Energy left after I took a nice warm shower....

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sunshinesyl
Regular Member


Date Joined Apr 2006
Total Posts : 169
   Posted 8/1/2008 2:03 PM (GMT -7)   
Yesterday morning woke up feeling good, planned on cleaning kitchen but as soon as I came out of shower, my body just totally shut down.  I could not move, arms and legs felt real heavy and in so much muscle/bone pain.  I just layed on sofa w/towel on head, dreaded taking it off to brush hair.  My 19yr son, asked me if i was ok, I said I can hardly move, he wanted to make me breakfast and insisted I eat but couldn't cause stomach pain was coming on too.  I hadn't felt this bad since I last wrkd in April 08'.  I layed all day till 1/2 before HB came home 4:30.  I didn't want him to see me like this.  I felt like I scared my son, usually I go to my room when I'm feeling real bad. 
I'm so tired of this illness, I wish it ould go away, I want to be able to walk w/out pain, I want to so badly just go to a swap meet and just look at all the diff. things there and maybe but something intresting.  But can't due to the Sun makes me so weak and in pain.
 
Sorry if just rambling, but today is a good day, I can move better today.
 
Sunshinesyl 
Syl


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 8/1/2008 3:32 PM (GMT -7)   
Hi Syl,
 
Sorry you had such a hard day.  You know. It's really common for us to have trouble after taking a hot or even a fairly warm shower. Something about the heat that just sucks the life right out of us.  I personally like a luke warm shower, that is just barely on the warm side.  Same with my baths.  I have way more energy and I feel just fine if the water temp is cool. 
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 8/2/2008 7:34 AM (GMT -7)   
((((Syl)))). I think it's depressing to crash right after a time of feeling good because you have that hope that that good feeling will last for a while, but it's also hard to feel really rotten for a long period of time too. I have the same experience as ginny and I also find that any kind of heat makes my symptoms worse. I even come out of the shower with rashes if the water is too warm.

How long has it been since you have seen your rheumy? I wonder if your rheumy needs to take a look at your meds to see if anything needs to be changed to help you feel better - you deserve a better quality of life than you have right now. Before I started seeing my current rheumy I remember feeling a lot like you described and I just resigned myself to feeling awful most of the time. Finally I decided to switch rheumies and the one I have now has helped to improve the quality of my life.

Hang in there and know that we are here for you.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

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Co-Moderator: Lupus and CFS Forums



Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7017
   Posted 8/2/2008 7:58 AM (GMT -7)   
I think this is another lupus related symptom that must depend on the person.

I usually wake up feeling pretty awful and draggy, but if I make it into a long, hot shower I can motor into the day without too much trouble. Without that shower, I'm groggy, achy, and very low energy all day.

Not to be confused with being outside in 94 degree heat & 85% humidity - that wears me down for sure! I actually planned poorly and got stuck in that 3 hours on Tuesday -- now it's Saturday and I'm still dragging. I think it played with my core body temperature as I've mostly had a low-grade fever since then.

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone(was 15mg, now 8mg), Cellcept, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


chelsedge
New Member


Date Joined May 2008
Total Posts : 5
   Posted 8/2/2008 9:18 AM (GMT -7)   

Hi all.  Just wanted to give you some food for thought.  Lupus is one of a variety of autoimmune diseases associated with a serious condition of the thyroid gland called hypothyroidism (low functioning thyroid). 

I've learned this because I have been diagnosed with hypothyroidism and so have been educating myself about it.  I don't have Lupus but do have other awful symptoms of hypothyroidism including shortness of breath, fatigue, difficulty swallowing, insomnia, recurrent infections, anxiety and depression.

I'm not saying those of you on this site all got Lupus due to your thyroids malfunctioning, but it is a possibility.  The thing is, hypothyroidism can be treated very effectively, which could in turn improve your Lupus symptoms, so it might be worth your while to see an endocrinologist who will do the appropriate testing of your blood to check for thyroid problems.  An effective thyroid blood panel should check the following levels: TSH, Free T3, Free T4, Reverse T3, anti-thyroglobulin antibodies & anti-thyroid peroxidase antibodies.

I wish you all the best!

 


Chels


jessierose
Regular Member


Date Joined Jan 2008
Total Posts : 102
   Posted 8/2/2008 4:17 PM (GMT -7)   
Im sorry you having such a bad day. I have a question can you explain your stomach pain to me I get these horrible stomach aches I cant stand only comfortable lying down. Just wondering  if its the same thing. I hope you are feeling better soon.
Jessie
JessieRose
 
 
SLE, APS, Food Allergies, Gerd, Migrains
Prilosec, zoloft, Plaquenil, asprin, predisone, cellcept..


