What Would You Tell This Chronic Pain Patient?

What Would You Tell This Chronic Pain Patient?

(We’ve received many comments from readers of the National Pain Report about the need for advocacy. Some have been stories about their own challenges. Here’s one we thought you might find interesting)

Hi,

My name is Deborah Lynn Molitor and I live in Port Huron Michigan. I need Your help in knowing what to do because these little town Doctors keep saying my case is way too much for them to handle that I need to go to the City of Detroit? how do I go about that. Yes, I am very Sick and will list some things to help you give me some advice. I am ready to give up as I cannot even feed myself nor bathe myself. here are a few things below. My Days are Praying to get out of some Pain and the pain is to unbearable to even Live a somewhat normal Life and I know if I don’t do something I will Die from not being able to control these stress induced Seizures or my High Blood Pressure.

How do I find a Doctor that will help get me out of a Little bit of PAIN? I have a lot medically going on and my will to Live is giving out more and more Every Day. :(.

I have Spedo Tumor Ceberi and have had 37 shunt Revisions and I have been struggling with my health & PAIN most my life but two years ago I thought I was doing well,  but then it’s like it all came back with vengeance last year I started getting unbearable back and neck and leg pain so I went to my primary and she ordered a x ray and a Cat scan which revealed  Canal Stenosis, Spondylosis, Scoliosis &  Severe DDD and severe disk bulging all over my spine about 4 other spine diseases then my blood test come back WBW 18,000 and that has not changed so there looking for an auto immune or cancer?

It seems that every specialist I see has found something Life Threatening–Heart Failure, Kidney Failure and Liver Failure and the big one Lung Failure.

I have Pulmonary Hypertension and 75% of my Diaphragm is Paralyzed and My Pain is so bad in my neck, back and Head and legs and I can’t sleep and most of the time I pray to Die!!!

My Pain Doctor seems to think anything over 3 Percocet 10mg does not help.

I can’t go on like this can someone tell me what I can do??

My Symptoms are Head pain like out of this world and numbness , hard time speaking and memory, poor motor skills in my hands and arms and legs, there are so many so I typed Low Laying into google and bam there was all my symptoms under Chiari Malformation ??

Could someone PLEASE tell me who I can call to tell my story or get help.

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

newest oldest
Notify of
chiarichic81

you deserve to know the cause of your pain. if a mri of your brain shows that your cerebullar tonsils protrude whatever mm inferior to the foremam magmum ( i apologize about the spelling, having a few issues going on today) whatever the size or how low they can go, they can cause a lot of problems. because they fell out or escaped out of your skull and slipped into the spinal column. basically your brain made a break for it and its using your spine as its rope. there are few specialist out there. but just know, the surgery is not a cure.its the only treatment option. there is a doctor dr.bolognese in long island. he will talk with you via computer but its $300.00.
i hope this helps you. i cant even begin to know how you feel. but you arent alone. i have chiari malformation in 2012 my tonsils were 3mm. protudes means that they came out through that hole at the base of skull where the spine and brainstem meet. i was born with this, but 2018 after a head injury many many many symptoms started to plague me. i have 40+ now. i have the worse time trying to get mississippi doctors to listen to me but instead they ignore everything. why cause they dont have a clue how to treat it. which makes it easy to give up. its not only the pain that makes you feel bad, its being weak, tired ,depressed, not knowing what is going on with your body and no one willing to help. this is what adds to the pain. i cant tell you what to take or do to ease your pain. personally i hate weed and i use to abuse pills when i was younger. so im not good on advice in that area. but i read where others took vitamins like b12, c d iron etc. but ask a doctor first so that you dont cause further harm from vitamin overload.believe it or not, you can overdose on vitamins. just stay away from vitamin a. our body hates it. anyways. there are specialist in new york, maine, floida arizona california. but do your homework on finding the doctors. make sure they specialize in what is wrong with you.

Jeanette Kirkland

Do you have medical marijuana in your state? If yes you will get relief from your pain by using it. You will have to pay for it all your self as the health insurance company will not. Unfortunately the medical professionals are too scared of losing their license to practice to do no harm theses days. I am very sorry you have to endure this pain. This is why people are choosing to end their life rather than waiting for someone to help them. I just want to know how many people need to die before the government sees they have gone to far. I am not going to say hang in there. When you cannot take it anymore please have someone help you tell your story and send it to your representatives and tv stations. The only way we can get things to change is to be herd. I plan on doing this when my time comes. I urge everyone who suffers to do the same. Peace be with you.

