View Full Version : Bad Week

01-22-2010, 12:08 PM
I've felt out of wack all week. especially today. I've been all shaky and not able to pay attention and just on the verge of tears becuz something just doesnt feel right but I cant like pin point what it is you know what I mean? My whole body just feels tired and weak and like its about to give out. Its like walking around in slow motion. I left school early today becuz I could barely function just sitting in class writing notess. My hands were shaking and I couldn remember what I was typing. and right now im trying to type this with one hand becuz my left wrist is to weak to really lift it up off my lap. i dont know why i got so crappy all the sudden =( i swear it started when i started up my meds again. i hate it. i felt like everyone was looking at my funny when i was getting ready to leave becuz i could barely walk becuz my legs were shaking soo bad.


01-22-2010, 02:15 PM
Aww im so sorry to hear your feeling not good atm, it completely sucks when our bodies come under attack like that! i offer you lots of gentle cyber hugs and hope that you get some releife very soon!


01-22-2010, 03:13 PM
Thank you =/

01-22-2010, 11:26 PM
Sounds like a pretty bad flare up to me. I hope it goes away real soon. Hang in there and God bless. Jim.

01-23-2010, 01:28 AM
I know exactly how you're feeling. This last flare of mine is going pretty much the same way. All we can do os wait it out or talk to the Docs. I would mention either way.


Remember - Live Life to the best of your ability.

St Matthews Gospel: (paraphased by mother Teresa) I know the Lord does not give me more than I can handle, I just wish He didn't trust me so much.

01-23-2010, 08:07 AM
I already had an appointment for the 2nd but my mom said that if I dont feel better by Monday she's going to try to move my appointment to this week. The best part is that I have to work today. Ugh =( I would call in but I havent worked in 2 weeks and when I call in they dont give me any hours for weeks. 7 hours of standing does not sound like fun right now. Im probably going to ask to just do something easy today so I dont mess up and get fired. Cuz that would be my luck. My arms and legs dont feel so weak right now though so maybe I'll be ok. I guess I'll just have to wait and see =/

01-23-2010, 08:41 AM
Does your employer know that you have lupus? I understand that he/she needs to have a productive employee however they should be sympethetic to your illness, it is through no fault of yours that you have this awfull disease. I certainly hope that things start looking up for you. Try to smile: I know it seems impossible at times, we have all been there. I wish you the best and hope you start feeling better.God bless. Jim

01-23-2010, 09:07 AM
I've explained to them that I have an AI disease but just kind of left it at that. The only reason I told them that is becuz they used to ask me kind of often to get into the freezer and I had to explain that I couldnt and they were like I dont believe that. My maneger Billy I think hates me. And he isn't one to take "excuses". I gave him a note from Childrens last time I was late to work becuz of an appointment though so he should realize that Im not just full of crap.

01-23-2010, 09:58 AM
Hey there -
Oh my gosh - my heart breaks for you , but I have to say this is why it is SO IMPORTANT for me to stay connected herel. I also find that "sudden onset" SO CONFUSING - even though it happens over and over. I am constantly saying to my husband "What is happening? I dont know whats going on..." And he will gently say "Because you have a disease honey, its unpredictable" Its almost like once a flare is over, I forget it ever happened! Then, when it recurs, Im like Whats this? Sounds crazy, but its what happpens.
My flare this time around - aslong with some severe neuro issues - is VERY much like you described: WEAKNESS, horrible weakness, like each arm and leg has a 50 lb weight on it. And SO foggy, confused, ou-of-it feeling. Oh my word - I really hate it. But what I appreciate is that you wont really find these types of symptoms on any medical website - not in detail like this. And because we have this site, we know that this can be a part of a lupus flare...we realize we are not going crazy.
I TRULY hope you find time to rest. I have been, and my symptoms STILL got worse, to the point I had to go to ER last night. I felt like my body was dying out...got a script for high dose steriods - uugh - but good thing I went: My EKG was abnormal and my O2 stats dropped to 94 when I walked less than 10 feet. I KNEW I was weak, but going there ensured that I wasnt in danger YET, and got me the treatment I needed.
I pray you do the same honey.
I wil be praying for you .

