Survey Shows Chronic Pain Community Wants Alternatives

Survey Shows Chronic Pain Community Wants Alternatives

By Ed Coghlan.

A new report commissioned by a neurostimulation company says members of the chronic pain community are grappling with how to manage their conditions under increased scrutiny from the federal government.

The report – entitled “Flipping the Script: Living with Chronic Pain amid the Opioid Crisis”— was commissioned by NeuroMetrix, a commercial stage neurostimulation and digital medicine company and creators of Quell Wearable Pain Relief Technology.

“The rise of the opioid epidemic has had a significant impact on those living with chronic pain, and oftentimes the voice of this population has gotten lost. We wanted to shine some light on the experiences of chronic pain sufferers with this research,” said Shai N. Gozani, Ph.D., M.D., president and CEO of NeuroMetrix. “These results underscore the need for more research and treatment modalities to support those living with chronic pain, as well as a joint effort among care providers, innovators, government stakeholders and patients to expand the goals of pain treatment. If we shift focus to making the end goal of pain treatment about decreasing suffering and disability rather than exclusively pain intensity, we may open ourselves to new possibilities and treatments that will empower those with chronic pain to find relief and gain greater control over their lives.”

Key report findings include:

The opioid epidemic has created an unfair stigma for those living with chronic pain. A majority of respondents (84 percent) believe a stigma exists, and as a result, 50 percent indicated they have lied or hidden their opioid use from others.

This stigma is affecting treatment of care. More than a third (34 percent) had to stop taking opioids because their doctor no longer prescribed them, and 42 percent stated the stigma of opioid use has impacted how they communicate with their doctor about their pain.

There’s a strong desire for alternatives to treat chronic pain. The most common reasons for those living with chronic pain to seek other treatments are because they don’t like the side effects of prescription medications (43 percent) and that they prefer to treat pain without prescription medication (39 percent).

There’s a fracture in the doctor-patient relationship. Fifty-nine percent of respondents said they don’t believe their doctor is completely informed about treatment options outside of prescription drugs. Only 15 percent said their doctor has proactively suggested looking into alternative treatments.

Individuals living with chronic pain are taking treatment into their own hands. Ninety percent of those living with chronic pain are actively seeking new treatment methods. When evaluating new treatments, respondents indicated that in addition to their doctor, feedback from friends and family (87 percent), online reviews (80 percent) and news coverage (73 percent) are increasingly influential sources.

The “one-size-fits-all” approach to treating chronic pain doesn’t work. Those with chronic pain use an average of two treatment methods regularly, and are comfortable trying new treatments, with 59 percent indicating they have tried new methods in the past year.

“There is no magic bullet for chronic pain, and people often have to employ multiple different therapies to achieve some relief,” says Nicole Hemmenway, \ CEO of U.S. Pain Foundation. “Unfortunately, many patients find their options for relief are limited by affordability and accessibility. We need to do more to encourage insurers to provide better coverage to safe, alternative pain management approaches, like wearable devices.”

Follow on Twitter

@natpainreport

@edcoghlan

@us_pain

Subscribe to our blog via email

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Authored by: Ed Coghlan

21
Leave a Reply

2000
21 Comment threads
0 Thread replies
0 Followers
 
Most reacted comment
Hottest comment thread
20 Comment authors
  Subscribe  
newest oldest
Notify of
Anne E McNamara

All sides of the opioid “crisis”” are calling for “alternative” treatments for chronic pain. It makes me laugh to even consider that Medicare/Medicaid or other insurers are ever going to want to pay for these treatments such as relaxation or acupuncture. They don’t want to pay for many common medications now and the alternative treatments are very expensive and usually not given by a medical professional.

Grow up.

Granny

Between a rock and a bone crushing hard place… that is where most of us are.

Due to an insurance issue a couple years ago, I was told to find a new pain clinic. It was going to take 3 months for me to be seen at the new clinic. Having no meds, no options, I tried medical mj .. edibles. I have RSD in both feet/legs and one arm, and the pain (at the top of the McGill pain scale) is relentless; sleep is nonexistent. Dosing with edibles was very.difficult to get right; people at dispensaries were almost no help .. they often remarked how odd I was because i treated mj like medicine and wanted just enough for my pain relief, not enough to be loopy…

My advice is to always err on the side of taking less, not more edibles. Much easier to have a bit more a few hours later than to.go on a wicked trip you have to just wait out.

