Gather round MSers who are on pain management wherever you are

[palmtree]

This is about the heroin epidemic. Ive never met anyone on heroin and wouldn’t have a clue where to find one but this is about MS.

Shortly after I was diagnosed I was sent to pain management.
This was a group of real pain management doctors, anesthesiologists board certified in pain management. They helped we so much. The medications they prescribed me not only helped me with the pain in made it a lot easier to live with MS and even prevented depression.

When I would read about other people with MS around the country suffering with pain it would make me so sad. Now I’m sad. Now pain relief is available only to those who fit a very narrow criteria. MS does not seem to fit into the criteria even though pain has been officially recognized as an MS symptom from the National Multiple Sclerosis Society.

If there is anyone else in this situation please make your voices known. I called the DEA today and they reassured me that patients who have been stable on pain management for an extended period of time have a right to continued treatment.

Many feel like we don’t have any rights but I believe if we calmly make our voices heard through letters to congress, the DEA, the CDC, the State Medical Board and any other entity you can, I think of there is hope.

I would also like to hear what in happening in countries outside the US.

PS: if you believe all narcotics should be expelled from our country you need not respond.

[Jules A]

I don't believe all narcotics should be expelled from our country but I do believe putting people on opioids long term which have not been shown by any peer reviewed data to be effective for chronic pain treatment needs to be examined and thoughtfully considered.

My biggest concerns are the number of questionable pain management businesses, MAT for that matter also, and the fact that a number of pain management patients are also receiving benzodiazepines and/or sedative hypnotics which is a dangerous combination regardless of if it is "the only thing that works". I googled -pain management arrests- and while I'm sure not all are relevant hits there were About 16,600,000 results.

Fortunately or unfortunately depending on how you view things MS is not considered a fatal disease and most of us are not in palliative care or hospice therefore keeping patients alive and not dependent on medications that can cause more harm than benefits is crucial for ethical providers.

[rdmc]

This is about the heroin epidemic. Ive never met anyone on heroin and wouldn’t have a clue where to find one but this is about MS.

Shortly after I was diagnosed I was sent to pain management.
This was a group of real pain management doctors, anesthesiologists board certified in pain management. They helped we so much. The medications they prescribed me not only helped me with the pain in made it a lot easier to live with MS and even prevented depression.

When I would read about other people with MS around the country suffering with pain it would make me so sad. Now I’m sad. Now pain relief is available only to those who fit a very narrow criteria. MS does not seem to fit into the criteria even though pain has been officially recognized as an MS symptom from the National Multiple Sclerosis Society.

If there is anyone else in this situation please make your voices known. I called the DEA today and they reassured me that patients who have been stable on pain management for an extended period of time have a right to continued treatment.

Many feel like we don’t have any rights but I believe if we calmly make our voices heard through letters to congress, the DEA, the CDC, the State Medical Board and any other entity you can, I think of there is hope.

I would also like to hear what in happening in countries outside the US.

PS: if you believe all narcotics should be expelled from our country you need not respond.

I've been dealing with Pain Management doctors since the first of the year....and I haven't figured them out yet.

In 2017 I started having back pain, this was later diagnosed as neuromuscular scoliosis. Basically the MS has caused scoliosis, and it's progression has been at a daunting rate. So has my pain, and I sit in a chair or am in bed the entire day....I can manage to be standing or walking for about 10 minutes at a time, but that's it and I have to sit back down due to the pain.

The x-rays and MRI show that all the lower vertebrae are a mess and herniated. Surgery is the usual solution, but it's a grueling 2 day surgery, total of about 18 hours split between 2 days. Recovery and rehab is months, and that's if you're a person whose body works right. After checking online, I quickly realize I do not have the strength to rehab in the correct way. So that
was were Pain Management comes in. The neurosurgeons sent me to Pain Management.

So far it's involved just a lot of waiting and not much pain relief (in fact no pain meds have been
offered by pain management docs.) One pain management doc did an epidural and I had wonderful pain relief. So they scheduled me for a second a couple months later...the doctor said
all the spaces that had been open for her to inject the epidural had fused together, so she dismissed me as a patient because there was nothing else she could do.

