View Full Version : Not feeling the best
06-24-2009, 09:53 AM
I have barely been able to get up all week. I feel drained of all my energy when Im not even up doing anything. I try to get up and do things and I just get dizzy and lay back down. I've been helping watch my little brothers while my moms at work and I cant even get off the couch to do anything with them. I feel pretty useless when all I do is lay around and sleep. And no one in my house seems to care that Im wrapped up in blankets and warm clothes in the middle of summer because they have the air up so much and I cant feel my fingers and toes. Its all very frustrating. :grumpy:
06-24-2009, 10:07 AM
I know how you feel, I hate to not be noticed. Everyone around you acting like your ok, not seeing how you really are. Is hard, frustrating. You feel miserable, look bad and they just go about their day as if you looked normal.
Try not to let it get you down, it only makes you feel worse. Know there are many of us here that do understand and can see the misery of how you feel in your words. We are here when you need an ear, glad you found this place. This place is what keeps me OK, when those around me act as if they do not notice or care.
Hope you feel better soon and get a chance to see a doc.
06-24-2009, 10:14 AM
It just sucks. Im trying to get my first job and I dont know if Im even going to be able to handle anything where Im going to be on my feet all day.
My mom seems to be the only one who notices that Im not feeling very good. My step dad whines like a little kid whenever he gets a little hot and makes this house freezing and Im like thanks, I cant move my hands Im glad your comfortable.
I dont have another doctor appointment until August. And I dont know if I should call them. I've just felt like crap for almost 2 weeks now, not taking into account that my hands have been swollen like crazy for at least a month now.
06-24-2009, 11:14 AM
AWWWWW, sorry you are feeling this way Ritzbit:no: You should (if you can) rethink your job, on your feet all day and lupus just DONT MIX. I was a personal trainer and i had to stop due to my symptoms. My brain fog REALLY didnt help my job either!:wacko: My clients were looking at me like "gee, should I be training YOU instead of YOU training me?" UGH:huh: You SHOULD get in to the dr SOONER if you can because swollen limbs SHOULD be checked out. That can be a VERY SERIOUS problem, possibly vasculitis, especially along with your cold hands and feet. Please take care of yourself and i hope you can reajust your life in some areas for the sake of your health. GOOD LUCK:cute:
06-24-2009, 11:31 AM
It just sucks. I will be able to drive soon and I want to get a job so I can buy my own car but Im not really sure what Im going to do.
My doctor already has me on something for my swelling but it doesnt seem to help. and she told me she doesnt think I have vasculitis. My cold hands and feet is becuz of my Raynauds. It sucks. Nothing I do seems to make me feel better. Im 16 and feel like an old woman. I hate it.
06-24-2009, 11:37 AM
AWWWW, i am so sorry you are feeling so down hun. I understand the "old woman" feeling. Im almost 37 (not your sweet 16:cute:) but i too feel as if im 80. DO you work out,stretch, eat fresh fruits and veges,take herbs and vitamins, do something DAILY that makes YOU feel alive? I have my days too that i feel pretty down, but I have to Refraine from SAYING things to myself that hurts me even more, our minds are VERY POWERFUL. CHange some of your words that only will make you feel worse hun. The other things i mentioned help TREMENDOUSLY as well. YOU WILL PULL THROUGH SWEETIE!!!!!!!!:yes:
06-24-2009, 11:39 AM
so sorry you are going through this....i think you should call your dr. You say your appointment is in August, if you call her, she might can get you in sooner. When i am in such a bad flare and can not get out of it, my dr. gives me a shot of Medrol, and i get immediate relief....If you call the office and tell them how you are feeling, maybe they can get you in to see the nurse practitioner, or your drs. assistant. This is who i see when i need an immediate appointment, and they give me the shot.....
so, please call your drs. office and see if they can help you. Keep us posted.
06-24-2009, 11:48 AM
Thanks for the advice. Maybe I'll ask my mom to call up there. Im just kind of hoping it'll stop on its own. Im so sick of meds and all that. I've been on my meds since like march I think and I see no difference.
