Saturday, 30 May 2015

The Neuropathic Origins Of Fibromyalgia

Today's post from (see link below) looks at fibromyalgia which is seen as a rheumatic complaint but has its origins in the spine and brain and is thus a central nervous system disorder. This is perhaps why so many people are confused as to whether it's a form of neuropathy or not. The things that set it apart from most neuropathic disorders are the symptoms which can occur anywhere in the body and are not typical neuropathy symptoms. It's a nasty complaint that can bring life-long pain but normal chronic pain relievers like opioids have no effect on fibromyalgia patients because opioids don't reduce over-activity in neurotransmitters in the brain. The advice is to integrate other medications often used with neuropathic complaints with cognitive therapy and stress reduction but it remains a problematic disease for both patients and doctors alike.

Fibromyalgia has central nervous system origins 
Date: May 17, 2015 Source:American Pain Society 

Fibromyalgia is the second most common rheumatic disorder behind osteoarthritis and, though still widely misunderstood, is now considered to be a lifelong central nervous system disorder, which is responsible for amplified pain that shoots through the body in those who suffer from it. Daniel Clauw, M.D., professor of anesthesiology, University of Michigan, analyzed the neurological basis for fibromyalgia in a plenary session address at the American Pain Society Annual Scientific Meeting.

"Fibromyalgia can be thought of both as a discreet disease and also as a final common pathway of pain centralization and chronification. Most people with this condition have lifelong histories of chronic pain throughout their bodies," said Clauw. "The condition can be hard to diagnose if one isn't familiar with classic symptoms because there isn't a single cause and no outward signs."

Clauw explained that fibromyalgia pain comes more from the brain and spinal cord than from areas of the body in which someone may experience peripheral pain. The condition is believed to be associated with disturbances in how the brain processes pain and other sensory information. He said physicians should suspect fibromyalgia in patients with multifocal (mostly musculoskeletal) pain that is not fully explained by injury or inflammation.

"Because pain pathways throughout the body are amplified in fibromyalgia patients, pain can occur anywhere, so chronic headaches, visceral pain and sensory hyper-responsiveness are common in people with this painful condition," said Clauw.

"This does not imply that peripheral nociceptive input does not contribute to pain experienced by fibromyalgia patients, but they do feel more pain than normally would be expected from the degree of peripheral input. Persons with fibromyalgia and other pain states characterized by sensitization will experience pain from what those without the condition would describe as touch," Clauw added.

Due to the central nervous system origins of fibromyalgia pain, Clauw said treatments with opioids or other narcotic analgesics usually are not effective because they do not reduce the activity of neurotransmitters in the brain. "These drugs have never been shown to be effective in fibromyalgia patients, and there is evidence that opioids might even worsen fibromyalgia and other centralized pain states," he said.

Clauw advises clinicians to integrate pharmacological treatments, such as gabapentinoids, trycyclics and serotonoin reuptake inhibitors, with nonpharmacological approaches like cognitive behavioral therapy, exercise and stress reduction.

"Sometimes the magnitude of treatment response for simple and inexpensive non-drug therapies exceeds that for pharmaceuticals," said Clauw. "The greatest benefit is improved function, which should be the main treatment goal for any chronic pain condition. The majority of patients with fibromyalgia can see improvement in their symptoms and lead normal lives with the right medications and extensive use of non-drug therapies."

Story Source:

The above story is based on materials provided by American Pain Society. Note: Materials may be edited for content and length.

American Pain Society. "Fibromyalgia has central nervous system origins." ScienceDaily. ScienceDaily, 17 May 2015. .

Friday, 29 May 2015

How Nerve Cells 'Map' Themselves

Today's post from (see link below) is a fascinating look at how nerve cells map their own position and either block or allow other embryonic nerve cells from moving into their right position in the nervous system. Apparently the axons have a lot to do with this (the axons are the 'wires' you see connecting one nerve to another in images of nerve cells) and act as corridors for both information and nerve development. If the axons are disrupted, it can lead to all sorts of conditions, due to nerve signals being diverted, or prevented from reaching their destination. It just shows how complex and amazing the nervous system is and highlights how little we appreciate how things get done in our bodies. The question is: although scientists can deliberately interfere with axons to prove a point, can they effectively repair them in the future so that normals nerve signals are restored to their normal function?

Nerve cells use each other as maps
Date:May 19, 2015 Source: Umeå universitet 


When nerve cells form in an embryo they don't start off in the right place but have to be guided to their final position by navigating a kind of molecular and cellular "map" in order to function properly. In a recent research study published in Nature Communications neurobiologist Sara Wilson, Umeå University, found that during embryonic development different parts of the nerve cell are important for guiding other nerve cells into their physical positions.

"We found nerve cells do this in two ways, either acting as barriers preventing cell bodies to move further than they need to, or by acting as guides opening a corridor that the cell bodies can travel along," she says.

The nervous system is analogous to a biological "computer" with different nerve cells forming connections that continuously send neural information around the spinal cord, brain and body and back again. Each nerve cell has a kind of "GPS coordinate" and exactly where nerve cells are physically located is very important so they can connect correctly with other nerve cells.

When nerve cells are in the wrong place neural information is not transmitted properly and it results in dysfunction and neurodevelopmental disorders such as lissencephaly, Kallmann syndrome and periventricular heterotopia. These misplacements can also happen in very common developmental disorders such as dyslexia and autistic spectrum disorders but it is not fully clear what role such misplacements play in these cases.

"Because nerve cell position is so important in normal nervous system function and dysfunction we wanted to find out how nerve cells position themselves in the first place. This study uncovered an exciting new mechanism for how this happens" Sara Wilson says.

Two of the main parts of a nerve cell are the central part (called the cell body) and a very long part like a "wire" (called the axon) that connects with and sends information to other nerve cells. It is important for both of these parts to be in the right place to get the nervous system to work properly.

The axons usually group together and form structures similar to corridors heading in a certain direction. Using genetic changes in mouse embryos to disrupt these axonal corridors (make them head in a different direction), her research group at Umeå Centre of Molecular Medicine, now at the Department of Molecular Biology, Umeå University, found that cell bodies from nerve cells also end up in the wrong place.

"This means the axons from some nerve cells are influencing the position of the cell bodies of other nerve cells meaning that the nerve cells are creating a "map" for other nerve cells to find their way" Sara Wilson says.

"This is the first time that axons have been shown to act as barriers and it could have important implications for understanding how the nervous system forms in all animals, including humans" Sara Wilson concludes.