Pain Management #2 wants to do Radiofrequency Ablation, so I'm going for that tomorrow, time will tell. The problem is, no one looks at the whole patient, and they treat me as a "normal" pain patient, and forget the MS and how it plays into it.

This week I realized that I haven't had an x-ray or MRI of the back since 1st of this year, and in the
previous six month the scoliosis curve had gone from 40 to 60 degrees. Who knows where it is now.

But my faith in Pain Management giving pain management has evaporated. If this ablation doesn't
work, my physiatrist is going to refer me to the University in hopes they'll be able to have something that actually lessens my pain.

The last I heard about pain meds they were considering the regimen where a pain patient would need to go to the doctor every 7 days to get an okay for meds, even lower end pain meds like Vicoden. Now it's 30 days between doctor visits in order to get a Rx for a pain med, even the ones that used to be labeled class #3 are now in class #2 meds meaning you must see the doctor in
person ever 30 days in order to get a script for a pain med, and they're only allowed to write a prescription for 30 days worth of the med. A couple of friends who use low dose pain med on occasion have been asked to give a urine test at their appointment. We can't quite figure why though. Do they want to know if you're taking the med (and if not, I guess they wonder if you're
selling them.) But someone like my friend who's intermittent in their usage, will have a hard time
if her appointment doesn't coincide with the time she's had to use it.)

Sorry for the rant...but when dealing with pain, you'd think there'd be a little more expediency than how they handle it now. It's like you said, they don't seem to even acknowledge the fact that we have pain.

[Jules A]

A couple of friends who use low dose pain med on occasion have been asked to give a urine test at their appointment. We can't quite figure why though. Do they want to know if you're taking the med (and if not, I guess they wonder if you're
selling them.) But someone like my friend who's intermittent in their usage, will have a hard time
if her appointment doesn't coincide with the time she's had to use it.)
.

Most likely testing for other substances that could interact and depress respirations which is the main concern. If they are testing to see if its in her system and it isn't the explanation that she is using only as needed will probably be fine but might result in them prescribing less than the 30 day supply. Unfortunately it isn't uncommon for these meds to be sold. I knew someone who was reportedly making over $2,000 a month in cash selling oxy.

[IntoDust]

As a patient in PM I feel that I am truly at the pain doctor's mercy. All I want is my life back, and if I can't have that I would at least like a semblance of it. I am angry that chronic pain patients are bearing the brunt of the newest "war on drugs" because we're easy pickings.

All we hear in the media is about opiate overdoses but what is not being conveyed is that these deaths are from either mixing medications and going into respiratory distress or from fentanyl laced drugs.

Heroin is being cut with fentanyl at the street level, the middle man level and the cartel level. Just a small amount of fentanyl can kill an opiate naive person but it doesn't take much to take down someone with a sky high tolerance to other opiates either. I've also read that heroin is being cut with carfentanil - which is an elephant tranquilizer that's 100 times more powerful than fentanyl!

In addition to heroin, cocaine is now being cut with fentanyl as well and people who don't even take opiate based drugs are overdosing. I have read a lot of stories about people who aren't even drug addicts, just very casual users, overdosing because they didn't know what was in their drugs. The problem is so bad that safe injection sites, clean needle exchanges and harm reduction groups are passing out fentanyl testing strips to drug users regularly.

But the DEA isn't going after the drug dealers, they're going after patients and doctors. While there have been a lot of shady doctors out there and countless pill mills that have been rightfully shut down, I feel that they're tackling this new epidemic from the wrong end. I'd like them to take heroin and fentanyl overdoses out of the statistics, as well as overdoses from those who also took benzodiazepines. If we did that I think we'd discover that we don't have a new chronic pain patient problem with overdosing. We have the same problems we've always had, they've just gotten too bad to ignore now that fentanyl is cut into everything.

[SNOOPY]

Multiple Sclerosis can cause different types of pain. Opioids are not a first line medication and typically does not help with the pain syndromes experienced with MS.

I have had MS for many, many years. I experience pain due to this disease, I also have pain unrelated to MS. I have used Opioids several different times due to injuries or surgeries. I have found Opioids helpful for the reason's they were prescribed. However, Opioids never touched the pain I experience from this disease, they simply made me not care about the MS pain.

