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Old 06-10-2009, 02:37 AM   #1
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Unhappy will I ever feel beter ?

Hi everybody... I need a little help, diagnosed with lupus last Year August. I have pain everyday, there is always something going on. Will I ever feel normal again and have a day without any pain, my eyes are dry and painfull, my fingers, toes and hips are the worse, it feels like someone is stripping the flesh from my bones. Then there is also the headachs and the itchy skin. I am on Plasmaquene and Celebrex, dont think its helping. I cant sleep at night my body achs all over. Just so tired of feeling crappy all the time, I have been crying the past few days, that maks me feel even worse. Sorry for all the nagging, just needed to get it out of my system and tell somebody, hopefully I'll feel better now. Thanks for listening

 
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Old 06-10-2009, 09:54 AM   #2
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Re: will I ever feel beter ?

hello inap ***BIG HUG***
welcome to the board - unfortunate circumstance has us meet but here we are!
yes the pain does subside - often not quick enuf but we all have our ups and downs and the downs (flares) seem to be sooo low but there is loads of support (esp here) to get you thru the dark days!
plasmoquine will take some time to kick in but hang in there and give it some time.

how long have you been on celebrex? i think this also needs a while to feel the effect (again i say i think) could you not ask your doc (hopefully a rheumy) for something/pain meds that you can use as necessary?

i always say that normal is over rated and being newly (kinda) dx you will need to find your own new normal ...
Please remember you are now your own best advocate and MUST listen to yourself ... your body will let you know what it needs ... learn to listen and pace yourself ... if i dont get at least 8 hours sleep then trouble hits the fan ...

never feel the need to apologise - not here! yes there often seems to 'always be something' but my personal experience has taught me that i have patterns and i can sometimes 'predict' the flare - no i dont self fulfil negativity but i know my body!

so you hold on tight and keep posting!

Ang

 
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Old 06-10-2009, 03:01 PM   #3
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Re: will I ever feel beter ?

Quote:
Originally Posted by inap View Post
Hi everybody... I need a little help, diagnosed with lupus last Year August. I have pain everyday, there is always something going on. Will I ever feel normal again and have a day without any pain, my eyes are dry and painfull, my fingers, toes and hips are the worse, it feels like someone is stripping the flesh from my bones. Then there is also the headachs and the itchy skin. I am on Plasmaquene and Celebrex, dont think its helping. I cant sleep at night my body achs all over. Just so tired of feeling crappy all the time, I have been crying the past few days, that maks me feel even worse. Sorry for all the nagging, just needed to get it out of my system and tell somebody, hopefully I'll feel better now. Thanks for listening
Welcome inap! I give you virtual hugs it DOES get better, but part of the process is talking it out! Have you talked to your doctor about these issues lately to let them know you are not feeling any relief?

 
Old 06-10-2009, 06:29 PM   #4
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Re: will I ever feel beter ?

inap, hi. I'm sorry you're feeeling so low!

Have you felt better or worse since starting Celebrex? I'm only asking because, in the U.S., Celebrex is now prescribed *only* if NSAID's have proven utterly ineffective; and Vioxx was completely withdrawn here... I think in both cases due to unacceptably high numbers of GI bleeding and heart attacks/strokes.

Is Plasmaquene an anti-malarial?

Are you on any other meds that could increase your odds of adverse effects?

Have you had repeat bloodwork to see if anything else may be going on? Are you avoiding sun?

I agree with the others, that you need to talk frankly with your dr. I hope he and you can try something different. I really hope you can get some improvement, and SOON. Good luck! Sympathetically, Vee

 
Old 06-11-2009, 02:37 AM   #5
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Re: will I ever feel beter ?

Hi Angel MJ, thanks for your reply, I'v been on meds since last year October. Unfortunatly my doctor thinks that I'm wasting his time then I make an appointment. He said it cant be as bad as I make it out to be. Last year I had terrible chest pains, he told me that its indigestion from the medication and that I should stick it out (HAHAHA) Looking for a new doctor that actually knows something about Lupus, my GP at this stage gives my all the help I need but she suggested that I find a specialist doctor that knows whats going on. thank you so much for your reply, it gave me some hope.