Overall, this work and other work from the group focuses on understanding the mechanisms (genetic, cellular and molecular) of how the precise "anatomy" of the nervous system first forms and how that influences neuronal function and dysfunction. This basic science research has important medical implications for understanding the cause of some neurodevelopmental disorders: For example do the genes that are associated with such disorders generally control cell body guidance and is that what leads to dysfunction?

"It can also give clues as to how to grow axons during regeneration following damage or disease of the nervous system. Can we "force" regenerating neurons to connect properly? In the future, we plan to continue this basic research and find medical research teams to collaborate with to see if our findings are beneficial in these medical contexts" Sara Wilson says.

Story Source:

The above story is based on materials provided by Umeå universitet. Note: Materials may be edited for content and length.

Journal Reference:

Christophe Laumonnerie, Yong Guang Tong, Helena Alstermark, Sara I. Wilson. Commissural axonal corridors instruct neuronal migration in the mouse spinal cord. Nature Communications, 2015; 6: 7028 DOI: 10.1038/ncomms8028

Thursday, 28 May 2015

Good Shoes Are A Neuropathy Patient's Best Friend

Today's post from (see link below) talks once again about the importance of good shoes for neuropathy patients. We've said it before and we'll say it again, your feet have to carry you through life and if the nerves in the feet are damaged, it's vitally important that you find the best footwear you can afford to help them do just that. This article reinforces the message. These days, supportive footwear doesn't necessarily mean ugly and unfashionable - you need to look around and find what suits you best but you still always get what you pay for - buying the best you can afford will pay off in the long run.

The Importance of Great Shoes in Neuropathy Treatment Posted by john on September 24, 2012

The shape of your feet changes with age, swelling, as well as peripheral neuropathy.

Are your shoes supporting your feet properly?

One of the issues we see very frequently in the neuropathy patient is fitting shoes comfortably.

It is very easy to take for granted the role that proper footwear has on your level of comfort. That is of course unless you suffer from peripheral neuropathy.

There are all a whole host of other conditions that occur with neuropathy that can slow down or complicate recovery. This includes common things such as flatfoot or having conditions like plantar fasciitis.

There are however some very simple things you can do. Number one, visit a traditional foot and shoe store and have your feet properly measured.

The reason for this is the shape of your feet changes with age, swelling, as well as peripheral neuropathy. Muscle changes, which accompany neuropathy, are responsible for this.

The neuropathy patient should take advantage of the expertise of their clinician too. Ask questions about the most appropriate footwear for you. Learn some basics about proper shoe construction such as the shape of the last and the strength of the heel counter.

Sometimes, “diabetic” shoes better holds inserts, which your clinician may prescribe. These may also allow for better circulation and less neuropathy pain.

We find that many neuropathy patients have excellent relief by wearing running shoes most of the time. The reason for this is the combination of shock absorption and breathability is helpful for many patients suffering from peripheral neuropathy.

This is one area where consulting the properly trained neuropathy treatment specialist can be of huge benefit!

Do not ignore your shoes!

These are in fact the foundation of your daily recovery homecare programs and are very important in getting you active again, back on your feet!

You will also find our recent radio show on and the associated videos on http://YouTube.Com/NeuropathyDoctor very helpful.

Recover faster from your neuropathy treatment by wearing the very best shoes you can find!

Wednesday, 27 May 2015

Can Neuropathy Lead To Heart Failure?

Today's post from (see link below) may have you grabbing the phone to make a doctor's appointment straight away, so let's start with the disclaimer that the condition described in this article is very rare indeed! Not only that but heart failure due to neuropathy is only possible if you have autonomic neuropathy (you know, the sort that affects your involuntary functions, breathing, circulation, digestion, sexual function etc etc). The article (like so many) implies that this is only relevant for diabetes patients, which of course is not true (diabetes is the most common cause of neuropathy but there are 100 others!). Nevertheless, it does sound alarming and even logical that the nerve damage that affects so many bodily functions can also affect heart performance. If you have been diagnosed with autonomic neuropathy and are experiencing several of the symptoms associated with that form of neuropathy, you really need to make sure your doctor is aware of far reaching consequences and is taking the necessary steps to test for early warning signs. In this respect, you may need to take the discussion to him or her and not wait for the doctor to think of it. You may even need to be referred to a neurologist to check everything out but it's your body - if you're worried, you need to do something about it.

Ask D'Mine: When Neuropathy Can Kill
Written by Wil Dubois | Published on 09 May 2015

The prospect of diabetes complications can be scary indeed. In this week’s edition of our weekly diabetes advice column Ask D’Mine, our columnist Wil Dubois (himself a longtime type 1 who also works as a diabetes educator) offers some thoughts on killer neuropathy, following a troubling news report from overseas.

As our own Mike Hoskins read the news, he started worrying about what it could mean for his own life, so he’s reaching out to Wil himself today for some straight-up 411 on this topic.

Mike H, type 1 of DiabetesMine, writes:

Wil, I read an an article in a British newspaper recently, about a 41-year-old woman with type 1 who died one night while sleeping. She had been diagnosed a quarter-century ago, and was living with autonomic neuropathy. Her husband is quoted as saying she didn’t experience a heart attack or low blood sugar, which is what immediately came to my mind. Instead, a pathology report apparently confirmed that her autonomic neuropathy had “traveled to her chest and stopped her heart from beating in the night.”

WHAT?! I’ve been living with type 1 for many years now and am partially hypo unaware, so the thought of a severe hypo at night killing me is a big fear of mine. But I’ve never heard of this before! Yes, I’ve also lived with neuropathy in my feet and toes for about 10 years now... and I do realize there is more than one type of neuropathy. Still, should I be worried that this could happen to me??

Wil@Ask D’Mine replies: Advanced warning: This will be a downer of a column, filled with pain, despair, and death. We’re going to talk about an extreme complication of diabetes that’s rarely discussed, but may be frightingly more common than any of us wants to accept.

First, can neuropathy stop a beating heart? Yes. I’m sorry to say that it can. But to understand the mechanics behind the grim reaper’s scythe, you need to know a little more about how the heart beats and about the two flavors of neuropathy.

Oh God, where to start? I guess with the blue candle, which of course is a symbol in our D-community of lost loved ones. My condolences to British soccer player Stephen Reeves, the man who lost his T1 wife Louise (pictured) -- and on their wedding anniversary no less! As we say in this part of the world: Siento mucho, which translates to “I am so very sorry.”