Prayers coming,

01-23-2010, 10:12 AM
My EKG was abnormal and my O2 stats dropped to 94 when I walked less than 10 feet. I KNEW I was weak, but going there ensured that I wasnt in danger YET, and got me the treatment I needed.

This might sound like a dumb question but what does all that mean?

Im sorry you aren't feeling well either. Hopefully things get better. I guess time will tell.

01-23-2010, 06:01 PM
No question is ever dumb honey - there is alot going on with us, and its very confusingl. Sorry if I made it MORE confusing - lol. Basically, I have had the SAME symptoms as you for a few weeks now, without improvement. Extremely weak, short of breath, really brain "foggy", cant concentrate, etc. And - everyitme I exerted myself in te slightest way - getting up to get something to drink, anything - I felt WORSE - more weak, dizzy etc.
Last night I felt sharp pain in my lower back (bottom of my lungs) and also some sharp pain in my chest - especially breathing in. I KNEW this had to be checked out. They ran an EKG - which measures how well, often - your heart is beating. This test was abnormal - my heart was not beating correctly due to inflammation.
The "O2" thing I talked about was a test used to measure the amount of oxygen being absorbed by your body - a "clip" is put on your finger and it measures your O2 saturation level. This should almost ALWAYS read 100 (maybe slightly below). Your body should always be processing 100% oxygen. When this number is lowered, it is a sign that the red blood cells - which carry oxygen throughout the body- are not functioning properly and/or your lungs arnt working to capacity.
.Now we know that we should have about the same "level" (close to 100%) whether youre sitting down or walking. Last night, mine was not. Just sitting down it was 97(not TOO bad, but not great either). However, the doctor wanted to see the level AFTER I had walked a little bit. Mine dropped quickly to low 90s...this meant my lungs were not putting out enough oxygen to the rest of my body once I started walking around. THIS is what caused the severe weakness, dizziness, etc.
THese are somewhat common complocations from lupus. Inflammation affects the way the organs function. The ER doc said, (and I quote) you need a "bi*&h slap" dose of prednisone to get all this inflammation under control. He gave me 60mg right then and there and, wouldnt you know it, at 3AM I woke up and felt BETTER. Not in any way Great, but I FELT the difference. The pressure in my whole body felt less. It was amazing. I took 2nd dose this morning, and sadly have been WIRED out of my mind since. blah blah blah

The purpose of my post was this - sudden weakness, intense brain fog, fatigue, etc is a common symptom of a flare. However, if it continues, it REALLY needs to be checked out and - if necessary - treated with (usually) prednisone. You were talking about having to go to work and school, etc and its important that you listen to your body, get the rest that is SO IMPORTANT (I know its hard whedn you have important responsibilities, believe me, I have two kids who need their Mommy), and get stuff checked out if the symptoms continue or get worse.
WOW - I wrote SO LONG - Aaaahhhh!!! Its the prednisone!!!! Itll setlle down in a day or so....
I hope this helps

01-23-2010, 08:51 PM
Im feeling a little better today. Definately not as weak as yesterday but still not all the way there. My hands are all puffy today =( and my knees hurt. And I havent had that happen in months. I can actually stand up today though. My head kills though, even after taking my magic Excedrin which usually helps a lot. Im hoping some sleep will help out some. Im glad to hear that you're feeling better today! Do you think my mom and I should make a call to my doctor or not? Im supposed to go on Feb. 2nd which isnt too far away so I dont know if I should bump up the appointment

01-24-2010, 09:08 AM
Glad you feel a bit better as well. I LOVE Excedrin!! LOL - We have a lot in common. Are you on any lupus treatment? Plaquenil/Prednisone? I wouldnt guess to tell you when to go to doc - thats a decision you have to make. But if youre haeing ymptoms that are out of the ordinary for you - I would go see him. You want each flare seen by a doc particularly if sym are different than usual. you may need a prednisone taper to get things under control. But like I said - TOTALLY up to you. I have a history of ignoring certain things, not going to doc, and then regretting it, becasue its not in my medical file for future flares.
Good luck honey - hope your wellness improves!