Tabitha shileds

It’s common now for doctors to believe that there is a limit for opoid therapy , as if everyone is the same and there is no such thing as tolerance . It may be true there is a.limit but everyone’s limit is different ..for instance I did very well on 60 mg oxycodone plus 20 my of methadone but do to the opoid hysteria was out on 30 mg and 15 mg respectively. I do much worse now and my life has changed significantly, the other limit they don’t talk about is the lower limit , the point for some where it is pointless to take any thing due to the fact what is being taken doesn’t help at all. I .almost there . Although I will get significant relief almost immediately , I will only get relieve for a few hours , and do to not having enough meds have to choose periods where my pain must be allowed to cause suffering , which causes the next dose not to work as well and so one and so forth . Don’t get.me wrong , I am greatful to have.something but they have really screwed the pooch here , so.much uneeded suffering, so much time wasted now in bed ,.missing family get togethers . Life was truly liveable prior to the fake opoids crisis , sure their we problems but they went way over board . I’ve successfully been treated for 20 years and never once felt like sticking a needle in my arm , with our without meds being available . Far more die from.tobacco and alcohol everyday than properly prescibed opoids . It’s all about MMEs now which is total BS . There is no such thing as 30mg Oxycodone is the ceiling for everyone . Souch other stuff figures into it . I was stable for years on 60mg , pain under control almost all the time . Now it’s about half that and my pain under control 8to12 hours a day . Clearly there is a connection, clearly long term treatment has worked for me . A successful business married 28 years , a.25 year old son . Long term treatment works at the levels decided upon by the doctor and patient , not the government or Prop. Your only hope may be hospice or other

Timothy Moulder

To thoe of you recommending the Mayo Clinic, stop. They are a sick, perverse joke. Their “pain management” clinic is nothing but a drug rehab masquerading as pain management.

Instead of proven, scientifically sound methods (ie, meds) to treat pain, they put you through an insanely expensive detox clinic, followed up with group therapy and discredited 70’s mind-science quackery like bio-feedback.

The only medication they dispense is anti-depressants, like Cymbalta. No matter how much horrific pain you are in, they promise you will at least feel better about it. And maybe not kill yourself.

At least that’s how it was eight years ago when I looked into it. Maybe things have changed. But probably not – their “Mayo Protocol” gets thrown in your face wherever you go now.

A bunch of murderers, but since their victims kill themselves, hard to charge them with anything.

Deborah Molitor

To all of You who wrote to me 🙂 I have to admit something.. I was planning on joining my Family in Heaven until i seen ED Put my story up then to see all of You caring People gave me Hope and i want to thank You all from my Heart & Soul.. I am all over the place when i write is cuz i get no sleep and i am a nervous wreck and have NO ONE in my Life that can help.. My Living situation is a very bad one as i live with my Daughters ex Hubby to be and he is a drinker 🙁 i am falling apart and i wished i could add a attachments to upload my Mri & Cat scans and the rest of my health records and maybe i can upload them to the site where my bio to my book is?? http://bittersweetloveonfubar.blogspot.com/2012_10_01_archive.html .
DON PRUE..God Bless Your Heart as i cried when i read her post cuz i have no transportation and i do need a advocate in my area and Claudia said i need a Neurosurgeons who specializes in Chiari Malformation and here is also what she wrote Below…

( Dr. Feldman reviewed your imaging..you have significant pathology, explaining your complaints.
Please get out and support your rally so you can share your story with the media.
We have a great team in your are)

if anyone is willing to help me please email me at debbiemonsinger@gmail.com or Facebook Debbie Lynn Hall.

I Promise i will answer every one of You cuz Your partly why i am still here 🙂 I can’t Thank Ed Coghlan or You guys enough but i am still lost and i know i need someone to speak for me as i shut down cuz they will not let me have my nerve pills its either small dose pain meds with no nerve meds or nothing 🙁

Tracey

Hello,

Please check your insurance to see if they provide medical transportation. Call the number on back of your card. Most Medicaid’s do provide transportation to all doctor appointments with 2+ days notice. They also give ride home from hospital discharges.

Also contact your Area on aging, they usually provide assistance to prevent some one like you going to long term nursing homes.

Please tell us how it goes.

Best wishes!

Don Prue

Dear Debbie Nickels Heck MD:
You said “I probably sound harsh.” -ya think?! I would say more like callous and narrow minded. Your sarcasm and pomposity is insulting!
Some of us can’t travel because of pain, some can’t afford to travel and endure the financial burden that would entail.
I hope, as an MD, that your practice is not in pain management.
Shame on you!

Alan Edwards

Have someone contact a news station and newspaper. It is possible Google is correct.

Immediately find a prescribing doctor who is willing to immediately prescribe various opioids such as hydromorphone or morphine in combination with Toradol or Medrol. A nerve block is variable and may not be helpful. Percocet is not effective at such a dose and used for an extended time.

You need help from a compassionate doctor and advocate who are not fearful of state medical boards or the DEA or police. Opioids will work. And in your case a doctor should not hesitate to use morphine and other safe opioids. Prayers. These are difficult times for one to have Intractable pain with serious comorbidities.

