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Mckinney906
07-19-2009, 01:45 PM
I am on month two of Plaquinil & 10mg steriods. I was recently on the Fentanyl patch for 30 days (then ripped that sucker off and went through withdrawls... hated that medicine but was put on it because I was in the hospital every week for over a month due to excruciating out of control pain that i wouldnt wish on ANYONE) I am now back on percocet & soma (muscle relaxer) but my pain is very bad again... I am hoping the savella i recently started for my fibro helps but I really think this is more lupus pain (joints, bones etc.) I am at a loss... I thought about trying oxycontin again (only tried it for a month at 10mg which i think was too low) but at a higher dose of 20-40mg opposed to the measly 10mg they had me on before (I have a VERY high tolerance... they have to give me 4mg of dilaudid in the hospital before my pain finally goes away and I get sleepy... trust me it baffles them & no I have never abused drugs) so anyway what do you all do for your pain? I have tried massage, acupuncture, baths, herbs, candida diet... you name it i've tried it... I just am scared to go back on a long acting medicine like oxycontin because the long acting ones are harder to get off of opposed to the shorter acting medications like percocet but with all this tylenol frenzy I admit I am scared... isnt there a form of percocet that has motrin or no tylenol or motrin? *sigh* i dont know what to do... i dont want to take anything but I have a almost 4 year old and 1.5 year old active boy to take care of all day... this is really getting hard :hissyfit: sorry for the random vent.

ashleybaby715
07-19-2009, 06:31 PM
i just take either 375 or 500 mg Naproxen or i have a new pill called meloxocam [[not sure if spelling is rightt?]]

it works for me, but since your on some strong meds, i dont think these will do much good for you... =[
i hope you find relief soon!!!

crmj1183
07-19-2009, 08:07 PM
Mckinney906,

Ive had bad pain with my lupus, but I dont think its ever been as bad as what you are describing. My heart is really going out to you because I can only imagine the pain you're going through. I hope you feel better real soon. I agree with you on the whole oxycontin thing. Im going to pray that God relieves you of this pain.

Chriss, hang in there

Danica01
07-19-2009, 10:37 PM
I am so sorry you are going through this! I have to have twice the morphine when I am in the hospital as the normal person. I just can not imagine the pain you are going through and with little ones running around......you are a trooper if I say so myself! I could not do what you do and I am amazed. i don't think my meds would help you but here is what I do: I take a muscle relaxer every night and 3 tramadol. I also take two lyrica around 6pm and in the mornings when the pain is really bad. I have darvocet for the really bad day but it makes me so sick that I refuse to take it and will have to get something else for the really bad days. I really hope you are able to get some relief soon!!!!

I have to ask you, how are you sleeping at night????? I know that when I do not get sleep my pain is out of control and it is a horrible cycle that I start. I actually take sleeping pills at night just to make sure I get a decent nights sleep. It is very important for us to get our sleep :veryhappy:

Keep us posted on what you and the doctors decide and please keep eventing to us when it is tough for you! That is what we are here for. We will be here through the good times and the bad times......that is what this family is for!

I am sending you thoughts of a pain free night and lots of gentle hugs, hang in there and try to get some sleep :hug:

Mckinney906
07-20-2009, 07:38 AM
Since being off the Fentanyl patch I sleep like a rock... I dont know if it is because of the Savella or just plain exhaustion from being in so much pain all day but I do not wake up anymore during the night "knock on wood" lol. I have a Rhuemy appointment tomorrow with someone new here in my area and he is supposed to be great so I am hoping he can offer some more insight and possibly even up my plaquinil to 200 x a day instead of just the once a day... I am going to make my list of questions tonight to bring tomorrow since I know I will blank out when I get there lol... good thing is though the lupus center of excellence faxed over all my test results and my 5 page history going back to me being 15 years old when this all began so at least I shouldnt have to go through the speal again which is very stressful and the report my doctor in pitsburge made was very impressive and included everything I said + everything my past medical/hospital visits stated... so wish me luck! I am nervous but I also have a good feeling... Thanks everyone!

mountaindreamer
07-20-2009, 10:16 AM
hi mckinney,

i too tried oxicoton (sp), but quit taking it after one week. When i was diagnosed with IC, my dr. started me on Dilaudid for pain. I have been taking this for over 10 years, and have had not problems. I am not addicted, and i have not had to increase my dosage in order to get relief. This med helps with my pain from lupus, fibro, and IC....I don't go anywhere without it.

