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what do you do for your pain?

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Posted 7/16/2009 6:57 PM (GMT 0)
Hi I am having such terrible joint pain right now my ankles hurt so bad I can barely get around pain meds dont work anymore heat helps a little I want so badly to play with my 8&2 yrs grandsons immpossible! I cant lift my arms ,my wrists are useless I am pecking  ,this note because my hands scream. They put me on remicade for joint pain but still no relief can you go mad from pain? I am having crying fits everyday cuz I am just so tired of hurting I can feel myself becoming a different person I have had lupus for years but the last 8 months or so have been absolutley awful .What do you do for your pain? how do you come to the reality that this is your life?any advice would be greatly appreciated.

                                                                       Thanx so much,

                                                                                           nona

Posted 7/16/2009 7:36 PM (GMT 0)
Nona,
I'm so sorry your are experiencing so much pain. How miserable. I have to tell you pain meds do not touch my joint pain either. When I have severe joint issues the only thing that helps is higher doses of prednisone. As much as I hate the stuff, it does help my pain tremendously. I pray that you find a workable solution soon! God Bless YOu, Judy
Posted 7/16/2009 10:26 PM (GMT 0)
I am so sorry you are going through so much pain.
Have you called your doctor? I know my rheumy is very good about treating the pain - he's right, being in that much pain makes the disease actually worse.
I am allergic to aspirin, nsaids, etc. I take Darvocet very rarely as I don't want to become intolerant to it.
Last week I started generic CellCept and I cannot believe the difference - already! I told my DH that I don't quite know how to describe the feeling - kind of like numb - like not feeling anything? He laughed and said that is being "pain free" - it's been so long I honestly didn't remember.

Please check in with your doctor. I will be sending good thoughts your way. Hope you feel better, soon.
Posted 7/17/2009 11:58 PM (GMT 0)
Hi Nona. I'm so sorry ur having such terrible pain and that ur so depressed. Like Fran, I'm on Cellcept and it's been my wonder drug, but I still have pain daily.  To help manage my pain, I take Celebrex and tylenol arthritis twice daily. I also get acupuncture pretty regularly. As Judy said, sometimes we just have to buck up and increase the prednisone. Don't forget hot baths with epsom salts. Lastly, I have major depressive disorder and always see my shrink each time the crying jags start. Sometimes getting my anti-d's changed is a huge help.  I'm an educated woman and I freely admit that I can't handle the reality of lupus without anti-depressants. I hope you find some relief Sweetie. Love, Butterflake 
Posted 7/18/2009 12:47 AM (GMT 0)
Hi Nona,

 

So sorry you're suffering.  We sure know what it's like.  I've had terrible pain with my Fibromyalgia. Not so much with my Lupus.  But like the others, if I did have Lupus pain only higher doses of prednisone would help me.  For my Fibro pain the only thing that helps is an anti seizure med called Neurontin. Looks like you're on medication for your RA.  Is it your RA that is causing the pain, or your Lupus?  Both?  It's hard to know which one is the culprit sometimes. 

 

Hot or warm baths might take the edge off.  I've really had a hard time finding any real relief too.  And yes, I feel like I'm going to go loco sometimes.  I wish there was something we could do or take to make it all go away.  It's not easy living with this and it seems to get harder each year.  

Please know we're here for you and that we truly do understand. 

Blessings,

Ginny 

Posted 7/18/2009 2:06 AM (GMT 0)
Thanks so much you guys for all of the kind words and encouragement it really helps.
I agree I do need some steroids I had to put off my cytoxan treatment cuz of a stress test I had to have and I get a IV injection of steroids
with that and it does provide some relief for awhile, unfortunatly I have tried cellcept and it did not work for me that is why i am on cytoxan now, i am not sure if it is the lupus or the RA that hurts so much I tend to think its the lupus cuz I do take remicade for the RA but who can be sure? You are right though heat is the only thing that makes it bearable at the worst times.
I am so glad I found this site! It really helps just to have someone know what you are talking about thanks so much to you all and have a great weekend. nona
Posted 7/18/2009 2:53 AM (GMT 0)
I am so sorry you are in so much pain. I too had a lot of joint pain from lupus and was on several meds to control it and I continued to have pain. Me and my rheumy finally decided after a year to try Methotrexate, it has worked well especially for my hip & back pain but I do still have some kind of pain on a daily basis.

