Hi I’m new to this online group support I have no support from friends family they don’t get it. I just wonder if any of you have ever over worked yourself and went to bed and had every joint hurting, stomach burning hips and these darn Charlie horses in my calfs. I felt fine while I was shampooing except for sweating so much but oh boy when I quit. Also I have extreme pain on those two bones at the base of the neck have any of you had that. I’m always in fear that the dr misdiagnosed me and I’m going to die taking all these meds so when my dr gave me cellcept I set on it for a month before I was able to put one in mouth . I just had a positive ana and double stranded dna is all isn’t there more proof of this disease then symptoms and that? Thank you all for taking time to read this vicky
I know that I have Fibromyalgia and Sarcoidosis for sure, and the same thing would happen if you shampoo the carpet. Your body is rebelling. Doing too much. I am still not sure that I have Lupus either, had positive ANA, double and single stranded and most of the symptions.
I would never attempt to do anything as hard as shampoo my carpets. I pay to have it done, even though the money would be better spent on these darn diseases. I live alone and it still takes me almost all day to my laundry or the dishes. I have to keep sitting down until I feel I can stand long enough to do a few more. I have even gone to plastic glasses and paper plates! so there are fewer dishes. No one here to see me. We have to do what we can to make it through another day.
My thoughts are with all of you fighting this terrible thing. Good luck and hugs.
This is one of the most difficult aspects for me. I want to get out and do things, but there is always a price to pay. A simple shopping trip usually ends with a 2-3 hr nap. I have to break up my household chores throughout the week so I wont hurt as bad. Its hard when I am having a "good" day not to want to do a lot of the things I want to, but then I end up paying. It has taken me awhile to accept this and learn my limits. Not having a good support system can make it harder too. I am glad you found this group. I am not really active on it, but reading the discussions and asking some questions has really helped me. I have much more information now than I ever had from my Dr. I hope you will share that experience. This is one place that I can be honest and not feel so alone.
So sorry to hear you went through this! It is very normal to have these pains and fatique. How every many days I have pushed myself, that's how many days it takes to be down and get better. I hope you get better soon.
I told my husband that I will never shampoo again lol. Thank you for your kind words
lonely and sick said:
I would never attempt to do anything as hard as shampoo my carpets. I pay to have it done, even though the money would be better spent on these darn diseases. I live alone and it still takes me almost all day to my laundry or the dishes. I have to keep sitting down until I feel I can stand long enough to do a few more. I have even gone to plastic glasses and paper plates! so there are fewer dishes. No one here to see me. We have to do what we can to make it through another day.
My thoughts are with all of you fighting this terrible thing. Good luck and hugs.
I’m not sure how to use these replays but doing my best I’m not the greatest at writing but hopefully you all will bear with me. Back about a year and half ago. I would drop my child off at school and not even remember the ride home crawl into bed with my clothes on and sleep til he walked in the door not even knowing where hours had gone. Went to see a dr because of postive ana and dsdna and he said lupus. I didn’t believe him went to university and there I was on 60mg of prednisone and she said not lupus it’s bechets got Cushing syndrome and still joint were hurting etc then they thought cancer due to a high white cell count then bone marrow MRI ct skans I was done with that crap and changed drs again he took me off everything got the positve ana back DS dna now he says lupus. I’m afraid I can’t trust anyone now my stomach is burning and I’m dropping a pound a day dr says lupus my primary says ulcer. I also have vert dry eyes and mouth but my sjogerms isn’t showing positive anymore. Everything I have read is with lupus you have a low white cell count and I don’t have a rash can any of you relate to this. Vicky
Christi I know there are days when I laugh about this and think Really your not taking my life and this lupus are what ever the heck they want to call it makes me feel angry sad and very frustrated its not fair to my family friends even my drs it has everyone not just me. That’s what hurts the most. I am 52 with a 8 year old son his name is Merlin and Amber is 27 my son Bryan is 30 and I know sometimes they have a hard time believing it. But re ally it would not change anything. My husband Steve says he understands lol but then why does he not helpNVicky
Christy said:
Yes even if we don’t think we are overdoing we actually do.
Make sure to give your self alot of rest periods during cleaning, walking ect.
Even going up steps you should take a break. Make sure you have everything you need so you don’t have to make repeated trips.