06-24-2009, 11:54 AM
AWWW hun, if you see no difference then for sure you should be getting back in to the dr ASAP. I hate taking meds if i DONT have to but i am on 3, i hope i can keep it limited to that or less would even be nice. A couple of my drs do believe i would be MUCH WORSE if it wasnt for my lifestyle of NATURAL remedies, organic foods and exercise.
06-24-2009, 11:56 AM
i too hope your flare will stop on its own....but if you get to the point where you can't wait any longer, call your dr. and see if there is anything that they can do to get you out of the flare....sometimes our bodies just get so weary and then other symptoms start to interfere with our recovery....this is not your fault, it is the disease that is running rampant inside of your body.
Please rest and take care of yourself.....if watching your brothers from the couch is the best that you can do, then don't feel guilty. You will feel better and then you can do fun things with them.
wish i could give you advice about the room temperature, but it sounds like your step-dad gets to make that call. I guess i would pull out the wool scarves, gloves, hats, etc.....maybe even plug in a heating pad and keep it under the blanket with you.
06-24-2009, 11:59 AM
Phyllis gave you some really GOOD advice kducks:cute: She summed it up nicely:cute: I too wear some gloves and i double up my socks at times as well!!! LOL Even though its 90 outside!!!:wacko:
06-24-2009, 12:06 PM
I take 7 pills every night with my dinner. and the only one that isnt lupus related is birth control, and the only reason Im taking that is becuz I cant take my old acne medicine anymore lol What kind of natural remedies?
Im giving it another week I think before we call the doctor. The worst of it is just feeling so drained. I was trying to play Candy Land with my 3 year old brother today and he got frustrated with me and sat and watched tv becuz I couldnt even do that.
I hate having to bundle up while its summer becuz then I end up having to change my clothes everytime I want to go out and have to do more laundry becuz Im wearing 2 outfits a day.lol
06-24-2009, 12:20 PM
Hey, did you know that any type of birth control is BAD for people with lupus? I would talk to your Gyno about that hun. My Gyno told my hubby and i that any type of meds that mess with your homones can make your flares WORSE. I wanted a hysterectomy even but she said even THAT will be messing with my hormones so she doesnt want to do it. UGH we cant win huh!:wacko: That can be part of your problem. Get it checked out.
I take Turmeric, Fish oil, Flaxseed oil, Garlic, Glucosamine, calcium, Magnesium, L-Cysteine, L-methionine plus L-lysine, Vit E, Vit A, Milk thistle, and some others. I also take DHEA which there is controversy about, but, it works FOR ME, so i take it daily. Take charge of the things that just might help in your fight with this terrible illness hun:yes: WE are ALL here to help you do that!!! XXXXXXXXXXXXX
06-24-2009, 12:23 PM
Hey, i forgot, have you tried Proactive? Seriously! I NEVER thought i would try it because its an INFOMERCIAL, BUT, when i started getting sicker and sicker my skin also started doing things its NEVER done before. Nothing helped so i gave it a try!:yes: One of the BEST things i ever bought! Gee, Jessica Simpson was RIGHT!!! LOL:laugh:
06-24-2009, 12:28 PM
Thank you =) Looks like a have a list of things I should look up lol
I've been told by many people on here that I shouldnt be on the birth control but my rheumatologist is the one who told me I should be on birth control instead of my other acne pills. They are apparently really bad for people with lupus. I dont know why though. So Im not sure what to do becuz I dont know what they'll let me take and I have REALLY bad acne.
