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Exclamation Nov 03, 2018 at 01:18 PM
  #1
Dear Practitioner(s):

I know that y'all are the "professionals", however, the very next one of you that tells me to be more active or to get more exercise is likely to get the ever living @#$%! slapped right out of you!

If you only knew how discompassionate this advice is and how utterly stupid you sound when you say it to me ... Maybe I need to tell you exactly that the next time you offer this advice.

Do you actually think that I enjoy not being able to do the things I love and used to be able to do (nature walks, vigorous hikes, fishing, etc.), or just how badly I grieve the loss of them because it simply hurts too much to engage in them anymore?

I've learned to manage my usual pain levels (3-5 on a daily basis), but even just 20-30 minutes of light to moderate activity sends my pain levels spiking anywhere from a 7-9 to right off your effing "what's your number" pain chart, not to mention totally knocking me out for a day or two afterwards!

So eff your "be more active and get more exercise" advice, thank you very much!

It saddens me to know that even those we pay to "help" us cannot even begin to fathom what it is like to live with chronic pain as they, themselves, do not suffer with it.

With all that being said, nobody's going to get slapped, nor do I wish this kind of pain on anyone so they could understand what it's like to live with it.

I just needed to ventilate is all ... Thanks for listening!

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Default Nov 03, 2018 at 01:36 PM
  #2
Pfrog - im so sorry to hear this.

I hurt my knee this spring, and have spent the past 6 months pretty much in bed, which has helped my knee get better, but brought a different set of problems. Like they say, getting old sure aint for sissies. Signed your pal!
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Thumbs up Nov 03, 2018 at 02:55 PM
  #3
Excellent post pfrog!
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Default Nov 03, 2018 at 06:44 PM
  #4
Thank you.

I am having rather extreme Achilles tendonitis, been going on since early summer. I have not seen my GP because I know that all she'll say is, "lose weight...but with the meds you're on...hmm..." *shrug*

And then I'll tell her that even when I danced ballet until age 41, before I agreed to poison myself with Seroquel, I had all kinds of tendonitis in my right foot. I weighed 110 lbs.


But, she won't believe me - or she'll tell herself she doesn't believe me, because she won't know what the flying eff to tell me to do to relieve the pain.
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Default Nov 16, 2018 at 05:44 PM
  #5
Quote:
Originally Posted by Pfrog View Post
Dear Practitioner(s):

I know that y'all are the "professionals", however, the very next one of you that tells me to be more active or to get more exercise is likely to get the ever living @#$%! slapped right out of you!

If you only knew how discompassionate this advice is and how utterly stupid you sound when you say it to me ... Maybe I need to tell you exactly that the next time you offer this advice.

Do you actually think that I enjoy not being able to do the things I love and used to be able to do (nature walks, vigorous hikes, fishing, etc.), or just how badly I grieve the loss of them because it simply hurts too much to engage in them anymore?

I've learned to manage my usual pain levels (3-5 on a daily basis), but even just 20-30 minutes of light to moderate activity sends my pain levels spiking anywhere from a 7-9 to right off your effing "what's your number" pain chart, not to mention totally knocking me out for a day or two afterwards!

So eff your "be more active and get more exercise" advice, thank you very much!

It saddens me to know that even those we pay to "help" us cannot even begin to fathom what it is like to live with chronic pain as they, themselves, do not suffer with it.

With all that being said, nobody's going to get slapped, nor do I wish this kind of pain on anyone so they could understand what it's like to live with it.

I just needed to ventilate is all ... Thanks for listening!



Pfrog I hear ya brother. I feel the very same. I've been weaning off the Methadone. Taking that since 2005 with very good results. Having a life. Not so much anymore. I was at 50mg daily. Now I'm at 10mg. and all that bad stuff with my back and neck is back. Plus all the stuff you go through when the body wants the pain to stop again..... and it won't, just gets worse . So where do we go from here, ain't no where to go except up from where I am.
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Default Nov 17, 2018 at 06:51 AM
  #6
Quote:
Originally Posted by *Laurie* View Post
Thank you.

I am having rather extreme Achilles tendonitis, been going on since early summer. I have not seen my GP because I know that all she'll say is, "lose weight...but with the meds you're on...hmm..." *shrug*

And then I'll tell her that even when I danced ballet until age 41, before I agreed to poison myself with Seroquel, I had all kinds of tendonitis in my right foot. I weighed 110 lbs.


But, she won't believe me - or she'll tell herself she doesn't believe me, because she won't know what the flying eff to tell me to do to relieve the pain.
I also have chronic tendonitis in my left foot. My feet are very narrow and are different sizes. The smaller (left) foot really takes a beating because even with orthotics, the shoe on the left foot is too big. I've had chronic plantar fasciitis for months now. I also have arthritis in both feet; the pain is off the charts and sometimes I can barely walk or stand (especially after exercising). I also need to lose weight but when you can't walk without pain, well, that's very hard to do. I tried a modest exercise program and developed sciatica. I know that I need to stretch more. Finding the discipline to lose weight and to stretch when you're depressed and don't feel well is not easy.
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Default Nov 19, 2018 at 04:14 PM
  #7
I love your letter pfrog! I'd also like to give it to my doctor that prescribed physical therapy and nothing for pain! Thankfully, I have some pain medicine that helps anyways with the help of ice packs and hot socking salt baths. But it always returns usually the next day...sigh.

