Causes of HIV Related Pain

It may seem that the blog is being flooded with pain articles at the moment but as anybody with both HIV and neuropathy will know, putting your finger on the cause of your pain (or pains) is anything but straightforward. Today's excellent article from thewellproject.org (see link below) addresses the HIV-patient directly and explains that it's not that simple putting the correct neuropathic, or arthritic, or stomach-related or muscular, or whatever label on your pain. With a bit of luck, after reading this, you will be able to locate the source and reason for your pain before you take it to the doctor and have to explain the whole story again. It's also possible that you have more than one source of pain and it's important to know what causes what. Forewarned is forearmed and if you have a good idea of where the problem is and what's causing it, you'll help your doctor considerably to decide the appropriate tests and treatment. However, having read this, or an article like this, never go ahead and self-medicate! Drugs can very easily negatively interact with each other and it is very important that you talk everything over with your doctor before beginning any form of treatment. This may seem like a lecture but you know it makes sense!

HIV Related Pain
Updated November 2010

Pain is common in people living with HIV (HIV+ people). One study of HIV+ people found that more than 50 percent had pain. Pain can occur at all stages of HIV disease and can affect many parts of the body. Usually pain occurs more often and becomes more severe as HIV disease progresses. But each individual is different. Some people may experience a lot of pain, while others have little or none.

What Causes Pain?
HIV related pain can have many causes:

- A symptom of HIV itself
- A symptom of other illnesses or infections
- A side effect of HIV drugs

Regardless of the reason, pain should be evaluated and treated to help HIV+ people have a good quality of life.

Common Types of Pain
The first step in managing HIV related pain is identifying the type, and if possible, the cause of pain. Some common types of pain include the following:

Peripheral Neuropathy – Pain due to nerve damage, mostly in the feet and hands. It may be described as numbness, tingling, or burning. Nerve damage can be caused by HIV drugs or other medical conditions such as diabetes. The older HIV drugs that caused the most peripheral neuropathy are not commonly used today

Abdominal Pain – There are many possible causes of abdominal pain:
A side effect of some HIV drugs (for example cramps)
Infections caused by bacteria or parasites
Problems of the intestinal tract such as irritable bowels
Inflammation of the pancreas (pancreatitis) caused by some HIV drugs or by drinking alcohol.
Bladder or urinary tract infections (especially in women)
Menstrual cramps or conditions of the uterus, cervix, or ovaries

Headache – Head pain can be mild to severe, and may be described as pressure, throbbing, or a dull ache. The most common causes of mild headaches include muscle tension, flu-like illness, and HIV drug side effects. Moderate or severe headaches can be caused by sinus pressure, tooth infections, brain infections, brain tumors, bleeding in the brain, migraines, or strokes. Sometimes the cause cannot be determined.

Joint, Muscle and Bone Pain – This pain can also be mild to severe. It may be related to conditions such as arthritis, bone disease, injury, or just aging. It can also be a side effect of some HIV drugs and medications for other conditions like hepatitis or high cholesterol.

Herpes Pain – Herpes is a family of viruses common in HIV+ people. Herpes viruses stay in the body for life, going into hiding and flaring up later. The varicella-zoster herpes virus first causes chickenpox and later can cause shingles, a painful rash along nerve pathways. Herpes simplex virus types 1 and 2 cause painful blisters around the mouth (“cold sores”) or genital area. Even after a herpes sore heals, a person may still have persistent pain.

Other Types
- Painful skin rashes due to infections or HIV drug side effects
- Chest pain caused by lung infections such as TB, bacterial pneumonia or PCP pneumonia (Pneumocystis pneumonia)
- Mouth pain caused by ulcers (“canker sores”) or fungal infections like thrush
- Fibromyalgia or related chronic pain conditions
- Pain due to cancer anywhere in the body

Assessing Pain
Once the type of pain is identified, the next step is to evaluate its characteristics. The goals of pain assessment are to:

Define the severity of pain (how much it hurts): Your health care provider may ask you to assign a number to your pain, from one (very mild pain) to ten (the worst possible pain). Pictures can also describe pain. A smiling face represents little or no pain, while a crying face represents severe pain.
Describe details of your pain: Your health care provider may ask you to describe how your pain feels, for example sharp, dull, throbbing, or burning. Is it new (acute) or have you had it for a while (chronic)? Where is it located? Is it constant or does it come and go?

You may be having pain but do not want to complain. Talking about pain to your health care provider is not the same thing as complaining! Telling your health care provider exactly how you feel is the best thing you can do to find out what is wrong and get the right treatment.

Pain Management
Once the type and characteristics of pain are identified, you and your health care provider will decide how to manage or treat it. The following factors will play a role in selecting the right type of treatment for you:

- Cause, type, and severity of pain
- Whether it is short-term or long-term
- History of substance abuse
- If your pain is being caused by a medication you are taking or another illness, your health care provider will want to take care of that first. If you are still experiencing pain, there are many options for pain relief.

Non-medicinal Therapies
Pain relief without medications such as:

- Massage
- Relaxation techniques
- Physical therapy
- Acupuncture
- Heat and cold therapy
- Hypnosis
- Mental imagery or visualization

While these may be enough to relieve pain, they are often used along with pain medications.

Non-opioid Medications
Pain relief medicines that do not contain narcotics (opiates). They are available over-the-counter or by prescription. These medicines relieve mild to moderate pain related to inflammation or swelling. Some people with a history of drug addiction prefer non-opioid pain medicines such as:

- Tylenol (acetaminophen)
- Non-steroidal anti-inflammatory drugs (NSAIDs) such as aspirin or ibuprofen (for example Advil)
- COX-2 inhibitor, a type of NSAID that is less likely to cause stomach problems, for example Celebrex (celecoxib)
- Steroids, natural or manufactured hormones that reduce inflammation. Examples include prednisone and hydrocortisone

Non-opioid pain medicines can cause side effects including liver damage (Tylenol), easy bleeding (aspirin), stomach pain or damage (aspirin and other NSAIDs), and heart problems (COX-2 inhibitors).

Opioids/Narcotics
Narcotics and related drugs known as opioids are the strongest pain relievers, available only by prescription. They are used to treat moderate to severe pain.

Opioids are classified by how fast and how long they work.

Immediate release opioids – act rapidly but pain relief lasts for a shorter period of time
Sustained-released opioids – take longer to start working but pain relief lasts longer

Opioids are also classified by their strength.

Mild to moderate pain relievers (they are often mixed with non-opioid medicines to improve their action):
- Hydrocodone
- Vicodin (hydrocodone plus acetaminophen)
- Codeine
- Tylenol with codeine (acetaminophen plus codeine)
- Ultram (tramadol)
- Severe pain relievers:
- Morphine
- Fentanyl
-OxyContin (oxycodone)
- Methadone or Buprenorphine (not commonly prescribed in first-line pain reliever treatment)
Opioids can cause side effects including drowsiness, nausea, and constipation. Overdoses can slow down breathing and cause death. Opiates can lead to dependence or addiction and may be a problem for people with a history of substance use.

Topical or Local Therapies
These are medications that are injected or applied to the skin around a painful area. Examples include the local anesthetic Xylocaine (lidocaine) and capsaicin, which comes from chili peppers.

Other Therapies
There are medicines prescribed for other purposes that also have pain-relieving properties.

Anti-depressants – relieve neuropathic pain such as peripheral neuropathy. An example is Cymbalta (dulozetine).
Anti-convulsants – usually used to treat seizures, some of these drugs work for peripheral neuropathy. An example is Neurontin (gabapentin).

Determine if the Pain Treatment Works
Once you start medication or other pain treatment, your health care provider should assess your pain regularly to see if treatment is working. Sometimes pain medications can stop working over time.

What to Do if You Have Pain?
When you experience pain, it is important to know how to get fast, safe relief.