I know one of those things is something Im going to have to start taking soon, calcium. I recently started having really bad stomach problems and cant have any dairy products anymore. that also really sucks becuz I love cheese! lol
06-24-2009, 12:31 PM
I've thought about it but wasnt sure if it really did work lol
Maybe i'll look into that lol =)
06-24-2009, 12:34 PM
OHHHH, ME TOO!!!!! I love cheese as well!!!!! YUMMMY!!!! :yes: Yeah, i have IBS due to my illness so i have to be careful too. UGH:wacko: Ill tell you what though, i eat a ton of fiber DAILY and i am so REGULAR and i know it sounds silly but it HELPS!!!!! It helps to clean out your system and it keeps your tummy CALM AND FLAT!!!! Cant beat that! Thats POISON in our bodies, so it makes sense you will FEEL better to get it out!! The only way to do that is to EAT FRESH FRUITS and VEGES along with WHOLE GRAINS. Hey, it helps with my complexion too!!! No kidding! The vit A and E also help cell renewal for your skin! I seriously can tell from my complexion if i didnt eat as well the day before!:yes:
06-24-2009, 01:00 PM
Thanks for sharing all that with me =)
Im going to have to start eating better lol
06-24-2009, 02:37 PM
I know this sounds silly, but streatching works for me in the morning. It gets the blood flowing to my feet and hands. They hurt and are cold in the morning, after the stretching they are so much better. It does hurt at first (I believe in being honest, helps one prepare and handle better), but do the best you can for 5-10 minutes evey morning. I thought the doc was filling me with crap when she said to do this every day, rheumy too said to do it. They were right though, not a full relief from pain but ever so helpful.
Wishing you wellness and care. Hope you get to see the doc soon. I know you want a job and car soon, but now may just not be the time. Keep warm, we are all here for you.
06-25-2009, 08:56 AM
I try stretching out some mornings and just say forget it and lay there til I feel better. It takes effort to get me out of bed everyday lol
Im so pumped. Im going to a pool pretty much for the first time this summer lol My mom thinks the water will probably be warm enough for me finally :cute:
Maybe swimming will make me feel better. Someone told me it would be great for me and would make me not so sore. Lets hope =D
06-25-2009, 11:30 AM
Swimming is great, miss my pool. I felt so much better in it. Hopefully it will make you feel better. Let us know how it goes.
06-25-2009, 01:28 PM
YES!!!! Swim SWIM SWIM!!!!!! Its GREAT for people with lupus as well as many other things!!!!! YOu will FEEL so much better for it!!!! Stretch AFTER you swim a bit!!!! YOur body will be loosened up and your joints will be lubricated so it will be a safe time to do it!!! You should ALWAYS warm up your body BEFORE you stretch, otherwise there are higher risks for injury!!:wacko: Warm up at least 10 mins!!! Hope your day is going good!!!!
06-25-2009, 03:42 PM
I had alot of fun =D My knees hurt for awhile though but oh well lol
I reapplied sun screen so many times and still got sun. guess my sun block doesnt work to well
06-25-2009, 06:15 PM
Yeah, the sun is stronger than its ever been:wacko: You have to get the highest you can and like you said even then you still get sun. Its difficult not to get ANY. Im glad you had a nic etime though!!! WOO HOO!!:cute:
06-25-2009, 06:21 PM
I have tan lines for the first time in a long time! lol
My cheeks are SO red. I think I have that rash. I've never thought I did until recently when I started thinking about times when my cheeks would just randomly get really red and hot. I never thought anything about it lol And during the summer I always attributed it to sunburn, but thinking about it now it was never really a burn. Just red. So I dunno lol
06-25-2009, 06:24 PM
Yeah, me too!!!! I have the exact same experience with it. I also use to think it was burnt or what not untill i REALLy thought about it when i started getting MORE symptoms. Now i notice the shape and it burns at times and it feels extremely HOT.:wacko: I get it when i flare or just sometimes from the sun ,lighting ..........
