How long does yours last? Mine is at least a couple hours. It kind of zaps me for the rest of the day. It is a lousy way to start your day. I have considered setting the alarm and taking my percocet two hours before waking up. What do you think?I fortunately don't have morning pain any more but when I did, it would last at least 5-6 hours before I would "thaw out."
Jeanne
Jeanne, Are you taking morphiates? What made you get better? I have so much fear of dying until Kelsey is more independent that I am afraid of many of the meds.
As you suggested, I do take mine when I wake early, about 6:00, then go back to sleep for about 2 hrs. Otherwise, I don't think I could function in the a.m. I don't sleep well so I need something to help me sleep, but still wake up at about 2:00, 4:00 and 6:00, but too groggy to actually get up for long.
Try it, I really think it will help. You may still hurt some when you get up, but shouldn't be nearly as bad.
Hope it works for you!
Gentle hugs,
Nini
Well, when I had morning pain & stiffness it lasted all day and night, with some breaks here and there with taking IBU. I now have night pain & stiffness that sets in around 6pm until like an hour after my pred, which I take my pred between 1am & 3am.
I do not have morning pain or stiffness that much because:
1 - I take my pred at night before I go to bed, so it does help me to function & get around better when I wake up, and minimizes my morning stiffness to about half hour.
2 - I am active aka moving around most of the time before I fall asleep which most times is 2 hours sleep before hubby wakes up and i have to take daughter to the bus stop. Or I do not go to sleep until 9am and get back up at 11am. So... I do not have much time to gel. I do get the odd stiffness, aches & pains thru the day, but I just try to work thru them.
3 - Pred helps me to not notice my pain as much.
Since being on Humira my swelling has greatly improved. I do get some swelling but not like I use to have. Right now I am swelling because I have not had Humira in 2 weeks and will probably be a month or more before I can have another shot.
HAHAHAHAHAH I tried to reply to this and look what I got! :
I am stiff for about an hour in the morning. I get up about an hour before I have to drive one of the girls to school. I take my pred at night too.
Are you afraid of taking the biologics because of the warnings on them? People dying from them is very rare. Weight the benefits versus the risks. Talk with your RD about the risks. For me, the benefits outweigh the risks and I have done very well on them and I find them worth it.
Katie, I see you couldn't take the hint.LOL alright now that's enough out of you!! Maybe he's out of tune cause he's not really a drummer. He's a LUTE player. Okay that made no sense..
is that part of the woodwind family?
Ohh... flute... so maybe KennyG is putting you in a trance.
No LUTE. LoL It's a string instrument. The only reason I'd let Kenny G near me is if he offered to lick doog crap off the bottom of my shoe. I can't stand him. LOL
Roxy,
Use a 'soft' piece of plastic to plug the bath tub drain like the top off a plastic food keeper. You have to hold it in place for a bit because the running water will want to wash it off the drain but a suction forms pretty quick. I can't be without my hot bath!
I am pretty stiff for about a half hour, but I don't get 'fully' fuctional for about 3 hours. I gell up after sitting 15 minutes... so I always seem to be trying to get something or other moving.
I think taking a pain med about an hour before you try to get moving will help. So would starting the day with a hot bath or shower, it really decreases the stiffness. At the very least it will improve the morning attitude which helps the whole day go better.
How do you guys get up out of the tub. I can't? I've tried to take nice long baths but my knees and ankles won't cooperate so I take long hot showers. Roxy, get Kelsey to help you into the shower. It will make you feel so much better. There's a nice little emotional high that comes with taking a long hot shower. It's a feel good thing to do for yourself. Roxy,I got the shower. Combing my hair out was a bitch. I do feel better I don't stink but this is one nasty flare. I would be afraid to go to hospital as they would pump me full of prednisone and morphine. NO Thank you. I am taking 10 mg pred. now. I might go up to twenty but I want to try ten for a few days. I had such a horrible time getting off pred. I know all of you want to scold me but it is deaf ears. I hate pred. If this pain does not get better in the next few days I am going to ask my brother to come get me. I called every charitable service around and no one would come out. I have so many applications I need to get done but I can't thinnk straight. One thing about having a houseful of animals is you have to think of their needs too. This is one of the worse flares I have ever been through. I think this move and Brett leaving was just too much stress. Now the electricity is going out, windstorm, been going on and off so I might see you on the other side of this storm. The TV that distracts me from the pain is already out.
