Undertreated Pain?

have you experienced long periods of Lupus headache pain?
9
Yes - 81.8%
2
No - 18.2%

 
New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Ishy
New Member


Date Joined Nov 2007
Total Posts : 9
   Posted 11/24/2007 12:03 PM (GMT -7)   
Hi, I am new to this forum. I have had SLE (diagnosed) for almost two years.
Last August , I experienced the dreaded lupus haeadache for 5 days. I really wanted to kill myself, because I thought it would not end. My rhuemy put me on 5/500 hydrocodone and prednisone, but my pain was not touched.
I was so disturbed by the pain and the depression resulting from it that I saw a psychiatrist in September. He told me I was undertreated for the pain, and of course put me on an SSRI.
I am curious--do any of you find that you are not being adequately treated for pain? I would think rhuemy's would know what we experience and try to treat us as best they can.
Ishy
 

Ishy
New Member


Date Joined Nov 2007
Total Posts : 9
   Posted 11/24/2007 12:07 PM (GMT -7)   
*Also, what do you use to treat severe lupus headache?

okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 11/24/2007 1:03 PM (GMT -7)   
HI Ishy, welcome to the group. I'm sorry you have been struggleing with the pain and Headaches. I don't have prolonged headaches so I can't help you there but I know others will have some great advice for you on that. I do know that sometimes ice on your neck can help some. As for the other pain Have you told your rheumy that the pain meds aren't Helping? If you havn't you need to. If you have and they havn't helped you with somthing else than you need to serch out another rheumy.
I know that psychiatrist can treat you with anti-d's for chronic pain but is it helping any? You shouldn't have to be in so much pain all the time. While it's true that somtimes you will be in pain but not all the time. Are you taking plaquenil? what other meds are you taking? When I'm in a lot of pain vicodin doesn't do anything to help me. I usually have to double or triple up on my predisone for a few days until the inflmation goes away.
Anyway I hope others here can get you some good info to help you get on the right track.
again welcome to the group
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
 
 
 


Ishy
New Member


Date Joined Nov 2007
Total Posts : 9
   Posted 11/24/2007 1:18 PM (GMT -7)   

Carol,

Thanks so much for replying. I think being in a "group" will do me good.

I did tell my rhuemy that it wasn't helping, and he said he'd have to put me on super addictive meds since the hydrocodone 5/500 wasn't working. He then said I should just battle through it with the 5/500's. I agreed in part because I don't want to become physically dependant on anything.

When I talked with my psych and told him everything, he said there is a stronger version of hydro, called norco, which is 10/325, which allows you to use 2 at a time for severe pain. My rhuemy said that the 5/500's were the strongest hydrocodone meds availaibale. My psych said this was not so. I wonder why my rhuemy would not know that?

Since seeing the psych, I now have norco, and sometimes it isn't effective either. I do have to take 2 for it to work. I also start prednisone immediately when this happens. I have done a lot of research, and apparently the lupus headache can occur even when disease activity is low....odd, eh? I would think otherwise. I was on plaquenil for months and stopped because of side effects. I prefer prednisone.

I do notice an increase in headache when my Raynaud's is worse...

 

 

I have: SLE, Raynaud's, Livido Reticularis, joint pain and headache, rashes, pleurisy, heart palp.

Meds: Fish Oil, DHEA, prednsione 10 mg. Norco, aspirin, vicodin 5/500, ssri


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 11/24/2007 6:21 PM (GMT -7)   
Hi Ishy:

I'm sorry to hear that you've got so much pain and that it's not controlled. I went through a period of time where I was have headaches so bad I couldn't stand up. I tried everything available for migraine headaches. I finally ended up with taking Zomig when I've got a terrible headache. The period of time of the headaches where for about 8 months back in 1997. Since then I only get a terrible headache maybe 3 times a year.

However, I've got RA and fibro in addition to my lupus. Plus a blood cancer called (MDS), I've got serious pain issues. I've tried everything on the market that's natural and I've had to rely on narcotic pain meds to control my pain. So I truly feel for you and understand your pain. I hope that your doctor continues to treat your pain and that it's kept under control. Good luck on taking the prednisone. I've been on it for 7 years now and I have been at a fairly high dose, so I've had lots of terrible side effects from it. I hope that you'll be able to stay on a lower dose so that you don't experience the horrible side effects of prednisone.