What I found was that Indica did help me to fall asleep and stay asleep better than any scrip, hands down. Unfortunately, medical mj was a vasodilator .. it made me feel so warm and cozy when it was in.my system (very unusual feelings with cold RSD), but when.it wore off, the rebound pain as everything constricted again was unholy excruciating! …many times worse than the ‘normal’ 7-9/10 pain I was used to…

It was impossible to stay on medicalmj 24×7 .. it didnt give me munchies, rather the opposite .. i lost almost 30lbs in 3 weeks… and it took longer and longer to wear.off each day during my.short period of use.

My insurance worked out their issue with my original pain doc, so I returned to them and they were crystal clear .. if I used medical mj they would not treat me, so i went back to my original pain mgt regimen .. not perfect by any.means, but better for my.pain than only having medical mj.

Each person has their own experience, and what works for one may.not work for another. It is truly unfortunate that we are forced to.choose one to the exclusion.of the other because the *best* answer is probably a combination of scrips and mmj.

All the best to each of you in your journey to find sleep.and pain.control….

Jeff

What is very upsetting is how entities out there are taking away the profession away from the professionals. My pain management doctor has 25+ years of experience. Up until about 9 months ago my treatment of care was sufficient to the extent that I had some ability to participate in life, being a husband and a father to my family. I am not a junkie and I do not abuse my prescriptions. Also, over 3 years ago I took myself of pain medication for 6 months, because I wanted to explore other alternatives. All of which did nothing to relieve my pain and did nothing to relieve the pain intensity. I know current pain medication and/or therapies may not cure my situation and conditions. However, I would like to live a life participating with my family, out of my bed. I’m 43 year old male with a wife and 3 sons , 14,12,and 10. Im also a professional engineer who currently is unable to work due to chronic pain. I now miss out on life due to insufficient treatment. It’s not my doctor’s fault. She’s told me why she’s had to reduce and eliminate some of my medications. I’ve spent thousands of dollars on hospitals, chiropractic medicine, Ketamine infusion therapy, acupuncture, massage therapy, even psychosomatic therapy, gene studies, and many other medications other than opioids. The best treatment so far that has given me any minimal relief has included opioids. I’m very upset how this situation has been executed, taking away from patients with no real world replacements. And I absolutely agree with some of the other people here, until you live with chronic pain, not short term trauma or acute pain, you will never understand what chronic pain really is. You will not be able to grasp the struggle of daily life and the emotional toll it takes on not just yourself but the toll in takes on the people around you.

De-Ann Maurice

I don’t want to die, I just don’t want to live so technically incorrect. DM> to everyone who tried.. and those who walked away.

Patricia May

I am blessed to have met a friend who was just finishing massage school and only charged $25 a session. The people on my bowling league (yeah, bowling, back when I didn’t have to reduce and carefully count my pain meds and just led a pretty good life) saw how I was no longer walking bent in half and my guy got a lot more business. He now charges $60/hr and has more clients than he can handle. This motivated my son to go to massage/holistic healing school. He gives me massages that have saved me since I had to cut my opiates in half (can’t take NSAIDS, in kidney failure). Since my back surgery (fail—now I need a fusion), quality of live would be so dim without his massages. I believe I do have FIbromyalgia and massage is the best thing for that. I am also yelling at my doctors to keep me going to physical therapy, For me it helps my pain a lot. (well, except my lower back), I keep working to get my core stronger.

My point, why won’t medicare cover massage? Why won’t medicare cover acupuncture for my migraines? Why did Medicare only cover 18 physical therapy sessions after my last back surgery? When I had workers comp, I had almost 6months of physical therapy for a broken ankle (bolts plate, screws)….Does not compute. If you are living on disability you can’t afford to treat your pain. I find myself having days where my husband gets upset because I just sit in my bed all day. If I hold still I won’t have a headache. If I hold still my body hurts. So which pain do I want to deal with? Move around and here comes my headache, or hold still and all of me starts hurting,

Thank you Ed for all your hard work on this site. The thought of not being alone does help.

Rachel

TERRY cannabis changed my life. I was able to stop having a carer for 7 hours a day. I’m lucky my doctor advises it and here in the UK he is free to also prescribe the pain meds I need. However cannabis for pain is illegal here so I have to get it unlawfully. I found that medical cannabis ie CBD only does not work for chronic pain and a study from Glasgow Uni Med School backs this: we need the THC which is the stuff that makes you stoned. You may find that if you use cannabis you can stay on your current dose of pain meds. The trouble with cannabis is this: one cannot function or drive when stoned so I keep it for use at night only, it only,lasts two hours. It gives me the mischief so I have gained weight (which worsens pain) but it may not give you the munchies. Re drug testing there are ways to stop it snowing in your Jerome involving taking a large dose of vitamin B but Imforhet the details. I’m sure you can find them online. In addition blood tests are not reliable after the first couple of hours since you last ingested so you could research that also. Good luck. I am so sorry for,what is happening for you guys in the US it is a Human Rights Abuse.