Now on to neuropathy. Mike mentioned living with it in his feet and toes. We tend to use “neuropathy” almost like slang, but in most cases its proper name is diabetic peripheral neuropathy (DPN) because it’s the result of damage to the peripheral nerves. It’s caused by the corrosive effects of elevated blood sugars over time, and the best guess is that between 60 and 70% of all D-folks have some degree of peripheral neuropathy. In some people it causes a loss of sensation, and in others is causes phantom pain that ranges from hardly noticeable, to mildly annoying, to absolutely horrific.

DPN impacts us by hitting at how the brain communicates with our bodies through the so-called voluntary movements we make. If I reach out to take a drink of my cup of coffee, I’ve just used my voluntary nerves. I chose to make a movement and my brain sends messages, via assorted nerves, to the muscles in my arm, hand, and fingers to pick up the cup and move it to my mouth. It doesn’t take any particular degree of concentration to do this, but it does require conscious choice. It’s this voluntary system that’s damaged by peripheral neuropathy.

But that's not the only type of neuropathy, and the other type impacts all the things my brain controls in my body that I don't necessarily think about -- my lungs breathing, my stomach digesting, my sweat glads regulating temperature, and yes, my heart beating. That's run by what's called the autonomic nervous system, and that's what is impacted by Diabetic Autonomic Neuropathy -- or DAN as many in the medical profession call it.

DAN most commonly shows up as urinary or digestive issues, the inability to maintain body temperature, eye trouble, exercise intolerance, and crazy drops in blood pressure causing fainting spells. Oh yes, and “resting tachycardia,” when the heart rate explodes while doing nothing.

There’s more, too. Experts now speculate that “brittle” diabetes is caused by DAN, and even hypo unawareness may also be caused by DAN. Oh, grrrreat…

Hi, Dan, nice to meet you, you son of a bitch.

Can this get any worse?

Yes. A subset of DAN is known as CAN, or Cardiovascular Autonomic Neuropathy. This appears to be what got our D-sister in England. The nerves that ran her heart were damaged by her diabetes, ultimately leading to her heart simply not getting the message to keep beating. So it stopped.

Apparently, CAN is linked to a myriad of types of heart failure, with charmingly technical names like cardiac arrest, cardiac dysrhythmia, sudden cardiac death, painless silent ischemia, and the plain and simple “unexpected death.” Top cardiology experts are duking it out as to whether autonomic neuropathy is “causative” or merely a “contributing factor” but I’m not sure that really matters to us if it’s the bullet or the gun.

How common is this heart-stopper? That’s hard to say, and it depends on what group of PWDs you’re looking at, and what degree of automatic neuropathy you are testing for. In the best-case scenario, some established diabetes researchers think it affects only 2.5% of us. On the other hand, 90% of long-term type 1s on transplant lists have it. One large-scale study using heart-rate variability testing put the incidence at 25.3% of us T1s and 34.3% of our T2 cousins.

How serious is it? Well, don’t shoot the messenger, but if you have DAN, your risk of death is double that of D-folks who don’t have it. If you have CAN, your death risk is five times greater.

The onset of autonomic neuropathy and its deadlier subset are usually described as “slow and insidious,” and typically show up in the sixth decade of life. But not always, as another blue candle case study shows of one of our sisters who was only 26 years old when she succumbed to this complication.

So what is anyone doing about this? Well, interestingly, the American Diabetes Association recommends screening for DAN on diagnosis and annually thereafter for type 2s. For T1s, it suggests screening annually once you are five years post-diagnosis. These are the same intervals as for dilated eye exams, and for the same reason. Nerve damage takes some time to happen. With type 2s, the sugars have usually been elevated for a number of years prior to diagnosis, whereas type 1 comes on like a hurricane and at diagnosis the sugar hasn’t been out of whack long enough to have caused nerve damage.

Five years of diabetes is all it takes to cause damage.

Can it be treated? Not so much. It’s one of those treat-by-prevention kinds of complications, and the main thing is to do is to do your damnedest to control your blood sugar. That will help you avoid it, or keep it from getting worse if you already have it.

So what’s the take-away message from this depressing sermon? Should you be worried about this, Mike? Nah. I don’t think so.

First off, you could be the healthiest man in the world and a piece of Soviet-era space junk could fall out of the sky and squish you flat. Death comes to us all at some point. I think we should all do the best we can to keep as healthy as we can, but beyond that I think that worrying about the details is wasted energy.

To me, nothing changes with the new attention on autonomic neuropathy. As a person with diabetes I’ve known all along -- as should you -- that "heart stuff” will have a starring role on my death certificate. That’s the nature of diabetes. Now maybe there will be a new label for the same scythe of the grim reaper. Call it whatever type of heat failure you will, caused by neuropathy or something else, but in the end, does it really matter which?

Disclaimer: As mentioned way up above, this is not a medical advice column. We are PWDs freely and openly sharing the wisdom of our collected experiences — our been-there-done-that knowledge from the trenches. But we are not MDs, RNs, NPs, PAs, CDEs, or partridges in pear trees. Bottom line: we are only a small part of your total prescription. You still need the professional advice, treatment, and care of a licensed medical professional.

Tuesday, 26 May 2015

Transforming Blood Into Nerve Cells: Star Trek Or Reality?

Today's post from (see link below) sounds more Star Trek than scientific fact but nevertheless, scientists can now produce adult sensory nerve cells from blood samples taken from the patient. This means that they can 'manufacture' both central nervous system cells (brain and spinal cord) and peripheral nerve cells (rest of the body) from the patient's own blood. The implications of this sort of stem cell creation are staggering. In the future, damaged cells from either system may be able to be replaced by fresh cells without affecting the other system, thus leading to far less side effects. It also means that treatments in the future won't be just aimed at masking symptoms (as now happens) but essentially repairing the damage by replacing malfunctioning cells. Of course like so many of this type of discovery, we're still at the research and study stage but the initial breakthrough has been made and it's just a question of time before rejuvenated nerve cell treatment will replace opioids and the rest, without the associated consequences. Well that's the theory anyway! Worth a read.

Blood to feeling: McMaster scientists turn blood into neural cells
By Amanda Boundris Published: May 21, 2015

Scientists at McMaster University have discovered how to make adult sensory neurons from human patients simply by having them roll up their sleeve and providing a blood sample.

Specifically, stem cell scientists at McMaster can now directly convert adult human blood cells to both central nervous system (brain and spinal cord) neurons as well as neurons in the peripheral nervous system (rest of the body) that are responsible for pain, temperature and itch perception. This means that how a person's nervous system cells react and respond to stimuli, can be determined from his blood.

