly. Maybe it from that. Maybe it was the stress leading up to yesterday's shoot. Maybe it was all of the above. I don't know but I don't want to feel like this right now, though when do I ever want to feel like this, but today, my fiancÚ is home sick & with his back out so I get to be somewhat of a caretaker today and need my body to work right, looks like we may both be bed ridden for a bit today. Well I hope this finds you all better then me today, because today is not going to be an easy day.Ado mate,

Congratulations so far with your engagement shots and on a sunny beach, swap places.lol

The sun does'nt always have to cause rashes being in it to much can cause headaches and bodily aches because it's to much for your system and you do need to carm more as i've mentioned before the stress will make symptoms appear more.
Actually looking after your partner may push you through it, as i did some gardening 2 days ago to move my head off the pain but i suffered for it afterwards but i do hope he gets better quickly.

Well both of you spend some nice time together and i'm shocked with the uk weather here, it's like warmth as hit we out the blue after so much rain and coldness.

All my love mate xxx

lovehubby
03-24-2011, 07:39 AM
Steve is so right all the above can bring on a flare. once a month I shop for my grocery's The next day I hurt from head to toe. So I try to make sure the next day I have nothing to do so I can rest.

magistramarla
03-24-2011, 11:53 AM
Yes, like Michele, I have to plan out my week so that I have rest days between the busy ones. I was busy all day on Tuesday and half the day yesterday. Today, I'm yet another one who has been hit by that truck. BTW - can we get that truck driver arrested?
So, today is my day on the couch with the laptop and the lapcats.
I hope that we all feel better tomorrow.
Hugs,
Marla

Saysusie
03-24-2011, 02:02 PM
I have to agree with everyone, we all do not react the same to sun exposure and stress. I never get rashes from the sun, but I do get the horrible muscle aches and joint pain and when stress is added to the mix, I feel as if I'd been run over by a train. Oh, and don't let "overexertion" get added into the mix..it is a recipe for "flat-on-you-back" days.

I know that it is difficult to deal with this current flare-up. However, we all use our flare-ups as learning experiences in order to help us know exactly how this disease affects us and what we need to do, individually, in order to avoid another such flare up. I do hope that you start to feel better soon.

Peace and Blessings
Namaste
Saysusie

tgal
03-24-2011, 02:45 PM
However, we all use our flare-ups as learning experiences in order to help us know exactly how this disease affects us and what we need to do, individually, in order to avoid another such flare up. I do hope that you start to feel better soon.

Peace and Blessings
Namaste
Saysusie

That is so wonderfully stated! Yes. we get a lesson out of every one of them!

Toradoradi
03-24-2011, 09:45 PM
Thank you all for the advice and words of wisdom. This is still a learning process for me and it's hard sometimes to deal with the everyday stresses and then to add this on top of it just makes it harder, but it's nice to know someone else understands. Its hard to talk to my family about it because they don't seem to get it. I was talking with my mom today and she was talking about alternative methods of treating this instead of medication for the rest of my life and said I should try to see a naturalist or something. Honestly I just want to do what I have to do to get it under control, not visit a thousands doctors with a thousand different treatments that who knows if they even work... En it's just hard to talk to her about it because she doesn't understand and sometimes I just need my mom to be there when I need to talk and vent about my everyday pains and I can't. Because then it just launches into a completely different conversation I would rather not have. I don't know how to explain to her any clearer that i can potentially die from this in ten years if I don't treat it early now. I want it to get better, not worse. It's just frustrating having to deal with the stress of that conversation on top of everything else. Thank you all for your words, yesterday was a hard day for me but today proved to be better.

magistramarla
03-25-2011, 10:24 PM
Well, we can all take turns here venting and being "moms" for each other. That's what this group is great at!
Hugs,
Marla

steve.b
03-25-2011, 11:23 PM
read the post about the spoon theory.

it may help you.

hope today is better for you.

craftkeeper
03-26-2011, 01:03 PM
I read all of these post and i now see what everyone is talking about.. i had four days that i felt fairly well so i overdid everything.. Worked to much.. Went out to much{ i did wear sun gear] then got really stressed dealing with some things.. Now i feel horrible.. Swollen,tight legs..blisters in mouth and eyes. aching all over..this is going to be so hard to adust to, i have always been used to getting up every morning at 3;30 and going all day long,doing whatever i wanted to.. I never once thought i would end up like this. It's hard not to cry isn't it?

Peridot20_Gem
03-26-2011, 05:57 PM
I know all about the crying lark and a good many other member's but i've noticed it releases so much pressure built up.

The worst thing you can do is go crazy putting so much into one day because from experience you soon know about it the next day, i've had to learn to spread so many things out in a week to help me from pain etc and i get one day a week where i'm free from everything and at my own leisure, please try and do the same don't pressure your body.