When i have to go to hospital, i also require double doses that they give most people. The drs. are amazed at what it takes to get me out of pain.

crmj1183
07-20-2009, 10:25 AM
Ooooohhhh,duluidad I hope I'm spelling that right. Mountaindreamer I've had that and its gooooooood, oooh baby.

Chriss

mountaindreamer
07-20-2009, 10:50 AM
hi chrissy,

yes, it is great...it is the only thing that totally relieve my pain. I tried others, but dilaudid works best for me.

I once had a dr. that questioned this med, even called my rheumy and gave her hell for prescribing it....i fought like hell for my script, and won....

Danica01
07-20-2009, 12:46 PM
I have never tried that one. Is it really strong???? I can seem to really find anything that works on the really bad days.

Mckinney906: I am so happy you are at least sleeping through the night. That is a positive thing. I am anxious to hear what you rheumy says tomorrow. Keep us posted on what he has to say and hopefully you will get some relief soon :veryhappy:

crmj1183
07-20-2009, 12:48 PM
Im still trying to get it, I dont know what to say to convince them, I only need it every now and then. When my pain gets bad I have to go to er and they give it to me

Mckinney906
07-22-2009, 01:01 PM
my pain today is almost intolerable but what am i supposed to do? run to the er every time i hurt like this or go CRAZY. I had a more active than usual day yesterday... I had to go to a meeting at my dads work (even though i work from home) and then had a Rhuematologist appt. 40 minutes away... so I expected to be feeling rough today but I didnt think I would be in this much pain. I even started 30mg of predinsone today. But what am i supposed to do? do any of you have to go to the hospital to get a shot of something stronger than what you already have to stop the cycle or whatever... I just cant take this.

sickofbeingsick
10-01-2009, 07:47 PM
How stern do you have to get with your dr for pain meds? My dr wont prescribe anything despite the fact that I am doing my body in with ibuprofen and excedrin. I take soma and now savella with no relief. If they told me jumping off a bridge would help the pain, I would do it. I think I need a new dr, but then they think you are drug seeking. I think I am going to have to quit my job, because I cant manage moving heavy patients around anymore. And my family just doesnt understand it. My little boys are fed up with mom not being able to do everything anymore.

Mckinney906
10-02-2009, 04:45 AM
If I had to get stern with my doctor then I would be finding a new doctor... instead of trying to get pain managment from your regular doctor I suggeste finding a pain mangament doctor. You cant be a drug seeker if you are in legit pain and for goodness sakes you have lupus that's crazy your doctor wont even give you anything to take on an as needed basis on bad days... that is just inhumae to make someone suffer like that. I get the whole getting addicted to pain killers but unless your abusing them you cant become addicted to something you need (I was told this by an ex pain doctor but he was a little extreme when it came to handing out drugs like candy) anyway i really suggest looking for a good pain managment doctor and researching diferent medications you would like to try based on how effective they are, risks, side effects etc. I believe in being in control of your body and when there is something out or something new I want to try i research it and talk to my doctor about it and since we have a good relationship and she trusts me she for the most part let's me try whatever might work. But unfortunatly there are drug seekers out there who ruin it for those of us who are in serious pain... But if you have lupus dx on your charts I dont see how this woudl even be an issue?? it's not like your just going in there saying oh my back hurts give me drugs... you have a real diagnosis and a serious diseases that can cause serious pain! that just makes me mad to hear of people getting blown off and to take motrin when the pain can get so bad... i am so sorry you are going through this...