I normally am in too much pain to really clean well and do a lot in 1 day like laundry dishes grocery shopping and taking care of my 11 month old baby girl.My doctor raised my pain medication to double what it was since my inflimation #'s were way too high I could not really leave the house and walk about.Now I can get up and do normal household chores and do them well .Its finally adjusted enough for me to actually feel like I can do things that I used to take for granted.Like doing your clothing wash dry fold hang up I would feel beat down horrible pain in my hand and everything.I would push thru and do these things to the best of my ability ,but it wasnt enough so that i can keep things how I want them.Redid my daughters room and put everything in its place sorted thru and put too small clothing aside to give away.I nwent grocery shopping and loaded the car and got help putting the stuff in the house.It pain relief is making me feel useful and a lot more accomplished in my day.I dont feel like it was a waste.I hung my bird feeders.I did a lot that fell behind.I spring cleaned half the house and will do the rest as I can.BUt I dont feel completely useless tho i over didn it today.My tendons are very tight and even tho I cant feel the pain as intense, the tightnesss is just there.THis definitely is a a lot better than it was before.I felt like I was elderly like they walked better than me and I'm only 32.I think this will be a better month for sure.Controlling this pain was a must.I am depressed if I cannnot go anywhere or do anything I feel like my life it frozen till I feel a little better.I can enjoy playing with this little angel mopre than I do,
Some my medication increased to the amount I need... - LUPUS UK
Some my medication increased to the amount I need to accomplish anything during this flare up.I feel god that i accomplished things.
So glad you are feeling better. Are you on more prednisone or just a pain med? I know if I get on more prednisone I really tend to overdo it and end up in pain from straining my muscles (still better than regular pain).
Your baby is a beauty!
No my cortisone levels were very high too high naturally.So my pain medication is tramidol or ultram they are the same.I went from three 50 mg a day to three 100 mg and it works much better now.I can stretch and crack my neck and back and my tendons are very tight,but now I can stretch them so it feels better before it was too painful to stretch.I can walk and even tho i'm stiff as a board I can walk better.Thank you she is my pride and only joy I just love her so much.
It's so good you are feeling better. I'm wondering if this is what I need too. I've been in a flare since October. Am on steriods and methotrexate, my energy levels are increasing gradually but the pain is still there.. I completely get the frustration of feeling useless and the guilt for littlen bit being able to do much beyond the basic needs (mine is 1 1/2). I might discuss better pain relief with my rheumatologist though as they are still telling me take ibuprofen and paracetemol (they do nothing for me)! Hope you keep feeling well and enjoy your time with your littlen! Xx
Well because my natural cortisone levels are thru the roof I cannot take steroids and I have ulcers as well so no insaids or advil asprin I have little choice.Ultram is a controlled substance.I started out at 50 mg 3 times a day and I really needed the increase to go anywhere or do anything.My rhemitodolgist suggested I discuss going up on the pain medication so i do not feel so horrible .I had my Mother grocery shopping, it feels great to leave the house tho.And to stretch I missed being able to move freely without feeling like all my tendons were going to tear.They are still tight, but this medication effects the way your body feels the pain it also improves your energy a lot.I can do so much that may seem trival to some but to me its amazing! i've been in a flare up since october.Its been horrible.
I would discuss it with your doctor maybe even mention the name"ultram and say a person who has lupus and the same same pains says "it works to relieve some" and you would like to try it.I told my doctor that i feel terrible ,depressed can't go anywhere imprisoned by this illness and how much pain i was in.And Its not an opiate either so doctors are more prone to letting patients try it.Tho it is a controlled substance.My soon to be sister inlaw has lupus and she also has them .Without that med she cannot go to the store or walk up to the doctors office.It does not make you feel 100% .. its just a break for me anyways that i needed .I would say it would totally be worth asking your doctor..And they give me tremendous energy as well.Even now I just took it an hr ago.I fel like getting my clothing out of the dryer and folding them maybe putting a load of dishes away and refilling the dishwasher.These things all seem normal but I had a very hard time doing them.
It's good that you're feeling better, Juliet, but do be careful that your emotional need to do everything well & perfectly isn't detrimental to your body. Life is a compromise & sometimes it's a good idea to cut some corners & give your joints a rest, then they will last longer & you'll be able to give your best to your lovely daughter as she grows up.
Looking after yourself is the best gift you can give her.
