Pain, Pain and more Pain

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lupus fighter
Regular Member


Date Joined Nov 2007
Total Posts : 50
   Posted 12/8/2007 5:18 PM (GMT -7)   
cool   I am have a rather difficult day today I have been exhausted and hurting ever where. Nothing is working today I think I may need to get some different medicines. Any suggestions for pain management I see my rheumy next week. I know some of you are taking the same ones I am taking. Please help!!!!!!!!!!!
Loving Life 
 
 
Diagnosis Lupus Sle 2006, Fibro 2006, Nephirits 2007, anemia 2005,  Hypertension 2006.
 
Plaquenil 400 mg, Prednisone 15 mg, Cell Cept 3000 mg, Diovan 320, Procardia 120 Mg, Fosonopril 80 mg, Iron supplement, Calcuim W/ Vitamin D, Folic Acid, Tramadol


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 12/8/2007 7:39 PM (GMT -7)   
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
 
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
Meds:arava,prednisone,plavix,aspirin,protonix,,zanaflex,xanax,
mirapex,advair,foxamax,Vytorin,folicacid,lunesta,Tramadol
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


RebeccaDestiny
Regular Member


Date Joined Nov 2007
Total Posts : 47
   Posted 12/8/2007 7:52 PM (GMT -7)   
I'm sorry you're having a rough time, I am too.. I just got out of the hospital recently. I've been having a really bad flare, not only with my lupus but the FM, and my OA.. They upped my prednisone a lot, along with my lyrica.. and put me on large doses of oxycodone, with no tylenol because the pain is so bad I'm having to use a wheelchair lately, I hope you get something figured out.
Diagnosis - SLE, FM, high blood pressure, A-fib, SVT, renal stenosis.. Biliary C, seizures, hypoklemia, anemia, ovarian tumor, arthritis. chronic kidney stones.
Medications - Oxycodone, ativan, lyrica, metrapolol, zantac, prednisone, plaquinil, cellcept, phenagren, potassium, shots of cortisone, shots of lidocaine.
http://www.myspace.com/lupusgroup
Help spread awareness.


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 12/8/2007 10:59 PM (GMT -7)   
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
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, neutropenia, thrombocytopenia. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


4mylife
New Member


Date Joined May 2006
Total Posts : 15
   Posted 12/8/2007 11:24 PM (GMT -7)   

Hi, Lupus fighter, RebeccaDestiny and Everyone,

I'm sorry to hear of the pain struggles each is going through.  I have had a rough day today also, and for the last few days acutally.  It has been miserable and exhausting!!  I felt really bad today because I couldn't spend the time with my children to go Christmas shopping.  This is when it gets me the most.  I get so tired of having to disappoint them because I'm not feeling well or am too ill to participate in activities. 

I take Tramadol too.  Most of he time it eases the pain, and lets me get some sleep. Agree with Ginny, the heating pad and hot baths/showers have sometimes been my lifesavers.  I add  a little something to help relax me, like jasmine or chamamile to the hot bath, along with a little Epson salt.  It does the trick. :-)   Also good point regarding the prednisone and the Fibro.  This could be the culprit.

My thoughts are with you all.  RebeccaDestiny, my prayers are with you too. 


Love and blessingsā€¦

 

TLB

__________________________________________________________________________________
Diagnosed with SLE 2000; depression, anemia, migraine headaches, GI Inflamation, Acid Reflux Disease, Plantar Fasciitis, Rheumatiod Arthritis; 2001 UCTD (Undifferentiated Connective Tissue Disease), Fibromyalgia, Carpel Tunnel, severe nerve damage


lupus fighter
Regular Member


Date Joined Nov 2007
Total Posts : 50
   Posted 12/9/2007 2:29 PM (GMT -7)   
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) .
Loving Life 
 
 
Diagnosis Lupus Sle 2006, Fibro 2006, Nephirits 2007, anemia 2005,  Hypertension 2006.
 
Plaquenil 400 mg, Prednisone 15 mg, Cell Cept 3000 mg, Diovan 320, Procardia 120 Mg, Fosonopril 80 mg, Iron supplement, Calcuim W/ Vitamin D, Folic Acid, Tramadol


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 12/9/2007 3:00 PM (GMT -7)   
Hi Lupus Fighter,
 
You know. It took me a few years to see figure out what was causing my pain.  Was it the lupus, or the fibro?  Then my rheumy told me to try something and see what happened.  This was during a time when I was in a mild lupus and mild fibro flare at the same time.  So, she had me increase my prednisone, and if I felt better and the pain went away, then it was a lupus flare and pain that I was experiencing.  If by increasing the prednisone, I got worse with the pain and how I felt, then it was the fibro that was to blame.  It doesn't take long to see a difference either way.  Just a few days.  For the headache pain, I only take extra strength Tylenol, and a good sleep!  Putting some light pressure on the temples works too.
 
For me, the main source of my pain is the fibro.  So being on anything more than 6 or 7mg of prednisone will make me pretty sore.  Unfortunately, my lupus wants me to be at 8.5mg right now. So I'm probaby suffering from a bit of both conditions.  That might be your case too.  A bit of both.
 
What dose of prednisone did you taper down from?  How long did it take for you to reach the current 15mg?  If you go too fast on the taper, that can cause problems with additional pain as well.  The most you should do is 2.5mg every two weeks.  Just in case you didn't know!  Slower is better with prednisone.  Less chance of a rebound flare.
 