I can be in pain for a good week when I over do it. Drink a ton of water too:) Your body is a new body now
I know it’s just lovely isn’t it
I live alone like some of you, and doing housework on top of everything else is just really, really hard. I have to rest so much and I'm trying to still work as well. It's crazy! I am learning, though, that I have to build in a lot of time for resting if I'm going to get anything done. The last time I scheduled a trip with some friends, I ended up having to cancel because I just didn't want to slow all of them down.
The only saving grace is my daughter who lives very near me so I get to see my grandkids, and can ask for help if I really need it. Although I almost never do because she is married and has a family of her own. The last thing she needs is more to handle with me! I am so grateful for you all. I really don't know what I'd do if you all weren't here. Thanks for reminding me to take it slow!
Christi I hope the meds work they put me on cellcept should be working in 4 weeks and hey maybe I can try that carpet thing again. I used to do Zumba too step aerobics and boxing lol now I weigh 240 pds due to steriods but losing weight fast I just want to see 150?again hey Christi if your own high steriods my new dr said if I had gone on atkins I would of not gain the weight he said its the anti steroid diets Vicky
Christy said:
Vicky- I’m in the same boat lol.
It’s because they are men and are needy lol;)
I know!!! I used to run and play chase with my daughter, kick the soccor with her and do Zumba and now its like hey, what gives???
And for goodness sakes how dare anyone hold my hand too tight…well tight for my new body.
My plan was to keep active until I die.
Hopefully the meds kick in soon!!!
You so remind me of me with shampooing the carpets…that’s sooo what I do…I mean used to
Hello, doing house work at first for me was totally out of the question!!! Seriously, it was to much pain to hold everything in my hands, or to stand for any length of time!! I thought for along time I would have to hire a maid to do everything, but of course I had to make myself get out of that slump and take charge. Yeah it was so hard but I did it! I had to let the family and friends know ,“Hay ! I might need for someone to help me at times” , but my oldest son is always there from the start , and he talked to everyone explaining how I just could not function by my self , and if anyone had the time to spare to help when they could , it sure would be grateful for me . Yes it is very hard at times to do things but we have to do what we can . This stupid Lupus stuff-LOL…Beverly L.
I felt pretty good yesterday so I did some laundry and cleaned my SMALL laundry room, including sweeping and mopping. Well, you probably guessed it - I am not feeling so good today. During the night I started to hurt all over and even though I got up and took my pills including the pain meds, I still hurt terribly this morning. I am hardly able to get around. So my plans of cleaning my kitchen today is not going to happen. I don't think I will get my house all cleaned without hiring it done, if I can find someone to hire! I shouldn't spend the money on it because I have so many medical bills and prescription costs (I am presently on 12 different meds - not all for lupus and RA), but it really needs to be cleaned.
Have a nice day and hope you are all doing good!!
Hi Lonely,
I have thought the very same thing. I don't know how I will get it done without help. I have never had anyone come in to clean so I'm not sure how to even go about it. I need to check with friends I think to see if they have help and who they use. The expense is not good for me either, though I don't think it's as bad for me yet as I am still working. I've had some boxes in my living room that need to go to the garage and they've been sitting there for three weeks now. It's little things like this that kind of seem to pile up until the whole thing becomes overwhelming. Let me know if you find someone to clean and how that works out. And hang in there! Hope your day goes well, too. Heymj
lonely and sick said:
I felt pretty good yesterday so I did some laundry and cleaned my SMALL laundry room, including sweeping and mopping. Well, you probably guessed it - I am not feeling so good today. During the night I started to hurt all over and even though I got up and took my pills including the pain meds, I still hurt terribly this morning. I am hardly able to get around. So my plans of cleaning my kitchen today is not going to happen. I don't think I will get my house all cleaned without hiring it done, if I can find someone to hire! I shouldn't spend the money on it because I have so many medical bills and prescription costs (I am presently on 12 different meds - not all for lupus and RA), but it really needs to be cleaned.
Have a nice day and hope you are all doing good!!
Hi, I know how you feel. Yes, my c4-5 pain after doing the simplest stretches hurts so bad I cry. I think in part that I angry at Lupus. I have even given up using sharp knives…I have clotting issues. My husband doesn’t get nor does out daughter. My sister does and she helps out when she can. UGH and they wonder why I am a totally nag…coming to this site helps.
Chin up! Take it minute by minute. Good luck…