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cjc
11-24-2007, 05:39 PM
i am new here and need some support. i was diagnosed in 2006 with fibromyalgia and january of this year with copd. now in september i was diagnosed with sle.... :? ... my husband has been great through all this, although at times i feel as though he shouldn't have to take care of me. i have always been the one to take care of everyone else, now i am the one being cared for and it is depressing. i hurt all over every day, it is to the point that i need help with everything including getting in and out of a bath. some days i just want to cry because of the pain, other days i do nothing but sit or lay because i can't do anything else. my new rheumy told me i was miss diagnosed 2 years ago when i was told i had ra... :x ... that's when i was given the shock of my life that i had lupus... so here i am asking for support and guidence from others living with lupus... any help and advice will be greatly appreciated.

thanks
cjc

concerned1
11-24-2007, 06:06 PM
Sorry to hear that, cjc.. First of all, welcome here. I'm new to this forum as well, and new to Lupus (my fiance was recently diagnosed with it and I'm here to find out more about it). About going from taking care of others to needing care, don't look at it like that. I can give you my take on what's going through your husband's mind as that's pretty much the same situation I'm in. You need to be strong for him and keep on going. There's a medicine for the various issues that arise with SLE. You will feel better with time. Getting a correct diagnosis is the first step. It will be ok. This forum is a great source of help and support. Others will be able to provide you with answers better than I can, but rest assured, you'll get tremendous help here. If you have any specific questions, just ask.

hatlady
11-25-2007, 01:10 PM
Welcome to both of you!

We're all here to support each other - concerned1, it is wonderful that you are here in support of your fiance, and I hope she'll join in as well.

cjc, so many of us have gone through wheel'o'doctors and diagnoses, we understand the frustration - and the pain. Literal pain. The autoimune conditions - fibro, RA and lupus especially (I think, anyway) have a lot of pain associated. Don't be afraid to try different means to manage the pain - you'll end up with a bit more energy if the pain is under control. For many of us, that means trying different medications, or dietary changes or some lifestyle changes. It just isn't a "one size fits all" world... with lupus or anything else!

Many of us find that light exercise helps, in addition many of us have modified our diet to include more of the good omega oils - olive oil, salmon, flax, and so on. I changed my diet to mainly vegitarian - no meats except for occassional cold water fish (salmon, tuna) and very high in grains, vegitables and fruits. It has helped me.

I encourage both of you to wander the board and read many of the posts, we share and learn from each other. And when the pain is there, and things aren't going well, we lean on each other, cry together and comfort each other.

~gentle hugs,
hatlady

concerned1
11-25-2007, 01:54 PM
Thanks hatlady :) Unfortunately my fiance doesn't have a reliable internet connection (we don't live together yet) so she will not be joining here right away. Eventually though i hope to get her on here :) I have read most of the posts here and they've been truly beneficial, and for that i commend everyone who has offered their input on things from home remedies to sharing experiences with pain, situations, and even on the various medicines available. Keep up the good work, everyone!

Stay strong.
- Concerned one.

sits_inthe_corner
02-17-2008, 06:06 AM
I'm fairly new here. I've been in pain for the past year and am still in the process of being diagnosed.

I was like you a couple of months ago...in pain all the time .. couldn't even dream of taking a bath. Needed help to step in and out of the shower. Better living through chemicals!

It takes awhile to figure out what the best drug treatment is for you. But once it kicks in...life does get better. I was on several different drugs that did NOTHING for me. Everyone is different. What didn't work for me, very well may work for you....just be kind to yourself while you get sorted out.

If or when the doctor puts you on a drug, ask how long before you should feel the effects of pain relief or swelling reduction. Give it the maximum time the doctor suggests. BUT if it doesn't work, get back in there say and let them know if it's not working so you can move on.

The dotors know it's trial and error...so they will be expecting you.

For now you have to finde that happy medium of when to move around and when to sit and be quiet lol. Use what ever you can to make life more pain free and to get proper rest., i.e. I wear satin pajamas and have polar fleece bed sheets on a memory foam mattress. I'm warm comfy and can turn over easy through the night with out jarring my poor pittiful legs lol.

I wear a tensor velcro knee brace during the day so I can walk easier. I say the velcro because after awhile you want to take it off easily for a break from it.

I wear the compression diabetic socks from the drug store during the day to help keep the swelling down. But as soon as I'm home...OFF then come.

Hope this helps a bit...soft hugs. Be kind to yourself and flirt with your hubby while he's helping ya out :lol:

jesseyleigh
02-17-2008, 11:55 AM
cjc, i went from a very similar idea of taking care of everyone to them having to help me (mine being friends) but i learned i may not be able to physically help them but i can still listen and emotionally take care of them sometimes thats more important than the physical stuff