The breakthrough, published online today and featured on the cover of the journal Cell Reports, was led by Mick Bhatia, director of the McMaster Stem Cell and Cancer Research Institute. He holds the Canada Research Chair in Human Stem Cell Biology and is a professor in the Department of Biochemistry and Biomedical Sciences of the Michael G. DeGroote School of Medicine. Also playing a key role was Karun Singh, a co-author in the study and holder of the David Braley Chair in Human Stem Cell Research.

Currently, scientists and physicians have a limited understanding of the complex issue of pain and how to treat it. The peripheral nervous system is made up of different types of nerves — some are mechanical (feel pressure) and others detect temperature (heat). In extreme conditions, pain or numbness is perceived by the brain using signals sent by these peripheral nerves.

"The problem is that unlike blood, a skin sample or even a tissue biopsy, you can't take a piece of a patient's neural system. It runs like complex wiring throughout the body and portions cannot be sampled for study," said Bhatia.

"Now we can take easy to obtain blood samples, and make the main cell types of neurological systems — the central nervous system and the peripheral nervous system — in a dish that is specialized for each patient," said Bhatia. "Nobody has ever done this with adult blood. Ever.

"We can actually take a patient's blood sample, as routinely performed in a doctor's office, and with it we can produce one million sensory neurons, that make up the peripheral nerves in short order with this new approach. We can also make central nervous system cells, as the blood to neural conversion technology we developed creates neural stem cells during the process of conversion."

His team's revolutionary, patented direct conversion technology has "broad and immediate applications," said Bhatia, adding that it allows researchers to start asking questions about understanding disease and improving treatments such as:

Why is it that certain people feel pain versus numbness?
Is this something genetic?
Can the neuropathy that diabetic patients experience be mimicked in a dish?

It also paves the way for the discovery of new pain drugs that don't just numb the perception of pain. Bhatia said non-specific opioids used for decades are still being used today.

"If I was a patient and I was feeling pain or experiencing neuropathy, the prized pain drug for me would target the peripheral nervous system neurons, but do nothing to the central nervous system, thus avoiding non-addictive drug side effects," said Bhatia.

"You don't want to feel sleepy or unaware, you just want your pain to go away. But, up until now, no one's had the ability and required technology to actually test different drugs to find something that targets the peripheral nervous system and not the central nervous system in a patient specific, or personalized manner."

Bhatia's team successfully tested their process using fresh blood, but also cryopreserved (frozen) blood. Since blood samples are taken and frozen with many clinical trials, this allows them "almost a bit of a time machine" to go back and explore questions around pain or neuropathy to run tests on neurons created from blood samples of patients taken in past clinical trials where responses and outcomes have already been recorded".

In the future, the process may have prognostic potential, explained Bhatia, in that one might be able to look at a patient with Type 2 Diabetes and predict whether they will experience neuropathy by running tests in the lab using their own neural cells derived from their blood sample.

"This bench to bedside research is very exciting and will have a major impact on the management of neurological diseases, particularly neuropathic pain," said Akbar Panju, medical director of the Michael G. DeGroote Institute for Pain Research and Care, a clinician and professor of medicine.

"This research will help us understand the response of cells to different drugs and different stimulation responses, and allow us to provide individualized or personalized medical therapy for patients suffering with neuropathic pain."

This research was supported by the Canadian Institutes of Health Research, Ontario Institute of Regenerative Medicine, Marta and Owen Boris Foundation, J.P. Bickell Foundation, the Ontario Brain Institute and Brain Canada.

Study Article
Single Transcription Factor Conversion of Human Blood Fate to NPCs with CNS and PNS Developmental Capacity (Cell Reports)

      Monday, 25 May 2015

      Is Phenytoin A Safe Option For Neuropathic Pain?

      Today's post from (see link below)  follows up yesterday's post, in that it comes from the Wiley online library and looks at another anti-epilepsy drug that is being prescribed for neuropathic pain. Yesterday's post concerned Carbamazepine; today's concerns Phenytoin. It has to be said that the assessment stems from 2012 and doctors' opinions about Phenytoin may have changed since then. However, this blog has heard of patients being currently prescribed Phenytoin, possibly because their doctors are trying out alternatives within the same family as carbamazepine, or Lyrica (pregabalin). However, is this safe? This article found no studies to back up opinions one way or the other (in itself a bad sign) but does note that the side effects of Phenytoin shouldn't be underestimated. If you have been prescribed Phenytoin, it may be worth having another discussion with your doctor or specialist to discover whether it really is the best option for you.

      Phenytoin for neuropathic pain and fibromyalgia in adults
      Fraser Birse, Sheena Derry*, R Andrew Moore
      Editorial Group: Cochrane Pain, Palliative and Supportive Care Group
      Published Online: 16 MAY 2012
      Assessed as up-to-date: 4 APR 2012

      DOI: 10.1002/14651858.CD009485.pub2

      Copyright © 2014 The Cochrane Collaboration. Published by John Wiley & Sons, Ltd.



      Antiepileptic drugs have been used in pain management since the 1960s; some have shown efficacy in treating different neuropathic pain conditions. Phenytoin is an established antiepileptic drug that has been used occasionally to treat intractable trigeminal neuralgia.


      To assess the analgesic efficacy and adverse effects of the antiepileptic drug phenytoin in neuropathic pain and fibromyalgia.

      Search methods

      We searched the Cochrane Central Register of Controlled Trials (CENTRAL) (The Cochrane Library 2012, Issue 2), MEDLINE, and EMBASE to 28 February 2012, together with reference lists of retrieved papers and reviews, and

      Selection criteria

      We planned to include randomised, double-blind studies of eight weeks duration or longer, comparing phenytoin with placebo or another active treatment in chronic neuropathic pain or fibromyalgia.

      Data collection and analysis

      Two review authors would independently extract data for efficacy and adverse events, and examine issues of study quality.

      Main results

      We did not identify any studies that satisfied the inclusion criteria.

      Authors' conclusions

      This review uncovered no evidence of sufficient quality to support the use of phenytoin in chronic neuropathic pain or fibromyalgia.

      Plain language summary

      Phenytoin for neuropathic pain and fibromyalgia in adults

      Nerves which have been damaged by injury or disease can continue to produce pain. This type of pain is called neuropathic pain. Some antiepileptic medications can help neuropathic pain. Phenytoin is an antiepileptic medication, and the aim of this review was to assess how effective phenytoin is for neuropathic pain and fibromyalgia. We identified no good quality studies of phenytoin used in this situation. When used to treat epilepsy, phenytoin can cause potentially troublesome adverse events, affecting nervous tissue, the blood, and unborn children. Based on current evidence, phenytoin cannot be recommended for treating neuropathic pain. Other antiepileptic drugs such as pregabalin, gabapentin, and carbamazepine have been shown to be of value in neuropathic pain.;jsessionid=4448E010B2DE6127557095C833E897CC.f01t04

      Sunday, 24 May 2015

      How Effective Is Carbamazepine For Neuropathy Pain?

      Today's post from (see link below) is an objective assessment of the effects of carbamazepine on neuropathic pain and as such is always useful for neuropathy patients looking for confirmation that what they're being prescribed is what the doctor says it is. Carbamazepine has become increasingly popular recently, as an alternative to other anti-epilepsy drugs such as Lyrica, which has a possibly deserved bad press. However, does the research show that it works? This article suggests that it does...for some people but with caveats. Pretty much the same as all other drugs used to treat neuropathic pain then! Worth a read if you're on Carbamazepine, or likely to encounter it in the course of your treatment options.

      Carbamazepine for chronic neuropathic pain and fibromyalgia in adults 
      Philip J Wiffen1,*, Sheena Derry1, R Andrew Moore1,Eija A Kalso2,3
      Editorial Group: Cochrane Pain, Palliative and Supportive Care Group
      Published Online: 10 APR 2014
      Assessed as up-to-date: 7 FEB 2014

      DOI: 10.1002/14651858.CD005451.pub3

      Copyright © 2014 The Cochrane Collaboration. Published by John Wiley & Sons, Ltd.
      The Cochrane Library
      Read a clinical summary of this review on



      This is an update of a Cochrane review entitled 'Carbamazepine for acute and chronic pain in adults' published in Issue 1, 2011. Some antiepileptic medicines have a place in the treatment of neuropathic pain (pain due to nerve damage). This updated review considers the treatment of chronic neuropathic pain and fibromyalgia only, and adds no new studies. The update uses higher standards of evidence than the earlier review, which results in the exclusion of five studies that were previously included.


      To assess the analgesic efficacy of carbamazepine in the treatment of chronic neuropathic pain and fibromyalgia, and to evaluate adverse events reported in the studies.

      Search methods

      We searched for relevant studies in MEDLINE, EMBASE and CENTRAL up to February 2014. Additional studies were sought from clinical trials databases, and the reference list of retrieved articles and reviews.

      Selection criteria

      Randomised, double blind, active or placebo controlled trials (RCTs) investigating the use of carbamazepine (any dose, by any route, and for at least two weeks' duration) for the treatment of chronic neuropathic pain or fibromyalgia, with at least 10 participants per treatment group. Participants were adults aged 18 and over.

      Data collection and analysis

      Two study authors independently extracted data on efficacy, adverse events, and withdrawals, and examined issues of study quality. Numbers needed to treat for an additional beneficial effect (NNT) or harmful effect (NNH) with 95% confidence intervals (CIs) were calculated from dichotomous data.

      We performed analysis using three tiers of evidence. First tier evidence derived from data meeting current best standards and subject to minimal risk of bias (outcome equivalent to substantial pain intensity reduction, intention-to-treat analysis without imputation for dropouts, at least 200 participants in the comparison, at least 8 weeks' duration, parallel design), second tier from data that failed to meet one or more of these criteria and were considered at some risk of bias but with adequate numbers in the comparison, and third tier from data involving small numbers of participants that was considered very likely to be biased or used outcomes of limited clinical utility, or both.

      Main results

      Ten included studies (11 publications) enrolled 480 participants with trigeminal neuralgia, diabetic neuropathy, and post stroke pain. Nine studies used a cross-over design, and one a parallel group design. Most of the studies were of short duration, lasting four weeks or less.

      No study provided first or second tier evidence for an efficacy outcome. Using third tier evidence, carbamazepine generally provided better pain relief than placebo in the three conditions studied, with some indication of pain improvement over mainly the short term, but with poorly defined outcomes, incomplete reporting, and in small numbers of participants. There were too few data in studies comparing carbamazepine with active comparators to draw any conclusions.

      In four studies 65% (113/173) of participants experienced at least one adverse event with carbamazepine, and 27% (47/173) with placebo; for every five participants treated, two experienced an adverse event who would not have done so with placebo. In eight studies 3% (8/268) of participants withdrew due to adverse events with carbamazepine, and none (0/255) with placebo. Serious adverse events were not reported consistently; rashes were associated with carbamazepine. Four deaths occurred in patients on carbamazepine, with no obvious drug association.

      Authors' conclusions

      Carbamazepine is probably effective in some people with chronic neuropathic pain, but with caveats. No trial was longer than four weeks, had good reporting quality, nor used outcomes equivalent to substantial clinical benefit. In these circumstances, caution is needed in interpretation, and meaningful comparison with other interventions is not possible.

      Plain language summary

      Carbamazepine for chronic neuropathic pain and fibromyalgia in adults

      Neuropathic pain is pain coming from damaged nerves. It is different from pain messages carried along healthy nerves from damaged tissue (a fall, or cut, or arthritic knee). Neuropathic pain is treated by different medicines than pain from damaged tissue. Medicines like paracetamol or ibuprofen are not effective in neuropathic pain, while medicines that are sometimes used to treat depression or epilepsy can be very effective in some people. Our understanding of fibromyalgia (a condition of persistent, widespread pain and tenderness, sleep problems, and fatigue) is lacking, but fibromyalgia can respond to the same medicines as neuropathic pain.

      Carbamazepine was developed to treat epilepsy, but it is now used to treat various forms of chronic pain. We performed searches (up to February 2014) to look for clinical trials where carbamazepine was used to treat neuropathic pain or fibromyalgia. We found 10 studies involving 418 people involved in testing carbamazepine. Studies were not generally of very good quality. Most were very small, as well as of short duration. Studies lasting only one or two weeks are unhelpful when pain can last for years.

      There was not enough good quality evidence to say how well carbamazepine worked in any neuropathic pain condition. Pooling four small studies showed that it was better than placebo, but the result cannot be relied upon. There was not enough information from these studies to make any reliable comment on adverse events or harm.

      Carbamazepine is probably helpful for some people with chronic neuropathic pain. It is not possible to know beforehand who will benefit and who will not. 