Spring cleaning for me is a stress reliever my house smells of sweet lavender and its so peaceful.I feel less stress when things are clean.I also suffer from OCD pretty badly.So when things are unorginized I feel anxious.I have PDSD and I'm on valuim as well.but that has nothing to do with lupus.But it does help relieve the muscle pain I get with this .
I'm sorry , Juliet, to hear that you also have OCD. That must make things very difficult for you. At least you KNOW that the consequences of giving in to the needs of the OCD are not good for your body. Would it make it easier to resist if you accepted that it would be better for your daughter's future if you resist the temptation to satisfy YOUR need to spring clean. you could still have a lavender smelling home with candles or an air freshener !? Perhaps you could do it for HER ? Maybe that might help ?
I do hope so, otherwise it's a lose/lose situation, isn't it ? Good luck !
As long as my medication keeps the pain part at bay I can do those things.I dont think everyones getting this.I had a spiders in my front bathroom it was "brown recluse.And Even tho i'm spring cleaning, I still have that STOP moments.I stop drink a cup of coffee and then watch a movie with my daughter or go on here.Then i get back to it.I'll do half the clothing then the other half folding putting away the next day.And sure I wake up feeling somehting awful.But it's just nice and it makes me feel good to keep a cleaner house.It's just healthier for my baby and family.I felt completely useless before. And now that I have less pain i mean it's not a magical pill.But I would say 60% less pain i have that much more energy as well.I slept great from 9:30pm till 8:30 am because I can sleep better using that energy i use to use on pain exhausted myself just thinking of it 24/7 now I can breath and think ."What should I do tomorrow?Or what can I do? Even if its just spring cleaning a room at a time.It feels so good to do somehting to be able to stretch up and bend.
I DO understand how you feel, Juliet, & I admire you for battling on under such difficult circumstances. I sincerely hope that you are getting some helpful support for the OCD as well because both conditions need to be properly treated, don't they, so that one doesn't stop the other from improving ? Perhaps rationing yourself the OCD rewards could help rather than thinking, Oh ! I've got less pain, so I can indulge my OCD needs ! What does your OCD therapist advise ?
I haven't seen 1 ever.I was diagnosed when I was 17 had 3 jobs and did nothing but accumulate ,which I thought was a good thing.I was home for 6 hrs and worked the reat of the time.I liked to be on the go constantly and my house smelled of bleach lol.It was a huge smack in the face when I was 22 and lost everything I worked so hard for.But I like that extras push I have in me .I dont see it as a problem more of my personality.My Father is like this as well.He will work for example .He had a kidney stone attack and the owner of his machine shop had to make him leave and go take his medication and rest!The doctors saying it was not enough ,he tried to push thru.I do that.Its hurtful sometimes .But I have to say my soon to be sister inlaw has this same lupus down to everything besides the kidneys.And she litterally acts like she is dead .I dont want to be like that.I know it hurts, I hate walking, I hate going places. But if I lay there and let this take me it will.So have OCD makes me push myslef maybe sometimes too much but I feel its a better thing then laying there and letting this problem rule my life.Like she says NO SUN ever she stays indoors for me thats death...No I say "baseball cap and light cotton long sleeves!She is in my wedding which is on the beach .She said "we cant we have lupus.I said "we can buy partasols and they will look fashoinable.I know this makes you feel aweful but if I did not have OCD I would probably lay there and take this and I wont do it.I want to go to the zoo on Mothers day.And I will go I will wear a baseball cap cover up from the sun ,but I will walk thru that entire place thats huge slowly but I will do it.To me ocd is just a part of who I'm that I grew to like.I dont see it as a problem at all.Its almost like extgra energy someone in you saying go go go a couch lol
It doesn't make ME feel awful, Julietsmom, I am not the one complaining about the pain.
If that is how you wish to conduct your life, it is your choice, it doesn't hurt me. I just think it will be sad for your daughter. She does not have a choice at the moment. I was just trying to say that life is a compromise, one does not HAVE to live at the extreme, either too much OR not enough. it is your choice & responsibility.
I wish you well & hope that you find the peace & contentment which you seek.