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Default Dec 03, 2018 at 10:26 PM
  #8
Quote:
Originally Posted by Pfrog View Post
Dear Practitioner(s):

I know that y'all are the "professionals", however, the very next one of you that tells me to be more active or to get more exercise is likely to get the ever living @#$%! slapped right out of you!

If you only knew how discompassionate this advice is and how utterly stupid you sound when you say it to me ... Maybe I need to tell you exactly that the next time you offer this advice.

Do you actually think that I enjoy not being able to do the things I love and used to be able to do (nature walks, vigorous hikes, fishing, etc.), or just how badly I grieve the loss of them because it simply hurts too much to engage in them anymore?

I've learned to manage my usual pain levels (3-5 on a daily basis), but even just 20-30 minutes of light to moderate activity sends my pain levels spiking anywhere from a 7-9 to right off your effing "what's your number" pain chart, not to mention totally knocking me out for a day or two afterwards!

So eff your "be more active and get more exercise" advice, thank you very much!

It saddens me to know that even those we pay to "help" us cannot even begin to fathom what it is like to live with chronic pain as they, themselves, do not suffer with it.

With all that being said, nobody's going to get slapped, nor do I wish this kind of pain on anyone so they could understand what it's like to live with it.

I just needed to ventilate is all ... Thanks for listening!

Practitioner here,
First off I equally despise the 0-10 scale, however we are pretty much forced to use it. We are asked to objectify a very subjective experience and there isn't many alternatives that are considered acceptable.

In terms of the need for exercise. It is true that is beneficial and will help. I Definitely understand your frustration with the difficulty exercising. It's not an uncommon problem. However I will commonly stress the importance of exercise because it is important and not just for pain reasons. Where I think some practioners go wrong is that they have unrealistic expectations of exercise and demonstrate a lack of empathy on why it may be so difficult.
I only mention it because most likely the practioner working with you has you best interest in mind, they just need to improve their approach.
Thanks for your feedback
Chrain
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Exclamation Dec 05, 2018 at 12:38 PM
  #9
Okay, Pfrog ... Now is the time to practice the "If you can't say something nice, then don't say anything at all." thingy ...

I'm sure the previous poster meant well, but ...

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Default Jan 20, 2019 at 04:42 AM
  #10
Like one of the above posters, treating one problem with rest brings on additional problems elsewhere. If only doctors thought about secondary problems that are brought about by the remedy of the first. If only we were warned. Pain is generally only understood when one is experiencing it. Many doctors are just not treating the patient as a whole. It's easier for them to put a bandaid on the finger, tell you to take 2 aspirin for the pain and send you on your way.
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Default Jan 20, 2019 at 07:59 PM
  #11
Hello Pfrog. I am a healthcare professional and I read your letter. Thank you for sharing your truth. I am sorry you are in chronic pain and dealing with the loss of favorite activities and a different lifestyle. That does indeed sound like something you would grieve

I think your letter is very important. I've had a lot of patients who live in chronic pain and although I cannot know what it feels like for them...I can certainly provide gentle empathy and kindness.

As far as practitioners go, well, we're human right? Some of us are great at our jobs and some of us are...not. As a patient myself, I've had several negative experiences with MDs...sometimes related to my depression/anxiety and once even from a urologist (dealing with interstitial cystitis) who was very inappropriate. I even had a MD tell me that my insomnia was my own fault because I didn't get up early enough on weekends. Cheers Doc! Problem solved

There are great providers out there, many have been my colleagues, and I am so sorry that you were on the receiving end of the folks lacking empathy or insight. Unfortunately, I have met some healthcare professionals who have a bias against folks with chronic pain and assume it isn't real or that it's exaggerated somehow etc. Always blows my mind when a human decides that they know what another human is actually feeling and negates the self-report. I've also seen a bias from some providers against folks struggling with chemical dependence. As humans, we all have our biases but when we are given the honor of caring for others we must monitor our biases and separate them from the work. I never met a patient who came to me for assessment and/or treatment hoping that I would judge their truth, their choices, or their life.

I wonder if you are interested in the research on chronic pain? If you're not already familiar that is There are folks working hard to research it's effect on the neural pathways and endeavoring to develop new solutions which patients can tolerate. I went to a presentation given by two PTs (I'm not a PT myself) on the complexity of chronic pain and the many effects on the brain. It's really important research.

Never stop giving providers your feedback (calmly of course ) That is how we error-correct, adapt, and evolve as clinicians. I have my own provider assessment form which I give to all patients. They rate me before they leave the clinic...things like did you feel cared for....what could I have done better...what did I do well...were your unique needs met? etc.

Thank you again for your letter. I currently have some time off work but when I return I will be reminding myself of your letter every time I meet a new patient. Truly.
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Default Jan 22, 2019 at 05:04 AM
  #12
We should add the fact that it seems like those who have legitimate health issues with pain are the least likely to get medication to relieve the pain.

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Default Jan 30, 2019 at 05:47 PM
  #13
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Originally Posted by sarahsweets View Post
We should add the fact that it seems like those who have legitimate health issues with pain are the least likely to get medication to relieve the pain.

That is all to true. If you ask about it you are immediately lumped into a group of people you don't belong in. Most people don't understand that the 1-10 scale is not quite right. It should go up to 12. 11 is the place where you start hearing the high pitched keening sound. It's you, screaming in your mind. At 12 the sound actually comes out of your mouth right before passing out.... anyway just a personal observation. If you are at your limit, what ever it may be, tell your provider. Tell him/her you can't function like this anymore. Ask for a referral to Dr. Kevorkian if they won't pay attention.
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