      Saturday, 23 May 2015

      Still Waiting For Firm Evidence That Marijuana Helps Pain

      Today's post from (see link below) throws a cautionary note into the arguments concerning marijuana as an analgesic. As the article points out, much of the evidence showing the benefits of cannabinoids for pain patients is anecdotal and asks for more studies to provide much more hard evidence. It certainly seems that marijuana can be extremely helpful to patients with chronic nerve pain; everything points that way and there are thousands of examples of satisfied patients struggling against outdated lawgivers etc etc but it is true that we need as much hard evidence as possible to remove all shadow of doubt and in our current systems, that can only come from extensive studies and research by recognised medical bodies. The only way that we can prevent people from being criminalised for treating their pain, is providing irrefutable evidence, so let's get on with gathering that evidence as quickly as possible.

      Strong Evidence Still Lacking on Medical Marijuana for Pain
      Some Case Studies Show Efficacy, More Scientific Studies Needed

      Released: 15-May-2015

      Source Newsroom: American Pain Society more news from this source
      Contact Information Available for logged-in reporters only
      Citations American Pain Society Annual Scientific Meeting

      PNewswise — ALM SPRINGS, May 15, 2015 – With increasing numbers of chronic pain patients experimenting with marijuana to get relief, physicians need to learn more about the plant and its constituents to counsel patients appropriately about its safety and possible analgesic benefits, according to a leading medical marijuana researcher speaking today in a plenary session at the American Pain Society Annual Scientific Meeting,

      Mark Ware, M.D., executive director, Canadian Consortium for the Investigation of Cannabinoids and director of clinical research, Alan Edwards Pain Management Unit, McGill University Health Center, moved to Canada in 1999 following a court decision that legalized marijuana there. He had been working in Jamaica at a sickle-cell anemia clinic, where he encountered several patients who told him that using marijuana eased their pain. At McGill University, Ware evaluates claims from patients about the medical benefits of marijuana and is involved in research on the long-term safety of the plant in patients using it for chronic conditions.

      “Much of what we know about medical marijuana is anecdotal, so the challenge is to recognize that patients who say they get pain relief by self medicating with marijuana may be right, and move forward in conducting more scientific studies to better understand its analgesic benefits and overall safety,” said Ware.

      The New York Times has reported that worldwide some 15 trials of medical cannabinoids have been conducted. Results have shown effectiveness in reducing pain from neuropathy, diabetes and fibromyalgia.

      The FDA has approved two cannabinoid medications, dronabinal and nabilone. They are prescribed for controlling nausea and vomiting caused by chemotherapy and to treat anorexia in HIV patients. Other cannabinoid-based medications are under FDA review for treating cancer pain and other conditions.

      Ware said several challenges lie ahead for conducting marijuana pain studies. “With legalization of medical marijuana in more than 20 states, widespread access will yield more reports that need to be evaluated,” said Ware. “And, while it’s clear that large, Phase 3 clinical trials are needed to better understand medical marijuana’s potential clinical efficacy, who will pay for them and is it necessary to conduct trials for every pain condition that could be treated with marijuana?”

      Another obstacle for medical marijuana research, according to Ware, is lack of standardized products. “Plants grown in Colorado and other legalization states could be different, so when talking about cannabis in various states, there could be a variety of compounds,” he said. According to the National Institute on Drug Abuse, most marijuana used as medicine is the same quality and carries the same health risks as marijuana sold on the street.

      New studies also are needed to explore safety problems. “There are safety concerns about the molecule itself, and studies of recreational marijuana users show the drug can affect the brain and lungs. Questions also arise about smoking as a safe route of administration vs. oral dosing,” Ware stated.

      In states where medical marijuana is legal, physicians have discretion in advising patients about using it for pain management. “Doctors are being asked every day if using marijuana can lessen pain intensity,” said Ware. “Even though there are no efficacy and safety data from large controlled clinical trials, doctors interested in medical marijuana should learn about the plant itself and its myriad active ingredients by reviewing the scientific literature, understanding local legal issues and potential liability, and weighing the risks and benefits vs. other analgesics, including opioids.”

      About the American Pain Society

      Based in Chicago, the American Pain Society (APS) is a multidisciplinary community that brings together a diverse group of scientists, clinicians and other professionals to increase the knowledge of pain and transform public policy and clinical practice to reduce pain-related suffering. APS is the professional home for investigators involved in all aspects of pain research including basic, translational, clinical and health services research to obtain the support and inspiration they need to flourish professionally. APS strongly advocates expansion of high quality pain research to help advance science to achieve effective and responsible pain relief. For more information on APS, visit

      Friday, 22 May 2015

      Foot Neuropathy: A Doctor's Response

      Today's post from (see link below) is the initial conversation you would want to have with your doctor, if you turned up at the surgery with neuropathic symptoms. Unfortunately not all doctors are as clear as this during their consultation and many patients leave feeling confused and frustrated that they're not being told what's going on with their nerves. Communication is key with neuropathy. You need to get an umbrella view first and with that information in hand, move on gradually onto the treatment ladder. If you know of someone who is at their wits end as to what their problem is, show them this doctor's response - it's by no means comprehensive but at the beginning it doesn't need to be. At least the patient will have a good idea of what he or she is dealing with.

      Foot Neuropathy Isn't 'Major' Problem, but It Sure Can Hurt - Ask Doctor K by Anthony Komaroff Apr 17, 2015

      DEAR DOCTOR K: I have neuropathy pain in my feet. What can I do to relieve it?

      DEAR READER: Neuropathy, or nerve damage, is a remarkably common problem. I get asked lots of questions about it -- both from readers of this column and from readers of the Harvard Health Letter, which I edit. It isn't considered a "major" health problem by many doctors, because it isn't potentially fatal. But, like many other problems not labeled as major by doctors, it sure can make people miserable and interfere with their lives.

      Fortunately, there are several treatments that bring relief to most people who suffer with this condition. There are different types of neuropathy, but I'll assume you have the most common type, called axonal neuropathy.

      Neuropathy affects many of the nerves in your body. Each nerve is like a highway that connects your brain to the rest of your body. Signals from your brain travel down the nerves sending orders, such as the order for your muscles to move different parts of your body. Signals from your body travel up the nerves to your brain. When your fingers touch something, for example, signals from your fingers tell the brain how cold and how hard that thing is, and whether touching it causes pain.

      The longer a nerve is, the more likely it is to be affected by neuropathy. The nerves connecting your brain to your legs and feet are the longest, so the symptoms of neuropathy almost always begin in and are worst in the feet.

      The most common symptoms of neuropathy are numbness, burning, or unpleasant sensations that people have a hard time describing. The loss of sensation in the feet can cause problems with balance when walking. If you can't tell where your weight is being carried (is it on your heels or the balls of your feet?), your brain gets confused.

