Pain, Pain and more Pain

Hi Lupus Fighter,

   I'm probably not going to be much help with this since the only pain med I can take is Ultracet. Sometimes an increase in pred and taper back down will help. I see you take Tramadol as well. I don't know what mg your taking but your doctor may be able to increase that for a bit. Tramadol has really helped my night pain along with my electric blanket.

   I hope you get some help from your doctor next week so you will feel better for the holidays. Please keep us updated and take care. You will be in my thoughts and prayers.

                                                        Babs

Hi Lupus fighter,

 

Could your pain be from your fibro and not your lupus?  I see that you're on 15mg of prednisone.  That could definitely be one reason why you're in a lot of pain. Prednisone and Fibromyalgia don't mix.  The more pred you're on, the worse your fibro will get.  I'm dealing with that right now.  I"m on 8.5mg of pred, and I don't notice a change in my pain unless I'm on 6mg or less.  So that might be one reason why you're suffering right now.

 

I only take Naproxen and extra strength Tylenol for my pain.  I won't let myself get into the heavier pain meds.  I'm afraid of addiction!  But I do think heat and hot baths help me a lot.  Also, if I have localized pain from inflammation, I have a 10% cortisone cream that I will apply.  I need a prescription to get it.  It works great.

 

I'm sorry you're so uncomfortable right now. I can relate entirely.  My neck has been so bad for almost 2 months now.  I can hardly move my head without sharp pain. It's so tiresome. Sending cyber hugs your way! ((((((hugs)))))))

 

Ginny

Thanks everyone I never thought about fibro and the prednisone being a problem. I thought it was the Lupus because the prednisone being tapered down. I was on an extremely high dosage. I just have been having a lot of pain and yeaterday it was very intense. I am sorry that many of you are experiencing similar pains right now. Thank you for the information. I will talk to my rheumy on Thursday if I can wait until Thursday. What do you guys take for those horrible head aches? I do enjoy the hot water, the only thing is sometimes I am so drained after the heat. It seems like it takes all of my energy to get dressed after. Is this weird or what? Sometimes I feel so tired after the most basic things. I try to push myself any way but some days the bed is my best friend. I try to explain to friends and family. I don't think they get it. Sometimes I just feel like i can do any thing that is until I try to do it(lol) .

Hi! Great information and suggestions Ginny!  Lupus Fighter, you could not have gotten any better advice!  With Lupus, you will have to alter your lifestyle in it's entirety so you are comfortable with the state you are in.  As my doctor said to me, people will not always understand how sick you really are becasue they may not see a "physical wound".  They may never understand the dept of your illness, but talk to them about it anyway.  Take heed to Ginny's advice regarding the prednisone.  It will be your "best friend" when it is the only thing that will seem to give you some relief from your Lupus symptoms, but at the same time, it will make your body even more fatigued and pretty darn sore.  You have to learn to take it slow, arm yourself with as much knowledge and information on Lupus and fibro each day as you possibly can stand to read!  Knowing certain things to expect from these disesases really helps out a lot.   Take care, and never stop fighting!! 

Thanks everyone for all of the great advice. I started out at 20 mg of prednisone and keep getting fluid on my lungs so dosage was increased to 60 mg. I have been in and out of the hospital since November 2005.My rheumy has been tapering the amount since my last hospital visit which was in March 2006. My doctor has been tapering it rather slowly because of all of the previous pleury effusions.I don't know if any of you have had this experience but for me I almost always keep fluid on my chest. So the prednisone has worked with preventing the fluid build up in my chest latelty. Previously the dosage of steroids has gone up and down. Fortunately I am not having as much swelling. Just seems like some new problems. It seems that the pain is more frequently even without the swelling. This morning my elbows hurt how strange.

 

Hi
Carol,
I am doing well to today. I guess that is the weird thing about Lupus somedays everything is okay other days it's crazy. a new sympton or an old sympton show up just to remind you that Lupus is real. I pray every day that I will wake up and not have to take about 24 pills give or take depending on what's going on in my body. Boy would I be excited about not having to take so much medicine. What's odd is I am feeling better but I have not been taking my full dosage of Cell Cept because I have been nauseated I am trying to avoid the nausea I am praying that the nausea will pass so I can take my medicine corectly. If not I will have to call my nephrologists because I do not want to damage my kidneys and be stuck in a hospital after finally getting a break from that place. If I could just go a whole year since getting sick the day after ThanksGiving 2005 I would be so excited to have stayed out of the hospital.

Hey there, fighter!

 

I'm glad you're feeling better today! Small step in the right direction!

 

I was reading over your posts.  You mention pleurisy issues and fluid in your lungs.  That is rough. I had a 3 day bout of pleurisy back in 2000. That is what put me in the hospital and as a result, I got my diagnosis. I thought I was truly going to die, the pain was so bad. So I understand what that is like.

 

I'm thinking, you need to stay on a high dose for good long time.  Get this repeating fluid problem dealt with.  Being on a high dose of prednisone for a long time isn't a good thing.  But going up and down and up and down with your doseages isn't good either.  It confuses your poor adrenal glands.  It also plays havock with your fibro.  What if you were to suggest to your rheumy that you stay on 40mg or so for a few months?  See how you feel? You're going to have pain regardless of your dose of prednisone.  Especially when you're over 15mg.  Your fibro will increase regardless.  So would that be worth it to try?  I'm just sort of thinking out loud on this one.  You want your fluid issues to be seriously dealt with, and any other inflammatory concerns.  You might not be on a high enough dose of pred for a long enough time.  I was on 40mg for 8 months when I was first diagnosed!  Within one year of my diagnosis, I was into a remission that lasted 4 years. I think it mainly had to do with the length of time I was on that much prednisone. Plus, my tapering schedule was 2.5mg every two weeks.  No faster.  My maintenance dose during remission was 5mg.

I would discuss the CellCept nausea with your rheumy too.  You might be on too high of a dose of that. Keep truckin' girl.  You're doing great!

Ginny