dr just decided no more pain med - Lupus Message Board

Lovelylockss · 11-15-2002, 11:49 AM

Hello all--I was dxed 6 yrs ago but have since moved to a new state -i have been here for about 1 1/2 yrs--My PCP called me 5 days ago to TELL me why he would no longer fill my Lortab--this is like totally out of the blue--last visit w/him a month ago -he is saying he is sure i have fibro along w/the lupus and i also have a blood disorder Factor V--and sent me to yet another rheumy to get a DX for the fibro--I just had this appointment and this new dr wants to put me on placqunil(misspell)--and told me my knees and ankles are in bad shape for a 28 yr old--then on monday i get this call and people i am on coumdin-vioxx-lortab and effexor--i get 80 lortab 7.5--i had 3 pills when she called me---i told her i have been on pain meds for 6 yrs and you just don't stop them--to me there is no other word but stupid!!--out of a 24 hour period i am to take my pain med every 8 hours --well i start hurting very promintley to the point of tears between the 5 and 6 hour mark--but my 80 pills i MAKE last me for the full 30 days--i have 3 kids--8, 6 and 3--this week has been hell---my dr won't see me until my normal appointment which is the 20th of this month--i still have 2 pills left--i gave up yesterday and took one --i am taking advil like its going out of style and i still hurt and my hubby is so mad he could choke my "dr"---i am not supposed to mix my coumadin w/anything like advil so my blood is very thin-and i am dizzy and what i call slamming into walls--i keep saying what am i going to do?!--you know i know that none of you know me but alls i want is to be ok and normal and i want to be able to walk my kids around the block or braid my babys hair--this is so wrong that i am just miserable--i am not sleeping and girl scouts yesterday was so bad -by the time i got home i was cring becuz i couldn't hold the stupid pencil--I called his nurse and she says they are now tring to get me into a pain management clinic and to tell you the truth what the heck do i do until then?--i have went over and over what has caused this whole thing and to be honest i don't know--i mean he has always been reluctant to do the whole pain pill thing and he cut my pills after moving here from what my dr back home gave me (120 for a 30 day supply) to 80 because i told him there are days i only take 2 but winter is my nightmare--it is the worst--i feel like what is next?--my coumadin--just to prove to him that i do get blood clots--he has sent me to dr after dr and we go over every detail and for gosh sakes i have my own medical records--i just wish they could see my pain --because there are times i look at my arm which hurts so bad and it looks ok--but why can't we see it because it hurts like the devil--i mean if i walked in there and every pain would light up--would it be ok then? i feel like i have been kicked and i am so tired of all this and the hurting-i am hurting so bad--but sunday is my daughters 6th birthday and i will use one pill to get through her party because what good is mommy if i hurt so bad that i cant function--i am so sorry i layed all this on everyone and i know theres nothing anyone can do--its been a very long week and my hands hurt really bad so everyone take care and i wish everyone all the best-thanks for listening-lovelylockss

Ceya · 11-15-2002, 08:06 PM

Hi,
I am so sorry you are going though all of this. It isn't fair. I have just been diagnosed. I have not been given any pain med. for lupus, but my rhem. perscribed, bextra for my joint pain and swelling, Transzadone(spelling not good)that helps great so I can sleep without waking up every hour aching, I just was put on the plaquill(sp) but It is suppose to take mos. to show any improvements. I take zolof, and I have been having alot of stomach problems. I to have dizzyness, and bumping into things but I did not relate this to lupus. I have 5 children. 17, 15, 14, 11, and 6. My husband was in a car accident 2 years ago and had his second back surgery this week. This one is pretty difficult. I was so scared that I would get down. I know a little how you feel. I use to play ball with my boys in the yard. Now when they asked me I hurt to bad and so fatigued that I just can't or I will throw them the ball a few times and quit. Some days I have to get one of my children to put the pots on the stove to cook because I can not lift them. I have to get one to open the van car door because I can't mash the knob to open it because my thumb just hurts and not enough pressure. I work full time. My job is not going as well as it use to, but I am doing it just slow. You know we are suppose to take care of our children, have fun, go shopping and play. This feels sad to me. It seems that you may need to contact your old Doctors, or take a trip. Can your new doctors give you something else? I totally understand the hurt and censations on our body and skin that you can not see. My skin will burn in places really bad, but to look at it it appears normal.
I think this makes things worse. My husband has a problem that you can see. Documented. You know kinda what to expect, I don't know from one day to the next what to expect. I am sure you feel this to. This causes alot of stress, not having pain pills when you need them would cause extrem fear, and alot of stress knowing it will come and you can't do much to stop it. Relaxation tecniques can help some to reduce stress and possibly muscle aches reduce. But it sounds like you need so back up. Do they not understand how hard it is to have children, the responsiblity, and the fatigue you go though even with a mother is healthy?? Where are you from? Where did you live before?
I have had a soar throat and cough for over two weeks, I went to the doctor and I do not have strep but it will not go away. Do I go back to the doctor or what?'
I feel like I just bug them I have going to the doctor and they don't find anything.
I hope I can at least listen. When you are the mom, and wife. I think we get overlooked alittle. We will continue to crawl to do for our kids. We try and hide it from everyone. Do not get to tired of tring to get help.
Ceya
write anytime. Hope this helps

