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sonmak
06-28-2011, 05:32 PM
Hi, i came across this site after googling 'why am i so tired' and noticed 'Lupus'. I don't know alot about Lupus but I remember my GP mumbling to herself that she thought its what i have and so followed the link... and found people that might not call me lazy for being tired!
I am 36 years old with two beautiful girls, and a husband, and I have been tired for a such a very long time, I remember being yelled at as a 9yr old for wanting to sleep too much. As a teenager I had constant headaches and pain would come and go in my lower back and legs, I was told if I wasn't so lazy I wouldn't feel so sick. Mmm, my bad :/
I was diagnosed with RA at 21yrs old after about 2 yrs of symptoms (including not being able to walk) but it didn't show up in my blood. Sigh, I'm gonna skip some... past two years has gotten progressively worse, the pain is no longer controllable by taking things easy, and it seems to dance along my bones not just stay in my joints. It seems I'm constantly (gets gross here...) nauseous or throwing up often get constipated & 'loose' in the same 'visit' (sorry if its tmi), chest pains, sweats, some days just taking my youngest to school and picking her up again is all i can manage. I avoid the daylight cause it gives me headaches and nausea and as a result my vit D levels are now very low.
I really don't like to sound so negative, but its getting harder and harder not too :(
I feel like giving up, i feel like more of a burden than a valued member of the human race. sorry for complaining so much in my very first post, i just got excited that people here might 'get it'.

Peridot20_Gem
06-28-2011, 05:47 PM
Hello Sonmak,

A lovely warm welcome to WHL and it's lovely to have you with us and as you can see there's loads of threads to venture knowledge from concerning the condition.
If you do have Lupus we definitely would'nt call you lazy...as that's what Lupus and Autoimmune diseases do to you make you so weak and lake energy.
Your not complaining one bit you've come on here and vented and stated your issues on what your suffering and going through, that helps all member's better to help you and give you advice.

All those symptoms your suffering is what you have from Lupus and if you was feeling the affects from 9yrs old have they told you it's inherited, as i was feeling mine at 5yrs old and was'nt diagnosed till 3 yrs ago and i'd also inherited it.
Refering the pain it does move about and can be quite painful at times and actually i'm like yourself finding it very hard to cope with, i'm 42 and feel 90, it's like it sucks the life out of you.

What meds are you on for your RA?

It will be nice getting to know you Terry xxx

lovedbyHim
06-28-2011, 06:11 PM
Hi Sonmak! Welcome to a great group of folks who will never think you are lazy (smiling). I am home for 4 days to sleep. Feel better already don't you? Lol Many of us battle fatigue and pain daily. Search all the threads and see what you can learn. Have you done any reading on fibromyalgia. The fatigue and lower back ache,etc. Just made me think, "Gosh that sounds like me." Several of us have fibromyalgia on top of our AI diseases.

I hope you find this forum like family, as I have. So glad to welcome you here!

rob
06-28-2011, 06:23 PM
Hi, i came across this site after googling 'why am i so tired' and noticed 'Lupus'. I don't know alot about Lupus but I remember my GP mumbling to herself that she thought its what i have and so followed the link... and found people that might not call me lazy for being tired!
I am 36 years old with two beautiful girls, and a husband, and I have been tired for a such a very long time, I remember being yelled at as a 9yr old for wanting to sleep too much. As a teenager I had constant headaches and pain would come and go in my lower back and legs, I was told if I wasn't so lazy I wouldn't feel so sick. Mmm, my bad :/
I was diagnosed with RA at 21yrs old after about 2 yrs of symptoms (including not being able to walk) but it didn't show up in my blood. Sigh, I'm gonna skip some... past two years has gotten progressively worse, the pain is no longer controllable by taking things easy, and it seems to dance along my bones not just stay in my joints. It seems I'm constantly (gets gross here...) nauseous or throwing up often get constipated & 'loose' in the same 'visit' (sorry if its tmi), chest pains, sweats, some days just taking my youngest to school and picking her up again is all i can manage. I avoid the daylight cause it gives me headaches and nausea and as a result my vit D levels are now very low.
I really don't like to sound so negative, but its getting harder and harder not too :(
I feel like giving up, i feel like more of a burden than a valued member of the human race. sorry for complaining so much in my very first post, i just got excited that people here might 'get it'.

Hi Sonmak,

Welcome to WHL. About your pain, you said that "it seems to dance along my bones not just stay in my joints". That's one of the best descriptions of what much of my pain is like, that I've ever heard.

I was diagnosed with Lupus in 2004, and then MS of all things nearly two years ago now. I literally get pain deep down in my bones. It's way down in there. Sometimes burning, sometimes sharp, always moving. There are so many things you mention about yourself, that are a part of my own story as well. The problems with sun exposure, nausea for no good reason, chest pain (costochondritis in my case), and the fatigue, it's like wearing a lead blanket.

The good news is, much of this autoimmune stuff can be controlled, if you can get a proper diagnosis. Stick around, ask questions, and don't be afraid to jump into the conversation, and hopefully the good folks here can help you find the answers you need.

Above all, don't give up, and don't worry about sounding negative here. It's hard to be positive when you feel like you do, and that's OK.