Pain experienced with MS is treated differently than other types of pain.

For information about MS, the pain it causes and how to treat MS pain I have provided a link to Multiple Sclerosis Association of America and an article/link form MS Focus Magazine.

https://mymsaa.org/ms-information/symptoms/pain/

MS Focus Magazine:

Pain syndromes are common in patients with multiple sclerosis. Data suggests that approximately one-half of patients with multiple sclerosis experience chronic pain. It is important to understand that not all pain caused from multiple sclerosis can be treated with opioid medications.

• Neuropathic pain is the most commonly reported type of pain experienced by people with MS. It is caused from the demyelination of nerves that is the hallmark of multiple sclerosis. People describe neuropathic pain as burning, aching, or electric pain. Neuropathic pain primarily affects the legs and feet, but can also affect the trunk and arms. Data suggests that anticonvulsant medications and antidepressant medications are the best treatment for neuropathic pain. Opioid medications are not effective in treating neuropathic pain.

• Spasticity, which is also common in MS patients, results from muscle cramps and spasms. Antispasticity medications and stretching exercises are the treatments of choice for pain secondary to spasticity. Opioid medications are not effective in treating pain secondary to spasticity.

• Musculoskeletal pain (or non-neuropathic pain) can occur in patients with or without multiple sclerosis. It is most often caused by an injury to the bones, joints, muscles, tendons, or ligaments from events such as jerking movements, car accidents, falls, fractures, sprains, and or dislocations. Opioid medications are sometimes used to treat musculoskeletal pain.
https://msfocusmagazine.org/Magazine...s-Regarding-th

[SNOOPY]

rdmc:
In 2017 I started having back pain, this was later diagnosed as neuromuscular scoliosis. Basically the MS has caused scoliosis, and it's progression has been at a daunting rate.

The x-rays and MRI show that all the lower vertebrae are a mess and herniated. Surgery is the usual solution, but it's a grueling 2 day surgery, total of about 18 hours split between 2 days. Recovery and rehab is months, and that's if you're a person whose body works right. After checking online, I quickly realize I do not have the strength to rehab in the correct way. So that
was were Pain Management comes in. The neurosurgeons sent me to Pain Management.

You are in such a difficult situation rdmc, I am sorry. I do have some understanding about some of the pain you must be experiencing. My husband has had two back surgeries with the last one being more extensive, he has 2 titanium clips (L-3/4 and L- 4/5). I wish you all the best in finding relief with pain management.

[IntoDust]

Pain Management vs. Neurologist

For those of you who have been treated for pain by both a PM doctor and a neurologist, who do you feel did a better job at managing your pain?
I have had failed ESI’s for lumbar stenosis, I can not tolerate SSRI’s or SNRI’s and I had a horrible reaction to Gabapentin. I currently take Norco and I would really like to switch to a non-narcotic medication. I know my options are limited due to adverse side effects to non-narcotic medication. I have long since gotten past the mild side effects of narcotics as I’ve been on them pretty steadily for a few years.
I feel that pain management doctors are specialists in injections and opiates, while neurologists may have a better understanding of using anti-depressants and anti-eleptics off label for pain and their effects on the brain. Specifically an MS brain. My PM doctor seems to have no concern about the fact that off-label meds cause severe fatigue (on top of my severe fatigue) and cognitive issues (on top of my cognitive issues). It’s like they exacerbate my symptoms.
What do you guys think? Does your neurologist help you manage your pain effectively? Is anyone else unable to tolerate a lot of medications?

[Thinkimjob]

Hello. Opiates are now script only in Australia. Strangely enough, over the counter was 8mg, script is 12mg. Anyhoo. The new supposedly great pain killers have 500mg of paracetamol per tablet with added bonus ibuprofen. Mmm. Always thought overdosing on paracetamol was certain to kill your liver, and you.
My current main problem is spasticity legs, feet, shoulders, fingers, arms.
I got a lot of pain relief from 8mg of codeine. Now I do the “you’re being tortured, it will end, give it five minutes” pain management plan.
Yes marijuana (medicinal and otherwise) works but not for long.

