It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Lupus Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 11-04-2007, 08:01 PM   #1
Junior Member
(female)
 
Join Date: Oct 2007
Location: Kentucky
Posts: 23
kentuckygal33 HB User
How much does Lupus hurt?

I will find out in 2 days if I have lupus. I admit I have most of the symptoms, even the "butterfly rash"...and it's depressing *as I'm sure yall know*.
My question is....I also have Fibromyalgia...I'm in constant pain, I mean horrible pain. I figured it was from the FM, but I want to know does lupus hurt? My aches go beyond joint pain and swelling. Some days I hurt so much I think I'm dying and other days I hurt so much I want to die. I have constant migranes, stiffness, I hurt so badly that I'm sore like I'm bruised after the pain finally goes away, etc... and the most scary of all--my memory is getting worse by the day. I'm only 33.
I take Elavil and Ultram for my FM. It does nothing. Besides wanting to know if lupus does in fact hurt, I would like to know what meds help you the most and what at home treatments help also....as in hot baths, hot/cold compresses, vitamins, exercises, etc..
Any info would be very appreciated.

 
Old 11-05-2007, 03:38 AM   #2
Facilitator
(female)
 
Join Date: Feb 2004
Posts: 4,960
VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
Re: How much does Lupus hurt?

Hi. Yes, lupus arthritis can definitely bring a LOT of inflammatory pain. I've certainly had what you cited. My weirdest one? Soles of feet. (And my lupus is relatively mild...)

Ditto on migraines. I was given Fiornal or Bellergal. A suggestion: ask for copy of your bloodwork to see if tests were run for antiphospholipid syndrome (APS), a clotting disorder in which migraines are featured. There's a sticky post (= informational post) on APS at the top of the thread list.

My memory goes fuzzy during flares, leading to many moments!

I take Plaquenil (an antimalarial) and OTC ibuprofen as needed; plus I have to avoid/block sun. (Antimalarials are appropriate only if there's no major organ involvement; otherwise, steroids &/or immunosupressants are required.) I do regular follow-ups & also have my eyes checked 2X a year. FYI, Plaquenil has made a HUGE difference for me, and it's considered a pretty safe drug.

When I'm in big pain, I chill out. I avoid high-impact exercise in favor of walking, yoga, Pilates, etc. I keep my weight in normal range & eat little junk food; and I take calcium & a multi-vitamin. FYI, what you DON'T want to do if you have lupus is take anything to "boost" your immune system. Why? In lupus, it's ALREADY in overdrive & is doing aberrant things. You do NOT want to accelerate that process; you want to SLOW it.

As for your test results, here's hoping you get meaningful answers ASAP. Some people don't get answers so quickly, I'm sure you've read---so if you don't, you just keep trying, OK?! Speaking of reading, you could look in your local library or bookstore for lupus hardcovers to browse. One terrific rheumie/author is Dr. Daniel Wallace & another is Dr. Robert Lahita.

After your appt., let us know how it went, OK? I hope you don't have lupus, but if you do?---well, that you find that out & get the treatment & ongoing care you require. May better days start Tuesday! All my best wishes, Vee

 
Sponsors Lightbulb
   
Old 11-05-2007, 01:55 PM   #3
Senior Member
(female)
 
Join Date: Aug 2006
Location: southeast Indiana U.S.A.
Posts: 248
realisticchic HB User
Re: How much does Lupus hurt?

to me, Lupus hurts a whole heck of a lot. The migrains and myositis and bowel trouble being the worst, second place would be pluerisy, costochondritis, and liver pain. sore swollen joints come in last place....in short Lupus bites, it hurts a lot.