Do not ignore your pain – Pain is the body’s way of telling us something is wrong. Ignoring pain often makes matters worse and can cause more damage in the long run.
Assess your pain – When pain occurs ask yourself the following questions:
- How long have I had the pain?
- Did it happen suddenly or over time?
- Is the pain sharp or dull?
- What makes the pain worse?
- Does anything ease the pain?
- Is the pain limited to one place or does it spread out to other areas?
- Are there other symptoms (for example numbness, cough or fever)?
Notify your health care provider – Report pain to your provider without delay. Describing your pain will help find the cause and how best to treat it.
Take your pain medicine as directed – If you need pain medications, make sure you take them exactly as prescribed. Pain medications work best if they are taken at the first sign of pain. Breaking the cycle of pain means taking medications before your pain is at its worst.
Be responsible – Pain medications are very effective when taken as prescribed. Taking them incorrectly can be dangerous. Opioids are addictive, meaning you can develop physical and emotional dependence on a drug. High doses can cause breathing problems. In the worst cases, incorrect use of opioids can be fatal.
Tell your health care provider if treatment does not work – If your pain medicine is not relieving your pain, talk to your providers. You may be taking a medication that will not work for you, or you may have built a tolerance to the drugs over time. You may need to change doses or switch to a new medication.
Pain is common among HIV+ people. But it can be managed using a variety of methods. Talk to your health care provider if you are having pain. He or she can work with you to find the cause, manage the pain, and improve your quality of life.

http://www.thewellproject.org/en_US/Living_Well/Health/HIV_Pain_Mgmt.jsp

Topical Creams Any Good For Nerve Pain

Today's post from piedmontpmr.com (see link below) asks the question as to whether topical creams (creams applied to the skin at the area of most pain) are any good for neuropathy. It's an attractive prospect. We're so used to popping pills meant for other diseases and trying to live with the side effects, that the idea of a topical cream is tempting. However, as the article points out, it's often a question of 'suck it and see!' One of the proven analgesic creams for neuropathy is capsaicin (either as a cream or a patch) but you really have to watch out for burning side effects and depending on the strength of the cream, you may need expert help with its application. However, it's not the only one and some people even gain benefit by using sports creams meant for joint or muscle relief. Discuss it with your doctor first and then maybe try some out. You never know, you may find something that's just as effective as the strong pain killers you're normally prescribed.

Are Topical Creams Effective For Neuropathy?
Robert D. Schwartz MD 2016

You feel a tingling or slight burning sensation in your hands or feet and you know it’s a symptom of your neuropathy. These areas, especially your feet, tend to be targeted first because the nerves leading down to those extremities are the longest and the easiest to damage. But at the moment, you know its not a sign for major concern, you just want relief from the discomfort or pain as soon as possible.

Supplements are one way to treat these symptoms, but you don’t really know when they’ll start working and if there will be side effects. By taking any oral medication, you are prone to drowsiness, dizziness or simply lethargy. So what could you do to relieve the pain without all the other baggage? Well, there’s topical creams. They can be applied right onto the pained area usually without fuss and are usually better accepted by patients because they are painless.

It’s easy to be overwhelmed by all the products sitting on drug store counters for pain relief. They all claim to have the same end goal, but you’re not sure which one is right for you. Some are for muscle pain, joint back or back pain, but there are also plenty of non-prescription creams that you could use for neuropathy pain. What you should be looking out for are the two predominant components in topical over-the-counter creams/ointments: capsaicin and herbs. Several creams use a combination of these ingredients amongst others for effective pain relief.

Capsaicin

Capsaicin is a substance found in hot peppers, but interestingly, it also works as pain reliever for those with peripheral neuropathy symptoms. The slight burning sensation that is felt when capsaicin creams is applied counteracts the pain signals within your body, thus ceasing pain altogether temporarily. But capsaicin products aren’t for everyone. Some people can’t handle the initial pain sensation when it if first applied, despite proving to be an effective source for painful neuropathy.

Capsaicin products should not be applied on or near damaged, broken or irritated skin. It also needs to be applied several times a day and might take weeks for it to truly take effect.
Herbs

Another common non-prescription alternative is topical herbal products. Herbal products contain anti-inflammatory and analgesic (pain relief) properties. They essentially trick the brain into thinking your skin has changed temperature with a cooling sensation, relieving inflammation. They also widen blood vessels in the area so that blood flow is increased, allowing nutrients to be delivered more efficiently for quicker healing.

One of the most common herbal ingredients that uses these pain relief tactics is menthol. Menthol comes from peppermint plants — specifically extracted from wild mint or corn mint, and is used in a majority of pain relief ointments.

Herbs with these properties have been in use since ancient times. From North America to South East Asia, those around the world have turned to herbal medicine for effective pain relief. Other herbs that contain such properties include, balm of gilead, Calendula flowers and oil of clove. It’s hard to deny herbal effectiveness when it has stood against the test of time.

So now that you know a few ingredients in over-the-counter topical creams, what are some products that you can look out for?

Biofreeze
Capsin
Double Cap
Icy Hot Arthritis Therapy
Minagin
Rid-a-Pain
Sportsmed
Tiger balm
Trixaicin

You won’t really know which one works best for you until you try it. You can go online and do your research, but everyone’s condition is different, and everyone’s body will react differently to different medication.

If you find that over-the-counter products aren’t quite working for you, then maybe it’s time to turn to a prescription cream or ointment. Most likely, your doctor will prescribe a topical agent with either clonidine or lidocaine. Clonidine is used to treat high blood pressure, but those with nerve pain will also find relief in that department. And lidocaine has mainly been used for mouth numbing in a dentist’s chair, but has shown to be effective against neuropathy pain as well.

So if you’re thinking about getting quick relief from topical creams, then it is definitely recommended. Creams can give your fast temporary relief if your pain is mild to moderate. If you’re dealing with a burden that’s a bit bigger, we advise you to talk to your doctor right away for the best route for relief. You might be given a prescription cream, taken daily for a period of time, or recommended toward other avenues altogether. Whatever your symptoms may be, ensure that your are taking care of your body and your health.

http://piedmontpmr.com/topical-creams-effective-neuropathy/

Using Gene Therapy To Relieve Neuropathic Pain

Today's post from newsmax.com (see link below) revisits a story reported earlier on this blog about the new non-viral gene-therapy called VM202, which can potentially reduce neuropathic pain in ways that standard medications currently can only dream of. To reiterate, the study showed that just two low doses of VM202 produced pain relief lasting for months, with the added bonus of no side effects. The article explains what VM202 is but doesn't tell us how widely it's used at the moment; whether it's still in the testing stages, or whether it's available to the main population of neuropathy patients. Maybe your area, or country is carrying out trials as you read this and maybe you can get onto those but until things are much clearer, the best you can do is discuss it with your doctor or neurologist and ensure that they are aware of both the option and the potential of this treatment.

New Gene Therapy Eases Diabetes-Related Pain
Thursday, 05 Mar 2015 By Nick Tate

Northwestern University geneticists have developed a promising new gene therapy technique that helps those who suffered from painful diabetic neuropathy (PDN).

The study, published in the journal Annals of Clinical and Translation Neurology, found that two low dose rounds of a non-viral gene therapy called VM202 greatly eased the pain in people with PDN and the relief lasted for months.

"Those who received the therapy reported more than a 50 percent reduction in their symptoms and virtually no side effects," said lead researcher Jack Kessler, a professor in the department of pharmacology at Northwestern University Feinberg School of Medicine and a physician at Northwestern Memorial Hospital. "Not only did it improve their pain, it also improved their ability to perceive a very, very light touch."

VM202 contains human hepatocyte growth factor (HGF) gene, a naturally occurring protein in the body that acts on nerve cells to keep them alive, healthy, and functioning.
 
Keith Wenckowski, one of the 84 participants in the study who suffers from PDN, said walking barefoot on sand "felt like walking on glass" because of the condition — forcing him to wear shoes, even to the beach.

But Wenckowski said the VM202 therapy significantly eased his pain.

"I can now go to a beach and walk on the sand without feeling like I am walking on glass," he said.

There is not existing treatment for PDN, which affects up to 25 percent of diabetics. Patients with the condition have abnormally high levels of glucose in their blood that can be toxic to vital organs, tissues, and nerve cells.

Painkillers and other medications can alleviate symptoms, but carry undesirable side effects.

"We are hoping that the treatment will increase the local production of hepatocyte growth factor to help regenerate nerves and grow new blood vessels and therefore reduce the pain," said Senda Ajroud-Driss, M.D., associate professor in neurology at Feinberg and an attending physician at Northwestern Memorial Hospital.

"We found that the patients who received the low dose had a better reduction in pain than the people who received the high dose or the placebo."

© 2015 NewsmaxHealth. All rights reserved.

http://www.newsmax.com/Health/Health-News/gene-therapy-diabetes-neuropathy/2015/03/05/id/628524/

Suicide And Chronic Neuropathic Pain

Today's post from psychologytoday.com (see link below) covers a very serious topic concerning people living with chronic pain (and that includes millions of neuropathy patients) and that is the risk that the stress becomes so great that the only option is suicide. People try to link suicides of this nature to the so-called 'opioid addiction crisis' but that is way too simplistic. Anyone living with non-stop, chronic, nerve pain will tell you that there are times when things seem so bleak that thoughts naturally go towards ending it all. Were it not for opioid (and many other) drug treatments, suicide statistics would be much much higher than they are. At the moment, there aren't any trustworthy statistics about exactly how many people commit suicide because of the pain they're in but it's likely that the problem is much greater than imagined and deserves some serious research and study. This article highlights the problem in an intelligent way.

