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Discussion Starter · #1 ·
I guess I am looking into a whole new area of research here, but I wonder if long term use of our pain meds causes our Lupus to get worse?

What are you opinions and knowledge, if any, on this issue? :worried:
 

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Hi Pauline,

This is strictly an opinion and a guess on my part. I would say that pain medication does not cause lupus to get worse.

I have felt a lot better since my pain issues have been addressed. I am able to function better. There still seem to be days that no matter what I do the pain will not let up. Also, I am still limited in the amount of activitly I can engage in before the pain beats the meds and wins the race. But for the most part the treatment for pain has made my life much more livable. I also have regular injections for pain in my knees, hips and back. The injections help and I have found that until the effect of the injection wears off I am able to cut back a bit on the pain meds.

The key, I believe, is to find a REALLY good pain doc, a physiatrist I think is what my doc is. Stay away from pain clinics. They won't treat your pain, they'll play games with you.

Don't worry about things like the lupus getting worse. It won't turn on you because of pain meds, but the pain meds may give you a chance to feel like there is hope and occasional bouts of sanity. Less pain = less stress and less depression. You'd be amazed how things can turn around when excrutiating pain becomes mild for a while. You have to keep on top of things and it will not be all roses. It is still an uphill battle but one that will make your life more manageble.

This is not coming out right and I'm rambling but you get the idea. Pain meds will make your life better, not worse.

Love:flowery:

Julie
 

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Pauline,
I agree with Julie. It is my opinion and what I have personally experienced.

I don't believe pain meds can cause our Lupus to worsen.

My own experience over the 11 yrs. is I have a higher tolerance to pain meds.

I do not take pain meds on a daily, weekly or even monthly basis.
I only use them in extremely bad flares or health issues.

As I say this I ended up In the hospital for 5 days for galllbladder pain relief and eventually removal. I was told by a nurse who did a minor surgery on me (the meds had not kicked in and the dose not strong enough so I ended crying and literally screaming out in pain.) After the minor surgery the nurse apologized saying she didn't realize I had Lupus and had she known she would had given me my meds earlier and a stonger dose. It was a very scary experience not because of the extreme pain I felt, but the pain made my bp drop into dangerous levels( they were IV pushing this, Iv pushing that)

After I talked to my dr. and I told him what happened and I said am I tolerant to pain meds because I have had been sick for the past 11yrs. and he said you would be tolerant if you only had been sick 3 yrs.

I am able for the most part to manage my pain w/ nsaids and a muscle relaxer. I also have a problem w/ being allergic to a lot of pain meds.

I know I rambled on, but I just wanted you to know about the tolerance because I had seen that in another post of yours.

When I have to use a pain med-the one that works best for me is Darvocet-n-100. Everyone is different, but I have never heard complaints about this one like you do about the other meds.

I do hope you can get your pain under control.
Have a good weekend,
Becca:xmas3:


 

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Paulin,

I take pain medication every single day, several times a day. I am on the strongest narcotics available. Taking pain medications won't affect your lupus in my opinion as lupus is an organic type disease. Those of us on daily pain medication are never without pain. The point of pain management is to make life more comfortable for the patient. Usually doctors hope to get a patients quality of life pain levels down to a 4 on a scale of 1 -10, for me we get to be happy with a 6.

What I am trying to say is that pain medication shouldn't make us go out an overdo things which can make lupus flare up at times.

Just my 2 cents,
Karen
 

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Chronic (daily, ongoing) pain is different from acute pain (such as an injury or surgery), and are treated differently. Most abuse of narcotics occur when a patient continues to take pain medication after the acute pain has subsided.

Chronic pain, left untreated, or undertreated, causes stress, depression, anxiety, fatigue, sleep disturbances and adreanal imbalances. Seems to me untreated chronic pain would make lupus worse, not the other way around. Just a thought .... :rolleyes:
 

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Paulin,

I do not believe that taking pain medication makes out Lupus worse, however, the longer you take pain medications, the greater chance you have to building up a tolerance to pain meds.

