kfainesi have lupus, on darocet not helpin at all ,doc refered me to pain clinic doc there gave me fentanyln patch and oxy working very well however he ordered back nerve test and mri when i went for follow up told no nerve damage and no more scripts till he sees mri i'm in pain what can i do as the darocets dont work dont understand i thought i was there for lupus pain not back nerve problems the pain doc says if the mri is normal he cant treat me does this sound right i thought he can treat me for my cronic pain .my lupus doc said the pain clinic would be able to do what he couldnt for me.is there anything else i can do or any othe type of doc i should be seeing
Help with pain management?
- Posted:
- 9 Mar 2010 by kfaines
- Topics:
- pain, systemic lupus erythematosus
Details:
Added 9 Mar 2010:
i've also taken ultrum tramadol both 37.5 &50 mg and robaxin 500&700mg,perocets 5mg,7.5mg
Answers (11)
9 Mar 2010
my suggestion is to go get a second opinion. either that or you need to get checked out for fibro mialgia. i hope this helps dear. but your spine has a LOT of nerves , its interconnected through your nerves through your whole body, this could really be about your lupus but your back is picking it up... i just wanted to let you know this, this is how they are able to do epiderals... because your back has the nerves from everywhere in it! so, get a second opinion or get checked for fibro mialgia as well. hope this helps, i can't answer AGAIN because it wont let me, and im so sorry if it doesn't.
missy29 Mar 2010
you need to find a new pain management clinic and level with them about your pain you don't mind going through their test but hey give me a break you have records from a prevouis doctor that sent you there you have a comfirm case of lupus and possible fibromyalgia i really feel for you i had to have a nervous breakdown to get help. i will pray for you. missy
barbles24139 Mar 2010
Was this doctor a physiatrist who mainly deals with back and spine pain and nerve damage or a anestheseologist (spelling) who deals with pain all kinds of pain. When I left my pain doctor who was an antheseologist and the head of a pain management clinic in a major hospital in Philadelphia Iwas refered to a pain management doctor that until the second or third visit because she did write my pain meds for me but when I asked if I could change to something other than percocet because of the tylenol factor I had taken percocet for 5 years and decided it was time to think about my liver and kidneys.
kfaines
10 Mar 2010
this doc is a real pain doctor,like i said i had a referal which clearly stated lupus sle,on the very 1st visit he gave me 25mcg fentanly patch 2nd visit 50mcg 25 did nothingalso phyisical therpy i gave him copies of xrays fr other doc he asked how waqs my pain i said better but tailbone hurt some he said maybe disc problem or nerve sent me for test.3rd visit he says test showed no nerve damage he didnt have copy of mri wanted me to go get copy of it and stated no more scripts till mri comes back he acted as if i was there for back issuse not for lupus,said he couldnt give opids without anything to back it up next app is two wks i dont have enough meds to last that long i tried to go without the patch for two days that was hell needless to say its on now only have 3 left wont last till i see him again i'm afraid that the mri wont say anything either and then what?
kfaines
11 Mar 2010
thanks for your input everyone this is new for me how do i go about finding anthor doctor without it looking like i'm shoping for drugs? wondering at this point should i go to a meth clinic i know i'll needs these meds longterm-keesha
jacy5310 Mar 2010
Primary care doctors are having to fight to give out pain meds for chronic pain. The pain clinic doctors and the federal government are fighting to away the doctors right to determine you need it. This is why he is backing off. He is in the middle of a bunch of bull shit that activist are pushing for. My doctor told me this. He knows of my condition and will give me what i need for as long as he can. I go to the pain clinic and the pan clinic doctor told me he will be giving a nerve drug i failed and no more pain meds. I went off on him and told him I will inflict the pain i feel upon him personally if he dose. His eyes bulged out of his head and i said do not screw with me. I am at my wits end explaining time and time again what works and dose not. You will push me over the edge. He did not right the scrip and did not mention it again during my back shot sesoin.I say --- these dam doctors who are afraid of doing the right thing.
missy2
10 Mar 2010
if more of us took the stand you've taken with our health care we would not be in the shape we're in and have to go to pain clinic's to prove our cases and our good old family doctor would take care of us because he knew us and believed us . insurance would not make us pick a new pcp every 6-12 months because our employer cut our insurance plan and the very good doctors weren't droping out. look what our veterans have to go through just to get some help, i guess you all can see i agree with iacy53 and i got up to early this morning because i'm not usally this vocal sorry thanks for letting me commet. missy
harleyhoney2130
10 Mar 2010
we all need to visit this site and sign it no matter where you live if they ban apin meds in one state we are all out my dr gave me this
www.ipetitions.com/petition/painpatients-clinics-physicians-pharmacist-rights/
please sign to keep all of us in real pain able to get help
barbles2413
Anonymous 10 Mar 2010
I was also sent to a pain clinic and very disapponted with how they handled my stiuation. At first the doctor was great. Seemed like he really cared about his patients and was sympatheic for all that was having to deal with chronic pain. He started me out on hydrs, when those didn't work changed me to oxy. When he did the neve conduction test I was diagnosed with neuropathy. Then came this new medication called Avinza. It is time released morphine and it changed my life. Matter of fact I was one of the first patients to take it. No more of the crazy side effects but I do take ultram for breakthrough pain. Then one day out of the blue, he writes major depression on my record and sends me home with 15 mg of ms contin. I was so sick going through withdrawals. I called my medical doctor and he put me back on the Avinza. Later I heard the pain doctor was taking cash under the table so he kept thoes patients. Find you another doctor. Sorry so long everybody. But I hope maybe this has helped some kfaines. Good luck... kim
jacy53
10 Mar 2010
I too was on Avinza great stuff but insurance will no longer pay for it so have to do the ms contin. better than nothing
Anonymous 21 Mar 2010
Same thing happen to me, I couldn't pay for the Avinza and I am on time released ms contin also. It seems to work ok and I do have ultram for breakthrough pain (to me goody powder just as good as ultram). When the pain is so extreme because of the neuropathy nothing helps. I hope nobody ever has to deal with that sort of pain. I can't even touch the skin on my legs it hurts so bad.
