Author Topic: One day bad next day good  (Read 2432 times)

namakb

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One day bad next day good
« on: June 30, 2010, 07:58:51 PM »
Has anyone had it where you feel bad one day then almost normal the next. Yesterday my eyes really bothered me, my nose & throat were dry. Just a bad day. Today I feel almost normal except that this evening my eyes and nose are bothering me a bit. I had gone about a week were I almost forgot about Sjogrens. Then about 5 days where eyes, nose, mouth all kept taking turns bothering me. I love those days where I almost forget about it.

tomsmom

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Re: One day bad next day good
« Reply #1 on: June 30, 2010, 08:09:29 PM »
I seem to be having those days too.  One day I'll feel like death warmed over and the next I'm playing T ball outside with my son.  I'm sure grateful for the T ball days when they come around. :)
Myasthenia Gravis, Secondary Sjogren's Syndrome, Raynauds, Graves Disease, Hypertension, Hiatal Hernia.

Meds: Toprol XL, Plaquenil, Mestinon, Protonix, Fish Oil, Vitamin D
34 yr old stay at home mommy

Prairie Gal

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Re: One day bad next day good
« Reply #2 on: June 30, 2010, 09:21:24 PM »
Sounds like a normal Sjogren's "rollercoaster ride" to me.  For quite a while, I tried to figure out if anything I did made some days worse than others, but there was no rhyme or reason that I could find.  I've given up and take whatever comes.  My fatigue is not as overpowering so much lately, and I hope that continues -- for a while, at least.

Prairie gal
72 y/o F; SjS; Raynaud's; Lichen Sclerosus; Prilosec; Flexeril; Clobetasol; Lisinopril. ToCo-Q 10; MegaEFA; Black Currant seed oil; 5-HTP; SAM-e; Slo-Mg; Vit D3; Calcium; Aleve; 81 mg aspirin; multi-vitamin/mineral; Vit. B1,3, 6 & 12.

mom16

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Re: One day bad next day good
« Reply #3 on: June 30, 2010, 09:52:36 PM »
I feel that way too, glad to hear I'm not the only one.  When I have a good day I often wonder if I'm making more out of this than necessary, but then BAM I get hit with a string of bad days where it hurts to even walk and I realize this is most definitely very real and instead of waiting for the pain to come back I should celebrate the days I do feel somewhat normal.  Now that I'm off for the summer and not on my feet so much from teaching I'm hoping I'll have more good days because I'm resting more. So far I've had two in a row, yeah! 

 
Primary SJS with small fiber neuropathy.  Plaquenil, Neurontin,  and Cymbalta
Female-46

BonusMom

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Re: One day bad next day good
« Reply #4 on: June 30, 2010, 10:01:12 PM »
You're definitely not alone. With the ups and downs/good days and bad days, it really does make one wonder if it's all in one's head like the medical professionals insinuate.  Trust me and others on the board--it's not all in your head. Sjogren's is very much real and symptoms are known to wax and wane.

Hang in there!

binx

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Re: One day bad next day good
« Reply #5 on: June 30, 2010, 11:27:55 PM »
goodness, this is the story of my life.  just when i think i can't take anymore, i get a bit of a break and feel halfway normal.  then when i think i might have turned a corner and can see a light at the end of the tunnel, i get body slammed back into my sjogren's reality.

i am sorry everyone has to deal with this, but it is certainly a comfort to know i am not alone.

best wishes,
binx

Babs659

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Re: One day bad next day good
« Reply #6 on: July 01, 2010, 06:40:57 AM »
My husband and I spend a lot of time wondering what I did to cause a flare.  Maybe I overdid it over the weekend, maybe I shouldn't have gone shopping after work, it goes on and on.  At least he is a partner to me and not trying to minimize it.  He can certainly tell when I'm having a good day, so he knows I'm not "playing it up" when I feel crummy. :P
52 year old female with Sjs, Hashimoto's, hypertension, osteopenia, rosacea, Raynaud's, GERD, ANA homogenous 1:1280.  Plaquenil, Synthroid, Evoxac, Aciphex, Quinipril, Vit D.

Carolina

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Re: One day bad next day good
« Reply #7 on: July 01, 2010, 06:52:57 AM »
Great topic!

I've learned to point out to dearest husband, on my good days, that I'm feeling better, peppier, and to draw to his attention that I'm NOT complaining.

I think it helps him to understand that I'm NOT choosing to 'play it up' when I'm feeling bad, which is bound to come around again on the Merry Go Round of Sjogren's.

He's really beginning to get the picture, and he's more and more supportive.

As much as I KNOW that we can't allow other people to determine  our worth or validate us, it is priceless to me that he 'gets it' at last.

Now when I am having problems, he explains exactly how my immune system is sabotaging me, and that at many levels I'm helpless to change the ups and downs.

He's much more patient with my pace of walking.  When I get out of the car, for example, I have to stand for a few seconds to be sure I'm not too dizzy to start walking (autonomic neuropathy causes my blood pressure to fall when I stand up).   And then I will never walk fast because I have too much pain and I'm too unsteady to risk rushing since my feet and legs don't help me balance, nor do my inner ears (I'm going deaf from nerve damage due to Sjogren's).

