Archive for the ‘pain management clinics’ Category

I just spent three hours researching the advances in pain neuromodulation technology, suitable for someone with my condition. I had a conversation with my anesthesiologist that had left me “hopeful.” (I will live to regret feeling this way. Just wait…) Based on what I found, perhaps they’ll have something suitable for my condition 10 to 20 years after BItcoin becomes the World currency – not in 6 months, and not in a couple of years like he had mentioned.

So much for “hope.” How dare I think positively about the possibility that there might be a treatment out there that would be helpful for me.

As I have always said, “there’s no room in medicine for hope or unicorns.”

I have reached the end of my rope.

These sleepless nights are complete hell for both me and my husband.

My pain doctor tells me that there are no options left for me – in the United States anyway, until the U.S. decides to catch up with the needs of patients like me, as have other countries in other parts of the world the recognize that patients with chronic pain need pain relief – other than drugs – so we can sleep.

I’ve tried every intervention, Eastern, Western, New Age, etc., all to no avail. I’ve had six surgeries just for this pain issue. And I am STILL left with miserable pain that keeps me up at night, that now, due to the fact I can only lay on one side, my L rotator cuff that has already been repaired twice is re-torn.

I am left without options. Basically, I am a useless pain generator that takes up space in my tiny condo and hurt myself somehow whenever I try to do more than walk across the room (i.e., laundry, vacuuming, emptying dishwasher, etc.).

I’m not even going to mention the other chronic health issues I have to deal with. Compared to this pain issue, those are soooo secondary.

Please don’t tell me to try this exercise or that therapy or meditate or pray or try yoga etc. I’ve done all that. Remember, it’s been almost 17 years now that I’ve been dealing with this. And it’s been almost 17 years that I’ve been misdiagnosed by doctors. I have FIVE pages of “interventions I have tried…and yes, I have seen a Shaman and had my Chakras cleaned. And had prolotherapy…I just know someone wanted to throw that one out there.

Most people are “new” to the chronic pain community…they have suffered only a few months or a few years. I’ve lost who I was  – my life, my career, my motivation, my friends – all because of being a person in chronic pain. Try 17 years of pain….multiple surgeries….countless treatments…and still being in pain.

And alone. No one wants to be friends with a person that has chronic health issues.

No one wants to help a person in chronic health issues,

[I’m not bringing up all the misdiagnoses that occurred since I was 12 years old…That’s a whole other set of stories for another time.]

My point writing this blog entry?

To illustrate that all the good intentions, the finding of promising research, and having a great PCP, really doesn’t make a difference when there is absolutely nothing out there, short of suicide, that’s going to take away this pain.

Those of you with chronic illnesses know that finding a support system is not easy. I don’t have a support system. Literally – well, other than my husband, that can take me to an OCCASIONAL pain management appointment. Since he is not allowed to take days off from his job without repercussions, he can only do this on work holidays. This means that the treatments that I’m able to receive are few and far between, and not in line with the recommendations of the doctor.

Nope, and there’s not a single soul on the face of the planet, that has the time, inclination, ability, desire or compassion to help me get to these appointments that I desperately need to go to to get the help I need.

I know. I had the pleasure of being humiliated when I’ve asked and watched them struggle to come up with excuses as to why they “can’t.”

Perhaps is just because I live in Massachusetts, and that’s the way people are here – too busy and too self-involved to help anyone else that’s in need.

My suggested solution?

How about a service, something like “ZipCar,” in which  you can “rent” a “responsible person” to accompany you to these appointments and drive you safely home after your procedure????

Hmmm… I wonder if TaskRabbit offers a similar service…I know that works on a bidding system. …

[Yes, I know there are medical transport services available now, but they charge exorbitantly high prices (minimum $250 PLUS mileage!!!!), and that is not exactly budget-friendly someone on disability.]

Ideally, some altruistic person or agency could open up a respite home for those in chronic pain like me. We could all be put together so we are no longer a burden, a hassle, an annoyance and/or exasperation to what family we have left. And, we would not annoy them when we can’t sleep through the pain that we are all in all night. We could all sit u together and try to distract each other from the pain we are in. (Like me, tonight.)

