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Your Advice Changing Doctor's

Hope3HHope3 Posts: 751
edited 03/20/2014 - 5:14 AM in Chronic Pain
Not sure if this belongs here or not.
First of all I want to tell each of you how much I respect you for how you
make good of your lives and look for all the bright sides of things. It has
made me feel guilty for whining about my problems.
I am seriously desperate today and so depressed I just want some advice
as to what direction to go. Be honest let me have it if you think
I am looking at things from the wrong perspective. Will make this as short as
One thing is my stomach: asked and got great advice from some members.
I have battled my stomach problems for over 2 1/2 years constant bloating, nausea,
acid (actually burning my throat, side of mouth and blisters inside). My stomach
right now never goes down, the pain is unbelievable, food hurts to eat I live on toast,
crackers, water, Gatorade, mashed potatoes just boring food. I have seen 4 Doctor's
GP who tried different meds. finally Nexium which helped at first not now.
Gastroenterologist results: x-ray nothing showed up and said go on diet bland food.
GP retired new GP did not even look at my chart, rubbed stomach 10 minutes later
"you do have an issue try drinking more water, watch the spicy food".
I decided between that and some other issues he would no longer be my doctor.
New GP sent me for ultra-sound: Tech said "wow you are loaded with Gallstones and
no wonders you are in pain". Hey I was happy a plan!
GP refers me to a surgeon: He said "yes you do have issues but I do not feel like
with the hardness and size that is it, I want a CT and I noticed that you are taking
30 mg Oxytocin one every 8 hrs. He told me " I don't prescribe over 5mg Oxycodone
that is it so you are going to be in a lot of pain after surgery because of your tolerance".
I told him that is one of the goals my PC and I had set was to get my pain meds
down to where he could give me something that worked. He goes" You will have to
talk to him I do not do anymore and I won't" Ok I know where you are coming from.
Waiting for his office to call and I have called but after 2 weeks no results. Hummm
Pain Doc: I have been to two other Pain Clinics before this one no improvement,
therapy, $13,000. in new beds (no good cannot sleep flat) so many meds both opiate
and all the others no help, lots of allergy's to all kinds of meds, researched it all, tried so many things and yes some help.
New PC: First visit 15 minutes results: myofascial Pain syndrome caused by injury or damage to the fascia.
Cysts lower spine, arthritis, Fibro, Chronic Pain syndrome and tolerance to pain meds.
Plan: Cut the meds he said it would improve my pain. Yes I am educated about that.
Therapy and injections. He cut my meds in half first visit. From then on it was his
assistant every month for follow-up and saw PC at injections.
I was excited had a plan, Well injections no improvement and the last ones he hit
something now I have itching, water running down my legs (no water there), weak left
leg, balance issues, bubbles across my butt under the skin, waves in eyesight. What
the pain and yes I let that part slide it is expected. At the time of the last injections my heart rate
went up to 134 and headache. I called the office and they said "ice packs and Aleve".
But now 4 weeks later it has not changed and I am scared. Made an apt. with eye doctor.
Follow up assistant I told him about the injection: he says sometimes he hits muscle and
it will let up and go see your GP for your heart. I did my heart, kidneys and liver are great.
He said I won't lower your meds. you need to see the PC.
Last week PC took Hubby with so if the Doctor wanted to ask him anything he could.
I told him about my stomach and had the Doctor called? He said no and then he pulled
up the CT and told me you have gallstones for sure but not sure what else. I told him
about what the doctor said about pain meds. He told me well I don't give out acute pain
meds you need to find a new surgeon. I really tried to follow the guidelines and just tell
him about the pain related to my back. He dismissed me like a child and it infuriated my
husband. He has watched me cry, pace, not able to do a thing on and on. I am not one
to stop my life I do all the things we talk about to keep living my life. But I can't do it and I
am scared for the first time this is not me. What do I do get a new PC for pain management
and a new surgeon
for my tummy. Please help me will that be Doctor Shopping? I wanted to succeed at that
Pain Clinic if I have to continue there I will but my husband is giving me hell for it.
Please help me today I am even getting my life in order not because of the pain so much
just that I am so so sick, tired, no family involvement, too sick and in pain to attend things.
I want to go see my Mom who is in a rest home 3 hrs. away and ill but there is no way I
can, she calls crying that is hard to take. I have never been like this so forgive the long letter
I won't do it again I promise.
Thanks for all you do and being there for me and all the others. I know I get on my high
horse or whatever but I do feel like this web-site is critical.
Have a warm, soft, kind, not so much pain day.
Thanks always for your help