Joe

Deborah, I agree with several who have encouraged getting an advocate to help present daily weekly monthly data. If you have a smartphone, there are a few free or relatively inexpensive programs to record your painful moment to moment experiences.
I know from personal experience from cervical DDD, Spinal Stenosis, Scoliosis, Lumbar disc-back, fm cf and as others note way to many challenges. Like you & others I have been through 240mg plus to the under 90 mg equivalent and less than dose.
Getting an advocate may help in ways none of us can know in when the truth comes out of the non opiate pain mgt approach. As others suggested, have your advocate, with your consent, gather every single note, test, treatment, surgeries and all consultations you have participated including before (if exist) your difficulties were noticeable.
Having this amount of information will make real to your current physician, treatment program and other personnel the seriousness of your situation and under treatment you have described in your post. I can only imagine that the suggestions are overwhelming to read and think to try. That is where an advocate can be an asset to you. If you do not have a phone capable, find a recording device and record this info for the advocate to put into forms.
Hope info helps and take what you need and eject the rest.
jt

Deborah Molitor

i know there are so many of us in this same Boat and i want to Thank all of You that wrote in as it means the World to me cuz i am a Widow and no family and I have no one to advocate for me and no transportation and live on Disability and i am on Medicaid and the Links You gave me i will use them. i wake up in Pain everyday as i know most Pain Patients probably do to and i have to set on the side of my bed crying in pain until i can get up to use the bathroom and when i am hungry it has to be something within 4 minutes or i drop to the ground in Pain. God Bless all of You and i will try to answer some of Your questions little by little as it is painful to type.

Susan

I live got all the back disease. Call an ambulance go to a hospital in Detroit. It seems strang that they have not given you PREDNISONE or tried it on the back. Have they done a sed rate?neurologist and an internal medicine MD. I hate to say this but you need to be in a nursing home. Call all the media stations to get them to come and tell your story. That’s what they do for a living. Call medicare,call the head of the Department of Health and Human services. Call the President. Take all the pills and records you have with you. Go to the largest hospital in Detroit. Get a friend to set up a go Fund Me an Account on Facebook. Tell everybody who will listen what is wrong with you and how much pain you Are in. Call me (901)237-2872. I have been down some large part of your road. You have to get to Detroit hospital.the MD will call in other meds as needed. They will help you. After all the govt has taken away their rights as much as they have yours. I’m a fighter. And I can tell you Are too. Pray all day every day. God is with you and He will see you through. Thank Him with every prayer. Get on your phone and look up the names of MD’s that qualify for each disorder that is part of your situation. Be patient with those who hep you say please and thank you for everything. Gratitude is like money in TheBank. Hold on to your sanity. God will see you through.

Francie Fergus

Why, why, WHY is this poor woman not receiving Fentanyl via pain patch or pump? I understand that not all spines can be operated on due to severe degeneration, and/or risk, but at the very least a consult with a neurosurgeon should have been part of the treatment plan along with a more rigorous pain reduction therapy. Percocet is what they give after a visit to the oral surgeon for pain after the removal of windom teeth-at least they did back when I had them done. That’s about ALL they’re good for!

michelle

I have chiari and I’m not a Dr however your symptoms sound just like mine including lots of diseases / diagnoses I alao have that are related. Im struggling too. I have been decompressed( brain & spinal surgery for chiari) i alsl have a syrinx on my c spine. I seriously recommend you grt a Dr at Cleveland clinic who is a neurosurgeon . also there are ” Angel flights” ( Google them) thst fly seriiusly ill people to Drs amd I know you sound like you’re in no shape to drive or even fly yourself to the clinic . i have a close perso al friend who had chiari surgery at the clinic who wss pleased with how they treated & cared for her..her family flew up with her because she was very ill. I had my surgery here in OKC but my nsg is not a chiari expert and if given the chance id prob choose an expert
Also there is the world srnold Chiari malformation Association who has an online support group – they are a wealth of info and resources as well ss ASAP ( American syringomyelia( syrinx , which a lot of Chiarians also end up having) Alliance project. I think it’s asap.org.
Also Google ” CHIARI INSTITUTE” and it’ll show you experts around the country to choose from- there may be one near you. I wish you the best. I csn relate to almost everything you said. The only thing keeping me alive barely is my children and family. I exist not live , im sgony24/7 and im on morphine bit have been force tapered and hsd 3/4 of my pain meds taken away ruining any possibility of quality of life. Can you try marijuana? Girl scout cookies strain helps me some but i only do it when i cant stand the pain any more bc I dont like how it snells snd makes me feel . i use it when in desperation and its almost instant relief.