06-25-2009, 06:27 PM
AWWWW, you're cute, your tan line!!:moon:Thats the closest thing i could find to a tan line pic!!!! LOL:laugh:
06-25-2009, 06:30 PM
I was thinking about it a couple weeks ago when I saw some pictures of people who have it and I thought to myself, thats just how my face used to look at the end of school last year. I would get so hot, my hands would be purple, and my cheeks were bright red and hot but I'd be taking of jackets and any other extra clothing I could at school and my friends kept makin a joke about it saying I was too young for hot flashes.lol
Then during the summer almost everytime I went to the pool I'd come home with bright red cheeks, and I would always make comments to my mom about how only my cheeks would get burnt lol and the redness would be gone by morning or a day later
Guess that makes more sense now. I need to mention that to my doctor lol
06-25-2009, 06:33 PM
Yeah hun, you make sure you tell your dr. Thats important info to give him. :cute:
06-25-2009, 06:36 PM
Last time I had an appointment with her I hadn't realized that. And to me a "rash" was like itchy and bumpy so I never thought of that as a rash til I actually decided to look up pictures of it
06-25-2009, 06:55 PM
Yeah me too!!!! I NEVER thought it was a RASH either, i was like you, i thought a "rash" had to be bumpy and itchy. Well, we were WRONG werent we!!! LOL:nah:
06-25-2009, 07:02 PM
Oh I know lol I never would have realized there was anything wrong with me becuz nothing stuck out until my fingers started turning purple ALL THE TIME lol
I just put up a pic of what my face looks like today. But my phone is horrible and thats all I have at the moment to take a pic. It sucks lol
06-25-2009, 07:06 PM
Yeah, i get purple hands AND feet! Carl thought my feet were dirty one day but i said "no honey, they are cold!" Lol:wideeyed:
06-25-2009, 07:10 PM
Mine started with my toes lol my mom freaked when they started turning purple and then soon after it started in my fingers. Now it happens more with my fingers than my toes lol
They all thought I was weird when I was standing on my toes for weeks before that trying to get feeling in them becuz they were numb all the time lol
06-25-2009, 07:14 PM
AWWWWWWW! That sounds so SAD!!!!!!
06-25-2009, 07:18 PM
It was just aggravating lol when you feel like your going to fall over becuz you cant feel your toes its not fun to have your family laughing at you thinking your weird lol
Have you ever walked around in shorts, a tshirt, and mittens? lol you get a few funny looks
06-26-2009, 08:41 AM
h im sorry to read you been a bit sick recently.Hope you begin to feel better soon.Yes.....that is a funny site.You should try bikini n bright pink wooly socks...thats what i do...i'll take a photo next time for a giggle lol....hiding my tyres on me belly.:) xxxxxxxxxx
06-26-2009, 08:45 AM
I would love to see that lol maybe thats what I'll wear to the pool today :-)
My mom just called my doctor this morning and my doctor is supposed to be calling back soon to maybe make an appointment =D Thank god lol
06-26-2009, 08:51 AM
Oh thats good news.Yes try it....even if it doesnt work,it hides the purple blue toes n feet...thats why i do it and then sometimes they do warm up. Ive been having terrible leg n foot cramps lately...feels like the invisible man has just axed em....OUCH. On pills now so should work soon. Good luck with the appointment.How did the date go? If you've told me...im avin a foggy n snowy day :)xxx
06-26-2009, 01:20 PM
I sit in the shade covered up when Im at the pool lol sucks. I hope that medicine helps with your leg =)
I cant remember if I told you about that date lol it went really good =D he's my boyfriend now! lol =D
06-26-2009, 01:46 PM
Sorry RITZBIT...that does suck being bundled up like that with the air on. I send you hugs and love girl! Try telling your parents that your hurting and not feeling well and perhaps they can find a happy medium with the air. Can you close the vents if you all have central air/heating? Might be an option. Just take the time you need and be verbal but not insulting/mean to your parents as you convey what and how you feel right now.
06-26-2009, 03:55 PM
Of course you did...see brain cells sleeping told you lol. Sorry about that i do take it in what you say.....just forget the basics n sound so ignorant at times.Think i need a fluffy duster to go into my ears n dust out some cobwebs at times.xxxxxxxxxxxxxxxxxxxxx
06-26-2009, 07:06 PM
Lol I know what you mean. I forget things right after someone says something to me lol :laugh:
I cant wait to sleep tonight! Oh gosh I am soooooooooo tired lol I think I've been out and about in the sunshine a bit too much the past few days lol
06-27-2009, 03:01 PM
Boy me too guys!!!! I FORGET right AFTER im told too!!!! MY kids laugh alot or get frustrated alot with me!!! LOL:laugh:
06-27-2009, 09:00 PM
Thats how my mom gets with me lol Im like sorry I didnt even remember you even told me that