01-24-2010, 09:17 AM
Im on plaquenil, prednisone, cellcept, and norvasc. I just started taking them again about a week and a half ago. Last time I was on all this medicine was when I was feeling like this which is why I blame the meds and everyone likes to tell me "they are supposed to make you feel better not worse" and I tell them thats obviously not whats happening though becuz this happens whenever Im on all this crap. So something needs to change. But my moms making me take it again.

01-24-2010, 01:42 PM
Ritz, please make sure that you relay how you feel on all this medicine to your doctor. I know when my dr. tried to taper me off prednisone he put me on cellcept and I had some pretty severe reactions from it. Good luck and God bless. Jim.

01-24-2010, 04:06 PM
I honestly felt better gettin onto the cellcept. I really think its the plaquenil making me feel bad and noone wants to listen to me becuz all they say is "plaquenil is your friend" and "you'll probably just stay on this the rest of your life" and I feel better when I just up and stop taking it myself. Not like actually better but better than I feel while Im on it. And the reason Im so skeptical of my doctors confidence in it is becuz the first time she ever spoke to me about it she explained that they dont even really know what it does in the case of people with lupus they just know that it usually helps. If they dont even know for sure what its doing to my body in the first place I dont know why they can be so quick to say that its not whats making me feel bad.

Im feelin bad again today. arms and legs are really weak feelin again and my head felt a mess earlier =/ is it weird that I could feel my pulse everywhere? cuz I felt pretty weird.

01-24-2010, 10:28 PM
I wish that you felt better thats for sure! I have felt that feeling like my heart is beating and I can feel it all through my body, yes it really feels weird. I would have to say from my experiences that with the weekness, shakyness, headaches and every thing else is a bad flare. I have to ask if you bruise easily? When I was on the cell cept I developed horrible headaches and I bruised very easily, I have never been one to bruise easily, I also started having nautious feelings and I also seemed to get me more depressed. Have you checked out the thead about the raw food diet? I tell you I have been on it for going on five weeks and at this point I am feeling great. I am in the process of tapering off my prednisone so as this process goes on and I continue to feel this good it is definetly worth it for me, it might be some thing to consider. I did talk to my dr. about the diet and he was excited that I was giving it a try and that the LFA was looking at the medeteranian diet, which he said was very similar to the raw food diet, as a possible treatment for lupus patients. do a little research on it and see what you think. I wish you the best and pray that you get to feeling better. God bless. Jim.

01-25-2010, 12:24 AM
... I really think its the plaquenil making me feel bad and noone wants to listen to me becuz all they say is "plaquenil is your friend" and "you'll probably just stay on this the rest of your life" and I feel better when I just up and stop taking it myself. ...


I just started re-reading Andrew Weil's bestseller, SPAM REDACTED, and in the first chapter he talks about how treating symptoms, like pharmaceutical-based medicine does, has a tendency to force the condition deeper into the body.

He gave the example of a patient with scleroderma, which is an auto-immune condition where the skin becomes hard. This patient treated the problematic skin spots with a steroid cream, and the problem went away.

After a few years this patient started to develop hardening again, but this time in her lungs. And there wasn't much the doctors could do...

It's not good enough to manage a condition with pharmaceuticals. Lupus and Raynaud's and any other adverse condition are never caused by failing to get enough prednisone or plaquenil in your daily rations. Every patient has a unique set of reasons why their body attacks itself. If those original causes are addressed, the body will take care of itself.

Finding the right response to the original causes (most of which are hard to determine) can take some period of trial...

What was going on in your life when your symptoms started?

Dr. Weil's book has a good portion available in the preview at google books, or you can find a copy at just about any library or used book store.

After you read that, pick up a copy of Donna Eden's Energy Medicine, and work on releasing triple warmer.

James Knochel

01-25-2010, 06:09 AM
I just wish I wasnt put on something that I dont want to be on. Before all my meds I basically NEVER had real joint problems. My two big complaints were being reallyyyy tired and my Raynauds. Since this summer I have felt like crap. Swelling up, joints hurting, and being even more tired. Not all the time but obviously more often. When all that started up all I was on was the Plaquenil and Norvasc. Thats why I started the prednisone, and why Im now on cellcept. I stopped taking those meds for a few months and felt better physically but got really moody and then started getting really bad headaches. So is it my meds. or the lupus or am I just overthinking everything?

I'll definately look into that diet and reading that book. Thanks