 
Old 11-05-2007, 03:23 PM   #4
Junior Member
(female)
 
Join Date: Nov 2007
Location: sutherlin,Oregon,USA
Posts: 14
SarinaRose123 HB User
Re: How much does Lupus hurt?

i'm sorry to hear you might have lupus ontop of FM but i have lupus and think i might have FM, odd.... but YES it hurts like MAD CRAZY!!! i HATE the bowl problem and when my joints hurt the pain shoots down my leg and to connecting joints. like from my hip to my knee and then my ankle. or others because every joint hurts. i mean, hands, elbows, shoulders, wrists, back, neck, hips, knees, ankles, feet, even fingers and toes. and the pain becomes soooo unbearable i just lay there and it seems like im in so much pain my body CANT move. then i have small headaches. (mind you i have only had lupus for about 5 years) So some symptoms arent as bad as they can be right now. oooh and i dont know if this is lupus or FM or something else but i have simular pain of my joints in my muscles. you know like the whole leg hurts when i get a flare up. 1st the joints then the pain spreads to the rest of the leg aroung that joint. and as for the rash, i have nothing yet really. i have a small red spot on my cheek. and sometimes its a little worse and gets redder there and redish on my othercheek and above my nose on the forehead. nothing bad yet, but it could change. and you dont want me started on the memory (i'll forget) no really i have a bad memory and it worsen as we speek. my short term isnt bad and long term is gone. and i mean like 3 days is as long as i can remember back and sometimes only like 1 or 2 days. i'm only 21 and have alot more to NOT look foward too!! but i take 600mg IBU and thats all right now. i dont have a specialist and i dont see my "doctor" much more than once a month (if i'm lucky) i refuse to take hardcore pain pills, because i fear speeding up the prosses of this crap. i hate taking the IBU but it helps sometimes. usually enough to get through work. i dont know anything about Elavil, but i do know that ultram (tramidol) is not one of the best meds out there if it doesnt work i would talk to your doc about getting off it! REALLY REALLY! honestly really really honestly i plain on getting my medical marajana card, i have seen it doo so much for FM and epilepsy and alll other things, i know it can help! BUT thats my opinion and you need to think about whats right for you! also you know what has helped me through the pain and deppression and the everyday crap, belly dancing. dont ever ever push you self and dont learn fance snazey moves, just sticking with fun, exersizive dance moves and it has help SOOO much with it all. not to mention you self image. when you dance the belly way you feel soo good about your self you become happy, theres you anti-deppresant right there! hope i helped you out. and again sorry its SOOO freakin long *Sarina~

 
Old 11-07-2007, 11:42 AM   #5
Senior Veteran
(female)
 
Join Date: May 2006
Location: Atascadero ,Ca.
Posts: 537
kathryn+2 HB Userkathryn+2 HB User
Re: How much does Lupus hurt?

I thought I had FMS for the longest time because my tests kept coming back negitive for anything autoimmune. I hurt everywhere ,all the time. Finally I got an elevated ana ,and was diagnosed with lupus. I was put on plaquenil and i am feeling so much better. So you may find out that you don't have FMS after all,and the pain you are experiencing is from lupus. In which case hopefully the plaquenil will help you as much as it does me.
good luck, Kat

 
Old 11-09-2007, 07:41 PM   #6
Newbie
(female)
 
Join Date: Nov 2007
Location: porter,tx usa
Posts: 3
therese68 HB User
Re: How much does Lupus hurt?

I was diagnosed with SLE and FM in 1993, but have tracked back to 1984 when I was in my early twenties. My first suggestion to anyone who has SLE or FM is to get a good Rheumatologist. I have been on Plaquenil since '93. I have taken many stronger and riskier drugs but have never been able to be off the Plaquenil. I have been on a drug called Cellcept since 2004. It is mainly used to keep transplant patients from rejecting their new organ. It basically shuts down you immune system. Of all the drugs I have taken I like this one the most, it has very few side affects. From taking Prednisone for about 7-8 years I developed neucrosis of my bones. So my advise is to try not to take too many steroids if possible, also be care full with antiinflammitories. I have developed stage 3 renal disease and now cannot take any antiinflammitories. Try to surround yourself with good caring people. Don't waste your time and energy on one who don't care about you. Keep your stress level down. Find a support group in your area. I pray alot.

 
Old 11-09-2007, 11:47 PM   #7
Newbie
(female)
 
Join Date: Sep 2007
Location: CRITTENDEN, KY, USA
Posts: 7
brina671 HB User
Re: How much does Lupus hurt?