Wishing you the best and welcome to the forum. Please keep us posted on how things are going.

Take care,
Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 11/24/2007 7:02 PM (GMT -7)   
Welcome to the forum Ishy.

Most Lupans take plaquenil in addition to other anti-inflams which may include prednisone and/or OTC or RX anti-inflams. The plaq is important if you can take it. Some members here have found that even though they can't take the generic plaquenil, they do fine with the name brand. Something in the fillers.

I wonder if your doc could suggest an additional anti-inflam as this would help relief any inflamation/swelling that may be a good part of your headache. Some of us also get extra relief by adding an antihistamine to the mix (make sure its ok with your doctor). For some reason that can increase the effectiveness of even the OTC meds like Ibuprofen.

Some anti-depression meds also help combat pain. Cymbalta is a good example. You won't feel an immediate affect. The benefit is cumulative (as with Plaquenil) and it take a while to build up in your system.

*sigh* So sorry you are having so much trouble. Keep working on the right combination. As long as the rheumy is working with you, I wouldn't make a switch. But if he is ignoring your pain, its time for a new doctor.

Welcome to the forum. YES, it is a great help being part of this group!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Audrey Ann
Veteran Member


Date Joined Jul 2005
Total Posts : 815
   Posted 11/24/2007 9:10 PM (GMT -7)   
Welcome Ishy!

Many doctors fear the addictive potential of serious pain medication. It is important to keep ahead of pain, however, to prevent it from taking over. I am fortunate that my family doctor handles my pain meds for me but that is because he helps me through my kidney stone problems and the pain meds he gives me helps with the joint pain and the headaches I experience. Do you have a family doctor who could work with you? Or, do you think one of your doctors would be willing to refer you to a pain clinic? The pain clinic at the University of Michigan Medical Center has been great for me and many of my friends. Just an idea... My thoughts and prayers are with you!
Prayers,
Audrey Ann
 
Lupus and RA and LOTS of Medications!
 


 


Ishy
New Member


Date Joined Nov 2007
Total Posts : 9
   Posted 11/24/2007 9:30 PM (GMT -7)   

Thanks for all your responses--

To Audrey,

What kind of meds do you get from your doctor? Is it along the same lines as Norco? Are pain clinics effective? Do you find that (some) Docs are scared to treat the pain? I think you cannot quantify SLE pain as easily as you can cancer pain.....thus the undertreatment?

Ishy


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 11/24/2007 10:32 PM (GMT -7)   
Hi Ishy,
   I'm sorry your suffering with so many headaches. I use to get them alot as well. Mine have gotten better the last few years. Some of us get Migraines with lupus that can get pretty bad.
  I have problems with pain meds as well. They either make me sick at my stomach or I get rashes. When I was getting migraines, I took Imitrex and it worked well. If I get a headache now I take Tramadal. It's not great but, helps some. Please keep us updated and take care. YOu will be in my thoughts and prayer.
                                                            Babs
 
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
Meds:Methotrexate,plavix,aspirin,protonix,,zanaflex,xanax,
mirapex,advair,foxamax,Vytorin,folic acid,prednisone,lunesta,Chantrix,Tramadol,Nitro.
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


Audrey Ann
Veteran Member


Date Joined Jul 2005
Total Posts : 815
   Posted 11/25/2007 9:29 AM (GMT -7)   
Ishy, yes, I do believe some doctors fear treating pain. It is so hard for them to really know what you are feeling. And, yes, cancer seems to be a more accepted cause of pain. My family doctor has me on methadone for my pain management. This older drug was used mostly for heroin addicts - I think, or something like that - but it is an excellent pain medication for chronic pain sufferers. The methadone does not make me "loopy" and I can function in my career and in life while benefitting from the pain relief. My family doc says he has no problem keeping me on the methadone even until I am in my nineties. I certainly hope I don't need to take it that long, but, who knows? Maybe something better will be invented by then!

I had much success from the U of M Pain clinic when I first had my major kidney stone episodes. This was way before lupus was even considered for me. They had me on elevil (sp?) for about a year and this helped me immensely.
Prayers,
Audrey Ann
 
Lupus and RA and LOTS of Medications!
 