Vicki I washed my hair but I think I lost half of it trying to comb it out
You know a shower would feel good, but the thought of moving that much, just to get undressed and actually do it is overwhelming, even with help.
Oh, Sweetie, I hate to think of just you and Kelsey alone up there with the animals. You absolutely need help, whether it is your brother or one of the charitable services, someone needs to be there with you, at least until this flare eases up some.
Let Kelsey help with anything she can, okay? My thoughts and prayers are with you both.
Nini
My pain used to last a couple of hours, however, it's there now in places it wasn't before. So, I'd say the swelling in my hands goes down a little after a few hours, but if I take a nap, the swelling is back, just like it is in the morning..wonder why?Hey roxy! When I had my knee surgery, I sat in the shower. YOu could get a metal or plastic chair and sit under the shower. Also, use a ton of conditioner to help detangle your hair. My hair is long and thick, and wirey and straight, and it tangles like crazy. Last night with my shoulder acting up, I didnt brush it at all. I shampooed with baby shampoo and my left hand (baby stuff rinses easily) and them dumped a bunch of conditioner on it. I went to bed with it wet and when I woke up and it was dry it brushed easily.
My stiffness usually lastes all day....but it is more painful in the morning. Unfortunately I have to ignore it because I have to get my kids up at 645 to get them ready for school.
So I just stagger around like a crazed woman...barking at orders and giving in to tie shoes and make toaster waffles. some day they will be able to do for them selves....HA..I will probably be cured by then!
Hi Roxy,I feel for you. I am just on the back side of an awful flare myself that last over 6 weeks. I've been fighting this "officially" since last January. I was very resistant to taking lot of the toxic meds as well. I started with placquenil and a couple of steroid packs but refused the daily steroids. Things continued to get worse and worse.
I tried Imuran and alsulfadine (sp?) both made me horribly ill. Back in May, I gave in and agree to a low dose daily steroid until we could get things under control. When that didn't help a lot, went to Enbrel.
Everything continued to flare, including my eyes to the point that my corneas were warping and I was in danger of losing my eye sight from the continued steroid eye drops.
I switched to humira back in late August. Things got better for a few weeks but than this latest flare set in and I had to go up to 30mg prednisone for a couple of weeks. I'm finally down to 7.5mg prednisone.
I gave in three weeks ago and started the mtx injections on top of the weekly humira injections, placquenil and prednisone. I was hoping to be able to have a child one day but after 5 miscarriages and the dr's telling me not much chance of carrying to term and the fact that I was in SO much pain everyday, I gave in. The mtx seems to be making a difference already. I've gone from a daily pain of about 8, some joints a 9 to a more do-able 5-6 for the majority of the day. I am hoping with a few more weeks that pain will go down even more.
It was a very hard decision for me to make but ultimately, I decided I must make myself better before I could think about the future. I'm 36 so I doubt my dream of being a mommy will ever come true but at least I don't feel like I want to curl up and die from the pain.
You have your daughter to take care of, I understand. However, if you are in such constant pain, how well can you really take care of her? My hubby and I talked about it and we decided that we would rather have less time together but have that time be usable time, time that I'm not curled up in a ball from pain. I would rather live a shorter, less painful life with drugs.
My morning stiffness is down to about an hour. As the day progresses, things start to hurt worse. I think because I have an office job and don't move around often enough. I can usually make it to late afternoon before having to take a pain pill.
The side effects of the drugs are scary but to me, living in as much pain as I was in for the rest of my life, was even scarier.