KENTUCKY GAL--

I live in KY and have lupus and fibromyalgia. I wish I knew someone personally that knew what I go through so I would have someone to talk to. Where do you live in KY? I live in northern KY. I have so much pain some days that I have thought of suicide several times. At times I think my kids and husband would be better off if I would just do it and hopefully he would remarry someone "normal" and my kids could have a "normal mom" and my husband could have a "normal wife". But somehow I keep on going. I am now 36 years old. I started with Elavil and Ultram about 9 years ago and then switched to different antidepressants and pain meds including Vicodin, pain patch, and I am now on OxyContin, Cymbalta, Ritalin for energy, weight loss, and brain fog, Plaquenil and this helps. Yes I still have very bad days, but at least I have some days where I can feel a little normal. I am scared that when I am 50 that I will be out of options as far as pain meds because of tolerance, but I couldn't live in the pain I was in or I was going to kill myself. You have to do what is best for you. I take hot baths and use a heating pad when its bad which helps some.

I don't know how long you have had it, but you got a long road ahead of you as I'm sure most of people suffering lupus know. Make sure you have a good doctor that listens to you and actually cares rather than someone who doesn't listen or thinks you are just drug seeking. I hope you find some relief. Hang in there. Best of luck.

 
Old 11-12-2007, 10:05 PM   #8
Junior Member
(female)
 
Join Date: Nov 2007
Location: Southeast US
Posts: 15
mysobriquet HB User
Re: How much does Lupus hurt?

how were the test results? i don't think i saw a follow up for you...

either way, I'm sorry to hear you are suffering...

as for my pain, it sucks so hard... I have never been diagnosed fibro but have 4 pressure points where the sensitivity feels like a punch if someone just barely puts any pressure at all...

my joint pain really varies... some days, none at all... somedays, even the joints in my fingers ache constantly... last night, getting out of the bath, just resting on my news for a moment to crawl out of the tub caused stabbing and shooting pain...

i used to have more pain but i quit exercising and that helped a lot... i know, i know not recommended... but my body couldn't take it... my hip was one of my most painful joints... and my knee... i need a total replacement at 28... so it sort of sucks, like i said...

i don't take pain meds... i don't get along well w/them... vicodin makes me mean and percoset make me stupid... ive taken about 10 tramadol in my life... and those are too close to the med effexor for my liking... i just take about a bottle of ibuprofen per month... that helps... i'm on meds to help my stomach w/the ibuprofen... so it works out ok for me...

hot baths (my jetted tub) are amazing... i'd recommend investing in a good mattress and appropriate shoes (neither of which i won...but hope to soon) to help support you throughout all hours of the day...

even something as simple as an ill fitting bra can make my entire upper body ache with severe pain...

i guess that's it for now, good luck w/it...i feel i have a high tolerance for pain... so mostly, it makes me really exhausted... i have no fixes for that...

hugs and good luck

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Does anyone have these symptoms? Lizzy73 Lupus 13 10-20-2008 07:16 AM
Does lupus always show up in blood work? k2626 Lupus 13 09-29-2008 12:56 PM
Migratory pain? Does it migrate day to day or just flare up to flare up? popeyeslove Lupus 2 06-26-2007 11:15 AM
Does Lupus Cause Blurred Vision Please Help! Burnt Bees Lupus 15 04-12-2006 08:59 AM
Does anyone go to a nurtrionist? ? about proper nutrition for lupus sufferers southjerseymom Lupus 10 03-26-2006 03:41 PM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



VeeJ (173), ladybud (43), AngelicBrat (16), luca689 (7), ksp (6), neveragain444 (6), luvinmusiq (5), brooklyngirl (4), Daisygrace (4), AgedFlowerChild (3)

Site Wide Totals

teteri66 (1180), MSJayhawk (1009), Apollo123 (909), Titchou (856), janewhite1 (823), Gabriel (760), ladybud (755), midwest1 (669), sammy64 (668), BlueSkies14 (607)



All times are GMT -7. The time now is 08:36 PM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!