Last night I just panicked I was in so much pain. I kept begging Brett to tell me what to do. Poor guy, as if he knew. I took six Darvocetts yesterday and three Ultrams. I was feeling like a drug addict for sure and still by evenings my BUTT, my hips and my knees ached so bad. It would go between an ache, to being on fire, to sharp pains. I was so upset. I finally took 10 mg pred. and more ultram and got some sleep. I think I have been taking all of these pain meds wanting to not take so much prednisone daily. I can't handle the pain anymore. I am going to rd tomorrow. I am raising my prednisone today. I don't want to be dependent on prednisone, I hate how moody it makes me, and I crave sugar so bad I always give in. I will double my weight if I stay on that sh*t and I feel like it makes me go crazy. I am going to ask for the localized patches for pain some of you have talked about. Those aren't narcotic are they? I am truly believing I am going to be addicted to pain meds if this pain does not subside. I can't handle it
Do you think you might have RSD? There has to be some help out there for you. If you're taking a lot of pain meds don't stop taking them suddenly. Do you have access to a good pain clinic? They aren't all the same.
Roxy, I am so sorry you are feeling so bad. Last night was a bad night for me also and I am like you, my RA is worse at the end of the day then in the morning which is another reason I always have this little nagging question in the back of my mind if I also have the right dx. I have a lot of commonality with the disease but not everything but from everything I hear from this board members here, I guess that is normal. Thank goodness I have all of you to compare notes with because as I have always said, this is the first time I have felt validated with this life long problem.
Take Care and try not to stress (so easy to say). Be firm with your doc tomorrow. I know how hard that is because I always loose control at the doc's office.
km, What is RSD? I am DEFINITELY going to make an appt. for pain clinic tomorrow. I have had a couple people recommend the same one so I am hoping it will help. I have already taken darvocett, prednisone and my other meds and the aching is still getting worse.
I am waiting to go for my walk with the dogs. My car would not start. If it's not one thing its another.
I have to take my dogs to the creek for our walks because I cannot wear out my weimariner unless he is swimming. It does absolutely NO GOOD taking him on a leash in the neighborhood. He has way too much energy for that. Riding him next to my bicycle works but I am worried I will crash on top of everything else
I feel so bad, when I am hurting, my dogs don't get their walks and they have always gotten walked every day! I am feeling so impatient. I want to walk off this anxiety but I am trying to save my spoons to walk my dogs. This budgeting energy and pain meds is sure making me lose touch with how I used to be. I wish you guys knew me then. I could run faster, jump higher, and play harder than 99% of woman my age
Thanks sk. I am just rambling. This pain is bs and it sounds mean but I do wish the rds and other people could feel how it feels. I need to just make it through today then I am going to get pushy about finding something to change this. This is not quality of life!
Take the pred. I know how you feel abiout the weight gain, but if you take it, feel goo enough to get activity in your day, you should be ok with weight. I was on10 a day and i lost 70 pounds! i didnt starve myself, i just started exercisiing. You are already active and fit, I dont think you have to worry... THis pred is a temporary fix... i have been on it for like 4-5 years.. i just got off of it and i never thought i would, now that I am flaring, I took it again, only 5 a day and i will wean off...dont be afraid of the meds. take them, they will help. Once you get your humira you will start to feel better and this will all be a bad dream!
HUgs to you Roxy... take the meds, feel better!!!rest when you need it, but a short walk may loosen up your stiffness. Its wierd, but i can go shopping and feel good at the end when i was so stiff to start out!
FEEL BETTER!!!!!!!!!!!!!!!!!!!!!!!!!!
Thanks Unicorn. I am so lucky. I need to be reminded all the time.
Cristene, I also wonder about dx because I have SO MUCH PAIN IN MY BUTT!!! I mean deep down pain. Rarely do you hear people complain about butt pain like I have and the rd seems to just discount it. I asked him if eventually this pain in my butt will go away and he said "it might not". How depressing is that!!!!
This is me if I have to sit in a chair too long
Not a pretty site
This is me lol
RSD is reflex sympathetic dystrophy. They call it something else now but it's a pain amplification syndrome that sometimes happens with chronic pain. A good pain clinic could help you with it. A bad one will tell you to tough it out or exercise or something stupid like that.
http://www.rsds.org/ has some good info on rsd
Here I am again.