Toradoradi
03-26-2011, 07:08 PM
I read all of these post and i now see what everyone is talking about.. i had four days that i felt fairly well so i overdid everything.. Worked to much.. Went out to much{ i did wear sun gear] then got really stressed dealing with some things.. Now i feel horrible.. Swollen,tight legs..blisters in mouth and eyes. aching all over..this is going to be so hard to adust to, i have always been used to getting up every morning at 3;30 and going all day long,doing whatever i wanted to.. I never once thought i would end up like this. It's hard not to cry isn't it?

I'm not sure any of us thought we would end up like this. It's a hard adjustment, but I'm learning that if I don't push myself too much I have more good days. It is hard to make yourself slow down. I'm 23 and don't feel like I should be in this state of my life... I have too much to live. Too much to do. But none of us thought that this would be us, none of us hoped for it, it's just something that is and something we learn to deal with. It's ok to cry about it, it's ok to be sad about the life you thought you would have but don't anymore, it is ok to feel how you feel. Its better to let it out and relieve the emotions then not to. It's good to feel the things that need to be felt. It's hard but it's something we can get through.

Toradoradi
03-26-2011, 07:09 PM
I read all of these post and i now see what everyone is talking about.. i had four days that i felt fairly well so i overdid everything.. Worked to much.. Went out to much{ i did wear sun gear] then got really stressed dealing with some things.. Now i feel horrible.. Swollen,tight legs..blisters in mouth and eyes. aching all over..this is going to be so hard to adust to, i have always been used to getting up every morning at 3;30 and going all day long,doing whatever i wanted to.. I never once thought i would end up like this. It's hard not to cry isn't it?

I'm not sure any of us thought we would end up like this. It's a hard adjustment, but I'm learning that if I don't push myself too much I have more good days. It is hard to make yourself slow down. I'm 23 and don't feel like I should be in this state of my life... I have too much to live. Too much to do. But none of us thought that this would be us, none of us hoped for it, it's just something that is and something we learn to deal with. It's ok to cry about it, it's ok to be sad about the life you thought you would have but don't anymore, it is ok to feel how you feel. Its better to let it out and relieve the emotions then not to. It's good to feel the things that need to be felt. It's hard but it's something we can get through.

tgal
03-26-2011, 07:27 PM
I'm not sure any of us thought we would end up like this. It's a hard adjustment, but I'm learning that if I don't push myself too much I have more good days. It is hard to make yourself slow down. I'm 23 and don't feel like I should be in this state of my life... I have too much to live. Too much to do. But none of us thought that this would be us, none of us hoped for it, it's just something that is and something we learn to deal with. It's ok to cry about it, it's ok to be sad about the life you thought you would have but don't anymore, it is ok to feel how you feel. Its better to let it out and relieve the emotions then not to. It's good to feel the things that need to be felt. It's hard but it's something we can get through.

Such a great post! You are right. None of us thought we would be like this. We have to adjust to a new "normal" for ourselves. It isn't the same life we had before but it can be just as rewarding.

One thing I have learned is that the heat and florescent lighting tear me up. I hated the fact that my daughter was stuck here or with friends so we made an adjustment. We now go out together we just begin early evening instead of early morning. When I ride in the care at in the daylight I get burned and sick even if I am covered by rashes. If we wait until the early evening we can still go and so some things and enjoy every moment.

Yes, it is a "new" kind of normal but you will find it and you will still enjoy those you love. Until then, and even after, we here while you go down this path

lovehubby
03-26-2011, 07:37 PM
I have been staying out of the sun and feeling much better we all just learn what works for us

tgal
03-26-2011, 07:44 PM
I have been staying out of the sun and feeling much better we all just learn what w orks for us

Exactly! There is no good or bad.. just what works for us

Peridot20_Gem
03-31-2011, 08:39 AM
Such a great post! You are right. None of us thought we would be like this. We have to adjust to a new "normal" for ourselves. It isn't the same life we had before but it can be just as rewarding.

One thing I have learned is that the heat and florescent lighting tear me up. I hated the fact that my daughter was stuck here or with friends so we made an adjustment. We now go out together we just begin early evening instead of early morning. When I ride in the care at in the daylight I get burned and sick even if I am covered by rashes. If we wait until the early evening we can still go and so some things and enjoy every moment.

Yes, it is a "new" kind of normal but you will find it and you will still enjoy those you love. Until then, and even after, we here while you go down this pathMari, you've stated something just right there about the sun because being cold all my life and half the time in the summer, i've always looked forward to summer arriving but like yourself i'm adjusting when to be out in it plus to be well covered in 50 block as i come out in bad rashes also but my life's turned to this thermal long sleeved vests in the winter and short ones in the summer, so my body temperature just keeps right and if i am out it's mainly the shade i go for.