Oh, wait. That won’t work, either. This is Massachusetts. No such place like that could ever exist here. Never mind!! What was I thinking?

Ok, I’ll play the game. (Can’t put this on Facebook since I have so few individuals as friends, there wouldn’t get enough answers to make it worthwhile.)

Find the falsehood amongst the following four statements:

1. Delayed Onset Sleep Phase Disorder is often a lifelong condition, originating in childhood, and can be severe enough to cause a lifelong disability.

2. Lupus patients usually have nephrological complications if their body produces anti-double-stranedd DNA antibodies.

3. Autonomic nervous system disorders can be completely overcome if the origin of the disorder is identified.

4. Breast tissue can randomly grow anywhere along the “milk line,” from the armpits, down to the groin area.

*sources: Medscape, NCBI, Wikipedia, Mayo Clinic, Skyscape, surgical texts

I haven’t written much in awhile – I am dealing with a new condition, unrelated to my SI pain, that saps my energy and drops my blood pressure dangerously low. While laying in the hospital with this new issue – in front of me, on the information board in my room, was the all-too-familiar pain scale. You know the one – sad face =10 (“worst pain imaginable”) up to happy face = 0 (“no pain”). I began to really think about how pain clinics set up their patient to fail – fail to reach the impossible, lofty standards that are set by people that have never experienced a day of mind-numbing pain in their lives.

For example, the pain clinic I currently use (the one I blogged about previously where a med management nurse treated me in such a nasty and humiliating manner) has their own version of this pain scale. According to their scale, few people can EVER reach a 10. A 5 is “moderate pain that cannot be ignored for more than a few minutes.” A 3 is “distracting, but you get used to it.” Each scale step has a 2-line description of the experience you will have at that level. I have shared this pain scale with several medical professionals, many of whom also have pain-related practices. Their responses? “Unrealistic.” “Deviates from the industry norms quite a bit.” “What? No one likely to be a 10? Obviously a man wrote these that never gave birth.” These are responses from medical professionals, not patients.

By having a pain scale that is skewed from the industry standards, they are minimizing their patients experience of pain. By all estimates, they are lowering the level of pain being perceived by the patient by at least two steps. Minimizing pain is something women have historically dealt with – remember how menstrual cramps were “all in the head?” (If you are my age, maybe you do…) Undertreatment of pain is a national concern,See, TIME, 6/29/2011) for just one article – there are many. Why do they want to contribute to it?

All pain clinics give their patients “contracts” to sign. Most often, the contracts deal mainly with the exclusivity of the patient-prescriber relationship. The clinic wants the patient to sign the document stating they will not obtain prescriptions for pain medications from any other health care provider or facility. This is the clinic’s attempt to curtail “doctor shopping” by those idiots that ruin pain
management care for the rest of us. However, some clinics go even further with their contracts and ask their patients to do things which effectually set them up for failure. For example, this same clinc I referred to earlier, has a several page contract. Not only is the usual ant-doctor shopping language in it, but the following (paraphrased) items are as well:

1. actively pursue non-pharmacological ways of relieving pain such as ice heat, exercise, meditation, etc.
2. you MUST meet with a behavioral health counselor and follow their recommendations.
3. your condition MUST improve.
4. you must store your medications in a lockbox.
5. If you need to take medication for breakthrough medication, you MUST call your doctor first.

These may not seem bizarre at first, but if you have a condition that involves pain, then maybe you will see the crazy in them before I explain…

1. This isn’t bad advice, however, when you do all the “non-pharmacological” interventions for your pain before you choose your pain medicine (which, in most cases isn’t practical first of all), it takes hours. Then, when you are interrogated by the not-so-friendly med management nurse about how much time you spend thinking about and doing things for your pain – you are automatically SCREWED. For example, I wake up, in pain. These are the things I do to manage this pain: i do stretches for my psi as and hip flexors, attach my IF unit to my SI area and start the 1st cycle, grab an ice pack and strap it around my back, lie down with my meditation recordings for 30-60 minutes. Start my IF unit for a 2d cycle. Remove the IF pads, attach a Tiger Balm patch and/or a Flector patch to the area. Stretch again. Ice again. Get the idea??? So am I “obsessing” or am I following their directive? (Hint: I’ve been told I’m obsessing…you can’t win at this game they play!)