I pray you find the medical help you need so badly. Writing to your local politicians is worth a try.
I have battled cancer for years but they will not treat until I pay an impossible amount. If they told me how much I would be responsible for before sadly I would not have treated. I have appealed to various cancer foundations but they claim all donations they get go into reaserch and development. Having hit a brick wall I now have a living will and transferred all assets into my wife’s account. I face a grim reality but have prepared best I can.
Sorry a have no more positive advise but I have done what I could and had to be met things in order.
I hope this country changes it’s attitude toward the elderly and disabled. I have to pray they do for my kids and grandkids sake .
My prayers.

Deborah Molitor

Jeanette French .. Thank You and God Bless You to Sweetheart. I have No Family left and after My Hubby died he was the last of my Family and all My Friends have passed away and it is just me renting a room and i am on Disability due to all the Surgeries of having shunt after Shunts put in. I get about 800.00 a Month and no transportation or i would be going to Detroit but have no idea of what kind of Doctor to call and my nerves are so bad i tighten up and have stress related Seizures and not having no one in my corner is just as hard as being in this unbearable pain. But seeing all Your comments feels good knowing someone cares so God Bless You all and i will answer more of You after i take a break cuz this hurts to type.i use to have the News ears due to some fatal News stories i was writing a book on.. Bittersweetloveonfubar october 2012…. Again Thank You all from the bottom of my Heart.

Deborah Molitor

Shara E1 i did finally get ahold of her and she is gonna try to help me 🙂 her and a Doctor put me on a call with them and i sent my MRI and 2 cat scans to her wow she is Wonderful and Thank You so much for writing back to me as i am at the end of my rope as i can’t take care of myself and i have No Family and no car so i can’t get back and forth to Detroit. My insurance is Medicaid/ meridian health plan.

Deborah J Toucheshawks

Seek palliative care which sounds very appropriate

Oh sweetheart, if you’re like a lot of us you don’t have transportation. If you do that’s wonderful but if not may I please suggest that you just start calling churches. Leave messages for them to call you back. When they do, tell them what’s wrong and that you need a ride please, that your life depends on it. So far you’ve received some excellent recommendations as to what to do. I pray with all my heart that God give you the strength to do this. If you need help ask the church members you talk to over the phone and just tell them everything. My heart goes out to you! You are in my prayers and will continue to be. May God grant you the miracles that you truly need and deserve! 🌹💖

Lisa

First off, I have most of the same conditions you do, and Im also in Michigan. Trust me when I tell you this, STAY in Michigan for your care, I’ve lived in other States and your chances for help are much better in Michigan. AVOID Dr Herbert Malinoff who works for U of M pain management, he will literally leave you in tears and laugh on his way out. I would stick with larger medical groups like U of M they usually have good patient relations and you can file formal complaints if need be. Its sad but a necessity when you are dealing with chronic pain, the abuse if prevalent. You may need to request to be put on Suboxone. Its not the best option but doctors dont seem to have a problem prescribing it and it is an opioid. I wish you the best of luck, for myself I have turned to CBD, yoga, inversion table and healthy eating to try to manage this myself, of course this is after losing my ability to work and everything I owned. Its sad what this war on pain patients has reduced so many of us to. I wish you the best of luck, stay strong.

David

I can truly sympathize more than you know. Now at the age of 63 and for the past 20 years plus I have been suffering with chronic pain issues that have not corrected the many spine structural issues after 4 back surgeries. Have built up quite the tolerance to the opioids over the years and with all the miss and disinformation I am only prescribed so much pain medication. Just enough to keep me from killing myself, but not enough to give me enough function to enjoy ANYTHING. Life so sucks I look forward to nothing. I KNOW THEY COULD TREAT THE PAIN AND GIVE ME SOME OF MY LIFE BACK. THEY PROVED THAT TO ME A COUPLE YEARS BACK WHEN I ENDED UP WITH A KIDNEY STONE AND THE PAIN MEDICATION I WAS GIVEN IN THE EMERGENCY ROOM TOOK MOST ALL OF MY PAIN ISSUES AND STILL HAD ALL MENTAL FACULTIES CARRYING ON CONVERSATIONS WITH MY WIFE, DOCTORS AND NURSES ALL THE WHILE.
Maddening to know our pain can be treated but they won’t give us the relief we should be receiving in this day and age.
I keep praying and believing for my miracle whether it is a medical breakthrough or a touch from God.
Hang in there Deborah. Don’t give up. You are now on my daily prayer list.
Sincerely,
David in Washington State

Kathleen

I can’t remember which site it is, either Airbnb or VRBO has a section on the site where you can look into getting a free donated rental – maybe that would help if you have to travel for care (assuming you can physically get there). It sounds like maybe it’s time for a new neuro work-up? Best of luck, I know it is a slow and frustrating process trying to get help and answers!