  • terror8396tterror8396 Posts: 1,832
    edited 03/20/2014 - 10:33 AM
    if you keep going to different pain clinics that would be problematic at best. things like this get around and it is on your record. drs can upload records of patients to see what and how much and who they have gone to and for what reason. pain clinics are an issue. you might have chrones disease which my wife has. all of these symptoms are also an issue. it seems you have about 50 complaints. most illness' don't have that many issues. sciatica leg, but pain and numbness. kidney stones pain in uretha. gall stones, pain in shoulders or back or chest, not all of this other stuff. when doctors hear of 50 different symptoms they get where they don't believe the patient. so when a person says i have a headache, which makes my arm itch and i have pain in my toe which goes to my left thumb and back to my head, i am exaggerating and tongue in cheek but you get the point. quit going to different pain clinics. go to one establish a relationship and stick to it. why people have this obsession with going to all of these pain doctors is confusing to me. i don't get it. they all can't be that bad
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • Joh
    There I go again communicating wrong cause your response means zero
    to me. Fifty complaints "Hello" maybe we both need to learn to communicate.
    I am not even going to waste a response to you or read another message from you
    cause you always look for the seeking this or seeking that I guess it is your nature.
    One thing I am going to say is I went to two other Pain Clinics because I was
    instructed to by my GP now did I communicate that right?
    Thanks but no thanks and funny I am not even bugged by your reply and give your
    wisdom, kindness and whatever to whomever I don't value it.
    Have a great day and best with all you deal with!!!
  • if you don't want an answer, don;t ask
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • I have no good advice, I'd be frustrated and confused as well. I'm sorry that you are unable to find help.

    I know the one constant I've had in my pain life is, a wonderfully caring and compassionate primary care doctor. Whoever I see , whatever procedures are planned, I'm always discussing things through her.

    I wish you luck and some peace.

  • mcjimjammmcjimjam Posts: 307
    edited 03/21/2014 - 10:00 AM
    EDIT I don't think your description of your situation is suspicious. Doctors see some people who have only one health issue, but the people they see more often are those with several health issues. It is reasonable to change doctors now and then when you are not satisfied with them. Just as you would change mechanic if you were unhappy with the work done on your car. It is our right as patients. These are our bodies. It is we who suffer. I don't think fear of the DEA should stop a person changing things that aren't working. If a doctor is truly incompetent, continuing to see him could do a person harm.

    Post edited by Sandi. Personal comments are not permitted on Spine-Health..
  • I TOTALLY understand what it's like to have other health issues going on at the same time as your back stuff. It's especially hard when the drs aren't 100% sure of what's going on with the other stuff. Back stuff is bad enough, but add in some other major issue, & it just really feels like we are being tested. You are lucky that your potential surgeon told you ahead of time about what he will/will not scribe. At least that gives you some time to hopefully come up with a plan that will work for you. I was not so lucky in a recent surgery I had & it may very well have put me in the dreaded "red flag" category.

    It sounds to me like there might not be total agreement with your stomach issues? So my best suggestion is that if you live within a reasonable distance of a university hospital, maybe try there & see a specialist in gallstones/stomach issues. I don't exactly how are if this will solve your pain med issue, but at least you might get the exact diagnosis, & cutting edge treatment. That reminds me....you should see if you can have this surgery done laproscopitly, or robotically. Way less invasive & way less pain. Maybe even outpatient? I've had both of these types of surgeries, & it is way better than being cut open.

    I wish I had more to offer you, but just know you are not alone.
    We can't always control the cards we are dealt in life, but we can control how we play the hand
  • Im sorry you are having such a struggle. I had my gallbladder removed about 10 yrs ago laparoscopic and would have gone home same day but threw up so had to stay overnight. I did not have much pain. The pain from surgery was actually less than the pain from gallstones. I was not on pain meds for chronic pain then.
    Now I do take 100mg Nucynta ER and 10 mg Oxycodone for breakthrough for chronic back pain. I have had 4 back surgeries and knee replacement. My last back surgery was thoracic Microdiscectomy which failed to help pain was in May 2012. I had 2 knee surgeries in 2013 and just had ulnar nerve relocation in elbow 4 weeks ago. My surgeon infuriated my husband. We had discussed in detail what I take for pain and then after surgery he did not want to write prescription for anything strong. He told me to continue with Oxycodone. I had to stop Nucynta in Jan. Because insurance wouldn't pay until I met deductible. 3 oxycodone does not even keep back pain under control so I knew this would be an issue. I told him that I have had 3 other surgeries in past yr and surgeons always kept pain under control. I called my primary who prescribes all my pain meds and she upped dosage of Oxy and also I could start my Nucynta again. She also started me on Gabapentin since I was having nerve pain from nerve being moved. Something surgeon didn't even consider.
    I am by far not a baby when it comes to pain . I have a high tolerance for pain but NO ONE should have to suffer needlessly because a doctor chooses not to treat your pain. I have had 14 surgeries since 1994 and have never had an issue with a surgeon not wanting to control my pain. I am just thankful that my primary takes care of my pain meds and I don't have to deal with PM.
    I will be thinking of you and hope they find someone who can help you. You really need to get that gallbladder out. Stones can become lodged in duct leading from Pancreas and become life threatening if it leads to pancreatitis. Maybe talk to your primary and see if t h st will write a prescription to get you through surgery. Please keep in touch and let us know how things go.