A possibility for the butt pain. - I had it for years and when I went to the dr I have now she diagnosed it as piriformis syndrome and treated it with injections of I think cortisone + something like lidocane. It was a muscle problem irritating the sciatic nerve. It took me years to find someone who could tell me why I had this pain and do something about it. It might not be the same thing but you could ask about it. I've found that if a dr doesn't know what something is they sometimes appear not to take it seriously.
Thanks KM. You are the best. I will look it up. I was just out in the yard watering and now I am hurting soooooooo bad. MY BUTT. Can't sit down too long but I hurt when I exercise tooHope today gets better for you Roxy - I have the butt pain too & yes! km is right I'm pretty sure it's the sciatic nerve being irritated - Nothing helps that except floating in water....is that an option for you?
Hugs...lulu
Kathy, Your experience is really helping me. It is good to know people who learned to cope with thisI've had to have the shot repeated periodically but it lasted for a long time. Months at least- It hasn't been a problem for me for at least a year.Roxy,
I'm so sorry to hear you are still suffuring. I know it
can be so discouraging and overwhelming, but it
sounds like you are doing the right things...going to
the doctor, seeking out a pain clininc, and taking
pred again. I totally understand the weight gain...I
have 60 lbs to lose. I'm still on pred but as others
have mentioned, it's really worth it to take the pred
sometimes, than to be in so much pain and
distress. For me at times it helped just to know what
it was like to be almost normal.
I know you're concerned about the darvocet, and it's
always good to keep in the back of your mind, as
long as you stay aware of that, and track what you
are taking and when, you should be OK. Of course
everyone is different, but it just might be that during
this 'waiting period' for insurance, it can help bring
some relief.
One of my sister's had major surgery last year..they
fused all the disks in her neck and 2 in the top of her
spine. She was, and still is, in alot of pain and is
taking a couple of different kind of pain medications.
She was really worried about becoming dependant,
so she decided to try not to take them at various
times. But then her pain would get so bad, that she
was discouraged and depressed and her body
would tense up so bad, that it made the situation
even worse.
Her doctor told her that sometimes it is better to
continue to take the meds when the pain is bad to
keep her body from being so tense/stressed that is
takes even longer for her to get relief. I'm not sure if
that makes sense or not!
I know you mentioned about your sciatic nerve. I
have sciatica pretty bad, I've had it for awhile, but did
not know what it was. Extremely painful. But for me
the pain starts kind of in the back of the right side of
my butt, runs down the back of my thigh, outside my
knee, down my calf and bottom of my foot. Feels like
someone has a hold of a nerve and is trying to rip it
out of my body!
The only thing that brings any relief is to take
pressure off by toaking a hot bath, doing a few, slow
stretches (bending over and hangiing there for a few
seconds helps) and getting up from my desk often to
walk a little When it is flaring up, I'll take a pain pill
when I get home (if I have them) and just try to stay
off my feet as much as possible.
Another thing that helps with some temporary relief
is to sit on an ice pack.
Anyway, I've written a book here, but just wanted you
to know I was thinking of you!!
Take care...Tara
Hey Roxy -
Do not worry about "dominating" the board that is what we are here for!
Sorry you are in so much pain. Since you are going to take 15mg of pred. Try taking 15mg for 3 days, then 10mg for 3 days, then back down to the usual 5mg. It helped me to do what I needed to do when my brother came to visit. I was pain free most of the time, and was able to do things. But I knew by the end of the week, after taking 5mg for 3 days, I would be back to my "normal" achy, painful, swelled self...lol. And I was the day my brother left I was unable to move around good and was stiff and vey tired. But that is the way it goes when you do the "flare" pred...lol..you do more then "normal" and wear yourself down. But I did sleep good them nights and was asleep before 2am! Now I am back to staying awake until 5am -6am.
Roxy,
Inspite of the pain that you are in, you sure manage to keep your keen sense of humor. The two RA sufferers on prednisone and the prednisone cheeks were so funny. I needed a laugh today and that sure brought one.
I sure have been on the prednisone weight gain, high energy, chubby cheeks roller coaster before.
I hope your pain will be under control soon, and the Humira will work out for you.