Sounds like you need to go to hospice. That is the only place if you qualify to get the treatment you need. Social Security will do nothing, I have called them on my own behalf. Insurance company even though it says they do not discriminate against disabilities they do so by lowering the dose and saying they give approval for that lower dose and if it qualifies under certain criteria. If that is not discriminating I don’t know what is. It’s the insurance companies & corporate buyouts of hospitals / Physicians offices are the ones running the show. Any more if you have more than one pain area your considered complex. Not just by one Physicians but by all Physicians that is their way of politely saying I do not want to deal with you. There are so many people they can write such similar desperate health issues that are going through the exact same thing no one to help them. My nephew being cerebral palsy totally disabled mentally & all has had to sit in the hospital still everyone else is seen and then pretty much ignored and had to go to other hospitals to see if they would see him. He keeps chronic UTIs with kidney stones & was bleeding profusely thru his genitals & finally at the 2nd hospital that did not ignore him they found out he also had a severe infection in stomach along with all these other issues. Physicians do not like multi complex unhealthy people. If you have a cold they can handle it. Good luck. There are so many stories like this it would be unbelievable if they all written in.

Shara El

I would suggest she try and find a pain advocate or lobbyist who could step up for her. There is a woman on Facebook named Claudia Merandi who can be contacted. She is doing great work for us folks who are struggling right now and may be able to help.

Jeanette French

HI, I am so sorry for what you are going through, Do you have ANYONE WHO CAN ADVOCATE FOR YOU, CAN THEY TAKE YOU TO A PLACE LIKE THE Mayo clinic or the Cleveland clinic. Do you have access to a place called The National Since and Pain Center near you, if not is there one close enough for someone to take you to, or even by ambulance. It sounds to me like you should be in a place that provides 24/7 care, like a assisted living place. I can relate to some of your issues about ADL’s I to have a hard time with them, but not to your degree. You need to find an advocate to help you get the care and help you need. https://advoconnection.com/ I am not sure what kind of insurance you have, or your financial status, but try to find yourself an advocate and maybe your insurance will cover one for you. Call your social services department at your docs office and the nearest hospital to you, ask them how you get the help you need. https://www.nahac.com/#!event-list
I am hoping that one of these sites can help you, or maybe give you the info you need.
https://www.consumerreports.org/cro/news/2008/05/how-to-find-a-good-patient-advocate/index.htm
https://www.patientadvocate.org/
Bless you, dont give up, keep fighting and contact your state leaders (congress/Senate), social services departments, and anyone who may have inof that can help you, any foundation that is out there that deals with your illness’s. I hope you find some help , also ask your friends, family to help you get started and find an advocate to help you. Ask anyone you know to help you.
http://www.oprah.com/health/health-advocacy-medical-help/all
https://www.npaf.org/
Also you more then qualify for home health care as well, you can get it even if it does not improve your health but sustains it and provides you with needed help with ADL’s.
https://valuesbasedpa.com/home/
If just one of my suggestions helps you I will be so glad, please keep fighting, every and each life has value. Bless you.

Vincent

This person needs a processional opinion and be reevaluated for a much more serios progression in which this person is suffering, 3 Percocet per 24 hours will no enable said person much if any quality of life and now in this day in age and the complex confusion, im afraid this person will suffer every day for the rest of life,

Stephan

Today in our American society the federal government along with the state and local government are “experimenting”, with the opioid situation. They know they can’t control it!
As you know the CDC is reassessing it’s guidelines. Your doctor’s are under extreme pressure from the government agencies. So as of January 27 2020 in my opinion there is only one solution. If you have a valid prescription for your medication there are other perfectly legal options for you to obtain the medication that you NEED!!!!! I said NEED right.

P.S all drug dealers in america will get what they deserve. Even if they are supported by the federal government.

Thank You

It’s Kerry again. I ran out of space so am addig a second post. It may seem impossible, yet often large medical centers have rooms for cheap for patients and families. Or look for a larger medical center near where you have family or friends. Open your heart and mind to possibilities. I never thought I would travel 550 miles for medical care. Yet that is what I had to do for a life worth living. My credit cards are maxed out. I have had to dip into my retirement. Thankfully for medical bills there is not a penalty. Besides that, if I didn’t get medical care from a top specialist I would have ended my life by now so when retirement age hit it wouldn’t matter. If that is not possible try GoFundMe or other money raising methods. Keep fighting!