 


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 11/25/2007 5:17 PM (GMT -7)   
I take darvocet now due to pregnancy, but use tramadol when I am not pregnant. I also use benedryl and an anti-nausea med when a bad headache comes on. The ER will dose me with an anti-inflammatory via IV along with benedryl and anti-nausea (IV). When home treatment doesn't work I go to the ER and say I have a migraine not responding to home treatment. ER doctors freak when they hear lupus headache but treat you fast with migraine. My neuro said lupus headache and migraine are similar and the same treatments can work on both- has to do with blood flow in the brain (vascular headaches). I suggest a neurologist for the headaches. Seriously they have more knowledge on how to treat headaches caused by neuro problems than even a rheumy. Also sounds like a pain management doctor would be a good idea since they tend to treat pain more aggressively and know that addiction to pain meds (mental addiction that is) is uncommon in chronic pain sufferers.
Dx:fibromyalgia 2002, systematic lupus 2005, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin,Prednisone


Ishy
New Member


Date Joined Nov 2007
Total Posts : 9
   Posted 11/25/2007 8:13 PM (GMT -7)   
Thanks. I should see a neurologist. I will ask for a referral. I think mentioning Lupus at all scares most Docs to death. My (old) GP told me he' d rather have R.A or AIDS than Lupus. How rude!

redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 11/26/2007 9:45 AM (GMT -7)   
I would rather have lupus than AIDS. Sorry, but lupus you can live with AIDS kills every single person who gets it though now many are living longer. I have R.A. to go with the lupus and I can say I would rather just have lupus. My hands are in bad shape even with medication and they are vital to my ability to do what I love.
Dx:fibromyalgia 2002, systematic lupus 2005, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin,Prednisone


Ishy
New Member


Date Joined Nov 2007
Total Posts : 9
   Posted 11/26/2007 12:19 PM (GMT -7)   
I think it just highlights how insensitive some physicians can be about SLE...or maybe their lack of knowledge about the disease.

RebeccaDestiny
Regular Member


Date Joined Nov 2007
Total Posts : 47
   Posted 11/27/2007 8:47 AM (GMT -7)   
I'm sorry to hear about the headaches, I totally understand though.. I've debilitating headaches since I was about 13 years old. Sometimes I'll get them so bad for weeks at a time, that I can't do anything at all. I was put on depakote for the seizures that I have.. and since I've been taking that, I've noticed that my headaches aren't near as frequent. They will barely put me on pain meds because of fear that it'll make my liver worse. I hope you find something that helps.
Diagnosis - SLE, FM, high blood pressure, A-fib, tachy cardia, renal stenosis.. Biliary C, seizures, hypoklemia, anemia, ovarian tumor, arthritis.
Medications - Depakote, ativan, lyrica, metrapolol, zantac.


Dakota0917
Regular Member


Date Joined Oct 2007
Total Posts : 100
   Posted 11/28/2007 7:17 AM (GMT -7)   
I know EXACTLY what you are going thru. For about two month straight, I had dibilitating headaches - so much so I called the rheumy and said - if you don't make them stop - I'm going to put a bullet in my head. He sent me to my PCP. The PCP upped my prednisone to 30 mg / day - which took the edge off - but didn't make it go away completely. Went back to the rheumy and he sent me to a neurologist because he was afraid I had brain involvement with the lupus. Turns out the neurologist is the best thing that happened to me! The neurologist took one look at my list of medications and said: What if I told you one of the medications you are taking are causing your headaches? Since I didn't have any other explanation - I had to believe him. Turns out, it was the darvocet the rheumy had put me on to try to help get rid of joint pain. The neuro told me if you have migraines - you should never take a narcotic - they cause rebound headaches - which is what I was having. The neurologist said no more darvocet and no more fiorinal (which is what I had taken previously for migraines). He put me on 1500 mg / day of Keppra for 5 days (which is an anti-seizure med) and also started me on Topamax. I've not had a headache since. The topamax works to make you get less headaches. It won't stop one if one starts however. There are other medications for that.
SLE: 07/07, Irritable Bowel Syndrome, migraines
400 mg. plaquenil, 25 mg. prednisone, 2400 mg. ibuprofin, 15 mg. methotrexate, folic acid, asacol, caltrate-D, wellbutrin, paxil

New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, December 06, 2016 3:15 AM (GMT -7)
There are a total of 2,733,406 posts in 301,114 threads.
View Active Threads


Who's Online
This forum has 151254 registered members. Please welcome our newest member, Amir5600.
193 Guest(s), 2 Registered Member(s) are currently online.  Details
gitane44, Stetsonva


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer