i have kyposcoliosis lumbrosacral, L5-S1 spondylolisthesis grade 2, and radiculopathy, and hepatitis c. After 4 LONG YEARS, i finally got my acceptance letter for disability (ssd,ssi) today. Over the years i have been on many different pain medicines. I want to be able to express what medicines have helped and not helped to the pain management md i will be trying to find in the future. I don't want to be overly "forceful or opinionated", on what medications i want for pain, but at the same time i don't want to just blindly do what the doctor ordered and suffer in pain. What is the best way to find a pain clinic that is not AFRAID to prescribe strong pain medicine. There is no cure or surgery for me. and i will probably end up in a wheelchair per surgeon. The only thing for me is getting as much pain relief as possible thru pills, pumps, and shots. Any questions or ideas to help me find a reputable and empathetic pain management clinic will be greatly appreciated. thanks in advance for your help!!! jane
24 Oct 2010
Dear Jane: Oh, how I feel for you! I too have some of the diseases that you mention except the hepatitis, and I use strong pain meds. On top of that add fibro, intractable migraines, and three compression fractures in my spine. (From osteoporosis) Try telling my rheumatologist that no, even if they 'look' healed on and X-ray, I have a great deal of pain from them still! Luckily my rheumatologist is NOT my pain doctor. The first place that I would look, would be a university hospital. They should have a reputable pain clinic in which they have not just pills to give you, but procedures that should greatly reduce the pain, thus the reliance on narcotics. Secondly, I don't know where you live, but if you have a good relationship with one of your doctors, ask them for a referral. It may take several tries before you find a doctor that you like, but chances are, if they make you sign a contract, agreement, whatever you want to call it, they offer what you want.
Generally, they are anesthesiologists with a board certification for pain management. Finally, ask a pharmacist that you know and trust. The know who prescribes what.
Go through several sites where they say "find a pain management doctor in your area" or something in those words. There are many sites like that, and check out the doctors on the web. If one name keeps popping up, I would try that person first. I have been to a University pain clinic, psychiatrist, pain specialist, and at the time I am going to a physical rehab specialist who works in a large conglomerate with many doctors that do various different procedures that she can refer me out to do. I have had botox many times in my shoulders and lower back (and finally, the FDA has approved botox for migraines, YES!!! ) I am also looking into ablation (I'm not sure if that is the correct word), where they use radio waves to kill the nerves for about 3-6 months, and also a morphine pump. First I have to start with a TENS unit, which I hope that I get next week.
Good luck Jane, and keep in touch with your progress, but just remember, pills are NOT the only answer, and can only do so much for pain like you have. Ellen
24 Oct 2010
Msfino gives really good advice. I also want to add that when you do your research in looking for a Pain Management Clinic on the internet to also read the reviews of previous patients so you can get an idea if that pain management clinic is a good place to get treatment at.
I always read any reviews and also write reviews of doctor's offices I have received treatment at so I can tell people how I was treated by my own personal experiences and then potential patients can decide whether they want to go to that doctor's office for treatment or not.
Whether those experiences are good or bad potential patients need
to know the truth in how they were treated by the doctor's and the other medical staff (women) who work at the front office.
I do understand that you want to relieve this terrible pain that your in right now and I am very sorry to hear you suffering I hope you will be able to
find a pain management clinic that can help you as much as possible.
Just the problem is that pain medications even though they are supposed to help patients relieve their pain on a temporary basis. These pain killers are very strong and can be addictive and have serious side
effects to them. I believe and read that Doctor's and Pain Managment
Clinics don't want to prescribe strong pain killers to potential patients
because they don't want patients to get an addiction to pain killers.
I only take medication when I have to. I would also search the internet
for alternative treatments besides using medications. Its worth a try because that is what I am going to do some research for myself.
I also understand how you feel about doctor's. Doctor's only know what we tell them but they don't know what are feelings are toward taking
medications? Doctor's listen to us as patients so they can come up with
a diagnosis. I wish that some doctor's will treat us patients as individuals
and not lump us into one group because were all different people.
Just because (one person can be on a higher dosage like 1,200 mg.
of a pain killer medication), (it doesn't mean that I can be on that same
dosage) because some people like me can't process a lot of pain medication at one time.