14 Mar 2010
My neice was diagnoised with lupus also. She had went in one day for a complete physical and they said everything was fine. she woke up that night 3 times her size and was taken to the hospital. No one there could figure out what was wrong with her. My sister her mother at that time was a receptionist for a physciatrist and all he had to do was take one look at her and he knew immediately what was wrong with her. She has had this terrible disease since she was 16. She is now 47 and the dr. gave her predisone and demerol for the pain. I don't know what kind of pain meds. she recieves now but I know that lupus is very painful and that there should not be any need for you to have to wait on an MRI to come in. Doctors just don't care anymore, seems its all about the money they can put in their pockets. Not what they can do to help you out. SO SAD. BUT TRUE. This pain Dr. can treat you even if your MRI doesn't show up anything wrong.
jacy53
15 Mar 2010
The problem, Law seuit waiting to happen. They do not want lawyers knocking on the door.
kfaines
15 Mar 2010
what kind of lawsuite everything is documented from 2007 there is a paper trail of my illness and times in hospitals i cant figue out what hes afraid of? i told he everything hurt not just my back but seems thats all he heard back
18 Mar 2010
Sorry to hear of your situation. That really stinks to say the least. Hope something has changed by now. I am a recovering addict who had an addiction to opiates for chronic pain. I was put on suboxone to help with the withdrawl, but to my surprise, it manages my pain as well. I find it to be a miracle. Maybe it could help you? Dont know, just wanted to put it out there. Hope you are in less pain and found a better doctor or clinic. Best of luck.
Sacosam
30 May 2010
Hi kateb; I totally aggree with every word you said , and I too will vouch for Suboxone, and also Subutex, 100% Sacosam
29 May 2010
I am at a loss. I cannot believe that your PMD said he could no longer prescribe these meds for you! Case and point... I see a PMD for chronic abdominal pain. They ordered an MRI of my back because, at times, my pain radiated through to my back. The MRi was normal, but I still get my meds every month just like before. I have adhesions from multiple surgeries, as well as nerve damage. Just because they can't SEE anything, does not mean you are not in legitimate pain! That kills me. I would suggest finding another PMD, or in the very least, ask your current PMD why are they not treating the original problem for which you came for in the beginning. It makes no sense to me whatsoever. It sounds like they are trying to cover their own butts for some reason. I would say to you, DEFINATELY find another doc. One who is somewhat sympathetic to you and who will not judge you. One who will actually do some good. Hope this helps. Heather
12 Sep 2010
I have SLE also. I take plaquenil and I often have to take steroids which I hate but they do help. If you are ever on steroids ask your dr for a sleeping pill too because I find that steroids make it very hard to sleep. You will have to have many much needed blood work done too. I have been a survivor for 14 years and I am 32. It is a very hard disease to live with and many people, even your loved ones, do not understand it or know what it is like to deal with lupus. Your pain dr sounds like an a**hole! I finally started going to a pain management dr for my pain too. They can't really "treat lupus" pain but since I have bad back issues too they help me. Lupus is a disease that a lot of drs do not really know about unless they specialize in it. I am so sorry you are going through this. I would def get another pain dr!! Yours sounds incompetent. Tramadol is like water after you are on it for a while. After years of being on it I had to get something stronger.
Sacosam
13 Sep 2010
Hi molove _ _ _ _ Did you read texasjanes post... I like it and I like her attitude. Sacosam
kfaines
18 Aug 2011
thanks,its been some time since i posted that ive been seeing a new pain management doc for almost 2yrs now i too have back issues,bone issues i've been put on stronger drugs,still pain i'm sure you know but alot better off then when i posted.i cant take the baths with the salt because i also have kidney disease again thanks
22 Nov 2010
I have always found that the pain meds have a limited window of usefulness. I have also used massage (light) and acupuncture for pain management and found it worked better than any combination of meds I have tried. Problem with the narcotics is huge potential for getting addicted AND making really poor choices and messing one's life up worse than necessary. See if you can find an acupuncturist. I also used hypnotism with some success for pain management. Good luck.
26 May 2011
I have actually found that going to find the cause of the pain is the best way to take care of the pain in the long run. So many of us are so keen on going to a drug because it's easy and it's fast but all it is doing is covering up the pain. After a length of time that pain medicine just won't cut it anymore because our body becomes so accustomed to the dosage we are at.
This past year I have gone to see a Maximized Living doctor in Minnesota and since we have been correcting the cause of my symptoms I no longer suffer from headaches on a weekly basis. My allergies are nearly gone and I have so much more energy. This is not the result of taking any drugs.
I urge everyone to go find a Maximized Living doctor in your area and find the cause of your problem.
kfaines
18 Aug 2011
like i stated the cause of my pain (which is a bit more serious than headaches & allergies)is lupus sle for there isnt a cure for and i have since this post been in pain treatment thanks anyway
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lupus is an inflamatory disease. darvocet is tylenol based and really does not touch this pain. ibuprophen is an antiflamatory drug and will help much more. in my research i see that lupus causes increased histimines and causes inflamation so i started my own course of treatment i take motrin(ibuprophen) up to 3200 mg daily is the max dose so i take 400mg 4 times a day and also at bedtime take 2 25mg benedryl which is an antihistimine. no dr ever prescribed this but if you put them together it makes sense and it has helped me for 5 years. motrin and benedryl never hurt anyone that i know of.