I started out this dance on Darvocet N100 and it seems to work great for me, however, because I am on blood thinners, no more Darvocet. I was moved to Lortab 5/500, then Lortab 7.5/500 and now I am up to Lortab 10/500. I can usually get by without strong pain meds thru the day and can rely on Tylenol, however, night time is a different story. By the end of the day, I am experiencing alot of pain and cannot sleep, so I have to take a Lortab. I will say that there have a been a few nights, although rare, that I can get thru the night without pain meds.

I wish that I didn't have to take the pain meds, as I imagine is everyone elses thought, but as long as we deal with this dread disease, it will be an unfortunate additive to our lives.


Nancy
 

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Discussion Starter · #7 ·
I don't know if it's the lupus or the medication, but I wake up feeling kind of tingly. Does anyone else get this? My head feels kind of numb......:sad:
 

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Just my two cents worth! :)

Hi Pauline,

Well, I pretty much agree with what the others have to say. I was very scared to take pain medications on a daily basis as I had a grandmother who became severely addicted to lortabs. I realized that her doctors weren't listening to her issues and just prescribing pain meds to "make her feel better".

After dealing with MAJOR pain on a daily basis, I realized this is NOT the quality of life I or anyone else deserves, so I tried them.

Right now, I take Morhphine on a daily basis along with Lorcet 10's. My pain is very minimal, but I still do get pain. As someone else stated, I still have to know my boundries, but taking the pain meds help me to function MUCH better and be able to take care of my daughter as I am supposed to.

Also, do not be afraid to try pain clinics. They are usually very good in helping you cope with pain. I agree that there are some out there who will play games, but that's the case with many doctors, nurses, lawyers etc.... Pain clinics are usually VERY good in helping people with chronic pain.

Ok, just my two cents worth!
Oh, and to answer your question... YES, sometimes, I do wake up feeling a little out of the ordinary and I think it's because I took my morphine and my lorcets too close together. Tell your doc about the way you are feeling and maybe need to switch your dose or get a diff med! Good Luck Pauline!

Always,
Dee
 

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Pain medicine!!

I just want to say I feel for all of you/us having to deal with this issue,but we were dealt a hand(lupus)that we have to live with so we have no choice!!:sad: I went to see my Rhemy a couple weeks ago!! I was flaring really bad. I could barely get up and down!!!! I had so much swelling in my midsection and lower female parts that I could barely get off of her exam table.I was given to shots for faster relief of the swelling and put on a medrol pack! She also talked to me again about pain meds! She wrote me a prescription for methodone(I haven't started taking it yet). I did write briefly about it on site. I take percocet or darvocet as needed right now. But it wears off and she said I need something alittle stronger. I am scared of the drug methodone, as I am scared of all these meds!!!! But I went without pain meds for the first couple of years after being diagnoised with lupus. I refused to take them!! Before I was dx with lupus I never took any meds except the occasional antibiotics or tylenol,advil or BC etc.... Well friends My quality of life has been VERY BAD!!! Frustration doesn't even begin to describe it!!!! I have no choice but to take pain meds! My Rhematologist expained how the meds would help me have a little bit better life.I hate having to take meds like this but PAIN HURTS PERIOD!!! For all of you/us suffering please talk to a doctor who will listen(yes they are hard to find!!)and work out a plan with pain meds. WE can be responsible with these meds!!! Just think about how hard it is to live with total pain everyday! It makes us sicker because it hurts!!! and then we get more frustrated and aggervated more easily!! :mad: Believe me I still have pain daily even when I take some pain meds,but it helps it somewhat.GOD BLESS YOU ALL!!!!!!!!!!!!!!!!!:)
 

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I been on morphine, 4 times a day for the last four years. I am still in pain, but don't know how I manage without the pain med. I can't see how pain meds would make Lupus worse.

