Mornings are so tough!

Are mornings difficult for you folks? When I get out of bed I walk hunched over and feel stiff, sore, and so tired. It's so hard to stand up. My joints feel like they are on fire and it takes two or three hours for my body and mind to start working normally. Today is worse than ever, but thankfully I don't have anything I have to do except go to the urologist at 3:00. I feel as though I waste so much time. I use this time to catch up with friends and the news but sometimes, like today, it's hard to get that positive attitude going.

Weekends are busy times for me because my hubby's home and our little granddaughters spend Sundays with us, and you moms with little kids know that you don't get much rest when you have an 8 & 9 year old running around needing to be fed and entertained, plus I love being with them. But boy does it wear me out. How on earth do you working moms handle this disease???

I've had to stop my Celebrex because it's chewing up my stomach, and I guess that's one of the reasons my body is complaining so much. I see my rheumy tomorrow and maybe she'll have a suggestion for me. I can't take imuran, cellcept (which I loved), or methotrexate. I'm not sure what's left.

Well, enough of this pity party. If any of you have any secret remedies, I'd love to hear them.

Blessings,

Pat

It is at night for me... Since I have stopped working, I am much better... I do have bouts of pain... The week of Christmas I was pretty bad.. I just do too much... my family was here from Oklahoma.. Our daughter graduated from college, we had two birthdays and Christmas... and we went to see the Rockettes too.. that was just too much... It took me a whole week to get over it and my brain is still not back....

Hey girlfriend I'm right there with ya in the mornings. I get out of bed and feel like I'm wearing concrete shoes. Like someone is going to throw me in with the fishes lol. My breathing is bad in the morning too. trying to hold on to the counter and set up the coffee pot with one hand. Not a pretty sight. Today I called my home health care worker and she's coming over later because I was too wiped out for her to come over earlier. That's bad when I'm to bad off to have the person that does all the work come over.

Isn't the metho.,imuran,cellcept for the lupus like the plaquenil? You're right what else is there? I certainly can't say that I ever do anything that takes away my energy. I usually can do somthing for 30 mins and have to go set back down. . All though I would love to see my grandbabies from time to time. They live in Tenn. though so that won't happen.

If that is the best you can do for a pitty party you really need to work on the moaning and groaning. You're not very good at it! You need to add a couple of these . Now see doesn't that look more like a pitty party? You just need to take some tips from me. I'm a pro at whining on here.

I'm totally looking forward to seeing you so don't get too tired. Save up some energy so we can go get in trouble or somthing.

love ya

carol

(((HUGS))))

Wanted to let you know that I am thinking of you. You may have already considered this, but have you changed what you are eating? I wouldn't wish my inability to handle most foods on anyone, but I will say that I have found a definite connection between what I eat and the severity of my symptoms. Certain foods make my joints swell up worse than ever - and getting up and about in the morning is a nightmare. Again, it's just something to consider.

Hope you find some relief soon.

(((( Pat )))) oh I hope it's not RA on top of lupus, fibro, etc. Bless your heart. Mornings are always rough for me, I wait until the very last second to get out of bed and I move kinda slow. One thing that helps me is I take a muscle relaxer every night (Flexerill) it helps a lot with the morning stiffness and then of course the hot shower.

Going off the celebrex has probably caused this flare, I've been there and I hope this flare ends quickly! I have tried several different NSAIDS, couldn't take celebrex and Piroxicam is the only one that works well for me. Maybe between a new NSAIDS and flexerill or some kind of muscle relaxer would help?!?!? I don't know hun I just hope you feel better soon! You are in my thoughts and prayers.

Hi All,

I used to be able to get ready in no time flat it seemed, I used to laugh at my husband because it seemed I could get ready before him most days. I have never been one to fiddle faddle around, when I have to get something done, I'm on it. I usually wear my hair short cause I don't like to have to mess with curling it and it USED to be think, so much for that these days, between the lupus and the meds I'm thinning quite fast. It's probably pay back for all the harassment I gave my husband for his recedding hair line, right? LOL. Anyway, these days I am always running late, no matter how much time I set aside for myself to get ready! Am I really getting that slow or is the clock speeding up?

Melissa

Thanks guys for your kind words. Hippi, I'm so sorry you're in a bad flare again! It seems as though you've been in a perpetual flare for about a year! Thank goodness for pain meds.