A Nation in Pain: Chronic Pain and the Risk of Suicide
 Judy Foreman Posted Nov 24, 2015

Chronic pain significantly increases the danger.

This fall's grim report about rising suicide and overall death rates among white, middle-aged Americans contains a slim silver lining. Here it is:

The new analysis by two Princeton economists, Anne Case and Angus Deaton, suggests that chronic pain — and the opioids used to treat it — may be a key driver of the rising deaths. While the “noisy” opioid epidemic has garnered near-daily headlines across the country for several years now, the equally horrible but silent epidemic of chronic pain has not yet broken through into the nation’s consciousness. Maybe things are beginning to change.

Many people still don’t realize it, but 100 million American adults live with chronic pain, many of them with pain so bad it wrecks their work, their families, their mental health and their lives.

There are no hard data on how many people with chronic pain die by suicide every year. But there are inferences. The suicide rate among people with chronic pain is known to be roughly twice that for people without chronic pain.

Since there are 41,149 suicides every year in the U.S., according to the National Center for Health Statistics, it’s possible that many of these suicides are driven by pain. Not proven fact, but plausible hypothesis. This would suggest that perhaps as many 20,000 or more Americans a year with chronic pain kill themselves, which would be more than the government’s tally of 16,235 deaths from prescription opioids every year. According to a CDC spokeswoman:

In 2013, there were 8,257 deaths that involved heroin and 16,235 deaths that involved prescription opioids. These categories are not mutually exclusive: if a decedent had both a prescription opioid as well as heroin listed on their death certificate, their death is counted in both the heroin as well as the prescription opioid death categories.

The truth, of course, is devilishly difficult to figure out with any certainty. Many people in severe, chronic pain have, and should have, opioids available. But unless they leave a suicide note it’s virtually impossible to tell if they overdose on purpose or accidentally. That’s in stark contrast to a pain patient who ends his or her life using a gun. That’s clearly a suicide, with or without a note.

In the course of researching my 2014 book on chronic pain, I heard many grisly stories. One Salt Lake City truck driver I interviewed would be dead today if his wife hadn’t walked in on him with a gun in his mouth. He had been in severe headache pain and after many visits to the ER, was repeatedly dismissed as a drug seeker, even without a medical workup. (Eventually, he was diagnosed with two brain aneurysms, bulging weak spots in a blood vessel).

I also heard about a surgeon with shingles who could find no relief for his pain and took a scalpel to his back in an attempt to dig out the painful nerves; he wound up in his own ER — as a patient. I heard of another man with ophthalmic shingles who finally shot himself because of unrelieved pain. A Boston surgeon I met was on the verge of suicide due to unrelenting pain from a rare autoimmune disease.

The anecdotes go on and on. Unfortunately, from a statistical point of view, they are just anecdotes. And unlike opioid abuse deaths, the stories of these and other pain patients rarely make the headlines.

Nor do these cases routinely make it into the reports of medical examiners and coroners, according to Utah pain specialist Dr. Lynn Webster, writing in a recent issue of Pain Medicine News.

In this fall's Princeton study, the lead author, Anne Case, was particularly interested in the role poor health might play in suicide because, as she told The New York Times, she herself has suffered for 12 years from disabling and untreatable lower back pain. In her research, Case discovered that middle-aged people, unlike the young and unlike the elderly, were reporting more pain in recent years than in the past. One-third of people in this group had chronic joint pain in recent years and one in seven reported sciatica.

The dismal situation with chronic pain — and the potential link with suicide — is unlikely to improve until the federal government takes the pain epidemic seriously. While the government spends $2,562 on research for every person with HIV/AIDS, it spends only $4 for every person with pain.

Clearly, chronic pain needs more attention and more research dollars. After all, it is the main reason Americans go on disability.

And it appears to be driving growing numbers of Americans to kill themselves.

(Originally posted on WBUR’s CommonHealth)

https://www.psychologytoday.com/blog/nation-in-pain/201511/chronic-pain-and-the-risk-suicide

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Can Mirogabalin Help With Neuropathy Pain

Today's post from medscape.com (see link below) is an interesting one concerning a new drug - Mirogabalin - to treat neuropathy. It has been tested against pregabalin (Lyrica) which may raise eyebrows considering Lyrica's bad reputation and has shown promise. I can't find out for sure if it's an anticonvulsant but assume that it is, if it's being tested against pregabalin (the name is also similar). Anyway, if you find that your current treatment is not working, it may be worth mentioning it to your doctor. Although the drug is not yet on the market, it's worth getting him or her to note it down. certainly worth doing some more research of your own.
 

Diabetic Neuropathy Pain: Mirogabalin Promising in Pilot StudyMiriam E. TuckerOctober 10, 2014 Medscape Medical News

Mirogabalin (Daiichi Sankyo) has shown promise as a potential treatment for diabetic peripheral neuropathic pain in a dose-ranging, proof-of-concept study that pitted it against both placebo and pregabalin (Lyrica, Pfizer).

Results from a phase 2, randomized, double-blind study were presented September 12 at Neurodiab, the annual meeting of the Diabetic Neuropathy Study Group of the European Association for the Study of Diabetes by Domenico Merante, MD, of Daiichi Sankyo, Buckinghamshire, United Kingdom, and were also published online September 17 in Diabetes Care by Aaron Vinik, MD, of Eastern Virginia Medical School, Norfolk, and colleagues.

In the study of 452 subjects with type 1 or type 2 diabetes who also had painful distal symmetric sensorimotor polyneuropathy for 6 months or longer, mirogabalin doses of 5, 10, 15, 20, and 30 mg produced greater reductions in average daily pain scores at 5 weeks than did either placebo or 300-mg pregabalin, both of which performed similarly.

Both gabapentin and pregabalin are first-line treatments for diabetic peripheral neuropathic pain, but only pregabalin is approved specifically for this indication by the US Food and Drug Administration, Dr. Vinik and colleagues explain. Mirogabalin is being developed worldwide by Daiichi Sankyo for the treatment of neuropathic pain.

Conference session comoderator James W. Russell, MBChB, professor of neurology, anatomy, and neurobiology at the University of Maryland, Baltimore, told Medscape Medical News, "This is a phase 2 study, so it's really the first serious look at this compound. Obviously, one needs more data to be able to say that mirogabalin is superior to pregabalin or is itself efficacious."

He also cited some concerns, including the lack of effect for the established treatment pregabalin compared with placebo, the short duration of the trial, and combining data from patients with type 1 and type 2 diabetes. Nonetheless, he noted that the study was well-conducted and that the investigators are "top-notch."

"I think mirogabalin is definitely a promising medication. It is a potential therapy to be added to our armamentarium for a very serious and disabling complication, painful diabetic sensory polyneuropathy," he told Medscape Medical News.

Mirogabalin More Selective for Pain than Pregabalin?

In the paper, Dr. Vinik and colleagues explain that mirogabalin binds to the same neuropathic pain-associated alpha-2-delta calcium-channel ligand subunits as pregabalin but is preferentially selective for alpha-2-delta-1, which is believed to be associated with analgesic effects, whereas pregabalin nonselectively targets both alpha-2-delta-1 and alpha-2-delta-2, which appears to contribute to central nervous system (CNS) side effects.

Thus, mirogabalin may provide a wider therapeutic index with fewer CNS complications, they suggest.

Of the 452 patients randomized to 1 of the 7 treatment groups in the trial, 383 completed the study, but 433 were included in the analysis using a last-observation-carried-forward design. Discontinuation rates were 13% for placebo, 18% for mirogabalin 30 mg, and 27% for pregabalin.

The subjects were 75% white and 54% male. Most (92%) had type 2 diabetes, with a mean HbA1c of 7.4% at baseline and an average 5.8 years of diabetic peripheral neuropathic pain. About a third had used either pregabalin or gabapentin in the past.

The primary end point was mean change from baseline in the 11-point average daily pain score (with 0 being no pain and 10 being worst possible pain).

At baseline, that score was 7.0 in the placebo arm, 6.7 across mirogabalin groups, and 6.6 for the pregabalin subjects.

Mean Reductions in the Pain Score at Week 5

Treatment Reduction in Pain Score
Placebo 1.9
Mirogabalin, mg
5 2.0
10 2.3
15 2.7
20 2.6
30 2.8
Pregabalin, 1.8 mg 1.8


The drops for the highest 3 mirogabalin doses were statistically significant compared with placebo (P < 0.05), beginning at week 1 and continuing through week 5.

The mean differences for pregabalin vs placebo were significant at weeks 1 and 2 but not weeks 3 through 5. The difference between mirogabalin 15 mg and 30 mg and pregabalin 300 mg were statistically significant, the investigators report.

The proportion of subjects achieving pain-score improvements of 30% or greater were 56% through 67% in the top 3 mirogabalin dose groups, compared with 38% with pregabalin and 42% with placebo.

Improvement of 50% or more points was achieved in 39% to 44% of the 15-, 20- and 30-mg mirogabalin groups, vs 28% with pregabalin and 24% for placebo.

But Lack of Effect of Pregabalin Is Concerning, and Side Effects Seem Similar

Dr. Russell urged caution in interpreting these findings. "The study actually showed a minimal effect on neuropathic pain scores with pregabalin compared with mirogabalin. This to me is a little concerning, since there are at least 3 class I studies showing efficacy of pregabalin and over longer periods of time. When you're doing a comparison of a new drug vs the established approved medication, it raises a little bit of concern when the established proved medication doesn't perform as expected."

He added, "I think most physicians who use pregabalin extensively would agree it clearly has a benefit in the treatment of painful diabetic sensory polyneuropathy."

With regard to safety, adverse events were mostly mild, and included central nervous system events in 2.8% with placebo, 14% in all mirogabalin groups combined, and 12% with pregabalin. Dizziness and somnolence were the most common, and most had resolved by study end.

Edema occurred in 1% of those taking placebo, 5% of the mirogabalin subjects, and in 10% of those on pregabalin. Mildly blurred vision was reported in 2% of both placebo and mirogabalin groups and 4% with pregabalin. No deaths occurred during the study, and only 1 serious medication-related adverse event — a gallstone in a man with comorbidities taking 15 mg mirogabalin — was reported.

Study discontinuations due to adverse events were 2% of the placebo group, 7% of mirogabalin subjects, and 4% with pregabalin.

Dr. Russell told Medscape Medical News that he didn't see much difference between the side-effect profiles of mirogabalin and pregabalin, but that future studies would need to compare whatever the most effective dose of mirogabalin turns out to be with the standard 300-mg dose of pregabalin.

"You compare the optimal dose of each drug, so it's apples to apples."

More Data Needed, and Longer Duration

Dr. Russell added — and the authors acknowledge as well — that 5 weeks is probably not long enough for a study to evaluate the full effects of a neuropathy medication.

"Until we start to see data to at least 12 weeks or even longer showing mirogabalin is efficacious over that period of time, we have to remain open as to its overall efficacy," he commented.

He also said that although mirogabalin's half-life is longer than pregabalin's and therefore could perhaps be dosed less often — once or twice daily vs 2 or 3 times a day — most of the pain effect would likely be related to peak drug levels.

"With a longer study, you'd get more info about when peaks and troughs occur and whether peak levels correspond to changes in average daily pain scores."

Also related to the longer half-life is a potential concern about renal excretion in patients with impaired renal function. The study excluded such patients, but the issue is important because painful diabetic neuropathy and impaired renal function often coexist in patients with long-term diabetes, Dr. Russell noted.

He also said that because neuropathy in type 1 and type 2 diabetes differs, studies shouldn't lump the 2 patient groups together.

"Type 1 diabetes is far more dependent on glycemic control than type 2, whereas other factors are more important in type 2, like lipid metabolism and inflammatory markers. They really are different. I'd like studies to move away from the idea that all diabetic neuropathy is the same."

Dr. Vinik received research funding from Daiichi Sankyo for this study, and Dr. Merante is an employee of the company. Disclosures for the coauthors are listed in the article. Dr. Russell's institution received a grant from Impeto Medical to study a device to measure neuropathy, but he personally received no direct funding.

Diabetes Care. Published online September 17, 2014. Abstract

http://www.medscape.com/viewarticle/833017#vp_2

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MDA7 To Inhibit Inflammation Causing Neuropathic Pain

When treatments only have letter and a number as a name, most people switch off before reading any further but today's post from consultqd.clevelandclinic.org (see link below) may be worth more attention from the casual reader. As a result of recent research into the sorts of inflammations that cause neuropathic pain, Cleveland Clinic investigators have synthesised a molecule that may inhibit the pathways that cause the inflammation. This molecule is called MDA7 and is a sort of synthetic cannabinoid. Dr. Naguib, who heads the team has high hopes for an eventual treatment based on this repression of microglial (15% of all nerve cells found in the brain) inflammation. At the moment, long-suffering rodents have been the recipients of this development but moves are underway for testing on humans. If you understand nothing else from this article, it's fascinating to learn that most of our neuropathic pain is caused by good old fashioned inflammation, which is a word most people will understand immediately. More hope for future generations.

Microglial Inflammation: A Promising Target in Neuropathic Pain Also Plays Role in Memory Deficiency
Pursuing a potentially treatable common pathway 
Feb. 2, 2015 
 
Promising research by Cleveland Clinic investigators demonstrates that microglial inflammation is a common pathway ‒ and a potentially treatable one ‒ for neuropathic pain and other treatment-resistant neuroinflammatory conditions, including Alzheimer disease (AD).

“Microglial inflammation is a mechanism of many CNS disorders ‒ neuropathic pain, AD, multiple sclerosis, parkinsonism, you name it,” says lead researcher Mohamed Naguib, MD, of Cleveland Clinic’s Anesthesiology Institute, which includes the Department of Pain Management.

His team has synthesized a molecule called MDA7, a cannabinoid type 2 (CB2) receptor-selective agonist, to inhibit microglial inflammation in hopes of effectively treating neuropathic pain and other conditions. “MDA7 prevents microglial activation and recruitment, which represent the elemental pathway of microglial inflammation,” explains Dr. Naguib. 

Efficacy in a Rodent Model of Chemo-Induced Neuropathic Pain

The researchers demonstrated as much in a 2012 paper in Anesthesia and Analgesia (2012;114[5]:1104-1120) reporting findings from a rodent model of paclitaxel-induced neuropathy, which is associated with activation of microglia followed by the activation and proliferation of astrocytes and the expression and release of pro-inflammatory cytokines. They found that MDA7 prevented paclitaxel-induced allodynia in rats and mice in a dose- and time-sensitive fashion without compromising paclitaxel’s anticancer effects. MDA7’s anti-allodynia effect was absent in CB2–/– mice and was countered by CB2 antagonists, which suggests it directly involves CB2 receptor activation.

Because all neuropathic pain shares the mechanism of microglial inflammation, Dr. Naguib expects the same effect in neuropathic pain types outside the chemotherapy setting. “We started with chemotherapy-induced neuropathy because it’s an area of unmet therapeutic need,” he says.

Similar Efficacy in CRPS

His team recently finished a study using a vascular occlusion model in the rat to replicate another form of chronic pain with a microglial inflammation mechanism, complex regional pain syndrome (CRPS). MDA7 was again highly effective, both at the molecular level and in terms of phenotypic response. They expect to submit the CRPS study for publication this year.

Promise for Alzheimer Disease

The wider biomedical community learned of the team’s work via an exciting study in February’s Nature Neuroscience (2014;17[2]:223-231) linking microglia-mediated inflammatory changes in a postsynaptic protein, neuroligin 1, to amyloid-associated memory deficiency in rodents.

Current models of AD hold that amyloid plaques accumulate in the brain, overwhelming the microglia that serve as the nervous system’s main form of active immune defense. When the microglia cannot clear out amyloid rapidly enough, they become inflamed, which leads to gene modifications in the brain.

“As our research into microglial inflammation advanced, it became clear how important this inflammation is to a variety of disease processes, which led down the Alzheimer path,” says Dr. Naguib.

His team’s Nature Neuroscience study showed that the microglial inflammation-induced gene changes in the brain include suppressed expression of the neuroligin 1 protein ‒ and that this suppression leads to hippocampal glutamatergic dysfunction and memory deficiency in rodents. The effects were ameliorated by inhibiting microglial activation. “These findings link neuroinflammation, synaptic efficacy and memory, thus providing insight into the pathogenesis of amyloid-associated diseases,” the researchers concluded.