I hope you find some relief soon!
Posted 7/18/2009 5:20 AM (GMT 0)
I'm on anti-inflammatorys everyday and Methotrexate.  But, I have to say my savior is my heating pad.  Just crank that thing up and put on the sore joint(s) and usually by morning I'm feeling much better and closer to normal.  I try to cut down on food that cause inflammation (especially food with saturated fat) and really try to exercise 3 times a week.  Sometimes a heating pad isn't big enough for all the joints that hurt, so  hot bath can work or a heating blanket.  Good luck to you.
Posted 7/18/2009 2:04 PM (GMT 0)
Nona,

We all fight the pain issue. My previous rheumy would not prescribe anything for pain because she insisted on treating the symptoms so that I wouldn't have pain. That's what Stacie and Butterflake are describing. I admit that I do take a slow release Ultram every day and sometimes add Darvon to the mix. What has helped me the most is a drug called Arava. It was developed for RA patients and basically tells the joints to settle down. It has done wonders for me.

I agree that a hot bath with epson salts, accupuncture, and a masseuse who understands fibromyalgia can all give you temporary rellief. Exercise also helps me. I bought a stationary recumbent bike and after exercising on it every day for 30 minutes, within a week I felt a great difference in my energy level.

Unfortunately, as Judy said, increasing your prednisone will also help.

I know that as I lose weight, the joint pain in my hips decreases. So many of us gain weight while on prednisone, and I've fought that battle too. The added weight itself is damaging to my joints.

It's important to take charge of your pain and get proactive with it. I hope you can find something that helps yours. It's a major pain!

Hang in there!

Pat
Posted 7/27/2009 2:03 AM (GMT 0)
Hot water, rest... they are the best.... I only take one RX for my lupus... nabumatone.....I also use this pain patches called Salon Paus and they do help....
Posted 7/27/2009 7:47 AM (GMT 0)
are you on any antiinflammatories? I ask because I don't see any of the ones I am familiar with in your meds list. If the problem is inflammation heat might make you feel better but will worsen the inflammation and thus worsen the problem. Ice is what you use on inflammation. Antiinflammatories are very important because they help with pain caused by inflammation by reducing it. other than that my only advice is to try those rubs like aspercream, capsasim, icy hot, etc... that and talk to your rhuemy and maybe see a pain medicine specialist. I really hope you get some relief soon.
Posted 7/31/2009 6:07 PM (GMT 0)

nona43 said...
Hi I am having such terrible joint pain right now my ankles hurt so bad I can barely get around pain meds dont work anymore heat helps a little I want so badly to play with my 8&2 yrs grandsons immpossible! I cant lift my arms ,my wrists are useless I am pecking  ,this note because my hands scream. They put me on remicade for joint pain but still no relief can you go mad from pain? I am having crying fits everyday cuz I am just so tired of hurting I can feel myself becoming a different person I have had lupus for years but the last 8 months or so have been absolutley awful .What do you do for your pain? how do you come to the reality that this is your life?any advice would be greatly appreciated.

                                                                       Thanx so much,

                                                                                           nona

I can so relate

My ankles are what hurts the most on me. I also get knee and shoulder (just the right shoulder) pain.

Since I don't take any medication (I'll take advil when it gets really bad), but there are many other things that others have mentioned here like take baths in epson salts (for the magnesium) and peroxide (which increases oxygen), I use a hot water bottle, take suppliments and some natural anti inflammatory spices.
These all work really well for me.

If these don't work, try wine and lots and lots of chocolate :-)

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