Doctor's need to go over and assess each patient that is under their
care and treat us as one separate case not lump us all up together in one group and assume that were all the same because were not.
That can cause medical mistakes when doctor's assume all patients
who have similar problems should receive the same treatment.
26 Oct 2010
I'm in a lot of agreement with your 1st two answers here. As someone who has RSD and was in pain management until only a few months ago now you do need to find one that is compassionate and caring who has the knowledge of the diseases that you have.
Because you have previously been on medications that helped or not, I would suggest making a list of all the meds you have been on and for what conditions/symptoms dating them back to when you were taking it as close as you can. I would separate the ones that worked from the ones that didn't along with saying why they didn't work including the dosage and how many times a day each was taken. I would also take in thought the combination of certain meds that helped or didn't.
By taking in not only a list of previous meds and how they helped or didn't, also take in a list of questions you need to ask the doctor you get for your 1st visit. That helps you and the doctor to hopefully get off to a good start.
Bring in any/all records you have and write down how/when all of these diseases/conditions/symptoms started.
You have over a 4yr history and esp on your 1st visit it may be easier for the doctor to read down what you've written vs the actual med records that go back so far. That way it's not like you are asking for certain medications but being more informative about all that you've been through including medications and/or treatments.
Try to keep it short and separated so that the doctor can easily read the info you are providing. I would start keeping a pain diary now if you haven't already done so as that also helps your doctor know day to day how you live, how much pain you are typically in, and all the limitations that pain has caused in your life.
You don't have to go back to 4yrs ago for the pain diary part and make this separate from the short list information that you are going to provide. Just start today and keep track of it by using pain levels throughout a day, what you were or were not doing at the time, anything that makes your pain worse, etc.
This has helped my doctor tremendously as she stepped in only recently and has my medical records and a referral from my 1st pain doctor who diagnosed me. She didn't need to know everything going back over 11yrs ago but the list I made helped her to help me and to get off to a wonderful start.
I know others have given you the good advice on how to find one but I felt it could help you be armed and ready when you do go to have broken down info that could help this new doctor begin to know where to start in your treatment and what you've been through that helped or harmed you.
Also this way you aren't being "pushy" about anything; just informative.
I hope this helps so you get the best treatment possible,
16 May 2011
I am in NJ and in DESPERATE NEED OF A PAIN DR. I have had surgery on my back at the L5-S1 level and have permanent nerve damage from it! I live in the Southern part or NJ and it has been next to impossible to find a dr to help me... The DR. that I was seeing had me on Oxycodone 15mg @ 4 times a day and that worked perfectly fine for me... I am not looking to get high, just finish college and move on with my life pain free... I still do not see what is so hard for Dr's to understand about that... Is what I was taking really that high of a dosage? Like I said, I am 32 and just trying to finish college since the surgery 3 yrs ago... Can anyone out there help??? PLEASE!!! Thanks!!!
20 May 2011
This is a good post with a lot of good replies. A few months ago I thought I had finally gotten a handle on my pain medication and had the support of my doctor. Then I had to switch to a new doctor and at the first visit we talked about the pain medication and he seemed okay with it and asked if I needed any more, to which I told him I was okay at the time and did not need a refill. Well, at my 2nd appointment with him, which was for pain med refills, he was totally different and wanted to switch me from ms contin 60mg 2x day and norco 7.5 up to 4 pills a day to a patch called Butrans, or something like that. throughout the last 6 years I have been on so many medications and have been through hell with side effects and have been so broke because of how much I had to pay. Now I am on 2 generic drugs that WORK FOR ME and help me out so much and he wants to switch me.
I will need to research this patch thing, but my thinking is that its some form of non-narcotic patch that probably works on the same receptors as the morphine, but is not morphine. Those may work on someone who has never been on morphine, but when you go from morphine to something that mimics it how do they expect you to adapt when your not getting the real thing? Just like with Ultram, Ultracet, and Tramadol - all of those did not work for me and in fact, the Ultram cause seratonin syndrome because the doc and pharmacist did not warn me about when to take it versus my other drugs. Man, I was so pissed... and so sick.