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 8/2/2008 5:28 PM (GMT -7)   
I have to say that it takes me a while to recuperate after I take my morning bath. I feel like i'm 90 years old instead of 36! I hope you feel better soon! God Bless You, Judy

sunshinesyl
Regular Member


Date Joined Apr 2006
Total Posts : 169
   Posted 8/3/2008 1:56 PM (GMT -7)   
Hi everyone, thank's for responding. 
 jessierose- My stomach pain I've had since 2004, because of changes in ins/then no ins/then getting new ins. (which I'm not happy, need refrerells for everthing, its terrible), 1st Primary DR. Dx me w/IBS on 1st visit, I said I need to a Gastro Dr., she just shrugged it off..I changed to a new DR., this one gave me a referrell to Gastro, had an Endoscopy done b4 I seen GI DR, last week, on day of procedure the tech asked me what issues I had and he said this will not show why you are having stomach problems...I thought then why did Primary DR. have me take this test, b4 seeing GI DR.  Test results were normal, biopsy normal.  I see GI dr. on last week of Aug.
 
My stomach pain has gotten worst last 2yrs, I have diarreah almost daily w/severe cramping of stomach area, gets really bad to the point where I feel like I will pass out.  But I won't go to ER cause I hate it there.Stomach feels like something is twisting inside and most of the time followed by Diarreah.  There r times when the pain will be below my breast down below bellybutton but then no Diarreah just pain or false runs to bathroom.  I had asked the 1st primary if I could please have a Disability plaque for car she denied me saying she only gave it for serious heart conditions.
My stomach pain will wake me up and is so strong, I feel its worse than Labor pains' for me, Believe me I know I've had 4 kids all natural, 1 breach..ouch...hurts just thinking about it, I remember nurse came in after the birth, I could hear u all the way down the hall....
 
I wonder is this how IBS feels? I don't know. This is why I insisted I see a GI DR.
oh, I just remebered there are some days whee I no bowel movement for 7-8 days, its just terrible because my stomach will sometimes look big and I hate this!! Also, my Birthday is on Tues, I will be the Big Forty!!! I think I look good for being forty, heehee...I think they say 40 is the new 30, (wish my body would hear that).
 
 
 


Syl

Post Edited (sunshinesyl) : 8/3/2008 3:12:46 PM (GMT-6)


jessierose
Regular Member


Date Joined Jan 2008
Total Posts : 102
   Posted 8/3/2008 2:08 PM (GMT -7)   
wow that sounds horrible Im sorry your having all this pain. I hope you feel better soon thank you for responding .
Jessie
JessieRose
 
 
SLE, APS, Food Allergies, Gerd, Migrains
Prilosec, zoloft, Plaquenil, asprin, predisone, cellcept..


Jenny S.
Regular Member


Date Joined Oct 2007
Total Posts : 80
   Posted 8/4/2008 9:24 AM (GMT -7)   
Sly,

I have the same experience after taking a warm, morning shower. In fact, I've been taking evening baths so that I go straight to bed afterward to recover. Sounds silly, but bathing at night & then sleeping really helps my AM energy level.

Jenny

~Jenny~

I have Lupus ... Lupus doesn't have me. 

Dx: Raynaud's(2000)·Lupus(2001)

Rx: Pletal 100mg·Norvasc 10mg·Prednisone 5mg·Plaquenil 400mg

  


sunshinesyl
Regular Member


Date Joined Apr 2006
Total Posts : 169
   Posted 8/4/2008 11:52 AM (GMT -7)   
Hi, taking a shower b4 bedtime sounds good, I will try it. I hope it puts me to sleep because I have a hard time falling asleeep, I only sleep about 3hrs, if I'm lucky not to be waken up w/stomach pain.
It's weird because I feel sleepy but I don't sleep, HB wakes up at 4:20am leaves at 4:45am, so I turn off T.V. by 9--10pm, can't sleep just tossing and turning, feel sorry for HB but he doesn't say anything.
Finally most of time I fall asleep by 1am or so. I don't nap in day. DR. did prescribe Ambiem, think thats the right name, I have to pick up this wk. Has anyone tried it?
Syl


suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 8/9/2008 11:05 AM (GMT -7)   

Hi! All!

Me, too. I learned the hard way to take my warm, oh so lovely not to be cold, bath or shower at bedtime. I even put a toothbrush and toothpaste on the shower rack because I was falling into bed too weak to stand at the sink or get up again to brush my teeth! I love a hot soak with eucalyptus salts....... and one exceptionally bad day, got in the tub as soon as I got up. And, literally, couldn't get out. My wrists AND my knees, AND my shoulders were all inflamed and I could not stand up to save my life. Thank God I did have the phone within reach, (a promise to HB because I was falling alot), but a 911 call for a beached whale???? My pride wouldn't let me call. So, after a good cry, I drained the water, put a towel on the edge and rolled over onto the bathroom floor. Where I lay, for almost a week, probably two, with my cat AND dog nuzzling over me wondering what all the fun was about............ life with lupus,

suetoo

p.s. I wonder if stomach pain and diarrhea could be connected to mucosal lining inflammation. My rare, thank God, bouts of diarrhea are accompanyied by lots of mucus, cramping, and then bloody mucus before it's over. Usually, by then, I am on a high dose prednisone course, the 40/30/20/10mg for a months worth for high blood pressure and falling, and my cyclic twice yearly bout of pneumonia.

God knows, even if I don't....
CNS Lupus 2005, APS
Meds: Plaquenil, Neurontin, Thyroid, Voltaren, Aspirin, Atenolol and Norvasc, Prednisone prn.

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