Rachel

TAMARA, I have had the foot surgery you describe. It was successful and you are I think worrying unnecessarily. I was on higher narcotics than you and apart from the two hours in recovery room it took for them to control my pain which they did with opioids and ketamine, the hospital had an acute pain team who were very understanding and managed my pain well. Intitially I tried a morphine pump but that was insufficient so they altered my pain relief regime with a little ketamine for a few days plus gabapentin and a higher dose of opioids which incidentally was a lot lower than I now take daily owing to years of medical abuse unconnected with that hospital. If you have a pain doctor have him or failing that your primary care doctor write a letter explaining your pain will go up with surgery and during the recovery period and it is important it is well controlled. Research your foot surgeon and ensure s/he is good because that is the most important thing. What is their reputation? How many of these surgeries have they done? I was fortunate that although living in a rural backwater the local surgeon was the best one in the UK!
Also consider how you are going to manage in the recovery period: your foot will be in plaster for many weeks. Can you use crutches? If not get a Physio assessment and they will ensure you have a wheelchair and extra help at home. For me I had to spend an extra two weeks in hospital. Then I was lucky enough to have a friend who lent me an electric wheelchair. Once mobile again take your rehab exercise slowly. I rushed to walk too much and ended up with bursitis in both hips! Good luck.

Jenifer

I was so excited when I first saw Quell. Then I realized it is a portable tens unit. I think many have tried this type of “alternative pain relief”. I paid $400 out of pocket for a Tens unit-Which I believe is pretty much the same thing as the Quell. I hope they make it obvious they are the same technology is just in a different form. I have searched for 14 years and tried Everything I could find. A combination of several medications is what my doctor and I finally decided on.
If there something new I’m willing to try it. Sadly Quell is NOT something new.

Tamara L Bradshaw

Iv had 4 back surgery s + been on narcotics for 14 years. They if corse stoppex working + i could stsnd the pain. I asked to have a stim . Because ic that worked i could decreaze my pain meds. I fear as my pain is getting worse i would want to die the stim helped + i cut down from 240 mg methedone to 60 a day pain has gotten worse in feet so xr lowered the wires to see if it could help. Failed. I wanted to die with the cold winter + ner e pain. I take ibuprofen 3xs day with nar otics ixe elecate therapy no reults + i need a triple fusion in feet tendon tra fer + don’t know what I’ll do for post surgical pain because I’m already on morphine + methadone + it doesn’t touch my pain. I had pt injections before taking pain pills. My nerve pI. Has progressed over the years with my pain so what would i do?

Steven S wolinski

I have dealt with chronic pain for over 20yrs now.I have had 13 spinal surgeries and am fused from C2-T4 and from T-8-S1 so litterally my whole spine is been fused over all these years and surgeries.Someone who has never expirenced nerve pain they have no idea what so ever what we go thru.After years on narcotic pills I could see the writing on the wall what was going to happen so 2yrs ago I had a pain pump installed.This has actually been the best thing I have done.The pump has actually helped me feel better and do more the last year then I have for the last 5yrs.I would do things and I would be laid up for 3-5 days now the samethings that did that even though i may feel bad within 24hrs I feel better.Also the pump doesnt have me in a haze that the high level of narcotics that had me on did.I would reccomend anyone that has the means to get one to do so.There is not going to be anything good happening with pain manegnent now that the government is playing Doctor.

Maureen M.

This a post that tells us what we already know. And the Excellent remarks below once again show that we, who have long time chronic intractable or centralized pain, have tried it all. Perfectly said Alan!
It is, unfortunately, our meds which help best. All other modalities ‘might’ assist at times, yet they do not ultimately help us obtain proper relief, whatsoever.
I continue to spend a fortune on other modalities, while on meds, in hope that I can find a better way. But, they just don’t help much. I won’t give up but I know my body well and what works best! We need to keep our medications.

From my perspective, preventative measures to reduce iatrogenic harm should be among the list of alternatives. Recent studies along with many outspoken doctors (Dr. Martin Makary of John’s Hopkins, Dr. Jana Friedly of U.Wash. Medical Center, etc) have clearly pointed to a medical industry that has literally run amok as they aggressively push for needless but lucrative surgeries and complex procedures that leaves an ever increasing path of pain and destruction in their wake.

Until recently, opiate regiments were the official fall-back for these botched medical procedures by doctors who were in denial about what they had just done. So they would routinely prescribe heavy dosages while crossing their fingers with their patient outcome. That’s all about to end. What will they do now? They’re not going to slow down their $urgical $chedule, no way!

So they decided to push Congress to allow them to use Epidural Steroid Injection therapies (a high risk and low efficacy invasive procedure) as their NEW FALL-BACK to botched surgeries in lieu of opioids. (Look up Congressional Bill H.R. 5804: Post-Surgical Injections as an Opioid Alternative Act)

My fear is that this will create an even greater problem as ESI’s continue to fall from favor due to their low efficacy and high risk status. Pfizer, the makers of the most popular steroid Depo-Medrol® (Methylprednisolone Acetate) is now asking the FDA to Contraindicate (ban) their product for epidural use (at all levels) due to increasing reports of severe harm and death. Pfizer is also asking for a “MUST-NOT USE via the epidural route” Black-Box warning as well. In 2014, the FDA’s own AADPAC advisory panel voted 15-7 to Contraindicate ESI’s at the C level, and as early as 1988, Upjohn (the originators of Depo-Medrol®) have been asking the FDA to alert the medical community to the dangers of this unapproved procedure, and to modify the label to warn of these severe medical conditions.

Sadly, the FDA has repeatedly rejected these and other numerous calls to save people from harm and death, (citing “Wall Street” concerns) and in this advocates opinion, they need to held accountable.

God help us all if H.R.5804 passes.

A. MacKenzie

Chronic pain sufferers must INSIST on being allowed to continue to take LEGAL opioids specifically designed to REDUCE PAIN! There is NOTHING wrong with that and we should not be coerced into thinking that there is. Most of us (probably all) have tried everything possible to reduce pain and return to some semblance of a normal life before being prescribed an opioid – only to find that nothing else works as effectively. Granted, alternative treatments should also be used to help manage our respective conditions, but we must INSIST that opioids continue to be available to those who need them. They are the ONLY thing that gives me reliable relief from the pain and stiffness of fibromyalgia and allow me to exercise and to live relatively normally. Why should we be required to go backward instead of forward? Medical science has, by the grace of God, allowed us this relief and we should never give in to those who would deny it to us.

nana

This is twisted logic at its worst by someone wanting to make money off patient’s pain. (not your article but the research author)

Have we all tried other methods (than using pain meds?) Sure.

When asked questions in surveys do we couch answers dependent on whether pain relief will be taken away? Yes. Sure. “..Is your pain GONE ALL AWAY the way I am treating you? “Not completely.. but surveys don’t have but a box for yes or no. So no. But in the grand scheme of things it brings the pain to a level I can tolerate.”

I think that is the reason so many researchers/doctors etc. think (OPIOID) pain relief doesn’t work in many cases. Surveys. Filled out by naive patients. (or research victims paid to take them who do not live with chronic pain.)

Do we search out other methods of pain relief? Yes. We do. But we need a supply of quick pain relief for those times when we are all out of options and hurt too bad to spend an hour doing yoga. It is patently unfair to refuse chemical pain relief when it is available.

Would I get a ..something.. embedded in my back for pain relief? Oh hale no.

I met a gal once who had a unit embedded in her back and she warned me of the ADDED pain, number of attempts to embed it right, infections, pain of this unit..

Since then I ask about the efficacy of peoples units and get mainly the same answers: Don’t do it.

But do I have pain? Yes and so badly it causes incontinence. Spasms that cause me to lose it in public. Pain that bad when something can stop it before it happens is inhumane. I shouldn’t have to go through that. I have shopping to do.

Rochelle

As a chronic pain patient going into my 26th year battling CRPS/RSD, I had all of the minimally invasive procedures done prior to being placed on a medication only regimen. I had 3 SCS, 2 pain pumps, lumbar sympathetic blocks, chemical sympathectomy X 2, one surgical sympathectomy, temporary epidural catheters X 2 and 20 years later can barely move due to the damage to my spine from these alternative treatment modalities that are openly advertised as minimally invasive, hah!

I do not believe the SCS nor pain pumps were tested long enough in clinical trials. I am in an rsd support group and 2 different members, unrelated and independent of each other got the same results when asking specific questions and you know what the long term success rate with zero problems was? 5%, that’s it, only five percent with no problems. Obviously it’s not scientific but thousands of people were asked and in those who did respond, the results were abysmal. These companies need to find less invasive ways to treat pain other than running wires and leads into very sensitive spinal nerves. My first and third SCS did work but I had problems with both and with the third one, necrosis had developed three weeks post implant in the surgical pocket made to hold the receiver requiring removal of the whole system, not worth the grief.