I went to my rheumy this morning and she said that of course I feel worse -- I'm not taking anything other than a small dose of prednisone and the plaquenil, which aren't enough to keep this under control. She prescribed Arava, which is a different type of immunosuppresant, and is mainly prescribe for RA patients. The lupus is really attacking my joints and she feels this will help. We'll have to monitor my liver since it's metabolized in the liver so I'm going to cross my fingers. The good news is that one of the side effects is weight loss. Both my mirror and my joints would love that!

I called my stepson, who's a pharmacist, and he sounded real pleased that she had prescribed this. Apparently it's not too well known, and causes diarrhea, plus lots of other side effects, but we all know that they all cause side effects.

I spent an hour talking to my therapist this afternoon about weight loss. We covered lots of ground and I'm motivated, so my fingers are crossed on both hands. And going gluten-free again will help my joints feel better.

Stacie, I don't think it's RA. And Ginnie, please send me some of your magic beans when you find them! I'd pay dearly for them.

Audrey Ann, it's good to hear that you tolerate the arava and that it's working for you. My poor old body is so sensitive to drugs and their side effects and everything I've taken so far, with the exception of prednisone and plaquenil, has either caused a severe allergy or has caused my liver enzymes and creatinine levels to increase. Or caused stomach issues. I'd rather have pain for the rest of my life than risk liver or kidney problems.

This is the first time in years that I've not supplemented prednisone and plaquenil with a third med and boy oh boy is my body complaining. My rheumy said that sometimes people feel improvement after only one week on arava. I can't wait. This is the most pain and stiffness I've felt.

And by the way, since I'll be 60 in three months I keep reminding myself that 60 is the new 40 and we all know that 40 is young! Too young to be this crippled up.

Thanks for your prayers.

Pat

Peacesoul,

I'll look into a good safe way of detoxing at night. Sounds like something worth investigating. Thanks for reminding me to edit my signature. I've deleted a few of the meds as my goal is to get off as many as possible. I do worry about my liver and kidneys, as does my rheumy, who monitors my labs regularly. I had to get off cellcept because it was hurting my kidneys. I just started taking arava, which is metabolized in the liver, so she's going to monitor it frequently as well. I hope I can tolerate it because my joint pain is intense.

I've gone on a natural, gluten-free, sugar free diet, and have dropped sodas from my diet as well. I don't feel any better but have lost 7 pounds almost overnight.

Thanks for some good input.

Pat

No I haven't. What do you suggest?

Hi Pattylatty and all-

I sympathize with the morning pain and stiffness. I seem to feel it in my hands and feet also. But there is a couple of things that I used to do when I thought I only had fibro and am now doing with with MCTD and I am getting relief. Epsom salts baths (especially in a jaccuzi tub) and FIR saunas.

I bought the sauna a few years ago but stopped using it when I read that people with Lupus shouldn't use it, but I have read statements from Lupus patients that have had good results with it. I asked my Rheumy if it would cause problems and he felt it would be a benefit, and he is right. The heat is soothing, and I'm sure it aids the detoxification. The problem with me is consistency as I need to get into a routine and commit to this for several months to see the longstanding benefits.

If there are others who have used one of these, I would love you to share you experience with them.

Hello Melissa

Do you mean steam saunas or far infrared saunas?- I too can't tolerate the heat or steam of a regular sauna but I keep my fir sauna below 115F and with the dry heat I have no problems with breathing or tolerence

Hi Peaceful  I an new here and have question regarding why I am nausea every morning and I run a low grade fever as well mostly in the mornings.  I read your post and I think I may have an idea now as to what is gong on..While im asleep my body detoxes and I feel very ill in the am.  Could this be possible. Like you said .."the body detoxes while at rest"..Could the toxins can fevers every morning for past 4 years.  I have fibromyalgia and sjogrens

Take Care everyone..

Isabella Reid

Thanks  I hope I wrote to the correct place

peacesoul said...
Hi

You're not alone with this problem. Tough mornings seem to be common with other illnesses as well.
When the body is at deep rest a detox process happens and because we're not moving, the toxins sit until we get up and move around.

From reading your signature, you're taking a lot of medication so your liver and kidneys are being taxed and have an added job of detoxing more than usual.
You can try to drink real lemon water before bed and have a good detox program to try to make the mornings a little less painful