How to talk to my dr. about pain meds?

[Jeigh44]

Hi everyone,

I have a question regarding pain medication.  As of late, my pain has gotten so bad that I am not able to sleep.   It literally feel like someone took a crowbar to my entire body, and I am miserable.  I want to ask my rheumy for some pain medicine, but I am afraid to ask because of the stigma that goes along with it.  I have been seeing him for many years, and we have a good relationship.  He did give me Naproxen but that does nothing.  Please let me know if anyone has any advice on this.  Thanks so much.

[Pete0211]

Just tell him exactly what you said here - you're not able to get quality sleep due to your pain, even with the naproxen. I don't think your rheumy would have a problem with it, due to the pains associated with many AI, and the impact of poor sleep.

[Joe S.]

What ever you do, do not ask for a specific pain medication. If you do you will never get it!

[sixty]

I would also mention that your pain affects your production during the day also.  I'm afraid that if you mention the sleeping problem only, he may just give you a sleeping pill. 

[cccourt1942]

I am old and retired.  Quit work 3 years ago.  The last year I worked, part time, I would work, go to the masseuse, go home, fall on my sofa.  I only worked 3 to 4 days a week. 

At the end of the semester, I saw a rheumy...and got a dx.  Questions were about pain level, dryness, etc (over the years) and how I had gotten thru it.  I exercised daily...albeit less and less each year, each month, then each day.  But I did something.  The other, I took 1/4 mg to 1/2 mg almost every night for sleep.

Honestly, I hate pain meds.  I can't take the NSAIDS as years ago I developed an NSAID ulcer.  The key to managing the generalized pain I had was to be able to sleep.  Even on meds now, and treating all symptoms of SjS, my life revolves around sleep...broken sleep at that due to getting up and going to bathroom.  W'out the Xanax, I couldn't go back to sleep.

Beware of pain meds.  I have been watched carefully and have never gone out of "bounds" with an Rx for Xanax.  It's a tiny amount.  You may need a titch more.  IDK.

btw: when I moved after my dx, my new dr. refused to give me the Xanax.  He sent me to a neurologist.  The neurologist (of course) has a sleep clinic.  I refused, explained how SjS affects an individual and told him I'd have to make another appt to go thru all the annoyances AND pains one goes thru in any given night.  He Rxed the Xanax, and has actually laughed at the tiny amount I need. 

One more thing:  I have been on low dose prednisone (LDP) for SjS almost three years now.  That makes a difference too.

I'm 74.
c3

[irish]

I would advise you to do an every 4 hour pain assessment on yourself. This is using the 1-10 numbers to assess how bad the pain is. One being very mild and 10 being very, very bad. Then also keep track of what meds you take for the pain and how bad the pain is (another assessment) 2 hours after the medication is taken. No matter what the med is that you take for pain, ibuprofen, Tylenol etc., you need to give the pain a number 2 hours after the pills.

Also, try to draw a picture of the areas your body has pain and how bad it is. Not all areas of pain will be the same. Also, not all pain occurs at the same time of the day or night. You can sleep at night and only do assessment when you awaken. This is a lot of work, I know, but if you could do it for 5-7 days you would see a pattern with the occurrence of pain and the intensity of the pain.

Also, explain that you would like better pain control but don't want to take the really strong meds if possible.

Ask your doc if he will work with you for pain control. Document how your pain affects your activities of daily living.  Sometimes we have to pick and choose the times when we can make do with less pain control. It is up to us how we manage with the tools given us. If you have a really tough time and your doctor isn't able to help you then ask for a referral to a pain control clinic. My humble opinion. Good luck. Irish

[Jeigh44]

Thank you everyone for the great advice.  I am not looking for pain medication to take daily.  I just want it for nights that it is so bad that I can't sleep or for a really bad flare.  I am a 35 year old, personal trainer, so I am pretty active, and do not want to rely on meds to make me feel better.   That being said,  I do not think that there is a reason to suffer when it gets really bad.   

[warmwaters]

In addition, what treatments are you currently taking for Sjogren's?

When you say pain meds, I'm assuming you mean something like hydrocodone.  I use hydrocodone on "bad pain" days, so I'm comfortable with that approach.

But you also want to look at the total pain management issue - is your Sjogren's being treated in a way that helps reduce pain?  Common approaches are plaquenil, anti-inflammatories like NSAIDs, steroids, and sometimes certain anti-depressants that also seem to help with pain relief. In addition, some people find acupuncture and meditation helpful with dealing with pain. There are even more aggressive approaches.

Without knowing what you are currently doing for treatment, I'll suggest this.  Explain to your doctor the specific problem you're currently having, and discuss your full treatment plan. Perhaps an NSAID would give you better pain relief. One thing about pain is that you want to try to slow it down before it gets bad. I've learned that it's much harder to get pain relief once you are already in bad pain.

Also see the Sjogren's Treatment Guidelines, if you haven't seen them before.

https://www.sjogrens.org/files/research/RheumatologyCPG.pdf

[Jeigh44]

Hi,

Yes, I am currently on plaquenil, imuran, and 2mg of prednisone.  They have given me naproxen but it did nothing to help me.  I think I manage my pain very well, but there are days that are unbearable, and I feel like I just have to suffer through it. 

[warmwaters]

Good, glad to hear you're taking some things that may help.  It might be worth experimenting with other NSAIDs, in addition to the chronic pain relief. I get no benefit from naproxen, but ibuprofen works somewhat. I now take mobic, which one rheumy called her "secret weapon".

So a different NSAID might give better general pain relief.