Leslie
I'm the same Sara as before. Had to sign up as someone new because no matter how many times I request it, this site is not emailing me the password I lost. grrrrrr
Anyway, your post made me want to go to the trouble. I absolutely understand your concern over the addictive narcotics. I was taking them too, and was so worried. Brett's concern is valid. He sees something in you that maybe you are too close to see. Now, I must say that pred also worried me. I said all this to you in a previous post, but I feel a need to repeat it. Pred is temporary. So is the fat. You get dependent on it, but again, that's temporary. I think an addiction to narcotic pain killers may be more difficult to break. So my opinion--the yo-yo thing you're doing with the pred bothers me. 5, 10, 15, 10, 5, 15--your body may be very confused. Frankly, I can't understand why your doc is not weaning you much more gradually. I was up to 20mg. Here's how my rheumy weaned me--and understand, I was not to go down a step until I'd completed two weeks on the prior step. 20, 17.5, 15, 12.5, 10, 7.5, 5, 4, 3, 2, 1, 1 every other day, 0. Yes, if you do the math, that kind of weaning process takes about six months. But you know what? I got to 2mg today--before this slow wean, I couldn't get down past 10. So something must be working...patiences is a bitch, but sometimes we have to learn it, girl. The thing you need to know is that before, I was doing lots of narcotics, too--but they scared me more than the pred. And I decided fat was better than pain. Plain and simple. And always remember, the fat is temporary as well. As active as you are, losing it will be easier than the average bear.
As you may remember, I also lost a ton of weight (110 lbs) a few years ago. For your sugar craving, I offer the following, which worked for me. It'll sound stupid, but it worked for me--and I am a sugarholic! First--every time you get a sugar craving, drink 8 oz of water immediately. It'll stop the craving for a short time. Next, get to know sugar substitutes--aspartame, saccharine, etc. (Please ya'll--no aspartame lectures--been there, done that.) So diet coke, cookies made with splenda, sugar free hard candies. Whatever it takes to get that sugar taste in your mouth. Oh. And I got so addicted to oranges (4-5 Cailiforniia navels a day--yumm!) All sweet fruits help keep the sugar demon satisfied for awhile. Keep these things within your reach at all times. And get rid of a sugar things in the house. Don't make it easy for yourself to cram sugar in.
Insurance--this is how it was explained to me. As long as you work, the insurance you get from work is primary--no choice. However, there's no reason Brett's insurance can't be secondary. What primary doesn't pick up, secondary does. Only question is, will his insurance look at it as a pre-existing condition. I'm thinking possibly not, because often when a person is newly married, they waive that. Worth him calling his insurance company and asking questions...
If none of this works, write your doctor and the insurance company a really ugly, rude letter. Abstain, however, from the urge to mail it.
I have been taking chromium picholinate to curb the cravings. It works for me and the dr said it was good.
OK you guys. I am better. Hydrotherapy. I went to the creek finally. It is too far to hike to my swimming hole in 100+ so I had to settle for wading. The current is still pretty good so I stood there and let the water hit my knees then I would turn around and get my butt
I am so grateful for all of your input. Sarah, I think you are right. I need to settle for being a pred head until I can get on Humira. I can't handle the weaning thing. Then when I do wean, I will take your advice. I am hoping I will not have to increase. I think I will have to use exercise to combat the sugar thing. If I feel better, I will exercise. I was going to take a water aerobics class. I think that would be good for my spirit and my aches and pains. Those sugar replacements are YUK! The funny thing is, I never was a sweets eater before pred. I will and do keep fruit around the house and that is helpful. I have to have my licorice and my jujy fruit
I spent some time thinking in the creek (Brett was upstream wearing out the dogs
Today I am going to take pain meds regularly. I don't feel like I can handle another night like last night. I do pretty good with the pain but over time it begins to wear me out. Like slow torture. My tolerance wanes over time
I hang on to you guys for dear life lately.
Being newly married, I don't want to overwhelm poor Brett. He would do anything for me if he could. I love you guys and I am so grateful for your support. I am soooooooo glad that I am feeling calmer and I am going to make it through the day thanks to you, your advice and support. THANK YOU ALL. YOU ARE MY LILY PAD
I'm glad you're getting a little relief. How are your hip
joints? Are they tender, tight? Sometimes if the hip starts
acting up it can flare up the sciatic too, because the piriformis
muscle connects from the scacrum to the hip joint. I have had
piriformis syndrome for years, besides a hot bath, gentle massage and
stretching the glute muscles helps a great deal. I have to
stretch every morning just to get out of bed.
Hope you feel better soon, they say it's supposed to get a little cooler towards the middle of the week
Mina
Mina, My hips and butt are the majority of my pain. The heat makes my knees hurt. I am going to ask my rd about piriformis syndrome. I read about it and it sounds like the pain I am having. There is no doubt that I have hip pain too. They just throb. If joints can throb??? RD says I have erosions in the pelvis area Roxy, it might help to get an injection in your hip joints that should
get your glute, and piriformis muscles to relax, it helps me quite a
bit. It also quiets down the constant aching in my hip joints so
I can lay on my sides.
