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
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.
write anytime. Hope this helps
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 hypnoses(sp?)
can be a good way to go.
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--
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.
Hey Ceya---I am so glad your hubby has found some way to deal w/the depression and pain from his accident --some times i think that pain is a big factor in depression ---it is in my case-it seems like i have been sick forever--well i talked to my pharmist about some problems i am having w/dizzyness and feeling cold-and my chest hurts--he thinks it might be the advil and i might have a new clot--he doesn't think its a good idea to mix vioxx and coumadin w/the advil--he says its asking for trouble--but my current dr just could careless--so i am going to see our local small town dr --he seems really nice and maybe he will help--last nite was very bad--had a migraine and it hurt sooooo bad ---well dear tonite is Christmas eve and i need to get off here and get my kiddos to bed --have to get ready for Santa--All my family is back in New Mexico so this is our first year alone--I hope you all have a great Christmas and take care --just email me if you need to talk--
How was your christmas? Mine was good. I had to stay up until 3:30 I thought our kids would never go to sleep, then they wanted us up at 7:00. I had to do all the carring and lifting, due to my husbands back. I had my family for super that night. The next day I slept late and did noghting. I started getting a bad flare, i guess right befor e christmas. I have been taking predisone, the doctor called in. I am tring to take care of myself the best I can. I am feeling better not totally but alot better than I was. I have a regular doctor also he is extremley nice to. I hope they will help you. migrains are terrible. I hope they will give you something to help them. I seem to be getting alot of them lately, Headaches.
WOW!--3:30 we were all in bed by 10 pm--we were all tired--but my kids are still young--we were up first at 2:30am when my oldest daughter woke up--after she looked at all the stuff she was fine to go back to sleep but we were up at 6:30 --but the bad thing was i was so sick that i ended up in the ER until 11pm -my migraine and my chest was hurting-my INR was down to 1.0 (supposed to be 3.0-3.5) my chest and left arm and up into my jugular are were i usually get my clots-well couldn't get in to my regular dr until friday and i got a doppler and a EKG --the dr couldn't compress my clavical vein-he couldn't rule out a clot but he wouldn't say there was one--anyway they upped my coumadin again and i go back on thursday--they act like i have just quit taking my coumadin and really that is very untrue --i take my meds everyday--well i hope you get to feeling better on the steriods--i took Medrol for 4 straight years -now at the age of 28 I was DXed also w/the beginning stages of gluacomma--which has been linked to long term use of steriods-some dr's agree w/this others don't--are you just on a dose pack or a full 30 day supply of one dose?--I have taken 4 dose packs this year--oops i mean last year --lol-I will probably keep writing 2002 for 6 months and just when i get it down it will be 2004--lol-i hope you had a great christmas and a happy new year--Happy 2003!!--And i hope we all have a healthy new year--take care and talk to you soon!
I was initially diagnosed with lupus about 30 years ago, but was fortunate to have it go into remission for a number of years. By about 1994, things were going downhill and I finally was referred to a rheumatologist, who honestly saved my life. For pain relief, he referred me to a pain clinic; I tried two that I rejected before I found the one I've been going to since about 1995.
If you're not satisfied with the treatment you're getting from a doctor or clinic, find another one. Visit the new doctor at least once, possibly more, and if you're comfortable with him/her, have your records transferred to the new doctor.
Remember that you're a patient, but you're also a client and you're paying for a service. Don't be afraid of firing a doctor--it's your body and your life that are on the line. I have fired more doctors than I can count, but also have doctors I've stayed with for decades--so I'm not just being arbitrary.
There are some very good doctors out there and some very good pain clinics. For chronic severe pain, you're better off with a pain clinic because they've dealt with the problems that can arise with the DEA and state agencies when a significant number of powerful analgesics are prescribed.
Don't give up. I know that it's hard some days to do anything, but you've got the most to gain from good medical treatment. Hang on until you're satisfied--it's worth it.
