Pain

[Sandra]

What does everybody take for pain from heck??? I am dealing with a flare up of my spine and neck and Holy Cow what a headache...for days now, can't even blink my eyes without winseing. These neck/nerve pain head aches are the worst just relentless. I've done tylenol arthritis today which did nothing so I've moved  up to the big guns tylenol 3 still nothing so far. Today would have been was my dad's birthday. He left us in Dec 2004 but mom still likes to "think" of him on these special days, her way is to go to dinner, and i know I promised her but how the heck can I do that in this shape? GGGrrrr I am so fed up with this. Help   Sandra

[Katybarstool]

Hi Sandra

I'm sorry to hear you are in so much pain. I take Celebrex, but its only available on prescription in the UK.  I find it helps a lot, and just top up with paracetamol when the pain is bad. I hope you feel well enough to be with your mum on this special day.

Kathyx

[Pooh]

Hi Sandra,
I just spent the past 2 weeks in the same condition.  I find great comfort in a "Bed Buddy" collar.  It's like a rice bag that you heat up in the microwave, but this covers my neck and shoulders then closes in the front like a collar.  I don't know how I would get through these spells without it.  I purchased it at Bed, Bath & Beyond. 

Also an extra Tramadol here and there helps, also with the occasional Vicodin at bedtime.

I sure hope this passes quickly for you, I can feel your pain from here. 

Hugs, Pooh

[Scottietottie]

Hi Sandra 

I'm on Tramadol slow realease, which I take twice a day. I also take between 6 and 8 50mg paracetamol per day. I take 10mg amitripyline at night which helps with nerve pain up my neck and head.  If I get extra pain I add Ibuprofen to the aforementioned list.

Take care - Scottie 

[SilberKatze]

Well, my daily meds are Sulfasalazine and Hydroxychloquine. But lately I've been taking Ibuprofen and Peniciilin with those for my teeth. Other than that, I have tylenol PM that I take if I really really need it. Because after I pass out, if I wake up before 8 hours is up...I kinda shake-ish sorta. Everything feels funny and my legs or my arms don't wanna stay still. so I end up moving sometime weirdly. well...it feels weird anyways.

Other than that, I deal with the pain. I just started on the Sulfa, so I don't know how that works yet.

[allium]

Sandra, I have pain in the areas you talk about most of the time now.  My MRi shows bone spurs, bulging discs, and severe stenosis.  The last few weeks have been ...HECK... for me too.

Heat, professional massage, and lots of drugs are making a dent finally, a little better today.  I have taken advil , aleve, tyenol, and Vicoden.  Just started on Neurontin. And now also Ambien to help me sleep without waking every hour in pain.  If it's an inflammation thing, tylenol won't reduce that; I found Aleve is the best OTC in that dept.

If every thing else fails, I divide a vicoden tab into 8ths, and take each piece at 30 min intervals.  I did that a number of times yesterday. Today I also tried Piroxicam, and that helped too.

The stick on heat patches work if you have to go out and about, and need to be discrete (turtlenecks are great).
My thoughts are with you.
Sheila

[Sandra]

Aout the narcotic type pain meds, i saw an orthapedic surgeon once, he's retired now after 40 years of surgery etc. Replaced my mom's knees, my uncles, my autns......I saw him at the request of my car insurance company after a car accident I was in. First thing he said was "do you know your health record is 250 pages?" I thought oh yea, so what are you trying to say???....insurance companies they can even corrupt those you think uncorruptable!
Anyway one thing he said is you are doing incredibly well considering what you deal with...and if there is one word of advice I can give "don't start down the road of narcotic pain medications".....I have kind of always felt that myslef and i thought his advice was sound. So have any of you that take the heavier pain meds sorry you started? I know of two people in my life, just aquaintances, but nice people who were given narcotics 1 for Lupus and the other for lung problems he got as a firefighter in the armed forces. Both became desperately ill just from the drugs, like a horrible catch 22 situation. Boy there are days though when the pain is so strong that it too becomes bigger than my reason or sensibility and it feels like in order to get my good sense and reason back I first have to get rid of the pain in ANY way I can. Lately I jest about a couple of "shots" to my hubby....I don't drink at all it would only take two to do the TKO punch! And the other is canibis, marajuana. My cousin is really sick with MS, institutionalized and she has a prescript for pot, apparently it is very good for MS patients. Sometimes i wonder if it would be better than narcotics?? Oh, poo I'll just go take a hot bath. Thanks Sandra

[SeaBreeze]

Sandra,
I have albeit, minor, but chronic back pain, docs are very comfortable prescribing Lidoderm patches and I have done well with them.  My AI pains are under control at the moment, thank goodness, as I'm on Coumadin and can't take nsaids... stuck with tylenol arthritis at the moment.. wtg for Plaq to kick in... Good luck and maybe try one of those patches...

[Patze]

Hi Sandra,

I'm sorry to hear about the pain!  Wow, can your rheumy won't prescribe something to at least take the edge off, or your primary maybe?  I can't speak of any kind of pain killer other than aspirin, I'm sorry to say. 

Please hang in there and let us know how you're doing.


Patze

[Cheryl]

Sandra,
  You have my sympathy, too.   I deal with the neck/headache situation as you do.  Tylenol doesn't touch it, but 2 extra strength Excedrin make it so much better!   I'm not supposed to take anti-inflammatories, but headaches are the exception to the rule for me.   I hope you find what works for you.
Cheryl

[ktfabian]

Sandra-

I'm so sorry about your pain.  I've been where you're at right now.  The headaches that can come with Sjogren's just about did me in.

I've used a lot of the suggestions you received...professional massage, the bed buddy neck heat, tylenol, Ibuprofen worked better for me.  But what finally did the trick for the short term pain was fiorinal, a prescription headache medicine. For the long term, though, my rheumy has worked very hard (and so have I) over almost 3 years to finally get some control over this disease.

First, he put me on 16mg of medrol just to try to clear up some of the mess my former rheumatologist had made pretending she knew what this disease was about.  About 2 years ago, I started getting infusions of Rituxan (2 every 6 months) and  started taking Arava.  I finally weaned off the last of the medrol a little more than a month ago. I also take Neurontin, Lyrica and plaquenil and an antidepressant.

I'm a bit overdue for my Rituxan because I had to have surgery last week (it was supposed to be last month but was put off for insurance reasons), so the headaches are starting to come back a bit, but so far I've been able to stand them without the fiorinol.

As for narcotics, I've taken them all and I don't regret that I have for a moment.  I'm sorry your friends had problems.  In the research I've done on narcotics and pain relief, I've learned that the problems don't happen often, and in my case, they've been a lifesaver.  I take percocet for the pain related to my sjogrens.  For a long term back injury, I have a morphine pump that actually has dilaudid and clonodine in it.  With out that relief (and sometimes even with it) the pain is bad enough that I've seriously considered suicide.  I just recently wrote my goodbye letters to my two boys (ages 20 & 23) on a particularly bad night.

If your pain is getting to the unbearable stage - and it sounds like sometimes it is - it may be a good idea to find a good pain management doctor.  You want to ask around and make sure the doctor you choose isn't just into giving injections.  My pain doctor works with just about every modality there is, from pumps and medication, to physical therapy and pyschotherapy.  He's been a HUGE help as my pain has continued to increase from the back injury and the Sjogren's.

I hope you find an answer for your pain and get relief really soon. 
Sending gentle hugs, Tracy