[rdmc]

You are in such a difficult situation rdmc, I am sorry. I do have some understanding about some of the pain you must be experiencing. My husband has had two back surgeries with the last one being more extensive, he has 2 titanium clips (L-3/4 and L- 4/5). I wish you all the best in finding relief with pain management.

Hey Snoopy,

I appreciate the empathy (I sure your husband's back surgery and associated pain from the original hernias affected your as well)

I went to the Pain Management for the Radiofrequency Ablation yesterday. There's a surgical unit
beside the main office of the PM main office. I must say it was quite efficient, and much
like any other day surgery I've had in the hospital.

While getting vitals, an intravenous started, etc. they gave me a page to ready on
aftercare. I read the first couple lines about there being pain associated after the
surgery, and that the effects of the surgery will probably take about a week, to take effect.

My GP writes my small pain med order, and I usually book my appointments about 5 or 6 weeks
apart because I don't often use the entire number of pills in 30 days. But with the increased
back pain, I was using the 1 pill, twice a day to be able to get up and just get around. I had
cancelled my GP's appointment to take the day of the surgery, figuring they'd give pain med
after a procedure like that, and I have an appoint next week with the GP, so no worries.

So I asked the nurse, "This speaks about pain, so does the doctor send me home with a Rx for pain med after the procedure." She said "No" and I just about feel off my seat, LOL. She said they advise Tylenol or Ibuprofen. And in my mind I'm thinking, this is going to be fun. If it was something my GP could call in, then this wouldn't be a problem...but it's not, you have to be in person to pick up the script (and now they have something called e-script and they can send the
Rx electronically)...but same rules, no exceptions, you have to see the doctor. I know my doctor
and he would have come in, and had me meet him at his office, even if it was a Saturday so he
could write the Rx, but I started thinking, I'm in a Pain Management Doctor's surgery, getting
L1-5 ablated (i.e. burned by radio frequency) and no pain meds to go home with, even though
your information on after care lists pain as the first post op effect.

So when I got back to the surgery I had a conversation with the anesthesiologist about the drug she should use (I have an atrophied tongue and it tends to hang around the back of my mouth and palate so she was worried about the depth of sedation, so it was really light) and she kept saying to me, "Are you still here?" to which I'd respond.

So when the Pain Doc came in I was already up on the table, and set in place, so I couldn't see him. He said "Hi...I see you're all set" and I hit him up about my pain pill issue. He said
no problem, asked me what my doctor prescribed and e-scripted in the med. Hurray for the
doctor he has redeemed my assumption about PM docs, but I agree with whoever further up said we're made to feel like addicts (I don't think they mean it to be that day, it's just the crazy symptoms) but the nurse did sort of gave me the "patient seeking pain med" vibe.

I've been non active for yesterday, and most of today, but I think I may be having some relief, time will tell. And that ends my Pain Doctor saga.

[palmtree]

The times they are a changing

You have all expressed this so well. Since I started this thread I’ve been doing a lot of research and talking to a lot of people.

These are some of the things I’ve learned. Palliative care is for patients who are living with an illness with no reasonable possibility of a cure with the goal of controlling pain and improving the quality of life for patients so that they might live fully and as long as possible. The examples they give are diseases like HIV, MS and cancer. My doctor put me on palliative care in February 2016.

The CDC states in its guidelines that they are for primary care physicians who are treating patients outside of acute pain, palliative care or hospice.

Rdmc, your story both touches me and infuriates me. I don’t believe in medicating a young healthy person for back pain because so much can be done with exercise and other modalities. But when you have MS it’s impossible to go through all the rigors involved. I beg you not to have surgery. People who have back surgery almost always end up with much much worse pain afterwards that can go on for the rest of their life. Pushing a patient into going under the knife in order to avoid opioids in unconscionable. If I had any advice for you it would be to see if your PCP would put you on palliative care. It might give you some leverage with the pain management doctors. I wish I knew what could help you deal with them. I know one thing: if you specifically ask for something you can be assured of not getting it.

One thing you could do is compose a letter to him. Explain that living with MS makes it very difficult to follow through on the non medication treatments and you cannot afford to take any risks with surgery. Even epidurals carry risks. They have been overused lately violating the Hippocratic oath. You could also say, “I just want to make the time I have left the best it can be.” Another mistake many patients make is to come with elaborate braces all over and exaggerating the pain. Stand up as tall and straight as you can, stay calm and let him do all the talking.

