Lifestyle and Neuropathy interview with an expert in the field

Okay, most HIV patients who also have neuropathy, try to change their lifestyle in some way, to try reduce some of the worst effects of the disease. That's normal; it's not obligatory, it's just a normal reaction to try something out if someone advises you that it will help...so how does a bad diet, drinking and recreational drug use affect people's neuropathy? These are just some of the questions in this interview for Aidsmap.com files (see link below) with Dr Hadi Manji, one of only a handful of neurologists in the UK with extensive clinical experience of HIV-related neuropathy.

ATU: How can you tell whether the neuropathy is caused by HIV or by the medicines used to treat it?

Dr Hadi Manji:The presentation of HIV neuropathy is very similar to drug-related neuropathy, but there are some clues to tell whether it is the drugs or not. Sometimes the drug-related neuropathies come on very rapidly, almost explosively.My impression is that drug-related neuropathies may also be more painful. And if there's involvement of the fingers, that, to my mind, would be more drug – than HIV-related.

ATU: How many people have both HIV and drug-related neuropathy together?

HM: In my experience, a lot of people – up to 60% – who develop neuropathy that is attributed to the drugs are still left with neuropathy when they stop the offending drug, despite some improvement. My feeling is that these individuals probably had asymptomatic HIV related neuropathy that was unmasked by the drugs.

ATU:What other factors can make neuropathy worse?

HM:The bottom line is, if you've got nerve -related problems for whatever reason – HIV or antiretrovirals – and you add another factor that damages nerves, you are more likely to cause further damage. For example, when I see patients, I ask about alcohol intake, because alcohol damages nerves, making you more vulnerable to neuropathy.

ATU: How much alcohol is too much?

HM: It would seem reasonable that anyone who drinks more than the recommended 21 units a week for men [14 for women] may be more vulnerable. It's impossible to be categorical about these things because the other factor in alcohol-related neuropathy is vitamin B deficiency due to poor diet.

ATU: Does that also mean that people who use recreational drugs, and have a poor diet, could get neuropathy?

HM:There's no evidence that recreational drugs themselves cause neuropathy. However, the poor nutrition that can accompany drug-taking could certainly be a factor, since it is deficiency of the B vitamins which is important for nerve function.The cause of neuropathy in people who eat badly for any reason is usually thiamine (vitamin B1) deficiency.

ATU:Would you suggest that people whose diet is likely to be poor, for whatever reason, supplement with a vitamin B-complex tablet?

HM: I think that's reasonable, but with a caveat. One of the B-complex vitamins, B6, if taken in excess, causes neuropathy. At one stage in New York, B6 overdose was a common cause of neuropathy, because people were taking too much in their supplements. It's also worth checking B12 levels if you're a vegetarian, or if you have chronic diarrhoea.

ATU:What else do you check for when you see your patients for the first time?

HM: Diabetes is a cause of neuropathy, so I always check my patients' blood sugar. I also check to see if there are any other drugs that could cause neuropathy. For example, isoniazid, which is used to treat TB, can cause neuropathy.

ATU: What about co-infection with hepatitis C?

HM: Although there is a mechanism by which hepatitis C can cause neuropathy, it is very rare. I haven't seen more neuropathy in coinfected patients.

ATU: Are all the d-drugs equally likely to cause neuropathy, and of all the HAART medications, is it only d-drugs that can cause neuropathy?

HM: Of the antiretrovirals, only ddC, ddI and d4T are associated with neuropathy.The others aren't. ddC used to be the worst offender, but use of that drug has reduced significantly. In fact, compared with the early studies, incidence of neuropathy from all of these drugs is reducing for two reasons. First, lower drug doses are being used. Secondly, people aren't quite so immunosuppressed when they start the drugs, so they don't run the risk of this asymptomatic HIV-related neuropathy, as it is less likely to occur in people with higher CD4 counts.

ATU: How do you treat people with neuropathy who have no option but to
remain on d-drugs?

HM: Often, if the person is doing well as far as CD4 count and viral load are concerned, both the patient and HIV doctor are not that keen on stopping the d-drug.You could consider reducing the dose of the offending drug, but then there are concerns about resistance. Otherwise, all we can do then is to control the symptoms by using other drugs to make life a bit more bearable.

ATU: Do you prescribe antidepressants?

HM: I think they have a role to play, so I wouldn't write them off completely. I tend to use one of the tricyclics, amitryptyline.The crucial
thing is to start at the lowest possible dose (10mg), since it causes drowsiness. However,this does work in the patients' favour,particularly if they take it at night, because they can get a decent night's sleep.

ATU: Given the promising pain-reducing qualities of smoked marijuana presented at the recent Retroviruses Conference, would you support its use in the UK?

HM: In terms of other neuropathies, I have had patients who have said that smoking cannabis may be helpful.These results from San Francisco are preliminary, and it's never been trialled in a formal setting. Since there is no definite evidence to its benefit, I currently wouldn't be able to recommend it.

ATU: Before HAART, about one third of people reported HIV-related neuropathy. Why hasn't the incidence of neuropathy decreased in the HAART era?


HM: It's a combination of people living longer, and use of the d-drugs.We may see even more neuropathies appear as people with HIV are living longer.This is because there may well be increased risks for other causes of neuropathy that we currently see in non-HIV peripheral nerve clinics – diabetes, for example. So, when doctors see patients who are ageing with HIV, they will have to consider not just HIV or the drugs they take, but the other causes, too.

http://www.aidsmap.com/files/file1000724.pdf

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

Can Acupuncture Help with Neuropathy

Acupuncture is one of those treatments that divides opinion. Most people reason that if it has worked for thousands of years in Chinese medicine, it must be good. That may well be so and we've all seen the TV clips of operations undertaken with acupuncture needles but without anaesthetics but like any other treatment, alternative or otherwise, evidence-based proof is needed that it works when applied to nerve disease. Neuropathy is such a difficult affliction that even experienced Chinese doctor/acupuncturists admit that acupuncture is very much a hit and miss method as regards effectiveness in controlling neuropathic symptoms. Nevertheless, many people have found relief from acupuncture sessions. Today's enlightening post from Natural News.com (see link below) explains how Chinese medicine sees neuropathy and its potential treatment with acupuncture.
Although not normally done on this blog; the footnotes and references are added at the end to show that the article is based on research and not just alternative theory.

Acupuncture Treats Peripheral Neuropathy
Wednesday, May 06, 2009 by: Melissa Sokulski

Neuropathy, or Peripheral Neuropathy, is defined as having numbness, tingling or pain in nerves apart from the spine or brain, often in the hands and feet (1). It is a fairly common symptom, occurring in people with spinal injuries, diabetes, and genetic conditions such as Charcot-Marie-Tooth Syndrome (2,3). Acupuncture can be an effective way to treat these symptoms, bringing energy, life and feeling back into the extremities.

Neuropathy is a serious symptom, which often affects people`s quality of life. When people don`t feel parts of their bodies, they are more prone to injury and infection, as well as finding difficulty in daily tasks such as walking, fine motor work, or gripping. People who have this symptom as part of a genetic disorder also deal with the fears and hopes that go along with having a rare medical disorder(4).

Acupuncture is a powerful tool not only to balance qi - or energy - in the body, but to bring peace, hope and alignment into the mind, emotions and spirit as well.

When there is numbness in the periphery, there is not enough qi reaching these areas, according to traditional Chinese medicine. This can be for a variety of reasons, but mainly either:

1) there is too little energy in that organ system/meridian (energy pathway)

2) something is blocking the energy from reaching the area.

Sometimes there will be a combination of the two, and often multiple organ systems/meridians are involved. There are also different causes for the condition. Each of these things is considered and addressed by the acupuncturist, and a treatment plan which best suits the patient is mapped out.

In general, treatment would involve selecting points that promote circulation of energy in the meridians. If heat or cold is the cause, treatment would include either dissipating heat or warming coldness.(5)

Sometimes, weakness and flaccidity in the extremities is classified as wei syndrome. According to Traditional Chinese Medicine, this results from malnourishment of the tendons due to depletion of body fluids, caused by "excess heat" remaining in the body after illness.(6) Wei syndrome often requires longer periods of treatment.

Acupuncture often brings immediate relief - especially when there is pain - though it will likely take a series of treatments for the feeling and strength to come back completely and for the body to stay in balance, providing lasting effects. How often or how long treatment should proceed will be individual, depending on the cause and the overall constitution and health of the patient. As mentioned above, Wei syndrome can require a long course of treatment.

Acupuncture works by treating the person as a whole, balancing body, mind and spirit and allowing the body to do what it needs to do to heal itself. Acupuncture helps remove blocks, helps the body focus on increasing energy in areas of deficiency, and helps the patient be more present and focused, but ultimately it is our own bodies and energy that are able to heal.

Footnotes:
1) http://en.wikipedia.org/wiki/Neuropathy
2) http://www.medicinenet.com/peripheral_neuropathy/article.htm#1whatis
3) Charcot-Marie-Tooth Disorders (from CMT Facts III, Special Report, p.24):
- CMT is the most common inherited neuropathy, affecting about 125,000 Americans
- CMT is also known as peroneal muscular atrophy and hereditary motor sensory neuropathy
- does not affect life expectancy
- can vary greatly in severity, even within a family
- is the focus of significant genetic research
4) Flapan, Mark, p.10 of CMTA Special Report.
5) Xinnong, p.444
6) Xinnong, p.443

References:

CMTA Special Report: CMT Facts III. Published by Charcot-Marie-Tooth Association. 2700 Chestnut Parkway. Chester, PA. 19013.

Flapan, Mark. Living With A Rare Disorder: Hope and Fear. CMTA Special Report: CMT Facts III. Published by the Charcot-Marie-Tooth Association.

Maciocia, Giovanni. The Foundations of Chinese Medicine: A Comprehensive Text for Acupuncturists and Herbalists. Second Edition. Churchill Livingstone. 2005.

Xinnong, Cheng. Chinese Acupuncture and Moxibustion. Foreign Languages Press. Beijing. 1990.

http://www.naturalnews.com/026211_acupuncture_neuropathy_energy.html

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/

Stop Searching For A Nerve Pain Cure And Begin Learning To Live With It

Today's interesting post from healthskills.wordpress.com (see link below) is an impassioned and intelligently written plea for doctors to start aiming their treatment (at least partially) at learning to live with pain instead of constantly trying to 'cure' it with chemicals. Now nobody knows better than the average neuropathy patient, that chemical treatments almost never take neurological pain away completely. We're well aware that the pills we take are doing nothing to improve our nerve damage and at best provide a sort of security blanket that masks the pain. That security blanket then becomes something we rely on to get us through the day but its side effects can severely affect our well-being and sense of self. Pain is an experience not a disease. Pain is just pain and doesn't mean that the problem is getting worse, so why can't we learn better to accept it for what it is and manage it in such a way that it becomes part of our daily lives. Stop trawling through drug lists in the search for pain reduction and begin learning to manage it. That begins by accepting that the pain is there; every day and maybe for the rest of our lives. It's not a threat; it's just an experience and by using the proper management techniques we can probably put up with more pain than we think we can - now that would be an achievement in itself! Try not to dismiss the idea because pain is so entrenched in your life and try to be open to change. All that said, I too live with daily pain and I too take the drugs to dampen it but I wish I didn't, so if there are effective methods to learn to live with it and reduce its importance, bring them on! For that, we need doctors who are willing to say:' less pills, better management and here's how.'
 

Deciding when to say when: pain cure? or pain managed?
Bronwyn Thompson, PhD, MSc (Psych) 1st Class Hons, DipOT, Registered Occupational Therapist 

I think the subject of this post is the singularly most important yet neglected topic in chronic pain research today. When is it time to say “All this looking at pain cure, or reducing your pain isn’t working, it’s time to accept that pain is going to part of your life.” It’s difficult for so many reasons whether you’re the person experiencing the pain, or the clinician trying to help. It’s also incredibly important for everyone including our community.

Cures for pain that persists are not easily found. One possibility is that the underlying disease or dysfunction has not yet been treated – pain in this case is the experience we have when there’s an unresolved threat to body tissues. Find the source of the problem, treat it, and voila! No pain.

Another possibility is that a new or groovy treatment has been developed – something extraordinary, or something that’s being applied to a different problem or something that’s emerging from the experimental phase to clinical practice. This means clinicians need to have heard about it, maybe will have had to think hard about their clinical reasoning, have developed skills to apply it, and be ready to talk about it with the person they’re treating.

In the case of much chronic pain, pharmacological approaches simply do not work. Machado and colleagues (2009), in a large meta-analysis of placebo-controlled randomised trials, found 76 eligible trials reporting on 34 treatments. Fifty percent of the treatments had statistically significant effects, but for most the effects were small or moderate … the analgesic effects of many treatments for non-specific low back pain are small”, while Machado, Maher and colleagues found that paracetamol was “ineffective” for reducing pain intensity or improving quality of life for people with low back pain, and although there was a statistically significant result for paracetamol on osteoarthritis pain (hip or knee), this was not clinically important (Machado, Maher, Ferreira, Pinheiro, Lin, et al_2015). Clifford Woolf said “most existing analgesics for persistent pain are relatively ineffective… the number of patients who are needed to be treated to achieve 50% reduction in neuropathic pain in one patient is more than four – a high cost for the three unsuccessfully treated patients and their physicians” (Woolf, 2010).

Woolf’s sentence ends with an important statement: A high cost for the three unsuccessfully treated patients and their physicians. I have emphasised the final three words, because this might be the most difficult to process. It’s hard for clinicians to say “I can’t reduce your pain”, and “there isn’t a cure”. It’s incredibly hard. And it’s perhaps because it’s so hard that I’ve found very little published research looking at the way clinicians go about telling people their pain is likely to be ongoing. It’s like a taboo – let’s not talk about it, let’s pretend it doesn’t happen, after all it doesn’t happen often. Really?

Amongst allied health (I can’t bear to use the word “non-medical”), and in particular, physiotherapists, there continues to be a push to address pain intensity and (ultimately) to cure pain. Innovative treatments such as mirror therapy, graded motor imagery, therapeutic pain neuroscience (we used to call it psycho-education in the 1980’s when I first started working in this area), reducing the threat value of the experience have all come into their own over the past 15 years or so. Even long-standing pain problems apparently respond to these approaches – people cured! Who wouldn’t be keen to try them?

Most of these latter treatments are based on the idea that our neurology is plastic; that is, it can change as we change input and thoughts/beliefs about what’s going on. Unfortunately, the systematic reviews of trials, and at least one “real world” trial of graded motor imagery haven’t shown effects as great as promised from the early research (eg Johnson, Hall, Barnett, Draper, Derbyshire et al, 2012). There are sure to be people who can point to amazing outcomes in the people they treat. I’m certain that it’s not just the “treatment” but an awful lot to do with the person delivering the treatment – and the treatment context – that might make a difference to outcomes.

But where this all leads me to is who makes the decision to stop chasing pain reduction and pain cure? When does it happen? What’s the process? And what if we treatment providers are actually prolonging disability out of the goodness of our hearts to find a cure?

Let me unpack this a little.

In my research, several important factors led to people deciding to begin flexibly persisting (and getting on with life as it is, not as it was, or might be).
The first was knowing the diagnosis and that it would not be completely cured but could be managed.
The second, that hurting didn’t mean harm (pain is just pain, not a sign of ongoing damage).
The third, that there was something important the person wanted or needed to do to be themselves.

There were other things as well, like having a clinician who would stand by the person even if the person didn’t “do as the Doctor ordered”, and developing their own personalised model or explanation for their pain as it fluctuated from day-to-day. BUT the single most important factor was knowing that the problem needed to be managed because there was no cure. Knowing this meant that energy used chasing a cure was redirected towards learning to live well and be the person they were, rather than a patient or being dominated by pain.

Unfortunately, I think that many clinicians confuse the idea of managing pain with that of resignation to a lesser life. Even the wonderful Lorimer Moseley and crew wrote recently that “CBT literature seemed to focus on this idea of ‘pain is now unavoidable so it is now time to learn how to cope with it.’ He goes on to argue that because a CBT approach focuses on thoughts and beliefs (much like Explain Pain does), it’s not incompatible with the idea that the plastic brain can learn to reduce the threat value even further to ultimately “helping them live well with less pain, or perhaps without any pain at all.”

Here’s my concern: Right now there are many people living with chronic pain who have lost their sense of hope. They’ve pursued pain cure after pain cure, and in doing so, they’ve lost normal routines and habits, lost their usual occupations (activities), stopped being around people, stopped working, and have suffered in the true sense of the word – they’ve lost their sense of self. While I applaud the efforts of researchers like Moseley and colleagues, and I think we must continue to seek treatments to reverse the neurobiological underpinnings of pain, at the same time I think we need to look at the psychological and social aspects of our attitudes and expectations towards experiencing pain. And we must think of the negative effects of our emotional response to seeing another person who is experiencing pain.

Is it so terrible to experience pain every day? Speaking as one who does – despite my knowledge of neuroplasticity – my pain doesn’t represent a threat. It’s just an experience. It’s there. I notice it, I can feel it. And the participants in my research similarly acknowledged pain as present – but it didn’t have the emotional primacy that pain can represent before it is explained. In fact, some of the participants said they’d learned important things because they’d had pain. A lot like having a mood disorder (that must be managed), or diabetes (that must be managed), or heart disease (that must be managed), or respiratory disease (that must be managed), perhaps it’s OK to have pain – that must be managed. Because until our research has advanced a LOT further than it has, there are an awful lot of people living with chronic pain, and who will continue to live with chronic pain. And even more sadly, there are an awful lot of people who don’t even get the opportunity to know that it’s possible to live well despite experiencing chronic pain because we (as part of society) still don’t accept that pain can be present without it being a threat.

Sometimes I wonder at our (clinicians and researchers) blind spot. We just don’t seem to be ready to accept persisting pain as something that can be lived with. Is it time to look at our own discomfort with allowing pain to be part of life?

Sources

Bowering, K. J., O’Connell, N. E., Tabor, A., Catley, M. J., Leake, H. B., Moseley, G. L., & Stanton, T. R. (2013). The effects of graded motor imagery and its components on chronic pain: a systematic review and meta-analysis. Journal of Pain, 14(1), 3-13.

Cossins, L., Okell, R. W., Cameron, H., Simpson, B., Poole, H. M., & Goebel, A. (2013). Treatment of complex regional pain syndrome in adults: a systematic review of randomized controlled trials published from June 2000 to February 2012. European Journal of Pain, 17(2), 158-173.

Johnson, S., Hall, J., Barnett, S., Draper, M., Derbyshire, G., Haynes, L., . . . Goebel, A. (2012). Using graded motor imagery for complex regional pain syndrome in clinical practice: failure to improve pain. European Journal of Pain, 16(4), 550-561.

Machado, LAC, Kamper, SJ, Herbert, RD, Maher, CG, & McAuley, JH. (2009). Analgesic effects of treatments for non-specific low back pain: a meta-analysis of placebo-controlled randomized trials. Rheumatology, 48(5), 520-527.

Machado, Gustavo C, Maher, Chris G, Ferreira, Paulo H, Pinheiro, Marina B, Lin, Chung-Wei Christine, Day, Richard O, . . . Ferreira, Manuela L. (2015). Efficacy and safety of paracetamol for spinal pain and osteoarthritis: systematic review and meta-analysis of randomised placebo controlled trials (Vol. 350).

Woolf, Clifford J. (2010). Overcoming obstacles to developing new analgesics. Nature Medical, 16(11), 1241-1247. doi: doi:10.1038/nm.2230

https://healthskills.wordpress.com/2015/07/27/deciding-when-to-say-when-pain-cure-or-pain-managed/

Surviving with Neuropathy

This post is a very personal account of what it's like for many people living with neuropathy (see link below). As you will read, the writer takes obvious strength from his faith but not everybody will feel the same way. There is also absolutely no reason to connect him with HIV in any way but his story will strike a chord with all neuropathy sufferers. In a way, it doesn't matter where you get the strength to deal with it, as long as you do. What this man describes is almost a universal story and for that reason, it is well worth sharing here. The book he refers too is also reviewed elsewhere in the blog('Neuropathy Book Reviews' click on the link in the list to the right)

Surviving With Neuropathy
By D.Stewart | August 2011

My neuropathy (nerve damage) symptoms have been horrible lately. I have stenosis (narrowing of the spinal cord pathway) and radiculopathy (symptoms in the arms and legs). If you have neuropathy you are not alone. It changes your life adversely. I have been surviving with neuropathy since March of 2004.

I recently ordered two books to help me cope with the burning, tingling, puffy feeling in my arms, stabbing pain radiating into my arms and legs intermittently, and chronic toothache pain and tension in my neck. Doing anything causes pain in my fingers and toes. I've been switching fingers lately as I type because of the sharp pain in my fingers. I'm thankful that I am functional, but am having difficulty adjusting to all this. Only God knows the affliction that I feel inside my body.

One of the books that I ordered is PERIPHERAL NEUROPATHY: When the Numbness, Weakness, and Pain Won't Stop by Norman Latov, MD, PhD, who shares his own medical afflictions (neuropathy) with others to encourage them. Dr. Latov states on pages 103-104..

Functioning day to day is not easy. Living with neuropathy teaches you very quickly that you cannot take anything for granted. Just a few years ago, if someone had told me that walking up a flight of stairs could be agonizing and make me feel like I'd just climbed Mount Everest, I wouldn't have believed them. Let me tell you: I believe them now.

From the outside, you could never know anything is wrong. In fact, someone recently said how lucky I was that no one can tell I have this disease. Actually, it's a double-edge sword. I don't want people to think something is wrong with me. On the other hand, I often feel like I'm suffering in silence because no one understands what I'm living with. I try very hard to hide what I'm going through. ...

When you are diagnosed with peripheral neuropathy, you constantly are confronted with what life was like “before” and “after.” “Before” meant living without having to think about every little thing you do. It meant walking down stairs without having your heart skip a beat as you fear you may tumble down instead of walk down. “Before” meant taking a step without having to take a step.

“After” means thinking before doing. When you wake up in the morning, you get out of bed, remembering to be careful not to lose your balance.

SOURCE: PERIPHERAL NEUROPATHY: When the Numbness, Weakness, and Pain Won't Stop; by Norman Latov, MD, PhD; pages 103-104; ISBN-13:978-1-932603-59-0

That is exactly what I have been diagnosed with (peripheral neuropathy) and am going through. I have also been diagnosed with stenosis (narrowing of the spinal cord pathway and radiculopathy (tingling, burning, weakness, and pain radiating in the arms and legs). I read this passage and wanted to cry because that is exactly how I feel. I feel alone when I'm around people because they don't know the raging storm inside of my body... burning, tingling and pain in my arms and legs, arms that feel twice their normal size, my neck feeling like a bomb ready to blow, and neck pain like a toothache that radiates into my gums and facial area. The pain in my neck as I type is awful. It's a miserable way to exist. It seems like only a dream when I think back to a time in my life when I was pain free and happy. I am in God's hands. James 5:13, “Is any among you afflicted? let him pray.”

Until a person is afflicted with endless pain, they naturally can't relate to such suffering and can't possibly understand. They just can't. I know what's it's like to be outside on a beautiful day with the sun shining, and everybody is enjoying life and having a good time; but physical suffering within my body is afflicting me and it overshadows me. I look fine, but my whole body is crying out in affliction. I fight it and try to live anyway, but it catches up with me and oftentimes I feel overwhelmed in public with burning, tingling, fatigue, weakness and pain. I try to live a normal life, but it is difficult.

Philippians 2:13, “For it is God which worketh in you both to will and to do of his good pleasure.” That is why this website is here, i.e., because God has done a work in my heart to will and to do of His good pleasure. Amen and amen!

I ask for your earnest prayers for this ministry and me daily. The sharp pain radiating into my arms and legs is getting worse lately. I hope it doesn't continue to worsen. I can do things, it is just painful. For the first time lately, I've had to completely stop what I'm doing because the sharp pain in my fingers and toes is so excruciating painful. The more I do, the more they hurt. Still, I can't stop surviving and I have to fight these afflictions in my body. I'm in so much pain. I know that there are others out there suffering in pain and affliction. You're not alone my friend, you have my heart.

http://www.jesus-is-savior.com/Health_Concerns/surviving_with_neuropathy.htm

Can Tai Chi help with Neuropathy

When mobility becomes an issue for neuropathy patients, the ability to exercise is equally compromised. Many people find yoga extremely helpful but if yoga seems much too strenuous, then Tai Chi may well be a useful alternative. Today's interesting post from Emaxhealth.com (see link below) talks about a small Louisiana university study and trial that produced very encouraging results. It is sometimes difficult to find the medical reasons why something works but with neuropathy, patient feedback is the best reason for something to be investigated further. In this case, Tai Chi's ability to improve balance and confidence with walking and standing, deserves much more research.

Using tai chi to fight degenerative nerve disease
By Armen Hareyan on January 23, 2007

Tai Chi Treatment for Peripheral Neuropathy

Peripheral neuropathy is a degenerative nerve disease with no cure and few effective treatment options " until now. Li Li, professor of kinesiology at LSU, is conducting a study into the benefits of tai chi for elderly peripheral neuropathy patients. So far, those practicing tai chi show far greater levels of improvement that those pursuing more traditional methods of treatment.

Test results prove tai chi is more than just a mind game or a placebo it really works. Li's group conducts periodic scientific and medical testing to track each person's progress as they continue in the program. Other, more traditional methods of treatment, including walking and light machines, are also studied to compare the results to those gained from tai chi, but so far it is still the undisputed winner, producing improved flexibility, sensation and overall health.

Most patients report a significant decrease in falls, increased confidence walking and standing and are able to stop using walkers or canes after consistent and extensive participation.

The study, backed by little to no funding, started out in the summer of 2004 and was slated to last only a few months. But participants felt such improvement that they refused to give it up. So, in the fall of 2005, the study resumed with great anticipation and with funding from LSU s Department of Kinesiology. What was once a simple comparison between two forms of exercise walking and tai chi has now developed into a full-fledged study, utilizing the expertise of biomechanists, psychologists, physiologists and many others in order to gain a better understanding of the actual impact this exercise produces.

The program includes approximately 75 individuals, with breakaway groups meeting up to three times a week for lessons. Thomas Yajun, a tai chi master who moved to the United States only three years ago knowing little to no English, leads the classes through their routines, which take into consideration the group's general level of mobility. As they become more comfortable and gain more mobility, Yajun pushes them farther, constantly expanding their boundaries. "People wouldn't come if it wasn t doing something," Li said. "I mean, some of these people travel 50 to 100 miles round trip just to make it to our classes. For many of them, if they couldn't come to our sessions, which are offered free of charge, they couldn't afford to go anywhere else."

There are more than 150 people in the Baton Rouge area waiting join Li's study. But with only LSU's Department of Kinesiology sponsoring the program, it cannot support any additional participants. Parking and facility space are already posing a problem. Li hopes to receive funding in the near future that will allow him to expand the program so that it can help others fight back against the pain of peripheral neuropathy.

"I have really been helped by the program. My legs felt like they had bands around them and my feet would burn almost constantly. Since I've been here [approximately nine months], I've had only two episodes of severe burning and the bands, where as it was on a daily basis before," said Marian King, who, prior to joining the program was forced to stop working due to increasing difficulty with walking and standing.

"We're seeing great results, and we're very excited," Li said. "Some people started the program unable to stand, even with assistance, for more than five minutes. Today, these same people have no trouble standing independently."

"I was falling down in the house a lot. Sometimes I would fall down just by tripping. It's [tai chi] been a real improvement," said John Liebert, who only recently joined the program. "I fall down far less, and that's the big issue with me. It's not going to cure the disease, but it was never intended to be a cure. It has definitely helped my lifestyle. It's been a real improvement."

Source: Louisiana State University

http://www.emaxhealth.com/6/9096.html

Learning to Live with Pain

Today's very useful article from ezinearticles.com (see link below) gives some realistic advice to people suffering from chronic pain. Remember, chronic pain, is pain that continues longer than two or three months and is a frequent symptom of neuropathic disorders. It's a question of learning to manage your pain so that you can find a place for it in your life. You should still aim for complete removal of pain while at the same time, accepting that it may not go away completely; something that is extremely difficult to do!

Surviving Chronic Pain: What You Must Know Now
By Jo Ann LeQuang: October 2010

More than 50 million Americans suffer from chronic pain, that is, pain that does not go away. Chronic pain can be caused by a disease, like fibromyalgia, or be the result of an old injury. Sometimes there is no obvious reason for chronic pain. Unlike normal aches and pains, chronic pain can seem like it takes over your life.

No matter whether your persistent pain is mild or excruciating, it can change your life--and not in a good way. Chronic pain patients are at risk for depression and other mental health challenges because of their condition.

There are important steps that people with long-term pain can take to help manage their pain.

First, you need to develop realistic expectations. Many people with pain hope that they can take a pill or rub on a cream and the pain will disappear--permanently. While that is a wonderful thought, it may not be the case. You may have to do more than just take a pill to manage your pain. Many times pain control involves lifestyle changes, and those can be difficult to make. Furthermore, your pain may never go away completely. You may be able to reduce your pain by half, or three-quarters, or even 90% but for many people, some degree of pain may still be something they have to live with.

Second, you have to be willing to do what it takes to manage your pain. This means being open minded about pain management therapies, trying things you thought you would never try, and changing the way you live and do things to help defeat your pain.

There are lots of things that we know help some people cope with some types of pains. You should be willing to give these things a fair try. If they help ease your pain, even a little, keep doing them. Even if something only helps a little bit, say by reducing your pain by 10%, keep doing it because lots of little things can add up. Anything that can help improve your pain by that amount is worth doing--and adding to.

Some things that work on pain include ice packs, heating pads, hot baths, hot showers, massage, acupuncture, essential oils, aromatherapy, music therapy, regular sleep schedule (going to bed and getting up at the same time every day), exercise, better diet, eliminating sugar and artificial sweeteners from your diet, losing weight, taking long walks, spending some quiet time alone every day, getting more rest, becoming active in a cause larger than yourself, and taking vitamins.

Looking at this list, you probably think some of these ideas are goofy. That may be. But every one of them has been used by at least some pain patients to get significant relief. You cannot afford to be too critical of things that might turn out to actually help you. The point is to try things and see what works for you. Give things a fair chance, even if they seem a little silly. And do not give up doing something even if it offers only modest relief.

Third, you have to start playing the percentages. Your goal is to get 100% relief (knowing that may or may not be attainable). Instead of looking for that silver bullet that will give you 100% relief, look for lots of things to provide a portion of your pain relief. For instance, losing weight may reduce your pain by 20%. You may also find that eating a more healthful diet improves your pain about 10%. Then you may find that a weekly massage improves your pain 40%. Add to that an occasional ice pack (10%) and exercise (10%) and you have a "recipe" to eliminate 90% of your pain.

That is just an example, but it is an example that is based on what works for many people with pain. Notice that pain relief does not necessarily require drugs. In fact, you should try to do everything you can without drugs for as long as you can, since drugs are powerful chemicals that can cause side effects.

Of course, many people with chronic pain need to take drugs. You should discuss the best type of medication to take with your doctor, even if it is an over-the-counter medication. Learn all you can about drugs since drugs can interact with other drugs (and even some foods) and some common over-the-counter medications can present serious health risks if not taken as directed.

It is not at all unusual to harbor resentment and anger against your family, friends, and even your physician if they do not understand what is happening to you. To be quite fair to them, people who do not live with constant pain find it hard to grasp what it means to live like you do. Instead of arguing with them or getting annoyed with them, realize that they just do not know.

When it comes to your physician, do tell your physician about your pain. If you think your current physician is not doing all he or she can do to help you, ask for a referral to a pain management specialist. To be fair to your doctor, pain is a very complex subject and specialists are more up-to-date with the latest treatments than general practitioners. A pain specialist can be an important player in your battle against pain. Even if you have to drive a long distance to see one, it may be worth the trouble.

If your doctor prescribes drugs or tells you about over-the-counter drugs to take, make sure you understand how to take them and follow your doctor's instructions. If you experience side effects or if you still have pain, call your doctor before you stop taking the drug or double-up on the dose.

For people who suffer from severe chronic pain, there are potent drugs and other remedies that can be considered. There are implantable devices such as neurostimulators or infusion pumps that can help you manage your pain. You should ask a pain specialist about these things if your pain is unbearable using other strategies.

Last but not least, pain management is a war not a battle. You need to fight that war a little bit every day. Be grateful for good days and enjoy them. Take time to be thankful for all the wonderful people and things in your life. Keep doing the things that help you, even if they are inconvenient or boring (such as exercise, eating healthier, getting more rest). Keep learning all you can about your condition and pain. You may never find a magic cure, but you can find at least some degree of improvement.

Click through to www.AssociationofChronicPainPatients.org to learn more about chronic pain and to be part of a community of people raising awareness about chronic pain and its effects. This article was written by Jo Ann LeQuang.

http://ezinearticles.com/?Surviving-Chronic-Pain:-What-You-Must-Know-Now&id=5251785

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SMOKING IS ASSOCIATED WITH RECTAL CANCER

Cigarette smoking may be a risk factor for rectal-- but not colon--cancer

The evidence linking cigarette smoking and colorectal cancer risk has been inconsistent. 

Electra Paskett, Ph.D., of Ohio State University in Columbus and colleagues investigated the association between smoking history and colorectal cancer among nearly 147,000 participants in the Women's Health Initiative.

After an average follow-up of about 8 years, 1,242 women were diagnosed with colorectal cancer. Increased colorectal cancer incidence was associated with more cigarettes smoked per day, more years as a smoker, and older age when the women quit smoking. 

Current smokers were at an increased risk for rectal cancer, but not colon cancer, compared with never smokers. Secondhand exposure to cigarette smoke was not associated with either cancer.

"Our data add to the extensive evidence indicating that preventing smoking initiation and decreasing the duration of smoking might reduce colorectal cancer risk," the authors write.

This research was published recently in the Journal of The National Cancer Institute.