Kerry

Hi Deborah,
Wow, my heart goes out to you. Here is my story, and some suggestions. I herniated the disc at C5-C6 in December 2010 taking care of my mother during hospice. I had moderate spinal cord compression and severe pressure on the nerves coming out of the neck on both sides. I told my doctor of the horrendous pain and she diagnosed me with depression. I was not depressed until I was a month out and couldn’t find a doctor that would take me seriously. Doctors in small towns often stick together. Finally I got an MRI which showed the real reason and surgery to remove the pressure off my spinal cord and the nerves that come out of it. The problem was discovered after surgery, that the nerve damage was permanent. I developed severe pain in my right arm and hand due to permanent spasms in my neck. It was especially bad at night so I would get very little sleep. My hand felt like it was in a fire. I couldn’t use my arm, and am right handed. Migraines were severe and daily. It felt like there was a knife at the base of my head plunged in. No local physician or procedure helped. Pain meds were about twice what you receive, yet still not effective. PLEASE do everything you can to get to Detroit. I know it seems impossible, yet find a way. I live in Redding, California which has almost 100,000 people yet there wasn’t any one with the expertise. UC San Francisco failed to make me better. A friend was moving to the Los Angeles area and I researched doctors there. I actually had a surgery by the doctor who invented the stabilization device the neurosurgeons put in my neck. The Center referred me to an even more amazing doctor. I struggled with suicidal ideation, and came very close. My life 7 years later is still sometimes a struggle and I have pain daily yet it is more manageable.
I take Kratom in addition to prescription medication. It helps the pain to be more controlled. I make my own capsules from the powder using a capsule maker.

Cindy too

Part 3 to Deborah –

In case you dont’ know — the CDC Guidelines are being rewritten. The problem is that their goal is to have that done by 2021. Red Lawhern and others are pushing for this to be done much faster, and Red is trying to get on the Board that’s doing the rewrite.

And Congress needs to hold hearings on that HHS Best Practices Report or else it’s just a piece of paper. I don’t remember how that’s going. Contact your federal Rep and Senators to push it and about the opioid problem in general. Most of them dont’ have a clue about our reality and believe the PROP hype that opioids and addiction are synonomous.

Also, recently I read an article about howundertreated pain itself can cause death. You sound like you could be in danger of that. Here’s the link so you can show this to your PM: https://www.practicalpainmanagement.com/sudden-unexpected-death-chronic-pain-patients.

Today’s Practical Pain Mgmt journal also has an article about pain and cardio disease, which may be relevant for you. It’s today’s cover story, entitled: Medication Management of Chronic Pain in Patients with Comorbid Cardiovascular Disease.

Best of luck.

Cindy too

Part 2 to Deborah –

Ask your pharmacists what local doctors prescribe higher doses of opioids. They should know b/c they are filling Rx’s from the various docs, and opiiod Rx’s require so much extra attention.

Do you know what the laws in your state are in terms of limits on opioid rx’s? Your doc or pharmacist should be able to guide you if you can’t find out yourself.

And, maybe contact the Mayo Clinic for a full workup since they’re known to diagnose and treat complex cases. I’ve been considering that myself, as I have many other issues besides my pain issue, and my list of medical problems seems to grow almost weekly.

If you can’t get any local relief, you may have to consider moving somewhere where there’s a better PM.

Also, there are groups like the American Chronic Pain Assn which may be able to give you info.

And the US Pain Foundation too, and they have online support groups which may help you to find local resources plus emotional support.

I subscribe to newsletters from all these groups, and from Pain News Network, and Practical Pain Management journal.

Also, if you google the prominent pain advocate Richard “Red” Lawhern who sometimes publishes here, you’ll find a bunch of hits incluidng orgs he’s a part of. He’s cofounder of ATIP (Alliance for the Treatment of Intractable Pain), and an editor of the above-mentioned Practical Pain Management journal, and on the American Council on Science and Health.

I’m sure you know that our biggest enemy is PROP, led by Andrew Kolodny, who wants to strictly limit access to opioids and who apparently cant distinguish legal vs illegal. Ignore anything you see by him.

see part 3

Cindy too

Deborah, I’m so sorry.

I can tell you that when I was on a forced taper last year that was at the level of percocet that you’re on — plus methadone — I considered suicide. That level simply was not enough and that was with methadone.

You clearly need a new pain manager or to get yours to wake up. But it may not be that your PM thinks more rx’s wont’ help. Instead he/she may be afraid of govt pressure if he/she gives you more, or different opioids.

I got my PM to re-up my dosage last spring to almost the original dosage after 3 major events which occurred last spring:

1. the FDA statement came out,

2. the Final Report of the HHS Pain Management Best Practices Inter-Agency Task Force was issued,

3. the CDC Guideline author statement.

All 3 of these came out at about the same time, stating that there must be an individual approach to pain and not a one-size-fits-all, and the CDC authors stated that the Guidelines have been misinterpreted and misapplied.

Also, the AMA has long stated that the CDC guidelines were wrong, etc.

I brought copies of NPR columns about these statements/report to my PM in case he wasn’t aware.

See part 2 for more info

Jeanie Rhodes

You really are in need of a great healer/doctor/practitioner. I, also, live in a rather remote area of Michigan, where the resources are limited. I can relate to much of what you describe. A very competent Pain Dr. could change your existence. I ended up going to the University of Michigan in Ann Arbor. If finances are a concern, contact the Michigan MDHH Michigan Department of Health and Human Services.