Well I come here to complain about the pain I'm in because people here listen and understand.And I do feel awful while in the middle of a flare up.If a medication gives me enough relief to take my daughter to a park or the zoo or just grocery shopping then that makes me happy.My daughter would not be saddened by being able to be a normal child and go places and do things her peers are doing , its the oppisite.She goes on play dates and finger paints, does yoga and walked since she was 10 in a half months old.She strives from me pushing myself.After all she is not the ill 1 I'm and I will not let this diease effect her life in any way.I want her to be happy and love life and it might be painful for me but I can handle physical pain.But missing a birthday party she's invited to or not taking her outdoors to play is somehting I wont deal with.I prayed for her and I got a beauatiful daughter and I will give her everything I have to offer.I know when its too much and when I must let her Dad take over but I love being the best I can be regardless of this illness and its downfalls.
You are missing my point, Julietsmom. I am deeply sympathetic towards you about the pain you must have from the horrible lupus or any other painful condition. BUT, I'm not thinking so much about NOW. The pain you suffer because you emotionally need to push yourself is not only about NOW, it is about the permanent damage which you may do to the tissues involved in your condition, which may mean that your FUTURE ability to be as caring & attentive to her as you wish MAY be affected. Doctors & drugs can only do so much, the rest is OUR responsibility.
OCD is a treatable condition, as well, you know !
I have medicaid and here in the US OCD is something they send you to a physiatrist for. My medical coverage doesn't cover it.I also have pdsd from things (personal things that happened at my 10 to 14 yrs old ages years ago.They dont consider seeing a physiatrist a necessity here and I think it is.They put me on Valium for that condition and antidepressants.I had a nervous breakdown because I forgot these things happened then remembered all at once while one of my siblings came forward.This has all been 2015 ...What a sucky year ,besides my daughter she has made the year great.But I guess I see things differently.If I didn't have someone to push me a little harder than I would just lay in bed and sometimes I need to. Other times it just feels like giving up.I know I cant be super Mom and do everything but I will always push to do as much as possible.Plus yoga is also benificial to us .It stretches our ligamnets a bit and made her walk earier then her peers.I used to play basketball be very sporty,but now I'm much more laid back I have to be.
I'm sure things are very different in the US than in the UK, Julietsmom BUT, in fact, the US are streets ahead of us as for, NOT psychiatric treatment, but counselling the sort of help which you would, I'm sure, benefit from. It sounds as if you have got into a state of mind that believes there is NOTHING you can do & so you must just put up with it & push yourself, it's called 'stoicism' & to some extent, being a 'victim'. I'm sure there will be, as there are in the UK, enlightened & generous voluntary organisations which offer counselling who cannot get help on the NHS or Medicaid. Please, do make some discreet enquiries, I do so hope you find someone experienced to talk to, because sympathy from people thousands of miles away is a comfort but it's only a sticking plaster on the wound, the healing has to come from within you.
I sincerely hope you can find the right person for you to help you to put the past behind you & out of your mind.
Bon courage !
Hi, I can only agree with junechopin. Its great to hear your pain relief has lifted you mentally as well, but please be mindful of the lasting affects of pushing your body so hard. Pace yourself, allow your body time to catch up and remember that because the pain has gone the fatigue remains. I have done this in the past, especially on holiday and needed a day or two to recover. So pleased to hear how positive this is for your future.
Ultram also gives you energy.Or maybe it's the pain is exhausting for me,But either way.. I feel a lot of pressure off my back now literally with the medication change.And I just love things to be perfectly clean nothing makes me happier then a freshly spring cleaned room.
I did some cleaning on my patio and funitures ouside before noon due to pollens. After one hour, I went inside to rest on the couch with ice packs on my right arm, neck and shoulder. I don't like prednisone, cuz it makes me over actives and side effects. After half hour, I feel much better w/o swelling, rash and pain. Usually, I can cleanup all day. But since diagnosed with lupus, I dont want to pushing.
I cannot clean all day, but I can do some and by the end of the week I will have things around here looking much better.Before I could do it in 4 hours max.Now I know this will take be days but at least its taking me somewhere.I was just sitting here feeling like I'm rotting away.So useless and tired and beat up.Now I can say yeah I'm sore,but with good reason.I use to play basket ball in school and the next day i would be sore .but it was the good kind.I know when I need to stop as well. Like I could not take the baby to my Mother's yesterday I thru in the towel at 7 pm and was done.So I have my limits but with this new relief I want to feel usefula nd be the best Mom to Juliet.
Can't stop crying today!..
I'm so tired of being tired and in pain!!!!
catching Covid worries 