Terry

There’s another problem I’m running across. My opioid pain meds have been drastically reduced like a lot of other people. I want to try cannabis and I have an appointment with a doctor to get my cannabis card. The problem is, if I tell my pain doctor that I saw a doctor to get a medical marijuana card, he will drop me cold. What if the marijuana doesn’t help and my pain doctor cuts me off? Then I’m really screwed. The whole system is set up against the chronic pain patients. What if I don’t tell him about the marijuana and it shows up in a random urine test? Which it most surely will. I have an appointment with the cannabis doctor next week and I just don’t know what to do. If I knew for sure that cannabis would reduce my pain, I wouldn’t think twice about it. Nothing is certain anymore except one thing, I am a 60 year old man with widespread, chronic pain that can’t be treated, thanks to over zealous, beaurocratic, tiyrants. Now a life that has been previously well lived, chronic pain in check, a reason to get up each morning and look forward to the day ahead is all gone for no damn reason whatsoever. It’s starting to feel like a third world country with a brutish dictator on the throne. I have always been a positive person, very hopeful for my future and now like so many others, I am just hopeless and depressed. I already take meds for anxiety and depression. If anyone has any ideas, I’m all ears. If I find a solution this will be the first place I will post the news. God bless my chronic pain brothers and sisters. Blogging seems to help with my mood and I temporarily feel a surge of energy and satisfactio, but alas it is short lived. Take good care and keep fighting the good fight!!!

Alan Edwards

Pain management is about decreasing the intensity of pain. Different approaches have been utilized for many millenia. The study was funded by a product manufacturer. I would try it. But has it been held up by the government acronyms and what is the efficacy and cost? Many people, millions, don’t know what intractable pain is or how centralized pain begins. I mentioned to a girlfriend that I was had chronic pain. She said she had never experienced it. If a wristband, massage, gall, laudnum, aspirin, physical therapy and TENS are affordable and make a difference, great! But things are moving too slowly and getting pain intensity down is necessary.s Most working, thriving Americans have no idea about the nature or intensity of chronic pain. Once centralized pain begins, the pain disease patient is nearly past effective treatment. The current medical establishment doesn’t care about chronic pain sufferers save for a few Christian practitioners. But I am supportive of any effective treatment which can lower pain intensity and disability including an effective opioid- the absolute standard for efficacy and safety. Not politically correct, but absolutely true.

Rita KIMBEL

Good information, we have to try opening our minds and see what’s available other than opiates. I have a neuro-stimulator and it’s been a major part of my pain management, but due to the level of pain I still need the Opiate and my doctor and I want to work with medical marijuana to possibly limit the millegrams of the Opiate. So I’m on the road to trying new and waiting for more options since the pain won’t ever end for me.

Tabitha

Why do we keep saying “opiod epedemic” there is no opioid epidemic. This is politics and politicians looking for headlines. The problem is heroin period . The amount of overdoses in this nation is far down on the list as it relates to why people die from abusing themselves and deaths from people on pills is far far far low on the list. People legally prescribed opioids are not overdosing heroin addicts are .

Chronic pain patients protection act NOW

Brett Husebye

Those with no hope need hope. Many of us vehemently would have said no do not take our meds away given a choice. Many of us lost our mobility, livelihood and worse lives. If we do not have relief from this curse our lives have been spent. We lie about like couch cushions moaning., groaniing crying for help. I wont even get started on our Government who drummed this up to save money for Medicare and the Insurance Lobby. Fake news and the sensationalism of real news has beaten us. Any sane person can look at the 90 milligram equivilent chart and see that it is about money. It is not hard, look at it and see what meds they have denied then look at what addicts get for their pain. Yet they pay cash for. Yes all about money. One last thing after our meds were beat down to 1/3rd the wonderful people at Aetna decided to scream preauth in our face, it takes each doctor’s practice 1 hour to do a preauth. Where do you get 500 extra hours in your practice? You dont and i ended up paying cash that month. They made people in Michigan sign something that says the doctor and myself dont know what we are doing and presribing the meds could cause suicide. No, under prescribing medication when your in pain can cause suicide. Just keep blasting us with nonsense. Anuone with common sense is tired of repeated Republican money grabs at every agency in the Government. All on the take. This is entirely my opinion.

arlene webb

I’ve tried everything from physical therapy to massage and nothing helps my pain