Take care,
Mina
How dare you insult my friends, Aspartame and Saccharin? The nerve!
Roxy, I think you're wise to find a place to stay with the prednisone until you get the Humira. I think you said you're at 15mg now. If you stay there or perhaps a little higher, not zigzaging, I suspect your need for the pain meds might decrease. Your body will have a steady flow of prednisone. Just keep in mind..only temporary. We've all been pred heads at one point or another.
Thinking about you!
I would never have thought one year ago that I would be looking forward to injections but it almost sounds like an ice cream sundae right now. I can't wait!!! ME ??????
Lulu
Karen, I am taking relafin and plaquenil. I have had an allergic reaction to both sulfa and mtx. I have decided not to take Arava. It got too many bad reviews
Lulu, It started for me last Sept. They also were not sure whether it was lupus, ra or a score of other auto immune disorders. I just got dx in May. The symptoms came on strong, hospitalized, and I pretty much have been dealing with it consistently since then
Karen, your little guy is too funny and I love the eyeballs Lulu.
Karen, my rd wanted me to stay on 10 mg. It was my idea to wean. I am going to quit fighting it. I won't go below 10. I am taking 15 right now. Relafin is a NSAID right? I don't know if there are any other alternatives but I hope rd does not pressure me to take arava. I want to at least try the Humira with plaquenil and relafin. I have had no side effects from plaquenil and relafin. I am going to bring Brett's insurance card today and see if they will cover the Humira.
I plan on calling pain clinic today. I will let you know what happens. Thanks everyone.
It all needs to be put together by people who know what they are doing and care.
Hey Roxy,
I think you were the one who was having the sugar cravings while you were on predisone. Does it happen on the low dose or higher ones? Im taking 20 mgs right now and am supposed to go down to10 mgs until I see my doc. I am having a sugar fit right now. Actually I really wanna eat everything in sight, but Im trying to control myself.
Shawnie
Shawnie, The higher the dose of pred. the more I crave sugar. It sucks. I think it makes sense because pred. effects glucose levels. Scroll up -Sara has some suggestions to deal with your sugar cravings. I give in to them but I am hoping if this pain can be kept at bay, I will be able to keep the weight off with exercise. I am in a lot of pain today and all weekend. I know I have gained weightHang in there hon tomorrow will b here b 4 u know it. I did scroll up and read the other post. I hafta agree asperteme is definetly a no no. It has been linked w/ diseases like MS and I think Lupus as well. But the fruit suggestion is a winner. Im gonna shop today for some frozen fruit pops. Still thinking about making a box cake but Im trying to hold off. My apetite is just off the meters. Im sitting here at the computer now and all I can think about is food(and the pain in my right wrist.) Guess if I get off my fat lazy but and exercise maybe that would kill the appetite too. Hope u get some real relief soon hon.
Shawnie
BTW: R u going to start Humaria soon? Sorry bout spelling.
I am hoping when I go see rheumy tomorrow I can start Humira asap. My husband's insurance should cover it if mine doesn't cover it, pre-existing condition. Exercise not only helps keep the weight off, it also helps to get out the frustration and make you more flexible. I buy the weight watchers ice cream, Mississippi (you do the spelling lol) mud pies are DELICIOUS. I also buy skinny cow ice cream sandwiches. My other favorites are licorice and jujy fruits. I try to ration them. The frozen fruit pops are delicious. Also, p and b sandwiches do the trick. I could go on and on. Truth is, today I hurt so bad, I am not hungry. GEEEEEEEEEESH. Roxy--I think we've had this discussion before, haven't we? You're making me fat again. Would you stop please? Don't make me reach through the screen and squeeze your lips shut....Thanks for the much needed chuckle Sara.
SARA-my Rd weaned me the same way yours is-only problem is he gets to the 10mg and MAJOR FLARE-then have to go back to 15mg to 20mg,and start by scratch all over again.this totally sucks,due to it takes weeks to stop the pain all over again,Sherry
Sherry--
Yep--that 10mg point was always the big one. Don't know why. I read your post, and wondered--why did I finally get over the hump? Could it be my biologic (Kineret) is kicking in? I am so hoping so. Are you going to try a biologic, or have you already? Maybe that will work for you...BTW, I'm on 25mg of MTX. Don't really think that's what makes the difference. I'm really thinking maybe the biologic (?)