Rob

sonmak
06-28-2011, 07:07 PM
Thanks guys :) I do feel better already!
I had an appointment with a new rhuem who has ordered a full body scan and new set of blood tests, my last results included a positive ANA with speckled pattern, but not very high (but hey, least something showed! lol), but i have applied to a local clinic who offer a free Rhuemy if there is a spot and she has said to wait because they might order different (read less) tests.
Meds... I used to be on vioxx (before it was banned) and approx 9-12 fortes a day, i chose to quit them and began self medicating (thinking RA was the only issue) because i felt like shit, always tired and could feel my heart thumping (irregularly) like it was trying to get out! It helped for a while. The last couple yrs I have been only using pain meds, various anti-anxiety/depression meds, a personal coach and 'positive mindset' trainings (mmm, could be time to drag my ass to another ;). The last couple of months i have been taking Vit D, Celebrex, Pand Forte and pristiq. (when i can eat enough to take them) To be honest I have been remiss when it comes to opportunities to get answers... i have missed soo many appointments through just forgetting or sleeping through my alarms. :/ (sigh, i used to be smart and capable, an Editor, now someone asks me to do a simple task or question and i just stare at them trying to fathom what they've said!)
Inherited?... My mother was diagnosed with fibromyalgia and RA in her 40s.
Thanks again everyone, it really is hard to describe what finding you all means to me, I especially love reading the posts from friends and loved ones who are looking for info to better understand, sniff, great stuff, I say to you guys, please breed breed breed! ;P

steve.b
06-28-2011, 07:38 PM
hi sonmak,
love your homour.
we dont just breed, we adopt..........
you are now part of our family welcome

people on this site dont just get it......weve got it.

there is 63 auto immune disorders. many of there symptoms overlap.
and as luck would have it, it is not uncommone to have more than 1.

irritated bowel syndrome (ibs) is a common complaint with many of the disorders.

the good thing is lupus (and most of the other disorders) is not nesessarily a death sentance.
modern medicine has come a long way.

i am a good example of what might happen. 3 years ago i was undiagnosed. i had major organ involvement. (heart, lungs, kidney and liver)
now i am lucky that my meds have my lupus in check. my rhuemy is starting to reduce my meds.
i still have other issues that keep me out of work, but my lupus is under control for now.

not everyone is as lucky, but it is possible.

it is not easy, but try to keep your appointments. ask your doctors for a reminder text, on the day of the visit.
a few of us are able to get them. remind the secretary you have brain fog.

rob
06-28-2011, 07:49 PM
I say to you guys, please breed breed breed! ;P

I'm Trying! I'm Trying!!

(that's the funniest thing I've heard all week, and it's only Tuesday...)

Peridot20_Gem
06-29-2011, 06:57 AM
Hi Sonmak,

Your down to earth and say what needs to be said...i'm laughing at your post in some parts.

Keep we update on your new rheumo appointment on what he/she said?? and at least you've had a go at trying stuff to help yourself.

Oh if you're missing appointments and sleeping through alarms which i do, my hubby as to wake me...whatever you have his sending you brain dead and sleepy and if you can't think straight that's foggyness of the brain, it does do alot of us in.

Yes it could be inherited as i was born with what i was diagnosed 3yrs ago and the Rheumo said i'd inherited it off my parent's which one i dow know.

You just takecare of yourself and keep we updated and you've met a smashing bunch of people on the forum, who will help as much as we can.

Terry xxx

lovedbyHim
06-29-2011, 09:48 AM
Omgosh Rob I'm dieing laughing here!

wash&wag
06-29-2011, 02:33 PM
Hi Sonmak,

I too am new to the site and have been dealing with all the same issues and then some you are progressively for 10 years. I have found this site and this group of people are wonderful and have a world of knowledge, tips and advice. It was the best thing I have ever done for myself to join the site! Welcome! I too have SLE, Fibro and am dealing with Cancer. I am nauseous more times than not, pain, pain PAIN! Headaches, kidney infections, hypertension, tachycardia. Dizziness, memory loss, depression, anxiety. You name it! Cancer is almost BEAT but the rest is what I have to live with forever. WElcome and your amongst some amazing folks here! Best of luck and talk to you soon!
Tanya

wash&wag
06-29-2011, 02:34 PM
If we can't laugh what else do we have :-) I love a good sense of humor and a good laugh. :-)

magistramarla
06-29-2011, 02:52 PM
Sonmak and Wash&wag,
Welcome to both of you. You've found a good place here where people understand what you are feeling. We're all going through similar things.
I hope that you both keep coming back to join us.
Hugs,
Marla

Saysusie
07-03-2011, 07:33 AM
Hello and Welcome Sonmark and Wash&wag;
I am so happy that you found our home here and I see that you've met many of our members. This place is like a family where we care for and about one another. Everyone here is more than happy to answer any questions that you may have, to research any information for you and to just be here to let you know that you are not alone. Again........welcome :-)

Peace and Blessings
Namaste
Saysusie

Peridot20_Gem
07-03-2011, 10:43 AM
Hello Sonmak,

I hope your keeping ok since you joined up and your days been a less pain free one...please keep we updated on yourself and especailly seeing the Rheumo.

Terry xxx

Elo
07-03-2011, 01:38 PM
Hey there :) I'm new as well, but I just wanted to say a belated welcome! I haven't been here long, but already just surfing around the forums has made me feel so much better and at home- I hope you feel the same!

Of course you're not lazy for being tired! That's one of the big parts of having an autoimmune disease (unfortunately..hehe).
You said you feel "more like a burden than a valued member of the human race", but that's simply not true. Everyone here values you for who you are and what you go through - not to mention, you said yourself, you have two wonderful daughters, and i'm sure you mean the world to them. To your family and all of us you are a blessing and not a burden :)

I'm so glad you found the forum- even just hearing about and talking to people who have similar problems as you can really help you get through each day and make you feel better, and less alone.
Hope you're doing well, welcome again,
Elo