Denise F · 11-19-2002, 10:08 PM

Sounds like you need a new Dr. Unfortunately, Dr's
are under more and more scrutiny about how much
pain medication prescriptions they write for their
patients. The Dr's that have a lot of seriously ill
patients who need alot of pain meds are the ones
who receive the most pressure to cut back. Sometimes
they are even threatened with losing their license
if they do not comply. It's sad that Dr.s have to
worry about getting into trouble trying the ease
the pain of their patients. Sorry you're in so
much pain but I have heard pain clinic's that use
drugs along with bio-feed back and *******s(sp?)
can be a good way to go.

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Lovelylockss · 12-20-2002, 08:39 AM

Hello all! and thanks for the response--well since the last post --the pain clinic has canclelled my appointment and never returned my call--it seems like a year since this happened--every day is very long--the new rheumy put me on elavil--it helps me sleep and is helping w/some pain-but still using advil--my appointment on the 20th was a nightmare--i live 45 miles away from my dr -after getting the baby to the babysitter -and driving there--i called them because i was going to be late--they said ok--well i was 10 minutes late and when i got there they cancelled my appointment and the dr wouldn't see me--No joke---ok people how many times have we sat in a waiting room for an hour waiting to see our dr even though our appointment was an hour ago?--for me many times--but because these drs know that we are ill they know we will wait--i am now looking into a new dr --he said take advil w/the coumadin--so what do i have left to do--my INR(blood clotting time) was 1.8 and i am supposed to be between a 3.0-3.5 and he said keep it at the same dose--well that is wrong--and i really don't want another clot-if any of you haven't ever had a clot they are very painful---and I totally understand what you are going thru too--how long have you been sick?sorry to hear about your hubby--sounds like you guys have taken quite a few knocks--but it sounds like your kids keep you going-just like mine-sometimes it seems like my body hates me--i sit in the living room in the dark after everyone goes to bed and will the pain to leave my body--i try to see it leave me--but to be honest i get mad because it just keeps on hurting--i wake up several times a nite hurting--i have also had a sore throat and cough for about 2 weeks--but i have quit going to the dr everytime i get sick--i used to go all the time before i moved here to Oklahoma-(from New Mexico) I run low grade fevers 3 to 4 times a week and its usually after i have had a long stressful day--does this happen to anyone else? i get the chills and shakes and then freeze but i am usually running a fever--my glands in my neck also swell up sometimes--anyway i really need to get on the ball about finding a new dr--i just hate going over all the same things again--sometimes its like all these drs don't believe each other--because they all want there own tests--even if one dr just ran the same tests--very frustrating--well every one have a Wonderful Holiday---I am going to look up the mixing of coumadin and advil and aleve and stuff like that--so take care and email me anytime--

Ceya · 12-21-2002, 06:49 AM

Yuk!! That is terrible. I have never been cancelled due to being late. I am sorry that you live in such a place were the doctors are so rude. You need more meds. maybe not pain meds but some of the lupus meds. I had a soar throat and cough for about 3 weeks. I finall went the my regular Doctor to rule out strep it is going around. He was so nice. Expecially after I told him I have lupus and I really can't tell the diffence if I am sick or not. He said he understood and that it is better to check because lung infections and stuff can be a problem with lupus. As it turned out it was virual.
My husband started going to a phyciatrist for his adjustment and depression since his accident. He gave him meds that will help with the pain and help him sleep. This may be an route you could consider? It may be worth a trip back to where your other doctors are. Have a good day. i to sit up at night or early morning wishing the same thing.
Ceya