  • Kelli- you are lucky you have a good primary! That's the key as they are supposed to "coordinate" your care.
  • sandisandi Posts: 6,343
    edited 03/21/2014 - 10:04 AM
    doctors, of any specialty if you are not happy with their means of providing treatment. Doctor shopping only occurs when you are taking prescriptions from different doctors for the same condition......in this case, if you are seeing a pain management doctor for chronic pain in whatever form, but you aren't happy with the way that doctor is treating you, yet you fill the prescriptions, and then go see another PM doctor for the same condition and start treatment with them, then that is doctor shopping.
    If you are dissatisfied with the current treatment plan you are recieving from any caregiver, then you do have the right to sever that relationship and find a new doctor.
    As far as the gastro problems go, it might be worthwhile to see a gastroenterologist, and possibly an internist to determine what to do regarding better treatment for the gall bladder stones and the stomach issues.
  • I'm sorry you're going through so much. I can totally relate. I once went for a new patient consult with a doctor who told me I would be too high-maintenance with all my conditions so she wouldn't take me on. I felt so bad after that.

    I am surprised that I hear stories (and read them on this site) about people getting treatment, but I too seem to find the doctors who go all conservative on me. As you were saying - drink more water? Ice packs and Aleve? That's nothing for what you describe! In my case, I had an orthopedic surgeon tell me he needed to fuse L4-S1 but he wouldn't do it because I was too young. My current neurosurgeon said he would have to fuse L5-S1 but he doesn't want to do it because of my age. I'm 43 and was 40 at the ortho consult! I see young people here regularly who have procedures done. Why does no one take my pain seriously?

    I wish I knew what to tell you. I just wanted to say I'm sorry you're going through it, and I empathize with you. Jon does make a good point that you may have Crohn's Disease. Definitely something to look into if the doctor thinks it's appropriate.
    (see profile for medical details)

    I *heart* my TENS unit.
  • I have never heard of a doctor telling a patient that you will get 5mg of oxycodone after a stomach surgery. When I have had surgery the doctor gave enough medication to decrease the pain. I think it's really scary that after surgery he would place a limit like this no matter what happened. Treating acute pain after surgery is really important. If a patient is in a lot of pain and is not dealt with the patient may not do the thinks that help the person to recover such as getting up to walk, sitting up, breathing exercises ect. The last thing you want is a bunch of complications because the doctor does not want to treat his patient on a individual basis.
  • Hugs to you, Hope.

    I know how you feel and I know how frustrating it is. Having many symptoms that are seemingly unrelated does not mean you're suspicious at all. Sometimes there are more than one issue at play. Keep searching, keep a journal and hopefully, the next doc can think outside of the normal diagnoses and get you the relief you need.
    2015: Thoracic protrusions C7-T1, T3-4, T6-8
    Dec'13: 360FusionL4-S1 w/bone graft
    2013: 3x2-level disc injections: 12mo surgery postponement
    Dec'12: DiscogramL4-S1
    Sep/Oct'12: Bi-lateral Rhizo AblationsL4- S1
  • Tired of the painTTired of the pain Posts: 197
    edited 03/21/2014 - 5:08 PM
    I do not go to a GP because they do not know enough about anything except fevers and sore throat.ask around to friends coworkers for a good internist. Ask your PM if he has a relationship with an I reenlist. You need to become the co siege of your own treatment. Once you find an internist that will work with you PM ask for a surgeon for the gallstones that will work with us. My Internist happens to be the chief of staff at the hospital so she knows who is who. I am very lucky because my internist has been my main doctor for over 20 years. She knows I don't make up stuff and who to send me to if I need cardiac care, who will do my colonoscopy, who does my neck surgery and who is my PM. The surgeon doesn't have to prescribe pain meds if the PM knows what is going on and communicates with the other doctors.
  • sandisandi Posts: 6,343
    edited 03/22/2014 - 4:52 AM
    is usually treated with low dose medications, except for the pain pump in the first 24 hours, and 5 mg is pretty standard.
    You can't compare the treatment of acute pain with the treatment of chronic pain........two different animals, two different treatment protocals.
  • The hard way, is that people with chronic pain don't respond to the usual dose of pain meds, & non pm docs are not comfortable prescribing the doseage and/or type of meds we need for pain control. Thus, the nessicity of having your pm dr involved with any type surgery you have, back or not. I did a whole thread about my experience with this recently, so I won't repeat it all.