Dr. Naguib notes that much research remains, but the findings suggest that MDA7 represents a promising new therapeutic approach to AD and other conditions involving microglia-mediated neuroinflammation, such as multiple sclerosis and Parkinson disease.

Next Steps

In the near term, the researchers are focused on gaining funding to move MDA7 into phase 1 human studies for chemotherapy-induced neuropathy, which they hope to begin by 2015. Studies of MDA7 in animal models of AD will take longer, due to the longitudinal nature of AD, but Dr. Naguib says the team is committed to pursuing that research as well.

Mohamed Naguib, MD is a professor of anesthesiology in the Cleveland Clinic Lerner College of Medicine of Case Western Reserve University.

Consult QD—Neurosciences

The neurosciences field is changing rapidly, and so are all of our practices. Join clinicians and researchers from Cleveland Clinic’s Neurological Institute in this open forum for discussion of the latest advances in patient care, research, and technology — specifically for healthcare professionals.

http://consultqd.clevelandclinic.org/2015/02/microglial-inflammation-a-promising-target-in-neuropathic-pain-also-plays-role-in-memory-deficiency/

Vagina Pain During Pregnancy

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Occupational Therapists Tips For Reducing Nerve Pain

Today's post from diabetesselfmanagement.com (see link below) looks at non-chemical means of controlling neuropathic pain and comes up with some valuable suggestions. It is written by an occupational therapist who clearly has experience of advising people in this area. However, nobody should expect these to be wonder cures. If some or all manage to reduce your discomfort just a little bit, they've worked and maybe saved you using too many pain drugs in the meantime but they will not be effective for everybody and you do need to try these over a period of time to see any effect. As the author says, 'none of these techniques will make your pain any worse – at least not in a lasting way – so what do you have to lose?'
 

Controlling Neuropathic Pain
Published October 18, 2011 by Erica K. Jacques Updated April 15, 2014

Tips From an Occupational Therapist

I am an occupational therapist. In my line of work, I see many clients with neuropathic pain stemming from diabetes. I have never experienced neuropathy myself, but I know from working with my clients that it is often an unrelenting, terrible kind of pain. The burning, the pins and needles, the stabbing sensations, the numbness – peripheral neuropathy is hard to live with and can also be hard to treat.

The causes of peripheral neuropathy (neuropathy affecting the legs, feet, arms, or hands) are not well understood, although it is clear that the condition can have a number of triggers, including physical trauma, infections, and toxins. In people with diabetes, neuropathy is usually the result of elevated blood glucose levels, which in many cases leads to permanent nerve damage. However, many people with diabetes find that improving their blood glucose control – especially if their blood glucose far exceeds recommended levels – can lead to a reduction or even elimination of neuropathy symptoms.

In part because of the unknowns surrounding the physical mechanisms of neuropathy pain, conventional drug treatments can be hit or miss when it comes to getting relief. You may have to be zonked out on pain medicine to get any substantial effect, and even then you may still feel pain. It can be hard to find the balance between pain relief and quality of life. However, we therapists have a few techniques up our sleeves for “tricking” the nervous system into perceiving less pain.

As a disclaimer, everyone responds differently to each of these techniques. You may have to try several approaches before you find one that works for you. The word “works” also carries some ambiguity, since none of these approaches is a cure-all for neuropathic pain. However, one or more of them may help you get your pain to a more manageable level, so you can go about your daily routine and spend more time living again.

The good news: None of these techniques will make your pain any worse – at least not in a lasting way – so what do you have to lose?

Heat

Most people find warmth soothing. When is the last time you didn’t feel relaxed in a warm bath or while lying in the sun? Warmth provides the body with a pleasant, comfortable sensation that might just be enough to provide some relief from neuropathic pain. The body only has so many sensory nerve receptors, so why not give some of them something nice to do for a change?

Heat can be applied in a number of ways. You can purchase a plug-in heating pad in almost any pharmacy; many pads have temperature controls to make them adjustable to your needs. Place the heating pad on the body part that needs soothing, taking care to place a layer or two of fabric (such as folded dish towel) between yourself and the heat source. Leave the heat on the affected area for a maximum of 10 minutes; remove it earlier if it becomes uncomfortable. (For more on applying treatments safely, see “Tips for Using Heat and Ice.”)

If you want to experience a spa-like treatment at home, you can purchase a paraffin wax warmer, which is also available at many pharmacies. This device is slightly messier and hotter than a heating pad, but using it can feel nice for your hands. If you use one, be sure to follow the package instructions and to check the temperature of the wax before putting your hand in it. Use a candy thermometer to ensure the wax temperature is no higher than 100°F, and continue to monitor it as you use the bath. Temperatures over 120°F can cause serious burns.

Another option – and the least expensive – is simply to use warm water. Again, make sure the temperature of the water is no higher than 100°F. Run your hands under the faucet, submerge your hands or feet in a basin of warm water for several minutes, or soak towels in warm water and wrap them around the affected area. Add some scented oil or shower gel to the water for an even more pleasant sensory experience.

Ice

In general, ice is not as soothing as heat. However, it does have the advantage of being an analgesic: It can provide a mild numbing effect, which can relieve pain. Ice is also anti-inflammatory, meaning it helps reduce swelling. This can be useful if your hands or feet are prone to edema (fluid buildup), which can increase sensations of pain. Ice may also be the key for someone whose pain does not respond to heat.

Using ice is as simple as going to your freezer: Fill a large freezer bag about halfway with ice cubes and seal it. Place a doubled-up towel over the area you are treating, then mold the bag of ice to the area and keep it in place for no more than 10 minutes. Some people prefer using bags of frozen vegetables such as peas, which are easy to shape to various body parts and can simply be thrown back into the freezer when done to reuse later. Just be sure to label your “cold pack” so that no one cooks it for dinner. You can also buy different sizes of reusable cold packs – filled with gel or pellets – at a drugstore and keep them in your freezer; having options can be helpful if you use ice frequently or for more than one area of your body.

Contrast baths

Contrast baths are a little messy, but they may offer some relief from both pain and swelling in the hands or feet. Start with two basins: one filled with ice water, the other with warm water. Starting with the ice water, submerge your hand or foot for 30 seconds – if you can tolerate it – and then immediately switch to the warm water for 2 minutes. Repeat the process about five times. If you can’t tolerate the entire 30 seconds of cold, you can cut the time for each bath in half.

Contrast baths are nice for people who get good results from ice but cannot tolerate using it for long periods of time. Like ice, contrast baths can keep edema under control. If you decide to try this method, be sure to keep several towels handy – no matter how careful you are, water tends to get everywhere.
 
Distraction

Have you ever had a headache or some other kind of pain, then forgotten about it? Later you might realize the headache or pain has gone away or is less bothersome somehow. Sometimes you only notice the pain again when you remember that you felt it before. Did your pain actually go away and then come back? Probably not; more likely, you were just distracted.

Distraction works under the principle that pain is all in your head. It’s not that you are imagining your pain; it’s that your brain – where feelings of pain are processed – only has so much attention to give. The more it focuses on pain, the less likely it is to notice much else. The flipside, however, is that if you can direct some of that attention elsewhere, your brain will have to turn down the “noise” caused by the pain.

Anything can be grounds for distraction: music, a good book, television, calling up a friend to chat. Whatever you enjoy and can focus on, do it. Distraction can be especially helpful when your pain is holding you back from a task that needs to be done. This applies most often to physical tasks such as exercise or mundane housework – although if a mental task does not demand all of your focus, it may benefit from distraction, too.
 
Minimizing effort

Sometimes the pain caused by peripheral neuropathy gets worse with overuse of the affected area. Just as your body would ache after a heavy workout, your hands may ache when you demand too much of them. But how to avoid this? Can you name a household activity that doesn’t use your hands? Most likely, you have a daily routine that includes holding, lifting, and carrying objects. If you can find a way to make those tasks easier, it might lessen the burden on your hands and spare you some pain. There are two ways to approach reducing the physical burden of tasks: joint protection and work simplification.

Joint protection means performing daily tasks in ways that lessen the load on your joints, particularly those in your hands and wrists. Joint protection is all about physics: using larger-handled objects, for example, or replacing knobs with levers, which require less force to operate. There are joint-protecting tools for just about any task or hobby, from eating to gardening. (See “Sources of Aids for Daily Living.”)

Work simplification also involves making tasks easier. Rather than focus on reducing the stress on joints, however, work simplification aims to eliminate some of the steps or effort required in routine tasks. Some examples of this strategy include switching to wrinkle-free clothing, using automatic cleaning devices (such as those for showers and toilet bowls, or a robotic vacuum cleaner), and choosing pre-chopped vegetables for cooking.

Both of these strategies may require some monetary investment – after all, new gardening equipment and a new wardrobe generally don’t come cheap. But if a purchase helps you get back to a hobby that you love, or even if it makes your daily routine a bit less strenuous, it’s probably worth it.
 
Journaling

Pain has a tendency to make people feel grumpy and edgy – meaning that the frustration caused by neuropathic pain can be about far more than the pain itself. Holding this frustration inside is almost always a bad idea, and it can be enormously therapeutic just to vent. One excellent way to do this – even though it may sound a bit hokey – is to write about your feelings.

A major advantage of using a journal over, say, a good friend to vent is that the journal never gets tired of listening to you gripe. It never judges you. You can use the strongest language you want, and no one ever has to hear it. A journal is a safe place to write anything you need to get out of your system – just be sure to keep your journal locked or hidden away if you want to keep your thoughts private. After you have vented in your writing, you can then call a friend and talk about something more pleasant.

Another advantage of journaling is that you can track your pain. By noting what you are doing when your pain gets worse (or better), including what time of day it is and details such as what you’ve been eating, you may discover patterns that you might not otherwise notice.
 
Relaxation

Relaxation is a powerful pain-fighting tool. Think about it: When you’re in pain, do you feel relaxed or tense? Are your muscles at rest, or clamped up? Is your nervous system calm, or do you feel anxious and edgy? By consciously working to control these reactions to pain, you can sometimes reduce your perception of the pain itself. To use an analogy, the fire alarm may be disturbing you as much as the fire – and you’ll feel better if you manage to turn it off.

Naturally, different people find different activities relaxing. If you have a tried-and-true method of relaxation, that activity may be a good remedy when your pain starts to act up. If you don’t have an activity in mind, though, here are a few ideas.

Go to a gentle yoga class. Yes, you will be moving, and moving hurts. But in yoga, you focus on the breath (distraction!) and slowly relax the muscles and the mind. You finish by lying down and simply breathing. Be sure to choose a class for beginners (avoid any class with the word “power” in the title) and to inform the teacher of your condition beforehand. He may help you modify a few poses to increase your comfort.

Don’t have time for a whole yoga class? Turn on some peaceful music. Use headphones if you can, to help block out the rest of the world. You can also look for a CD or a free podcast that provides guided imagery, in which you slowly let go of all of your tension while imagining you are somewhere peaceful and safe. Using guided imagery – or any other form of guided relaxation – at home may be an attractive alternative to a public class.
 
Exercise

You may be skeptical of exercise as a remedy for neuropathic pain – and such skepticism would be justified, since some exercise can make pain worse. But exercise can also help; you just have to do it the right way. This means, above all, exercising gently – no grunting, heavy lifting, or sweating bullets.

People with peripheral neuropathy may experience more than just nerve pain; they can also have motor nerve damage, which affects how the muscles function. Exercise won’t repair damaged motor nerves, but it can help your muscles compensate for any damage. Specialized strengthening exercises can help you reclaim muscle function and thereby lessen the burden of day-to-day tasks.

If you are new to exercise or if you haven’t exercised in a while, it is a good idea to consult an experienced occupational or physical therapist before embarking on any program. Unlike a personal trainer, therapists have specialized education in treating a wide range of health conditions. A therapist knows how muscles and nerves function, and what can interfere with their performance. By seeing a therapist, you can get an exercise program that is tailored to your particular needs. 

Getting help

Neuropathic pain can range from annoying to practically debilitating, and sometimes the available remedies may seem troublesome or inadequate. But many people find at least partial relief from one or more of the treatments and strategies described in this article. If one attempt to soothe your pain doesn’t work, it is important to keep trying. Whether through heat or cold therapy, relaxation, exercise, or adaptations to your daily routine, you may find a reduction in pain – and greater peace of mind – somewhere you didn’t expect to find it.

http://www.diabetesselfmanagement.com/managing-diabetes/complications-prevention/controlling-neuropathic-pain/

Oxytocin Not Oxycontin! Vital For Control Of Nerve Pain

Today's fascinating post from sciencedaily.com (see link below) talks about another element of our nervous system essential for reducing pain responses naturally and that is Oxytocin. Oxytocin is a peptide that is synthesised in the hypothalamus (The hypothalamus is in the brain and is responsible for certain metabolic processes and other activities of the autonomic nervous system.) What it does when it's released into the blood and spinal cord, is reduce the severity of pain signals to a bearable degree, otherwise they would be too extreme and traumatic and possibly cause a shut-down of all systems (during childbirth for instance). Oxytocin release is controlled by 30 neurons that are situated in the hypothalamus and are essential messengers in the neurological system. Having discovered this nerve control centre (so to speak) scientists will be able to target it to release more oxytocin and diminish the negative effects of certain treatments. It is true, the more this sort of information is released, the more confused we could become (through sheer information overload) but on the other hand, you get the feeling that we are only at the beginning of astounding new discoveries as to how our nervous system works and as long as we can get the gist of what's being discovered as we go along, we can trust the scientists to take their discoveries to logical and beneficial conclusions and eventually relieve nerve pain much easier. Oxytocin is also known as the 'love hormone' but you'll need to Google why!

30 small neurons join forces against pain 
Date: March 3, 2016 Source: CNRS

Oxytocin plays a crucial role in modulating the response to pain, but until now the process leading to its release was unknown. An international team[1], coordinated by Alexandre Charlet, at the CNRS Institut des Neurosciences Cellulaires et Intégratives in Strasbourg (France) and Valery Grinevich from the DKFZ[2] in Germany, has just identified a new pain control center situated in the hypothalamus. It comprises some thirty neurons that are wholly responsible for coordinating the release of oxytocin into the blood and spinal cord, thus reducing painful sensations. These findings, which open new perspectives in the treatment of pathological pain, are detailed in an article published on 3 March 2016 in Neuron.

That hammer blow on the fingers of the weekend DIY enthusiast must have hurt. But it would have been worse if oxytocin, a peptide synthesized by a region in the brain called the hypothalamus, had not intervened very rapidly in the cerebral processes modulating the pain response. From contractions of the uterus during delivery to the release of breast milk after birth, and not forgetting its involvement in regulating social interactions, anxiety or pain, oxytocin is an essential, but currently somewhat mysterious, messenger. Indeed, the mechanisms which lead to its dissemination had never previously been deciphered.

An international team of scientists coordinated by Alexandre Charlet at the CNRS Institut des Neurosciences Cellulaires et Intégratives (France) and Valery Grinevich at DKFZ (Germany) focused on the process underlying oxytocin release when pain is perceived. It discovered that the control center in the brain that coordinates the release of oxytocin only comprises some thirty neurons in the hypothalamus.

During acute pain or inflammatory sensitization (burns, pinching, cuts, etc.), information is transmitted via the peripheral nerves[3] to neurons in the spinal cord. These interpret the intensity of the message and encode it accordingly. The information is then sent to other neurons, which include the small population of 30 small cells in the hypothalamic paraventricular nucleus that has been identified by Alexandre Charlet's team. These in return activate a family of large, magnocellular neurons in another region of the hypothalamus, which release oxytocin into the bloodstream. The target is the peripheral neurons that continue to send the message responsible for pain to the brain. Oxytocin has "anesthetized" them and thus reduced the pain.

However, the thirty controlling neurons do not stop there. In parallel, projections from these cells, or axons, which are up to a meter long in humans, reach the deepest of the ten layers of the spinal cord (where the intensity of the sensory message is encoded) and release oxytocin. Thus via two simultaneous pathways, they diminish retransmission of the pain signal to the brain.

Work by the team has thus explained how different populations of oxytocin neurons are coordinated in order to control interpretation of the "pain" message by the nervous system. Discovery of this analgesic control center is promising in the context of treating pathological pain. Targeting this handful of neurons could indeed diminish the adverse effects of potential therapies. At present, the team is continuing to study them, this time in order to discover their involvement in oxytocin release that enables lactation and certain sexual behaviors.

[1] The team included scientists from the CNRS, Inserm, Université de Strasbourg, DKFZ and other institutions in Germany, Switzerland, China, Italy and the US.

[2] Deutsches Krebsforschungszentrum (German Cancer Research Center).

[3] The peripheral nerves link different organs to the central nervous system, made up of the brain and spinal cord.

Story Source:

The above post is reprinted from materials provided by CNRS. Note: Materials may be edited for content and length.

Journal Reference:
Marina Eliava, Meggane Melchior, H. Sophie Knobloch-Bollmann, Jérôme Wahis, Miriam da Silva Gouveia, Yan Tang, Alexandru Cristian Ciobanu, Rodrigo Triana del Rio, Lena C. Roth, Ferdinand Althammer, Virginie Chavant, Yannick Goumon, Tim Gruber, Nathalie Petit-Demoulière, Marta Busnelli, Bice Chini, Linette L. Tan, Mariela Mitre, Robert C. Froemke, Moses V. Chao, Günter Giese, Rolf Sprengel, Rohini Kuner, Pierrick Poisbeau, Peter H. Seeburg, Ron Stoop, Alexandre Charlet, Valery Grinevich. A New Population of Parvocellular Oxytocin Neurons Controlling Magnocellular Neuron Activity and Inflammatory Pain Processing. Neuron, 2016; DOI: 10.1016/j.neuron.2016.01.041

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CNRS. "30 small neurons join forces against pain." ScienceDaily. ScienceDaily, 3 March 2016. .

https://www.sciencedaily.com/releases/2016/03/160303133628.htm

Coping With Chronic Pain Symptoms Family And Friends

Today's valuable post from princessinthetower.org (see link below) follows on from yesterday's article about learning to cope with the pressures of chronic pain and discomfort. This applies to neuropathy patients too - don't underestimate your condition! The article comes from a different angle to that of yesterday and is equally lengthy but is equally useful in that you can choose from the pieces of advice given, according to your own situation.

How to Cope When Chronic Pain Affects Friends, Family and Social Life
March 14, 2015 by Princess 

When our lives have been so devastatingly altered by chronic pain and illness, with not a single facet untouched, the support we receive from friends and family becomes all the more essential. But one of the many ironies of a life with chronic pain is that at the very time you need the love and support of those you care for most, those relationships are so often challenged and affected by the same cause of that need.

In the recent pain support survey that so many of you kindly did (*enormous thank you* ~ you can still find the survey here), many report that one of the greatest obstacles is not with our bodies but in relations with those closest to us. Our friendships and connections with family can make the difference between coping or finding ourselves feeling entirely misunderstood, isolated in our pain, by some, even judged for it.

Dealing with this on top of the symptoms can naturally be devastating for pain patients. Yet the lessons of living in pain run deep, and even the darkest times can be illuminated by the slenderest light. This post focuses on the effect of pain on our relations with others and offers a few tips on how to cope.

Changing Relationships

“Chronic illness throws a monkey wrench into our relationships,” says Susan Milstrey Wells, author of A Delicate Balance: Living Successfully With Chronic Illness. “We may seem as foreign to the people who love us as if we had begun speaking a different language. Our family and friends still want us to be the mum who works, the dad who plays baseball in the backyard, and the friend who meets them for lunch.”

“In turn, we want to be treated as the same loving spouse, parent, and friend we always have been. A large part of the responsibility for making those relationships work falls to us. We have to educate our family and friends about our disease, allow them to express their emotions openly, and clearly state our limits and our needs. Also, we have to expect these changes to be unsettling.”

We want to be treated as the same person we have always been. #chronicillness

Chronic Pain and Socialising

Planning a social life around chronic pain and illness is hugely frustrating for everyone involved and – for those who are not in it for the long haul – can be swift to dissolve friendships. If you’ve ever known someone who keeps on saying that they want to catch up but never commits, or a friend who is constantly cancelling on you at the last minute, you know how frustrating that flakiness is.

Yet in our ever-erratic, unpredictable illness, our chronic pain can make us mimic that flaky friend to perfection. “On the one hand, we don’t want to over-commit to others and then have to cancel. On the other hand, we don’t want to unnecessarily isolate ourselves too much,” says patient, advocate and author of How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers, Toni Bernhard.

“This constant need to assess what’s best for us to do is hard and exhausting work. In the end, because of the uncertainty of our symptoms, most of us must simply make an educated guess and hope for the best.”

Planning a social life around #chronicpain is frustrating for everyone involved.

Never Knowing How We’ll Feel

The ongoing uncertainty about how we’ll feel each day makes planning impossible. “It’s hard to make plans because we can’t be sure how sick we’ll feel or how much pain we’ll be in on any given day. Even after I’ve woken up, I don’t know how I’ll feel as the day progresses because my symptoms can flare at any moment,” says Toni Bernhard.

“In addition, resting for days in advance of a commitment doesn’t assure that I’ll feel okay when the day arrives. It took me a long time to even be able to begin to make peace with the uncertainty of my symptoms. It’s an ongoing challenge, that’s for sure.” Some pain patients also feel that others expect too much from them, so believe they are letting them down in some way if they can’t keep up, which leads to more unhelpful thoughts.

Cancelling at the Last Minute

Just as others are perplexed by the fluctuation in symptoms, especially the speed with which a flare can transform us from being happy and engaged with someone, to collapsing in a voiceless heap, we too are equally perplexed. We can do everything within our power and planning to see our loved-ones but there are times when it simply does not help, or the pain flares so viciously, we are entirely powerless in controlling it.

Only you know which decisions to make to best manage your symptoms. If you are unable to do something or have to change plans you’ve made with friends, it’s important to communicate this but don’t feel obligated to give long explanations or grand apologies, though I know that is natural. We obviously feel bad, sad, and upset but the subsequent guilt at letting another down will only serve to depress you. 

One Event = Whole Day’s Preparation

A single event, such as seeing a loved-one means our entire day is built around that event. From waking-up, everything is considered and for many of us, we cannot do anything we want to before the event as it jeopardises it. So when we do have to cancel, it’s not just the event but an entire day wasted, us in pain, yet we were never able to even see that friend. This is frequently ignored, especially by those who get annoyed at us for being in pain and needing to cancel.

It’s complicated as we long to socialise, to see those we love but the depth of understanding needed to truly comprehend the constant evaluation, uncertainty and ongoing management of our pain, is only grasped by a select few. These friends are perhaps the finest of all as they do not get angry or feel put out if we must cancel at the eleventh hour, nor do they mind it if our plans are cut short because they understand that we are doing everything we can. It just doesn’t always go to plan.

Seeing a loved-one means the entire day is built around that event. #chronicpain

Evaluating Everything

When you look perfectly healthy but cannot participate in activities such as a short walk with friends or a party, explaining why is often difficult and always tiring. We naturally become exhausted explaining over and over why we cannot partake.

It also breaks our hearts when we keep having to explain that we’re not able to do something that we would truly love to, even if it was ‘just’ a walk with friends or a drive in the countryside. Though of course there is no ‘just’ about it when for the most part, you are stuck indoors because of your pain and illness.

Living with chronic pain and illness involves a constant evaluation of the impact that various activities might have on our pain, fatigue, and other symptoms. This painstaking (pardon the terrible pun), and meticulous pacing often requires difficult choices about whether or not to engage in an activity that others do without a second thought.

Living in #chronicpain involves a constant evaluation of the impact activities have on the pain.

Not Knowing How to Act Around Pain

“We may lose friends because we can no longer share a sport or hobby with them, or because we don’t seem to be as much fun as we used to be,” says Susan Milstrey Wells. “Sometimes our friends just don’t know how to act around us when we are ill.”

Being so misunderstood by loved ones and losing the intimacy once shared in formally close friendships naturally hurts. Human beings are social creatures. Our sense of who we are and our place in the world is forever influenced and redefined by the nature and quality of our interactions and relations with others. Yet chronic illness inevitably changes relationships. 

Sensory Overwhelm and Brain Fog

Another aspect of socialising with pain that becomes difficult, even impossible is trying to interact when the pain rises because of sensory overload and makes it impossible to think. The more people in the room the greater the stimulus on your nervous system, and consequently, your pain.

While you are trying to listen, engage, think of your responses too, any additional noise, people, and especially music can make brain fog and sensory overload exacerbate, making it painful physically and emotionally. The desire to have and maintain closeness in friendship and family is sadly made all the more impossible because of the very symptoms that thwart it.

Many pain patients, especially those with severe pain conditions that mostly leave them house-bound, naturally struggle to see, speak to, or socialise anything close to what we long to. Though it’s humble compensation, when we do connect, it does make it all the more wonderful, Skype too, is a beautiful means for those with pain to see their friends and chat.