HI--thanks for the information--could you explain pain clinics for me--from my understanding they use meditation and calming like things--with a 3 year old little boy the whole day is not calm--right now he is tring to help type this--lol--i am currently looking into getting a new dr;after the clot episode on christmas- i went to get my INR rechecked at my dr and they lost my blood--they are currently looking for it-i got my medical records and i am currently looking into a new dr-i keep falling down does anyone else fall alot?--i fell in the grocery store a week ago and i am still black and blue--sometimes it seems like my legs give out on me--just curious--I am still taking the advil and mornings and nights are the worsted-my legs hurt so bad during the night --anyone else have this--well i will talk to you later--i hope you continue to do well-need to talk just email me--
Hello. Sorry you are going through this. I have gone through the same situation, but now I see a Pain Mgmt group and they are a blessing. If they cancel your appointment, then go to er and explain that your gp won't prescribe and you are waiting for an appointment with pain mgmt; they should prescribe you something until you can get in. Without my pain medication I can not get out of bed. You have 3 children that need you and you need you. You deserve some quality of life and I have a real problem with doctors who think we should just bite the bullet. I did that for years and it just made my jaw hurt too. My pain mgmt docs are very concerned and I also used accupuncture along with meds and it was wonderful. I have a huge incisional hernia now and can't lay on my stomach, but I can tell you the accupuncture really helps. Keep after them to get your appointment. Sandy B
I am new to this, but hoping it will help. I have what they lupus anticoagulants. 3 blood deficiencies that has given me fibromyalgia, tmj, migranes, pain..pain..pain...lol. I am on lortab 7.5 30 a week, but they are not working like they did almost 7 years ago. Think i'm immuned to them huh? I have been fighting for my disabiltiy for 3 1/2 years now because the last 3 years i can't seem to hold a job for more than 8 months. You're all right when you say nobody wants to hire you. So I have lost my home, my marriage, my job and all my personal items of worth just to stay alive. I am living with a friend right now and don't know how long he will put up with me. I have no money coming in and just sometimes don't know what to do. This computer is my only way of staying sane. I have looked for help everywhere I can, but it is difficult to get. Social Security admits I cannot work, but they want to fight me due to the fact that for 6-8 mo. at a time during these 3 1/2 years I worked at various mim. wage jobs just to survive. I know how it all feels, because I have had more clots than I can count. My main vein in my left leg are shutting down, but they have put a net under my heart to stop the clots from killing me. Not sure if thats good or bad. Sorry about the sarcasim. Just sometimes gets depressed over it all. 3 years ago I had 5 clots in my lungs. Guess what I survived that too. For some reason I am still here on this earth and here to tell you that you just keep going and hope that something good happens that day. Thanks for letting me talk, not too many people understand what we go thru day after day.
Hello all!!--How is everyone doing?--me still hanging in there---I went to mt rheumys appointment--he wanted a MRI done on my right knee and i got that done on Wednesday i am supposed to call tomorrow to see what if anything it shows--he also put me on the lidocaine patch for pain--has anyone else used these--well my experience is they don't work--i know from my research here on the web that they have worked for many people but i have worn them everyday and am still having to take advil--which my rheumy says no to--but my primary says yes--i have to be able to function --advil gives me a little relief--and some days i think the pain is going to make me crazy--i hurt all the time--my house and kids as well as my husband suffer because i hurt all the time--I can totally understand that pain is running my life--and it is uphill battle to not let it destroy me totally--but when there are things that could make my life a little easier and the people that can help me act like i am a horrible person for wanting the best chance at my life---you know and I know that there is no cure as of yet for Lupus , Fibro or my blood disorder--but until there is- treat the symptoms and Pain is a BIG symptom --and it is being ignored --because drs fear people like us who need long term help in managing pain--We didn't choose this life --and who would choose to be in pain every waking moment and even pain during sleep?--i guess i have went off in a tangent sorry about that --its just very frustrating --that we aren't listened to--i wish sometimes my pain was visible --that they could see it maybe even feel a little of what we feel every day of our lives---take care everyone and if the lidocain patches work for you --that is a blessing!! Take care!!
P.S. they are expenisive-i paid $68.00 for 30 patches and w/out insurance they are $154.00
It is so sad to read through these posts. I have been where a lot of you are now and have been in the past. It is sad that many doctors are more concerned with their bottom line or the DEA than their patients' well-being.
A little over a year ago I was resorting to online and oversea pharmacies to keep me going in regards to pain medication. I finally got lucky. One of my doctors of a long time finally asked for the right set of tests and found lupus, degenerative joint disease, and neuropathy. The rheumatologist I went to wasn't a big believer in pain meds but the neurologist he sent me to was, to a small degree. He started me on the Duragesic patches.
Thankfully, I went back to one of our town's old family doctors. He has been really great about pain medicine. My patch has had to be increased once and I have hydrocodone for breakthrough pain. I am on a set amount every 12 days but that is more than any other doctor has done. My biggest concern is that this doctor is up in age. I worry that when he either retires or dies, I will have to start all over again and hunt for a doctor that is sympathic to my needs. Our county has already lost two doctors like this one. The one I see now will be the last to go.