Oh, 4mylife had a great suggestion with the Epson salts.  Those are great!  Whatever you do, don't try to push yourself. You'll be taking one step forward and two steps back if you do that.  Having lupus means changing your lifestyle, and how you do everything.  It's not easy and quick to learn though. We've all had issues changing our lives and trying to get others to understand what it's like.  The only people who understand are those of us with lupus and fibro.  That is why this forum is so important and wonderful!  It might be an interesting idea to have your friends and family take a peek at the posts on here, and learn from us all.
 
Take care and keep fighting!!
Ginny 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, neutropenia, thrombocytopenia. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


4mylife
New Member


Date Joined May 2006
Total Posts : 15
   Posted 12/9/2007 9:33 PM (GMT -7)   

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!! 


Love and blessingsā€¦

 

TLB

__________________________________________________________________________________
Diagnosed with SLE 2000; depression, anemia, migraine headaches, GI Inflamation, Acid Reflux Disease, Plantar Fasciitis, Rheumatiod Arthritis; 2001 UCTD (Undifferentiated Connective Tissue Disease), Fibromyalgia, Carpel Tunnel, severe nerve damage


Weleetka
Regular Member


Date Joined Oct 2007
Total Posts : 184
   Posted 12/9/2007 10:29 PM (GMT -7)   
I agree with what ginny said... the hot water has saved me many times... Get the water just as hot as you can stand it and just sit there....I've been to where I could hardly move at night and go and take a hot bath and get some rest and somehow the next morning I can get up...

lupus fighter
Regular Member


Date Joined Nov 2007
Total Posts : 50
   Posted 12/10/2007 7:47 AM (GMT -7)   
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.
:-)  
Loving Life 
 
 
Diagnosis Lupus Sle 2006, Fibro 2006, Nephirits 2007, anemia 2005,  Hypertension 2006.
 
Plaquenil 400 mg, Prednisone 15 mg, Cell Cept 3000 mg, Diovan 320, Procardia 120 Mg, Fosonopril 80 mg, Iron supplement, Calcuim W/ Vitamin D, Folic Acid, Tramadol


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 12/13/2007 7:03 AM (GMT -7)   
Hi Lupus fighter, I'm sorry you are having such a rough time. I do tend to have a lot of fluid build up in my chest. My doctor keeps me on triamterene. For pain I take vicodin but it doesn't work as well as flexeril. I have been aking valium some too and it seems like that elps when I am to the point of just not being able to handle the pain and stress any more. Just being able to let my body relax seems to do more good than anything else.
I hope you and your doctor can come up with somthing that will work for ya
hugs carol
God Bless
Lupus like symptoms, with pbc symptoms, stage 4 COPD w/CHF,  Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Plaquanil800mg,vicodin 4x5mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
 
 
 


lupus fighter
Regular Member


Date Joined Nov 2007
Total Posts : 50
   Posted 12/13/2007 3:52 PM (GMT -7)   
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.
Loving Life 
 
 
Diagnosis Lupus Sle 2006, Fibro 2006, Nephirits 2007, anemia 2005,  Hypertension 2006.
 
Plaquenil 400 mg, Prednisone 15 mg, Cell Cept 3000 mg, Diovan 320, Procardia 120 Mg, Fosonopril 80 mg, Iron supplement, Calcuim W/ Vitamin D, Folic Acid, Tramadol


lupus fighter
Regular Member


Date Joined Nov 2007
Total Posts : 50
   Posted 12/16/2007 7:54 PM (GMT -7)   
Thanks everyone for all of the great advice
Loving Life 
 
 
Diagnosis Lupus Sle 2006, Fibro 2006, Nephirits 2007, anemia 2005,  Hypertension 2006.
 
Plaquenil 400 mg, Prednisone 15 mg, Cell Cept 3000 mg, Diovan 320, Procardia 120 Mg, Fosonopril 80 mg, Iron supplement, Calcuim W/ Vitamin D, Folic Acid, Tramadol


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 12/16/2007 9:01 PM (GMT -7)   
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 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, neutropenia, thrombocytopenia. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


lupus fighter
Regular Member


Date Joined Nov 2007
Total Posts : 50
   Posted 12/18/2007 3:32 PM (GMT -7)   
Thanks Ginny for the great advice. I am feeling rather frustrated because according to my doctor my labs look great so I should not be having thaT MUCH PAIN. i WANT TO JUST SCREAM at her!!!!! I am feeling like maybe it is time to get another doctor. I mention the pain issues and asked if she could recommend something she suggested Tylenol extra strength if I just wanted to scream. I don't think she gets it at all. I was looking at the medicines of other patients and I am just feeling frustrated. It's not like no one wants to take a ton of medicines for fun. She acts like it can't be that bad.
Loving Life 
 
 
Diagnosis Lupus Sle 2006, Fibro 2006, Nephirits 2007, anemia 2005,  Hypertension 2006.
 
Plaquenil 400 mg, Prednisone 15 mg, Cell Cept 3000 mg, Diovan 320, Procardia 120 Mg, Fosonopril 80 mg, Iron supplement, Calcuim W/ Vitamin D, Folic Acid, Tramadol

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