2. I’ve seen well over 20 “behavioral health counselors” in my 48 years. Sure, i’ll listen to see what they have to say, as I know the game – i have a degree in psychology and sociology, so I do keep an open mind that someone may offer up something new I haven’t seen or heard if before. In this case, nope. Saw two counselors. Surprise! I’m not an addict! (Figuring this out was the focus of the interrogations…sad). These places really have to stop assuming that the greater number of people they encounter will be drug-seekers and addicts. Even the TIME magazine article I referenced above included this quote from the Institute of Medicine’s report on pain in the U.S.,

“the majority of people with pain use their prescription drugs properly, are not a source of misuse, and should not be stigmatized or denied access because of the misdeeds or carelessness of others.”

3. REALLY? I’ll just imagine all those people with pain that will not ever go away chiming in here. The contract states if you don’t improve you can be removed from the program. How nice of them! Isn’t this place supposed to be “pain management?” I don’t remember seeing anything about “pain eradication.” What a warm, friendly, comforting feeling I get from this contract, don’t you? and these are only a few of the many clauses in their contract of joy! (Ok, enough sarcasm, Lori…)

4. This is in the contract to keep the medications out of the hands of potential thieves such as friends, family members and kids. I laughed OUT LOUD when I read this one in the office – a lock box?? What BETTER way to attract the attention of anyone – “hey, theres something valuable in here!” They even give you a listing where you can buy them – you’ve all seen these – the flimsy things they find in the abandoned storage lockers on the TV show, “Storage Wars?” Yuuuuup, for around $18 – $30 you can get a “lock box” in which you store all of your drugs, so anyone inclined to steal things of value, wherever you may keep it, will be gosh darn sure to grab that box first!! Have these people ever watched TV? Do they know how insanely easy it is to break open these boxes? Think about it just for a moment – you are a thug and you steal things – you see a lock box in a car, in someone”s house, wherever – do you take it???? OF COURSE!!!!!! (I’m a former police officer, so I know firsthand what criminals – or any opportunist -is likely to grab. But really, this one should be obvious to a 6 yr old!). The funniest part of this contract item was you had to bring it in to be “certified” by the nurse!

5. I showed my wonderful PCP this item in the contract. His response (paraphrased) was essentially, “if a patient of mine I’d that, they wouldn’t be my patient much longer.” I mean, how stupid do they think we are? If they don’t trust a patient to know when and how to take medicine, then they shouldn’t be prescribing it to them in the first place, a problem identified in a recent Medscape article addressing improper prescribing of pain medicines in the US.

I seems pretty clear to me that the problem with pain medications originates with the doctor that chooses to prescribe them to a questionable patient, not with a patient that needs pain control. Reform of prescribing guidelines needs to take place so the bony finger of criminalization is pointed at the prescriber, not the patient. There are plenty of screening tools (see, http://www.painEDU.org, for examples) doctors that lack intuition can use to cull out the drug-seekers from their patients in true distress.

Why do I go to this pain clinic? I was deemed “inappropriate” for their med management program, which is fine with me, as my PCP still prescribes my medications. He knows me and trusts me and that is paramount. The docs at this pain center are top notch – really. They have honed in on my pain generators in my SI and have reduced my pain (not completely, but some is better than none at all). It just angers me that the med management program here, as with other pain clinics I have visited and read about, continue to treat patients poorly and criminalize their pain, often because they don’t have a neat, easily diagnosable pain issue (like me!).

I could quote Medscape articles here as well that talk about the battle between treating patients and avoiding drug-seekers, but I won’t bore you (Plus, I cannot link them as Medscape is a subscription-only service, but its free!). This matter is currently trending amongst physicians in the US and Europe, which is a good thing, and I continue to follow it closely. Even though I hope to off opiate medication within the next several months, I will continue to use my experience to advocate for people with legitimate conditions that get treated as poorly as I have been treated, simply because we experience pain that the usual, non-drug treatment doesn’t seem to help.