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One question I am always curious about as both a pain management nurse and someone living with persistent pain is if you could tell health care providers one thing about your pain or persistent pain in general what would it be. If you can’t go with just one do a couple but prioritize them. (for those who don’t know me, I have persistent post craniotomy pain , which believe me, is not known or understood by most health care providers-when I saw my neurosurgeon at the 3 month mark after my craniotomy for a tumor he asked if I was having any pain. I said I was and he looked offended and said “People this far out from surgery don’t have pain”). So my statements would be
1) I have the right to be believed and have my pain treated in way that is best for me.
2) It is important to keep up with education about persistent pain, pain syndromes, medication used for pain as well as non-pharmacological interventions. The education should come from valid sources and be evidence based (not from the media or addiction doctors).
3) Persistent post craniotomy pain is not a headache or a migraine. It is the skull and like a broken leg which didn’t heal quite right or whose pain was not adequately controlled during the acute phase, there is permanent persistent pain in that bone (this drives me crazy because once a provider knows the pain is in your head (skull) they can’t get past the headache thing. I am sure other pain syndromes have similar problems as well.
So what would you like providers to know? -
I would like them to know that when someone reports having pain, not to automatically jump to:
1. That person is drug seeking (when they are most likely relief seeking)
2. That opioids should be automatically prescribed (they may or may not be one of the treatment options to consider)Most of all: Listen, listen, listen–clues on what might be the cause of the reported pain and the potential treatment options may be offered.
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One of the best pieces of advice I’ve received is about rating your pain. Lots of providers ask you to rate your pain on a 1<10 scale. The advise I got was to write down what those numbers mean. For me a level 6 pain is one that takes my breath away, at level 9 I’m hallucinating and at a 10 I am fading in and out of consciousness.
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Bd,
That is a great tip. I had not thought about writing down what each number means to me on the pain scale. I am going to do that and then add it to my emergency medical information.
I would like our healthcare providers to;
1) When talking about pain don’t act like we have been visited by alien’s and the idea of having pain is unheard of.
2) When we are talking to the providers they need to look at us, don’t stare off into space or look at your iPad. Look & Listen!
Take care,
Noki4 -
I would like them to:
1) take my increased pain report seriously. When I state it’s getting worse it—is—getting worse. Just because I am not acting any differently does not mean I am not physically any worse
2) I need them to look for the cause and not assume I need meds for my pain. I have gone months with increased pain levels and i had a CT scsn for a different procedure and they find out Heyyy. My thoracic lumbar snd heck my whole spine is a mess. I looked at the scan and there is obvious cervical stenosis at the site of my fusion. My neck is just getting worse and worse. This stresses me. To no end. I listen to my body it screams something is wrong—thank goodness I had a CT because they were just going to do radio frequency ablation on my nerve or cryo. Kill the darn nerves screaming something is wrong. They never really thought the degeneration could be that fast after a great MRI not so long ago. But my body told me something was wrong. No matter what I said there was no—further studies. Status quo. No more diagnostic. We are not all the same. But it’s really a mess. I can tell that just by the scans. If they say not I will have to get a 2nd opinion. And I know I’d be right.
3) think outside the box. When pain patients tell you meds do not work—perhaps genetic testing is a good idea. It was determined that I do not process many medications the way others do. Instead of thinking a patient who tells you meds don’t work for very long has just built up a tolerance–perhaps they cannot metabolize them correctly!! When a patient offers hair follicle, UA’s at any time and gets your concern because they were a substance abuse counselor for 10 years. I flipping hate this and wish they’d just hear me.
Just enough.
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So an update on what I would say to my doctors about my pain. I was just diagnosed likely with Ankylosing Spondylitis. My doctor looked at my scans and was like no wonder you have been in a lot of pain. (ummm yeah). My surgeon did not feel I needed surgery on my neck. My disks are bulging in my neck and there is obvious inflammation in my C3-C2 areas but if we can get the inflammation under control it will likely help and there is nothing touching my spinal cord as of now. So that is darn good. I do worry that there is a problem there, even though he didn’t think so, but I will just have to wait and see.
As far as the Ankylosing Spondylitis, I am not HLA-B27 positive. Because of this insurance does not want to cover my medications. I would like my doctor to fight for my formulary override. I am in a LOT of pain. His complain was that it is a lot of paperwork and to have to through it again in January is a pain. I was upset, because that is really 3 months out of my life—the holiday months–October, November, December. I would LIKE to feel better during those months and NOT wait until January to fight for them. I hate someone abdicating their duties because of work.