 
Old 06-11-2009, 02:42 AM   #6
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Re: will I ever feel beter ?

HI Vee thank you for the reply, i'm not on any other meds, I'm looking for a new doctor that actually knows anything about lupus, My current doctor only did the initial tests, didn't give me a copy, will do new tests with the new doctor as soon as I find one. Will keep you updated, thank you so much for your support, it really means alot. (HUG)

 
Old 06-11-2009, 04:37 AM   #7
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Re: will I ever feel beter ?

hi inap - you need a new rheumy fo sho! someone that you feel is there to help you learn & understand this auto immune disease and help you find ways to cope, PLEASE never let them make you feel you 'are wasting his time'

if money is an issue then try a teaching hospital ... joburg has me looking at going to Jhb Gen (eeek) but guess what they have great doctors ... the nurses are mostly a horror but they are only a hurdle to overcome and they will not keep me away ...

i have had the same doctor since being dx 6 years ago and am going thru what you are going thru ... so a new doctor is in the pipeline (last visit i actually wanted to ask for my money back) a valuable piece of advice that made this decision easier was - a new doctor can be a blessing!

if you have more than one issue going on (ie lupus, GI, gynae, psych etc) then a Specialist Physcian can be a good start ... if you are dealing with the lupus then a Rheumatologist is the go to doctor ... there are many medicinal options available (even in SA) so don't give up if the meds aren't working for you ... let the doctor perscribe and try something else ... best part of the dx is the treatment options that become available ... hang tight!

also try google 'The Spoon Theory' - made me rethink things.
***BIG HUG***
lupus has been compared to being on a rollercoaster ride - up down, exhilarating, scary etc but more acurately i read that it is more like being at an amusement park and going on different rides at different times!

try develop a support structure (message boards are a BIG part for me) and if you are married, live with parents or anyone close to you ... let them be involved with the doctor appointments and they can also ask questions and learn with you ... not easy i know but it will help you and save you energy ... i take hubby with b/c i miss things, get emotional and he then steps in and helps ... he is also learning (bless him) but that in its own is another story (he forgets and says things like, but you dont look sick, it is in your head!) so i use his flu's & colds as a way of comparing the way i feel daily to help him understand. also i rate everything on a scale of 1-5 (5 being worst)

have you started a health journal? jot down every day (takes some practice but is worth the effort) jot down your symptoms - this helps find the patterns. and when you go to the doctor you don't have to remember everything.

it gets better, sometimes it gets worse but we get thru it!
Ang

Vee - yes plasmoquine is an anti malarial (blue & white capsules) in SA they use chloroquine, nivaquine, plasmoquine (of which i had adverse reaction to the first 2 and the plasmoquine really messed with my eyes)

Last edited by Angel MJ; 06-11-2009 at 04:43 AM.

 
Old 06-12-2009, 05:30 PM   #8
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Re: will I ever feel beter ?

Yes, yes, yes, it does get better, but you need the right doctor and medication for that to happen. A rheumatologist will give you much better care. You may need to be on a drug that will suppress your overactive immune system. That (Imuran) and Plaquenil is what works for me, even though I have some stomach issues that I'm working on right now, from the Imuran. You may need to try different meds until the right mix is found for you and then you will feel so much better. Hang in there.

 
Old 06-15-2009, 07:34 PM   #9
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Re: will I ever feel beter ?

Hey I remember feeling the exact same way when I was dxd 11 years ago. At the time I had a 5, 3 and 1 year old and I didn't know if I could make it day to day. My only advice to you is to take the time to know your limits, do not be ashamed to ask for help and most importantly always know that if you don't get things done today they will still be here tomorrow. Rest when you need it and definitely talk to the doctor about some pain meds to help get you through the rough days. I actually have two different types that I alternate taking. As you and your body get more adjusted to the meds and the symptoms you will find a happy medium. My hardest lesson was learning that I didn't have to be superwoman, and I had to learn to adjust. I send out many well wishes and hope that you can find some relief and comfort.

 
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