I am stubborn but not THAT stubborn. I am up to 15 mg. pred. a day and I do 50 mg. Enbrel a week. I think RA effects us all differently. I also have fibro, the doctor pushed the trigger points and I jumped off the table. Shower helps but sitting up and getting under my electric blanket helps the most. I also take relafin. YES - I am resistant to morphiates. I don't judge others that do it but morphiates scare me. I feel like there will be no turning back and I have not given up on this disease letting up on me.
I am going sometime next year
This is a bad flare. I don't know how much fibro is playing a part in it. I am just getting used to that diagnosis and the fact you cannot do much about it. I think we all have to realize, RA effects everyone differently and how you treat it is a very personal decision. It is a tough decision and I am so grateful that I can come here and get so many different points of view.
We know we can't resist certain treatments without paying a horrible price. But on the other hand, everyon says we're supposed to take primary responsibilty for managing our disease. That means we do get to exercise our own judgment with all of this. We should expect to be respected by the medical people for that judgment as long as we made it in a reasoned way. Like you said, being open to new ideas bu owning the choice.
I guess it's a fine line, but still it's our disease, our body, our life. If we're being cooperative with treatment overall and thoughtful about our decisions, we have a right to expect them to keep working with us to find better treatments even if we have rejected some of their prescriptions.
I'm hoping to fight long-term prednisone as hard as I can -- stay away if I can, fight every milligram if I have to have it. I also know I can't predict what's ahead or what decisions I'll eventually make or re-make (as micheleb described herself, and otherse).
Having given that speech, I can just see myself slugging down long-term pred and griping about the taste of my eating my own words.
Keep on keeping your nose above water Roxy. I hope the light shines from the end of this flare soon. And I hope you're seeing that new doctor at the teaching hospital real soon. Sometimes that one more perspective is what it takes to turn the corner.
Roxy,Ally plays on my bed and watches cartoons. By about 8:30 or 9 I am able to get up..most days. I absoultely have to be out of bed by 915 MWF to take her to preschool.
First of all this is a great supportive topic of posts!
I have hair length that I can sit on and refuse to cut it just because of RA so I have a super neighbor who happens to also be a cosmetologist that washes, dries and braids my hair one a week. When I want to take it down to go somewhere it is nice and wavy.
The mornings are rough for about 2 hours which after all night with no meds it takes about that long for my first pill to really work. I do use opiates and cannot take Pred.
I also have a walk in shower as I fell once too many times using the tub kind but sometimes still don't even feel like undressing in order to get in their and in a bad flare I too have went a long time in between showers. They do feel wonderful once I get in them.
I really hate to drive. The fibro fog scares me and my joints suffer from using the pedals.
Nappys are also a part of my day, fatigue is the pits.
Take care,
For the long hair come outs, try Paul Mitchell The Conditioner or Infussium spray, both are leave in conditioners and work very well! I started showering in the evening and letting my hair air dry!There are days when I really dread the shower. Not so much the shower itself but the before and after...when it is cold and you want to hurry to get warm but cant....I did buy a space heater that I turn on and close the bathroom door for a few minutes before I go in. That way the bathroom is nice and warm. I keep baby wipes around anyways and just run them quickly under the hot water for quick washups. It is good if you break a sweat doing something around the house, or just need a freshen up. They came in handy when a water pipe broke and we didnt have water for one night. The kids got baby wipe baths that night. You can get the ones that the hospitals use and they are thicker, but if you cant find them or they are too much money, baby wipes work too.
I usually keep my hair up in a scrunchy to get it out of the way and keep it from tangling. You could maybe get Kelsey to braid it for you too.
Thanks Michele for the product tip! I will try just about anything to make it easier for either me or my daughter to brush out my hair. I usually braid it or let it air dry anyways. It is curly and I will partially difuse dry it only when I go out. I love having low maintenance hair. I would go nuts otherwise since I'm not a real girly girl lol.