I get tired of insurance driven medicine instead of provider driven medicine. It’s sad that so much rampant over-prescribing and over/under treating has led to the insurance companies drawing lines in the sand. But for patients who have something lik eAnkylosing—they are truly messing with our entire lives, and I just feel like they feel those lives are dispoable. But they are not. Keep fighting no matter what. Don’t give up, if that doesn’t work, go to the supervisor. Get support, talk to a behavioral health person, hopefully that person will be on your side. It’s no easy at all.
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Hi Ynevar,
I have Ankylosing spondylitis and it is sad that your insurance seems to disregard the facts that you do not have to be HLA-B27 positive to have AS. A majority of the people with this marker never contract ankylosing spondylitis.
I understand that our healthcare providers are busy and backlogged but that is no excuse to not fight our insurance providers when we need a treatment that gives us some of our life back.
If you get the chance you should check out the support calls that TPC now has. There are 4 calls a month and it is a great place to share our struggles and to offer each other support.
Take care,
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I would ask them to please believe I am telling the truth when I go out on a limb, telling you I have a really low tolerance for pain, and quite a high tolerance against pain medications. (my late mother and my sister was/is the same) Why should I be made to feel guilty because they want to give me a low dose of Vicodin (which is like taking Tic-tacs for me) when I know that Percocet 5/325 is going to come closest to relieving any pain. And if I tell them that, I get “the LOOK” that pretty much all people living with chronic pain have been subjected to. I have only recently started telling doctors about my tolerances, because the low back pain I have kept at bay for a long time using Soma, was visited by the Sciatic Nerve monster. Whoa buddy! That combo dropped me to the floor.
And I would tell them “Listen to me! I know my body much better than you ever will, so if I say something is not right, then something is definitely Wrong!” If the doctor I was referred to about not being able to cross one leg over the other, gives me a cortisone shot which worked great,but during my follow up when I said “Dr. XXX, my lower back has been hurting a LOT for a while. Could you order an Xray or CT or whatever to look for the problem?” And am told “we know you have some arthritis, and we don’t need to expose you to the radiation. I’ll refer you to a PT”. Apparently he didn’t take the time to actually look at my chart which would have told him I had been working in a nuclear power plant for 30+years, or he would not have said something so absurd.
I guess that is the best thing to tell your doctor. Listen to and believe what I tell you. I am entrusting you with my health, you should trust me to be honest with you.
Sorry….I ramble. I am trying to hold back, but it doesn’t always work. -
Hi Barb,
No apology needed for making a long post. The forums here at The Pain Community are here for you. We want you to have a safe place to vent, ramble, to get support and to give support. We understand that it can be very difficult and frustrating to find the right words to use when we talk to healthcare providers.
We would like to invite you to our live hosted chats where you can interact with others who are on a journey of pain. The chats are on, Monday-Wednesday-Friday at 11am ET and Thursday evening at 7pm ET.
The Pain Community is also offering support conference calls four times a month. The calls are always on Tuesdays. Here is a link with more information about the support calls.
Our next hosted chat will be on Friday, 12/30/16 and our next support conference call will be on, January 3, 2017 at 1:00pm ET.
TPC_YaYa
TPC Community Moderator“The views or opinion(s) contained herein do not necessarily represent those of The Pain Community.”
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Barb
I agree. I wish doctors would believe us. I once had a doc tell me I couldn’t be in the pain I described. His reasoning? if I were I would be on pain meds and since I wasn’t I couldn’t hurt that bad. Needless to say it was my first and only visit to that doc.
take care of each other and have a gentle day
quack quack
bd -
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Guit30,
It is the stigma of living with chronic pain. There has been so much negative information put out to the public in regards to opioids and chronic pain patients. This has been brewing for some years however it exploded when the CDC put out the guidelines in using opioid medications that were meant for primary care providers. All types of health care providers decided that since the guidelines came from the CDC so they should follow them even though the CDC did come out and say that it was only meant to be guidelines for primary care providers to help them prescribe opioids safely.
TPC_YaYa
TPC Community Moderator“The views or opinion(s) contained herein do not necessarily represent those of The Pain Community.”
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I find that explaining what the number means to me and then telling them my number is more helpful — plus also telling them how limited I am in activity.
For example, I’ll say — a kidney stone is a 10, child birth is an 8, a broken bone is a 5-6. I wake up every morning at a 6 or higher and right now, I’m an 8.
For some reason, giving them perspective on what my numbers mean to me helps give perspective.
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