Fate whispers to the warrior “You cannot withstand the storm” and the warrior whispers back “I am the storm.”

Thank you for reaching out.

Anne Silverthorne

Deborah, you have my attention . You see, I have everything that you named and more. I’m very interested in what happens with your case. I’m getting the same rhetoric from my doctor as well. God bless you. I know that 3 Percocet a day is barely taking the edge off of your pain. Because that is what I am finally getting after begging my doctor for anything that would help me with my pain. I also know what begging God to bring me home is like. These things are literally killing us and the Politicians and our Doctors have no conscience about removing the only medications that give us any quality of life. I’m sure we will cross paths again. God bless.

Thomas Wayne Kidd

I would reccomend that you contact your State Medical Board.

Thomas Wayne Kidd

I certainly wish that I could help you. You are in my prayers. Praying that someone will help you soon. God bless and keep you.

Debbie Nickels Heck, MD

Go to an appropriate specialist in Detroit if that’s what’s been recommended. You’re NOT going to get the care you need in a small town hospital. WHY are you resisting going where you can get the care you need? It’s NOT going to magically come to you. You’ve been told where to go. You probably think I sound harsh but I’m not. I’m honest. DO IT!

Kitty Hicks

This person should be getting palliative treatment. If ever there was a candidate for palliative care Deborah certainly fits the criteria. If Deborah can’t get to a larger facility or a larger city with more options, I suggest that she take some information (articles, videos, etc) by Dr. Thomas Kline.
He will show/explain to your small town physician how to treat your pain without having to fear for himself, as any physician can give a patient Palliative Status.
But I worry for Deborah, because too many physicians have very closed minds these days and behave like sheep instead of the trained professionals that they are. I wish Deborah the best, and understand her frustration and desperation.

Hi Deborah, I’m so sorry to learn of your plight. I too suffer but from a rare and mysterious brain disease with severe symptoms that I’m sure you can relate to. Before my infliction I was an active registered patient advocate here in Washington DC where I learned how to access the resources that are available to patients like us. Sadly it appears your “country doctors” have not only thrown up their hands, they have let you down. It was their job to seek out specialists and make arrangements for their patients with special needs. It’s a sad commentary on the state of healthcare nowadays.

So I did some poking around to see what is available in your neck of the woods. Here are some links that may help you sort out the mess your PCP has left you in.

https://www.psychologytoday.com/us/groups/michigan
https://aaa1b.org
https://aaa1b.org/caregiver-resources/caregiver-support-groups/
There are dozens more….

Clearly this will take some time, but it will help keep you mentally occupied and distracted so please don’t give up. The more you reach out and network about your condition to support groups in your region, the greater the chances that someone with a warn heart will come to your aid. They may know of free patient services that will help with getting you to a specialist, providing rooming & transportation, etc.

Remember, you are never alone!

Thanks Ed for posting Deborah’s plight. You should start a column… call it; HELP!… I’M REACHING OUT! where readers and patients can openly connect with one another.

Kindest regards
Dennis

Angie Heavner

I would get a genetic specialist and have them run genetic tests also I would look into seeing neurologist or Muscular Dystrophy Association. Some of what you are describing sounds like a combo of disorders. Definitely one is Chairi Malformation. There may also be a connective tissue disorder going on or a muscular dystrophy as both can be similar. Genetics, neurology and the MDA clinics can get the ball rolling and get the tests and proper treatment and hopefully pain management under control.
MDA also has alot of other resources to help, including rides to and from appts, shopping, meds, and daily living. Also contact your local Department of Rehabilitation Services for assistance. They are there to help people with disabilities. Hope this helps some and good luck.

Gail Honadle

”DEATH WITH DIGNITY LAWS” IS JUST WHAT YOU’D BE OFFERED, SAME AS HITLER DID TO EVERY COUNTRY HE CONQUERED. PATIENTS LIKE US ARE A DRAIN ON MEDICAL AND THEY DON’T WANT TO TREAT COMPLICATED PATIENTS. I live close to a big city and the SPECIALIST DON’T KNOW HOW TO TREAT US ANYMORE THAN YOUR SMALL TOWN DOCTORS.

Gail Honadle

The new medical answer for complicated patients like you or I is “DEATH WITH DIGNITY” EUTHANASIA LAWS. WE CAN KILL YOU CHEAPER THAN TREAT YOU. CANADA DOES. IT’S JUST THE SAME AS HITLER BELIEVED AND CARRIED OUT ON MILLIONS BESIDES THE HOLOCAUST VICTIMS

LORETTA HOLSCHER

Start with the Mayo Clinic for expert advice and treatment as soon as possible. You have my prayers and sympathy. I have not been able to sit without pain for 8 years, I have just a glimmer of your suffering. May you be peaceful.