    I was just thinking, however, that when I told my pm about my bad experience pm & my recent surgery, & that if I ever had surgery again I would make sure he was involved. He made the statement "well I can't follow you around everywhere". I didn't think much of it at the time, but this was the same appt he told me he does not prescribe narcotics for any of his patients. He did 3 procedures on me, but I wish he had told me his view on drugs at our first meeting. I now realize I don't think I could count on him to be involved if I were to have another surgery. Hopefully nothing comes up!
    We can't always control the cards we are dealt in life, but we can control how we play the hand
  • by adding a short acting pain medication to the normal medication schedule of a patient being treated for chronic pain. Acute pain is very short lived. , and usually managed quite well by the hospitals....However, some surgeons and some doctors are not well versed in how to manage both and have difficulty making the dosage calculations . Whenever I have had surgery and I have had far more than my fair share, while under a pain management treatment program, I have talked with both the surgeon ahead of time regarding the plan for in the hospital and after in the acute recovery phase, and my PM doctor, to discuss when he would resume or oversee my pain management care once the surgery was done. I also discussed in detail with the anesthesiologist at the pre surgical testing visit, and again upon arriving at the hospital , my medication needs and arranged for a pain management consult for the immediate post op care while in the hospital. I also always had my pm doctors' contact info handy as well. I remember your problems and the thread you are talking about....
  • Because morphine does nothing & I'm allergic to dyladud. The only thing that really works is demoral, which is hard to get, as most hospitals are phasing it out. Even if the dr is willing to provide it, the nurses are very uncomfortable administering it. I've found it strange that morphine is stronger than demoral, & it doesn't do anything for me. Now that I've heard about genetic testing to see how you metabolize drugs, I think I found my answer. I'm going try to get it done ASAP, I think it's a really important thing for pm, so we know what is more likely to work.
    We can't always control the cards we are dealt in life, but we can control how we play the hand
  • my pain guy always is involved with my surgery and also with the surgeon. they confer with each other before, after, and during my hospital stay. they both visit me and it is the pain guy who sets me up with the morphine pump where you dose yourself and he will adjust it as needed. my surgeon comes in to check my surgical site to check for infections and healing. he also asks about pain but he defers this to the pain doctor. i did not ask them to work together. both of my pain doctors always worked with my surgeons and i never had to ask them. also when i have back surgery, i am required to attend a workshop given by the hospital and with the surgeon and pain guy. they gave us a binder and we had to attend twice a week for a month. they go over what to do and not to do, meds, going up and down stairs, driving, how long before one can be active, how long to wear the back brace. they also have a company come in to measure one for the brace. i had to wear mine for 9 months minimum.. we also saw movies and had nurses come in and tell you what to expect. i was lucky to have my own room except for one time where i had to share. so the hospitals, doctors and everyone were very through in the pre and post op portion of back surgery. i am not sure why some pain doctors and surgeons do not get involved together with some of you guys. it is standard procedure and i have been in 2 different hospitals for back surgery. this also does not have to do with insurance or whatever. it has to do with the hospitals and doctors being involved. also one time i had a nurse come to my house when i had a blood clot. as far as allergies, my pain doctor has a list on his computer as does my gp of allergies. they also give you a wrist band to notify the nurses and doctors of allergies when having surgery. in my opinion all of this should be standard procedure and i am not sure why it is not. every back patient that i have talked to says they had all of this stuff also. i still have my binder by the way in case there is something that i need to know. my gp referred me to a pain guy who referred me to a surgeon so this is how all doctors know what is going on with the other. i can't imagine going in to back surgery without a pain guy not knowing a surgeon. also the anathesiologist called me up the day before to go over allergies, what to expect and to also let me know what the pain dr, the surgeon and himself were doing. i also had a guy who monitored the nerves involved to make sure there was not damage call me up to let me know also. this should be standard for all patients who get surgery. if you have an HMO maybe it is different and less through. that is why i have a PPO
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • have a pre-op class Jon, although I do agree, it would certainly eliminate alot of the post op issues we see crop up. The big city medical centers seem to offer those type of education programs more often than smaller, regional facilities.
  • it was also a good way to meet people that were having the same health problems as you. if you remember when i posted about the guy who had allergies to methadone and ended up walking out of the hospital naked except for shoes and socks i met him at this workshop and he wanted to exchange phone numbers. i told him that i usually don't give out my number to people i do not know and boy was i glad i did not give it to him. i still see him walking out naked but i did feel sorry for his wife when they called her at home to let her know that he might be home early except for no clothes.
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
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