It is a myth that MS pain does not respond to narcotics. MS pain is neuropathic pain. There is another illness that causes neuropathic pain. It’s called cancer. My PM put me on a time release morphine and Lyrica. It was like magic. When I went to my next appointment he was prepared to hear whining and complaining in order to get more drugs. But I walked in smiling. I said, “I feel so much better, thank you!” I think the reason many people don’t get relief from MS pain is that they take them on an as needed basis. It’s better to take them steadily.

IntoDust, you said it all so well. I agree with every word. The hysteria is the result of faulty statistics and then wrong conclusions are drawn from the statistics. I think they are going after doctors because it’s easy to find them. The real culprits in this are in the shadows. In my humble opinion the heroin epidemic is not contagious. You can’t catch it unless you want to.

[SNOOPY]

It is a myth that MS pain does not respond to narcotics. MS pain is neuropathic pain. There is another illness that causes neuropathic pain. It’s called cancer. My PM put me on a time release morphine and Lyrica. It was like magic.

I would be interested to know what your source is in reference to "a myth" that MS pain does not respond to narcotics. Did you try taking Lyrica on a regular basis without morphine? Lyrica and Neurontin has been shown to help with neuropathic pain without the use of narcotics.

I have been told by Neurologist's that MS pain/neuropathic pain isn't helped with opioids, this is true for me. The majority of my pain is neuropathic and I have never had narcotics help with it, I simply no longer care that the pain is there.

[palmtree]

My original pain management doctor is a Board Certified Anesthesiologist who also teaches at one of the top medical schools in the country. I am speaking from personal experience.

Did I try Lyrica without narcotics? Yes. It is the combination and the timing that treats the pain. Just taking OxyContin without Lyrica didn’t help. Addicts save up theirs medications so they can get loaded and use medication to deal with emotional problems.

Think, that is amazing they sold pain meds otc in Australia until recently. But I suppose if your health care system makes it difficult to get a script they are just as inaccessible there as in other countries.

[IntoDust]

I have been told by Neurologist's that MS pain/neuropathic pain isn't helped with opioids, this is true for me. The majority of my pain is neuropathic and I have never had narcotics help with it, I simply no longer care that the pain is there.

And I have had the exact opposite experience. My pain from both shingles and spinal stenosis has been helped with opioids.
I always think it’s quite funny that during the early 2000’s when pharmaceutical companies were pushing opiates, plenty of studies showed they were effective for nerve pain. Fast forward 15 years when the CDC and DEA are pushing for non-opiate meds, studies show they are not effective for nerve pain.
We’re all different in our experience of pain and pain relief. This one size fits all approach is bad medicine.

[SNOOPY]

I'm not going to argue with anyone, I am simply stating facts and each person can do as they wish. I have a 34 year diagnosis of this disease and have never found narcotics to be helpful with neuropathic pain. It is quite possible to learn how to deal with pain without narcotics and still live a functional life. One medication that I found helpful for neuropathic pain was Cymbalta (I no longer use Cymbalta)

There was an "old timer" many years ago who was progressive and learned to control their pain through biofeedback/mindfulness, etc. and did not use narcotics. Maybe someone can recall the username, I can't. I know this person tried to help others to learn how to control pain levels.

I have taken this same approach. I learned the more I noticed or focused on the pain the worse or more overwhelming it became. I learned how to distance myself from the pain which has helped immensely.

I have been told more than once by Drs. and an OT that I have a high pain tolerance. I understand not everyone can or will take my approach.

Opioids act predominantly as Mu receptor agonists in the central nervous system to modulate pain response and are indicated for use in moderate to severe pain. In general, pain relief with opioids is modest with limited impact on functional goals (Eisenberg, 2005). In MS central pain, opioids have minimal use and seem effective only at very high doses (Rowbotham, 2003; Kalman, 2002. Neuropathic pain (NP) is poorly responsive to opioids. Use of opioids in MS central pain is not recommended (Attal & Bouhassira, 2015; Finnerup et al., 2015).
https://www.nationalmssociety.org/Na...Pain-in-MS.pdf