      Among the most common causes of neuropathy are diabetes, alcohol abuse, an underactive thyroid gland and some types of cancer chemotherapy. However, about one out of every four people with neuropathy has none of these known causes.

      If you have any of the known causes of neuropathy, the first thing to do is treat the cause. If you're diabetic, do everything you can to lower your blood sugar. If you drink too much, cut down. If you have an underactive thyroid, take your thyroid pills as directed and get regular thyroid blood tests.

      The most widely used medicines for reducing symptoms are an anticonvulsant -- either gabapentin (Neurontin) or pregabalin (Lyrica) -- and tricyclic drugs, including desipramine. Other anticonvulsants and drugs that decrease the number and severity of muscle spasms also can be helpful, including phenytoin, carbamazepine, topiramate and baclofen.

      Not all of these drugs help for everyone. But if you work closely with your doctor, the odds are good that you can find one that will give you considerable relief.

      Thursday, 21 May 2015

      The Major Challenges Of Neuropathy Diagnosis

      Today's post from (see link below) bemoans the lack of focus when it comes to neuropathy diagnoses. Patients are still far too often sent home with a vague assumption that they have neuropathy and are left frustrated by the 'learn to live with it and in the meantime take these drugs' approach. Similarly, diagnoses are often plain wrong because doctors won't go beyond the standard and generally less than accurate, testing procedures that have been around for decades. This article calls for a more rigorous approach to testing and better ways of informing the patient both about the disease and the options regarding treatment. This blog supports this view completely: neuropathy patients have been passive for far too long and have a right to a thorough analysis of their condition; no 'ifs' no 'buts' just honesty and the feeling that the specialist has done his or her best to get to the bottom of the problem and has the patient's best interests at heart.

      Peripheral Neuropathy – The Challenge  Author: Dr. Martin Rutherford, DC, CFMP
      Peripheral Neuropathy (P.N.) – burning, cramping, numbness, tingling, sharp pains in the feet and sometimes hands is becoming extremely common. A high percentage of cases can be reversed without surgery or medications. So it is still difficult to fathom the gauntlet a patient suffering from this condition must confront in an attempt to obtain a correct diagnosis or successful treatment.

      The medical literature contains abundance of peer reviewed studies cataloging the multitude of causes that create the above symptoms and awareness of the literature should result in a diagnosis of P.N. and its known cause. Indeed, the Contemporary Neurology Series- essentially the medical bible on such matters, in its peripheral neuropathy in chemical practice volume – which is distributed free to most neurologists and neurosurgeons – lists as many as 80 possible causes.

      Yet today the P.N. patient is still told “maybe you have P.N.” Tests for diabetes, spinal cord problems, or nerve entrapment in the ankle may or may not be run. If tests are run and are positive for one of these causes medical intervention into the diabetes or surgical intervention for the spinal cord or ankle problems may be performed. If these procedures are not effective (and this list includes post chemo peripheral neuropathy) the patient is regularly told its idiopathic (has no known cause) and you can take these medications for the rest of your life or you just have to live with it, or both. Huh??

      Let’s look at a recent case that entered our practice that is representative of the challenges faced by the average P.N. patient. 70 year old Caucasian male comes in with numb toes that he has been unable to move easily since 1998. He went to his PCP who sent him to a neurologist who told him “his nerve endings were dying.” No diagnosis was rendered. The patient researched the symptoms on his own and came to a self diagnosis of Peripheral Neuropathy. For the record, his diagnosis was correct. He developed further symptoms but his primary symptom was still numbness. His legs also felt like “big lumps”, and he currently feels like he is “walking on rocks”, which he described as being uncomfortable. This description of pain alone suggests three probable, separate, but simultaneous causes of his foot symptoms – all of which by the way are listed in the above mentioned medical neurology textbook series.

      He does not have diabetes but was started on Lipitor about the same time some of the symptoms started as he has “always had high cholesterol”. He has had his gallbladder removed and has several thyroid symptoms. He has chronic stomach problems which removing his gallbladder did not resolve. He also has restless leg syndrome (RLS). This was expressed as numbness, tingling, and pain and needles in his legs that made him need to move them at night so he could sleep. All of this history is significant.

      After a complete neurological and general systems history and examination was completed here’s what was found; His examination was suggestive of what is termed a distal symmetric polyneuropathy involving loss of all of the five different types of nerve endings in his feet. This cannot occur due to only one cause. The exam concluded that the spine, ankles, diabetes and/or chemotherapy were not among the causes for his P.N. It was ultimately found that the statin exposure (the Lipitor) was causing the “Restless leg” symptoms and he was referred back to his MD for this matter. Additionally, he also was found to have a gluten intolerance which can cause gluten related peripheral neuropathy and balance conditions about 8-11% of the time. This gluten intolerance by the way was also the cause of his “stomach” problems and unnecessary gallbladder removal. Two of the many causes of “distal symmetric polyneuropathy” (one of many types of neuropathy listed in the literature) are autoimmune diseases and thyroid conditions. This patient tested positive for two autoimmune diseases – Hashimotos – an autoimmune attack on his thyroid – and Celiac- an autoimmune attack triggered by gluten on his small intestines (remember the stomach problem?). He also had multiple additional food allergies, all of which were affecting his immune system which was in turn attacking and damaging his “nerve endings” and “causing them to die”. Many other causes- as per the medical model’s own literature- were ruled out with fairly minimal and cost effective blood salivary and urinary testing.

      Management of the above findings has resulted in a cessation of the patients declining symptoms and a symptomatic reversal of 50-70% of the symptoms to date. The patient is about 2/3 of the way through treatment and further progress is expected.

      This case is classic in its representation of the challenges the Peripheral Neuropathy patient faces in obtaining a specific diagnosis of the cause of his P.N. in the medical model. Or in this case, the challenges of obtaining a diagnosis of the multiple causes of his symptoms and/or condition, and obtaining a specific non- drug, non surgical solution to their problem.

      The lesson? If you’re told your P.N. is caused by diabetes, spinal, ankle conditions, or chemo and you haven’t responded to treatment for those diagnosis and you have been relegated to live with it, or with a lifetime drug regimen – find a certified Functional Medicine Doctor or a Board Certified Chiropractic Neurologist, or both in your area and get a full evaluation before giving up.