Being Treated Differently

When you have an illness that is so hard for others to understand, others may treat you differently. Even those who fully support us can change in how they relate to us. We want to be treated as whole people, and adults, not ’the one with pain’ but may be treated like shadows of our former self, exclusively defined by our pain or illness, or worse as dependant children.

“I’ve had people talk to me as if I’m a child. There’s a word for this frustrating phenomenon: infantilization. The unpredictability of how we’ll be treated by others can be extremely stressful,” says Toni Bernhard. “Will they understand that chronic illness hasn’t turned us into children? Will they speak to us in a pitying voice? Will they shy away from meaningful interaction altogether, as if we’re contagious?”

Toni offers two strategies for handling this particular uncertainty: “First, I reflect on how even well-intentioned people may behave unskillfully for reasons related to their particular life history and their cultural conditioning. This helps me not to take their behavior personally. Second, I remind myself that, despite this illness, I know in my heart that I’m a whole and complete person; then I re-commit to making sure that’s good enough for me.” 

Talking About Our Pain

If we talk about our health problems, loved-ones may respond judgmentally yet in keeping quiet about our health issues, or the severity of the pain and symptoms, perhaps even acting ‘healthy’, we risk leading others to misunderstand what we can and cannot do. Additionally, by keeping quiet, we’re also passing up the possibility of receiving much-needed support, emotional and practical.

“How much you talk about your pain and other difficulties is a personal matter, affected by your personality, the situation, your culture, and the personalities and cultures of others in your life,” says Lynette Menefee Puiol, Ph.D. “For example, some friends might think it is not polite to ask how you are doing, while others think that not asking indicates that they don’t care.”

“There is a delicate balance between sharing enough so people will understand, and knowing that talking about your pain has a negative effect on relationships,” adds Lynette, who suggests having a ‘script’ prepared when you don’t want to say much, such as, “I don’t like to discuss the details, but thanks for your concern.” Instead of talking, some pain patients use a sign or a number system to communicate when pain flares-up or it is particularly difficult to speak. 

Exceeding Limitations

The nature of invisible illness and our fluctuating symptoms can lead to an equally fluctuating level of support. Since others cannot see our pain, sometimes even those closest to us find it hard to believe that someone who looks healthy can have so many severe symptoms and limitations. We may be misunderstood or expected to exceed our limits by even those we love the most, no matter how much we explain that we cannot.

This of course is hurtful emotionally as well as physically if we do go over those limits. Yet sometimes even those we think understand show they do not. We might try to ‘keep up’ only to pay for it so dearly later but of course the flare-ups and recoveries are as hidden as our pain is. So that side of living in pain is also so vastly misunderstood, which can also affect friendships and relations with family. 

Unpredictable Symptoms

Everyone with painful neurological conditions and invisible illness knows how tricky it is to manage our unpredictable symptoms and limitations but just as we struggle with it, our friends and family may think we are exaggerating our pain or mismanaging it, which may strain in turn friendships and relations with family.

Loved-ones who see us ‘able’ to carry out activities, though obviously oblivious to how painful these actually are, are then confused by our need to rest and recover, or allow that invisible pain to lessen. Oblivious to the pain involved, aftermath, or inability to repeat that activity, this creates doubt and may lead to their questioning of our pain, in turn affecting the closeness and connection in our relationships and friendships.

The swift climb from ‘normal’ pain to being entirely unable to speak because of a flare can also be perplexing to others. Of course not everyone reacts in this way. Some friendships are deepened through our illness and pain but if we are judged on something that is so out of our own control, it naturally makes us feel even more isolated, especially as the reality is so beyond the scope of our loved-ones’ own experience and therefore understanding.

Changing Needs, Changing Relationships

The world of the chronic pain patient, no matter the cause, shares the need to be understood. We don’t want pity but understanding. Not sympathy but empathy. When friends and family change how they respond to us it can make life with pain even more difficult. Even if initially our loved-ones respond with kindness and concern, that may change as time passes and we don’t ‘get better’.

Another way our relationships change is that we may rely on others in new ways, something that can be difficult to acknowledge even to ourselves, let alone in communicating those needs to others. We may feel embarrassed, flawed, or inadequate because of the pain. It’s natural to worry that others may be resentful of our needs because of disability and pain but that frequently leads to those needs not being met.

We don’t want pity but understanding. #chronicpain #chronicillness

Compassion Fatigue

Sometimes our friends and family are there for us only to slacken that support when things don’t improve. They may become frustrated in their role if they are a caregiver or a family member, or simply misdirect their own feelings about your illness at you, which is always hard. Your friend you went out every week with is fed-up of waiting, or your family stops asking how you are.

When even those you thought supported you get compassion-fatigue, or grow a little clipped or angry at you ‘never getting better’, take comfort in your own inner strength and remember that new people do come into your life, online and in person, especially now with so many online support groups.

Distance from Illness and Pain

Watching a loved one struggle with pain often makes others feel helpless and uncomfortable. They may also be experiencing fear, disappointment and loss. These emotions can be powerful motivators. It hurts for us, of course it does, but denial can be their own means for coping, how ever hurtful that is to us. They may simply feel too uncomfortable to acknowledge our pain and ill-health.

Some reactions are also often complicated by feelings of guilt for being healthy and able to walk, run, get out, or simply unable to share aspects of their lives that they know you can now no longer be a part of. Remember that others have their own challenges and lives to lead, that everyone has their own battles to face but above all, keep in mind that others’ reactions usually have far more to do with them than with us.

Keep in mind that others’ reactions usually have far more to do with them than with us.

Letting Go

I used to have a friend who was one of the kindest you could hope to meet. Yet when CRPS began, although the initial reaction was one of concern and compassion, the distance was evident. That grew to increasingly infrequent visits, until it became all too apparent that the pain made them too uncomfortable (as ironic as that sounds to us in pain). Their need to create distance was as they could not deal with it, and many people cannot. Illness, as perpetuated by our youth and health-adoring society, doesn’t sit well for many.

While some relationships are deepened by the challenges of chronic illness, we may need to accept that we must let others go. Letting go is a part of life but with chronic illness and pain that teaching acquires a whole new depth. Of course it hurts if someone you love leaves but for your sake, letting go is often the most healing action you can take. Just as our lives shift and evolve, we too change and grow, so do the people we share it with. Instead of focusing on the heartbreak of losing loved-ones to your chronic pain and mystifying illness, let go, have compassion for yourself, them too in letting go, and know that new friends do appear. 

Self-Compassion

“Ultimately, as we strike a delicate balance between our own needs and the demands of our most important relationships, we grow in self-awareness, creativity, and acceptance,” says Susan Milstrey Wells. “We can’t be sick successfully without learning to love ourselves, and when we accept our own limitations, we’re much more likely to let those around us be less than perfect too.”

Self-compassion attains a whole new height when it comes to living with chronic pain and illness. We are so frequently hardest on ourselves, and when we lose those we love, all the harder. Sometimes that loss, that separation from friends we considered for life can lead us to this dark and lonely place.

“If your #compassion does not include yourself, it is incomplete.” Jack Kornfield #chronicpain

Remember that you are doing your best, you are dealing with incredibly difficult circumstances so be kind to yourself. Speak to yourself as if you are a friend of yourself, without judgement, without criticism, without drama. Having self-compassion means to fully be with yourself in awareness, much like a good friend, with the willingness to be a loving companion to your own pain.

Self-compassion also brings care and concern for ourselves; warmth, love, and kindness for our challenges too. It’s a gentleness within you that permeates with acceptance, unconditional love and intimate understanding. As author and Eastern teacher, Jack cornfield said, “If your compassion does not include yourself, it is incomplete.” 

Finding Friends in the Spoonie Community

One way to cope with the ongoing challenges is to make friends with others who truly understand those that you face, on a day-to-day, moment-to-moment basis. Finding others who are suffering with similar symptoms is nourishing and connecting with others who live with chronic pain can provide much comfort. Although they may have a very different illness or condition to your unique combination, they have the ability to be empathetic, encouraging, and a great source of support precisely because of their direct experience.

Yet just as the night is darkest before the dawn, so too can the sadness in our lives be lifted by new people who come into our lives. If you are reading this after being recently diagnosed and fear the loss of friends, take heart in the fact that so many new people will come into your life; brave, inspiring, beautiful, compassionate people.

Some feel their friendship circle actually expands after a diagnosis, or, perhaps more vitally, if you reach out to others in pain online, or in support groups. The capacity for human connection is something that even chronic illness and pain cannot take away.

http://princessinthetower.org/how-chronic-pain-affects-your-friendships-and-what-to-do-about-it/