If I medications don't slow or stop the progression (seeing the neurologist week after next), I'm sure to be using a walker one of these days.
But now, I take my husband's arm quite often, and he is gracious and gentle with me.

So we've come a looooooooong way, dear friends.

I know I am fortunate in so many ways, and I'm very grateful.

I am still dumbfounded at those of you who develop this early in life, and have so many milestones to achieve with the disease thrown on top!

You have my love and support, all of you.

Kisses

Carolina
Female-72-CVID-pSJS-IC-Periph.Neuro.-CAD-Osteoarthritis-Auto.Neuro-SFN-Anemia-Copper Def-Raynaud's Blepharitis,Meniere's/Deafness-Hiatal Hernia-IVIG-Gamunex-Medrol-Neurontin,Atenolol-Pilocarpine-Copper-Cymbalta-Nasonex-Lipitor-Estrogel-B-12-Iron-A Lipoic-D-Mannose-NAC-Co-Q10-Turmeric-Aleve-D3-Omega3

Blue Kat

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Re: One day bad next day good
« Reply #8 on: July 01, 2010, 05:35:39 PM »
While I seem to be having more bad than good days lately, I do know what you mean.  This is one reason it's so hard to commit to anything, social-wise, because we don't know how we're going to feel on any given day.

jordozmom

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Re: One day bad next day good
« Reply #9 on: July 02, 2010, 02:16:16 PM »
OMG - I know EXACTLY how you feel.  One day you feel great, the next you feel awful! 

On bad days I'm like Prairie Gal - I sit and think "Now what did I do yesterday to cause this?  Did I overdo it?  Was it something I ate/drank/did/took?" 

I constantly find myself trying to figure out the "formula" (as I call it) for my good days (Ok why do I feel good today - what did I do differently?) or my bad days (Ok what did I do yesterday that I feel so lousy today - what did I do differently?)

But the answer is you do nothing differently - it is just the disease.  And it makes it very hard to plan anything because you never know how you are going to feel.  On Tuesday I might feel great and agree to do a cookout with another family on Saturday, then come Saturday I'm half dead - sore and achey and fatigued - and I don't want to do anything!  This either results in cancelling or just being miserable throughout the whole thing.

And sometimes I actually go from feeling great to feeling terrible in just a matter of hours.  I'll get up and think "I'm going to clean out the closet today."  Then halfway through it is like someone just let the air out of me. So then I have to drop everything and lay down.  Sometimes it may be days before I can get back to the closet again.  I have a lot of half-done projects in my home!

What is funny is that there are times where I will do something where I just KNOW that I'm going to be dead the next day.  But then there are times where all I've done is the usual - get up and go to work, dinner, laundry, etc. - and I still wake up the next day feeling terrible. 

It's a moving target, for sure.  Good luck to you!
SJS, Raynauds, Distal Renal Tubular Acidosis, RA symptoms, peripheral neuropathy symptoms
Plaquenil, Salagen, Sodium Bicarb, Klor-Con, Ambien, Methotrexate, COQ-10, VitD, Multivitamin, Omega 3, B12

Rhonda

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Re: One day bad next day good
« Reply #10 on: July 03, 2010, 03:50:45 PM »
Same here for me.  Some days are great - some are awful.  I find if I do activities where I am up and about more, I have a bad day the next day or two.  It's weird how I can sit around and feel pretty good - but let me get up and walk around.... I am soon reminded I have SJS.

Prairie Gal

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Re: One day bad next day good
« Reply #11 on: July 03, 2010, 06:27:31 PM »
I have learned that if I do too much for 2 days running, on the third day I'm like a wet noodle.   I've learned to chug along at a slower pace than in my previous life -- before Sjogren's, I mean.
Prairie gal
72 y/o F; SjS; Raynaud's; Lichen Sclerosus; Prilosec; Flexeril; Clobetasol; Lisinopril. ToCo-Q 10; MegaEFA; Black Currant seed oil; 5-HTP; SAM-e; Slo-Mg; Vit D3; Calcium; Aleve; 81 mg aspirin; multi-vitamin/mineral; Vit. B1,3, 6 & 12.

LeoLady

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Re: One day bad next day good
« Reply #12 on: July 04, 2010, 01:48:12 AM »
Hmmm... Before Sjogren's - that's B.S.  Fitting...  ;)

LeoLady

Rhonda

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Re: One day bad next day good
« Reply #13 on: July 04, 2010, 02:03:08 PM »
Cute Leo Lady!!!!   ;D  I like that!

jordozmom

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Re: One day bad next day good
« Reply #14 on: July 08, 2010, 10:54:38 AM »
Ha - B.S. - too funny!!!
SJS, Raynauds, Distal Renal Tubular Acidosis, RA symptoms, peripheral neuropathy symptoms
Plaquenil, Salagen, Sodium Bicarb, Klor-Con, Ambien, Methotrexate, COQ-10, VitD, Multivitamin, Omega 3, B12