      Herskovitz, Steven, Stephen Scelsa, and Herbet Schaumburg. Peripheral Neuropathies in Clinical Practice. Pages 31-38 Oxford University Press. 2010 New York, New York

      Author: Dr. Martin Rutherford, DC, CFMP Dr. Martin Rutherford, DC, CFMP is a Certified Functional Medicine Practitioner and clinic director of Power Health in Reno, NV and author of the book Power Health - Back to Basics". For more information on Dr. Rutherford and his clinic visit

      Wednesday, 20 May 2015

      Motor Neuropathy: What's That?

      Today's short post from (see link below) may clear up some confusion among neuropathy patients, who hear various labels attached to their condition but aren't sure what they mean, or how they're different to other forms of neuropathy. In this case, if 'motor neuropathy' is your diagnosis then you may learn something by reading the definition described below. However, a diagnosis of motor neuropathy is just a beginning and you may need to press your doctor for much more information as your treatment begins and do your own research. You may also find that the term 'motor neuropathy' can also be called something else but bear in mind that motor neuropathy is different to sensory neuropathy, even if the symptoms are very similar. It's confusing and that's why information pieces like this one are useful.

      Motor Neuropathy 
      Motor neuropathy can most likely affect the hands, feet, legs and arms

      Motor neuropathy occurs if the motor nerves which control muscle movements become damaged.

      As with sensory neuropathy, the parts of the body most likely to be affected are the feet, hands, legs and arms.

      Motor neuropathy can affect our body's ability to co-ordinate movements, particularly with regard to walking which can lead to a form of foot deformity known as Charcot foot

      Symptoms of motor neuropathy

      The symptoms of motor neuropathy may include:
      Muscle weakness
      Loss of control of co-ordination
      Muscle twitching
      Muscle paralysis
      Complications of motor neuropathy

      Weakness in the muscles of the foot and loss of co-ordination can lead to unbalanced pressure being exerted on the ankle when we walk.

      People with neuropathy may not notice that they are walking differently as neuropathy often results in diminished sensitivity to pain.

      If unbalanced pressure is exerted over a period of time it can lead to sprains, which can go unnoticed in people with neuropathy.

      If further pressure is applied to the foot, through continued walking, this can lead to further bone dislocation and fractures, resulting in a deformation of the foot known as Charcot foot.

      Tuesday, 19 May 2015

      Celiac Disease Versus Neuropathy

      Today's post from (see link below) is a call for both celiac (gluten intolerant) and neuropathy patients to be screened for either or both diseases. This comes from the recent findings suggesting links between the two and is a bit of a hot topic on the neuropathy airwaves at the moment. The article does cast some doubt as to the true implications of the recent findings and the statistics do seem to suggest a fairly low incidence of cross-over diseases but so many people are claiming the benefits of gluten free diets for neuropathy patients that this sort of article is necessary to maintain balance in the argument.

      Celiac Tied to Neuropathy Risk
      Rates of nerve problems more than doubled in celiac patients.
      by Kristina Fiore Staff Writer, MedPage Today 05.11.2015 

      Action Points

      Patients with celiac disease are at increased risk for various types of neuropathy, with no gender difference.
      Patients with neuropathy are also at increased risk of future celiac disease diagnosis. 

      Patients with celiac disease may be at increased risk of neuropathy, Swedish researchers found.

      In a large population-based, case-control study, patients who had biopsy-confirmed celiac disease were 2.5 times more likely to be diagnosed with neuropathy, Jonas Ludvigsson, MD, PhD, of the Karolinska Institute, in Stockholm, and colleagues reported online in JAMA Neurology.

      "Given the autoimmune nature of celiac disease, our data reinforce the potential role of immunologic mechanisms for the development of neuropathy," they wrote.

      Celiac disease is an immune-mediated enteropathy that occurs in genetically susceptible patients as a result of sensitivity to gluten. Its estimated prevalence is 1% in the general population.

      Extra-intestinal neurology manifestations of celiac have been described in the literature, but there are few prevalence estimates of celiac-associated neuropathy, the researchers said.

      To determine that prevalence, as well as the relative and absolute risks of developing neuropathy in celiac disease patients, Ludvigsson and colleagues looked at data from 28,232 patients who had their celiac disease confirmed by a biopsy and compared them with 139,473 matched controls.

      They found that the absolute risk of neuropathy was 64 per 100,000 person-years in celiac patients within 1 year of celiac disease diagnosis, compared with 15 per 100,000 person-years for the general population.
      That corresponded with hazard ratio of 2.5 for later neuropathy diagnosis (95% CI 2.1-3.0, P less than 0.001). Risk remained similar when the analysis was controlled for a multitude of factors, including educational level, socioeconomic status, country of birth, type 1 and type 2 diabetes, autoimmune thyroid disease, rheumatologic diseases, pernicious anemia, vitamin deficiencies, and alcoholic disorders, the researchers wrote.

      Risk estimates for neuropathy were highest in the first year after celiac diagnosis (HR 4.4, 95% CI 2.67-7.4, P less than 0.001), but there was still a significantly increased risk of neuropathy after the first year of follow-up, they reported.
      There were no gender differences in neuropathy risk in celiac patients, they added.
      Ludgivsson and colleagues also examined subtypes of neuropathy and found an increased risk of the following types:

      Chronic inflammatory demyelinating neuropathy (HR 2.8, 95% CI 1.6-5.1, P=0.001)
      Autonomic neuropathy (HR 4.2, 95% CI 1.4-12.3, P=0.009)
      Mononeuritis multiplex (HR 7.6, 95% CI 1.8-32.4, P=0.006)

      However, there was no association between celiac disease and acute inflammatory demyelinating polyneuropathy, they reported.

      Ludvigsson and colleagues acknowledged that part of the increased risk of neuropathy may be due to surveillance bias, as physicians may be more likely to investigate patients with celiac for neuropathy. But they noted that the consistent excess risk of neuropathy, which lasted beyond 5 years after a diagnosis of celiac, makes that less likely.

      They concluded that the data "may also suggest that the two diseases may share risk factors or a common underlying etiology for the development of neuropathy, such as a potential role of immunologic mechanisms. The association between celiac and different types of neuropathy suggests that there may be specific underlying mechanisms that may lead to the predominance of one type of neuropathy compared with others."

      Based on their findings, they recommend that patients with neuropathy be screened for celiac disease.

      "Although absolute risks for neuropathy are low, celiac is a potentially treatable condition with a young age of onset," they wrote. "Our findings suggest that screening could be beneficial in patients with neuropathy."

      Monday, 18 May 2015

      Coping With Chronic Pain Symptoms, Family And Friends

      Today's valuable post from (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. 


      “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.