Hugs Sheila xxx
 

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I use the Fentanyl patch also at 75 mcg and they work great. I also use roxicodone w/o tylenol for breakthru

That cuts down the amount of pain meds that I used to take daily

Hang in there
Barb
 

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Discussion Starter · #13 ·
Can I take tylenol 3 for breakthrough pain?

I had mentsrual cramps the other day and had taken the morphine. The morphine did not take away the pain, so I added 1 tylenol #3 to the mix and it did help.

I need a pain specialist I think......:rolleyes:
 

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Nancy,
Hi My name is Katie and I am 33. I have lupus and I am currently taking methotrexate and plaquenil. I have been taking Darvoce at night and thought I was doing well by only taking one a night and not sleeping and having the most awful pains in my legs and ankles and when I had my last appointment my Rhuemy told me I didn't need to take any pain medicine. I have made a appointment with another Rhuemy simply because I felt like he was rude for trying to imply I was relying on the darvocet when the fact is they did nothing to touch the pain. I was quit relieved to read their are others so the road doesn't have to be a lonely one.
Thanks.
 

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I am interesting in knowing if you have pain when at rest or just be active. when I don't do much I don't need pain meds, so I haven't been taking anything.but to be active I would need pain meds. so is it better to live a quiet life without or be active and take them. my rheumy doesn't believe in them,his answer is prednisone for everything.
but my gp does and will prescribe them if I ask
I have reached a point where walking two blocks hurts. so I don't get a lot of exercise. if I was on pain meds would I be able to do more? or do they mask the problem and you end up doing to much?
I have been seeking answers to this for a long time. and have been given advice which I never followed through on, and here I am back for more
have patients please and help me out one more time.decission making for me is very difficult
thank goats
 

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My medical team told me in no uncertain terms that allowing the pain would make things worse. I am to take the meds so that I do not get any pain. This would seem to imply that long term pain meds, while not curing this incurable disease, will not make the Lupus worse.
Doulgas+
 

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Pauline, am I following you, or are you following me down this "Lupie-Loo Path"? Except I don't have the womenly issues, I'm a guy, thank goodness. I too have just in the last month been experiencing tingling in my legs, most noticibly when I lay down at night. From my thighs to my feet. I just put up with it, and let a sleeping pill knock me out.
I'm surprised the morphine didn't dull your menstrual pains. But the T3 or combo did. Hey Babe, whatever works.
Good luck.
 

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Katie,

I am glad you are looking for a new rheumatologist. I had the same problem in reverse. My first pain management doctor could not understand why I needed pain medications when I was taking disease modifying drugs. Fortunately I had been a member here for over a year when this occured. I fired him and found a new pain management doctor.
While many people with lupus and other connective tissue diseases do not need pain medications beyond an anti-inflammatory, there is a portion of patients that need pain medications on a daily basis.

I take methadone and wear a fentanyl patch. I also take an anti-inflammatory, gabapentin and pamelor for pain control but they are not narcotic medications. The fact is long term use of many medications including narcotics will create a dependency but not addiction. Unfortunately the medical community in the USA is still behind the times on pain management. There is an article posted at the top of this forum on the difference between pain dependency and addiction.

I hope this helps,
Karen
 

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Discuss the medications used to treat LUPUS

KAREN,

You are 100 percent right. There is nothing that I could add. What you said is exactly the way it is. Thank you for being so accurate with regards to managing PAIN.

lOVE,:)
MARVIE
 

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Hello, I too take pain meds on a daily basis. I started on Darvocet, then Vicodin (hydrocodone) all 3 strengths, then we tried the Duragesic patch (fetanyl) I hated it, it made my skin all red and itchy and didnt give me any relief. So then I tried Percocet, a little relief but not much. Finally I requested to go to a pain management clinic, they put me on Norco, it has less tylenol in it so its not as harsh on your liver. It works ok. So I definitley think pain meds, if anything, help Lupus. They help me get up and take care of my three year old like I need to. My mom helps also but with the pain meds I dont have to rely on her as much. I just have to be careful not to overdo it, if I do Im no good the next day.
 
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