Linda Olds

I don’t know what the laws are in Michigan about pain meds. However, it doesn’t seem right that a pain management doctor would limit you to 3 Percocet 10mg per day.
Can you get to a different pain management clinic? It would be difficult for you to go a long distance, but worth it if they can do more for you.

Steven

Deborah I will try, First I heard you me tion prayer. Good most important is to ask Jesus to come into your heart. See if a doctor will help but sadly in this country if you are more than 90 mme sick few will help. I am over that sick also so time is short. My doc says opiates or others. Mj ect. You chose. It is what it is a genocide but with Jesus your reward will be great. You have many problems so stick to the working on the worst first. See if family will help. Be honest but not too much talk morbid or you lose them too. Some of us are alone. Spouse ran off. Blood kin hangs by a thread. When all earthly hope is lost know you have something so much better. Lastly forgive the doctors who have been forced to this killing the paitient. Have empathy, this is not what they wanted and they all know you cannot make pain your friend. It is a lie and all that they have to tell you. Jesus has plans for them too. Love you sister. You won your race when it is time. Steven

Terri Wetz

If at all possible, see if your Dr can get an appointment for you with The Cleveland Clinic. I mapquested it and it’s a 3 1/2 hour drive from your town. You didn’t mention what kind of medical insurance you have but most do provide in-home care to one degree or another.

WILSON H HULLEY

doj problems.

WILSON H HULLEY

HANG IN THERE. I Acquired whole body RSD in 1991……..i had a great md until he retired. today, my only rsd md is near atlanta, ga or 10 miles south of nycity… i don’t drive and amtrak has problems with certified and licensed assistance dogs. getting to amtrak at our union station is nearly impossible..as 99% of taxi drivers are scared of dogs and will refuse to take you to your site. our doj frankly “does not give a damn” we have a doj that is so far south of reality that they are worthless……thank you donald trump for giving us a junk yard dog…doj.

Jen

With nothing being done that has changed “anything” with one exception “not to rapidly reduce opiate therapy”. File a state medical board complaint and request hospice care. Those are the only legal things I would know to do. I would write a letter and ask someone (if patient has anyone) to make sure my death was not in vain and have them have a witness of giving medical records to medical examiner when/if I died. I personally just requested my records from PCP so if I have a heart attack or stroke (which I am in risk of every day), I do NOT want is to be a number stating cause of death due to opiate therapy simply because they can… though that`s likely what will happen regardless of what medical records say and forced to take NSAIDS, at present time.
Fighting for your life by yourself “should” be so far beyond acceptable…. after years of the form of advocating that has just been repeated over and over.

Harley

Dear DEBORAH, call WILLIAM BEAUMONT HOSPITAL in ROYAL OAk they well refer you 2 doctor that can possibly help you… they have some of the best doctors in the world there… they have saved my life twice now… sadly I was in an auto accident almost 12 years ago and as you know Michigan is a no-fault auto insurance State and believe me I have been left to deteriorate all because the auto insurance companies do not want to pay.. so I feel your frustration I have been left with multiple issues from that MVA and one in particular is considered RARE and unfortunately not treatable in Michigan… there is hope… I will pray for you and call Beaumont I’ve been a patient there close to 30 years they’ve always taken the utmost excellent care of me I’m hoping they can help you 2 … God bless you Deborah and those of us that are left to suffer needlessly with chronic pain issues bless us all…🍀💜

dismay

First, do you have any intelligent support people in your life? You need to find out what your insurance will cover. AnMy guess is you need:1. inpatient eval. and pain stabilization without restrictions. 2. Once you get medical diagnoses including pain, you need to learn about available treatments that have a clinical effect in your case. 3. Some techniques such as yoga might help YOU. Yoga helps many people, as does meditation. I recommend Equi-sync for meditation b/c the sounds themselves elicit the brain wave patterns of an accomplished Buddhist monk. 4.You need to understand that your pain in the hospital will be less difficult to treat than on an outpatient basis; hence outpatient reassessment.
5. You need support at home. 6. You need a case manager you can communicate with via skype since there are no resources in your community.
You do not mention if you are married, with children – grown or dependent – or have other family members that can provide help. Since you need a great deal of help you need multiple caregivers with a variety of skills until your pain is covered, your medical condition clarified, a treatment plan developed as well as a strategy for complying with the treatment along with the most comprehensive satisfactory pain medication prescription of drug(s) and dosage(s) based upon efficacy on an outpatient basis.You can start that inpatient; but you also need outpatient assessment.
7.You need a support person with expertise is case management both in the insurance industry and health care fields. A GREAT PATIENT ADVOCATE WOULD BE THE FIRST RESOURCE I LOCATED IN YOUR SHOES. I would call (or have someone call) multiple hospitals within reach and simply ask to speak with a case manager. You assess potential patient advocates; who do you feel comfortable with? Who do you feel understands you and cares? Once you locate a solid professional you can contract with, then I would follow direction.
Good Luck,
Linda