Anway, I do have a list of all the meds I've tried, but will add more info to it like suggested above in a post. I also recently got a complete printout of all the meds I've been prescribed since like 1999 - man, its a huge list. But I'm willing to show the doctor all the meds I've been on and for how long. Oh yeah, I have osteoarthritis, inflammatory arthritis, back problems (cant remember the L-#), fibromyalgia, etc. The most pain I experience is from the arthritis. I've had a knee replaced after having like 5 surgeries on that knee, which didnt go so well b/c it still hurts like heck. I need the other knee replaced but after how the first one went, no thank you!!
When I met with this new doc the 2nd time he said I was on ALOT of pain medication and he isnt comfortable being the one/doctor that causes me to become tolerant to the meds, whatever that means. I dont think it is that much. It certainly covers a lot of my pain; although, I'm still in considerable pain all the time, its tolerable with the pain meds. I have never felt HIGH from taking narcotic pain meds. I only take them strictly for pain and if its time to take a Norco pill and I'm not in pain, then I DO NOT TAKE IT. Then other days, like when the weather changes and I'm in huge pain, I have extra pain meds to help me get through it. The first time I met with this new doc we discussed a weight management plan, diet plan, meeting with a physical therapist and get going on an exercise plan. I expressed to him then that starting exercise will be very painful for me b/c I've tried so many times to start exercising, even very lightly, but end up hurting myself or become bedridden b/c I'm in so much pain. Therefore, I will absolutely need to stay on the meds I'm taking to get me through the beginning. Does anyone have a doc that works with them while their beginning an exercise plan? Does it make sense to you guys that I would need the pain medication for when I do exercise? I dont see why he wants to switch me to a patch when what I am on is working so well and I can afford it. I'm on disability and sorry, but I cannot afford to pay a $50 or $75 copay on a medication that may or may not work and could very likely end up in a drawer only half-used. Those days of that kind of freedom are over since I lost my job Sept 2008 and am now on disability. Due to these dr's prescribing various expensive medications and ordering expensive tests and procedures, some not covered by insurance, we are now in the process of filing medical bankruptcy. It is so stressful doing this, but we have no choice as there is no way we could ever make a dent in the total amount I have in medical bills.
anyway, sorry to get off topic there. Has anyone tried the butrans patch and was it inexpensive and how did it work for you?
Thanks guys! I'm so glad there are forums I can post to. Otherwise I have no one to talk to except my husband, and he doesnt quite understand the pain I'm in, although he tries and does support me. Lastly, I keep a daily journal of all the meds I take and why I'm taking them (what kind of pain I'm having, etc.), the food I eat, the exercise I do, and what is going on that day - my activity level, etc., and my husband looks over it every now and then to make sure I'm not taking too much Norco (which I never have), but its just a secondary precaution in case I become unaware of what I'm doing or whatever. Its also good in case I'm in a lot of pain and can barely talk to ER doctors or pass out and have to go to the hospital. In the past my husband just grabbed my journal and was able to tell the doctors what meds I took and what time, the severity of my pain or whatever it was that was going on, etc.
Thanks! Have a great day!
14 Jul 2011
Still no luck finding a good pain dr. I don't know what the problem is with these doctors around here... they give the drug addicts pain meds out the wazoo and the people who have legitimate pain have to suffer!! How the heck does that work?? I just do not get it!! Please if anyone knows of a good pain doctor ANYWHERE in NJ let me know I will travel!!
2 Aug 2011
Hi janem502... I "friended" you just minutes ago... hope you're looking for friends as well with what we r all going thru. My best advice is to go online & check out whatever forums you can find about pain mgt. in your particular home area. I stumbled upon my dr. (who wrote me quite a strong script on my first visit without even urine/drug testing me till a month later). Also TALK to people online who know what you are going through; research, research, research. Make sure any doctor you see knows (be "armed" with test results & any other documentation you have to prove you are not a drug seeker) that you are sincerely in pain and what you've been told by previous doctors. Tell this doctor what meds agreed with your body & which ones didn't. Just be HONEST & be sure to look him or her in the eye while in conversation.
Doctors are trained in psychology to an extent as well! In our cases with the med situation, honesty is actually the best policy during your first consult. Hope this helped you... regards... look forward to future contact :)
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