Saturday, 18 April 2015

Low Level Laser Therapy For Neuropathy: An Evaluation

Today's post from (see link below) looks at low level laser therapies  (a non-burning form of laser therapy) and the devices used to deliver them and asks how effective they really are. If you have neuropathy, you may have been tempted by advertisements promoting laser therapy or infra-red therapy for relief of neuropathic symptoms (especially, so-called anodyne therapy devices). You may have read about them, seen them in magazines or have had them recommended by clinics. However, you may be so desperately looking for relief that you don't look at things like this critically enough. The US FDA and Center for Medicare and Medicaid Services (CMS) do look carefully at these products however and conclude that there is very little evidence that they are truly effective in relieving symptoms of nerve damage. They may feel good, or bring temporary relief in certain areas but whether they have any long-lasting beneficial effect is open to debate. This article looks at the various options.

A Skeptical Look at Low Level Laser Therapy 
Stephen Barrett, M.D.This article was revised on February 2, 2015.

Low-level laser therapy (LLLT) refers to the use of a red-beam or near-infrared laser with a wave-length between 600 and 1000 nanometers and power from 5 to 500 milliwatts. Low-level lasers do not produce heat. In contrast, lasers used in surgery typically use 300 watts and burn the tissues they encounter. LLLT is also referred to as cold laser therapy, low-power laser therapy (LPLT), low-intensity laser, low-energy laser therapy, and monochromatic infrared light energy (MIRE) therapy. When administered to so-called "acupuncture points," the procedure may be called "laser acupuncture." The providers include physicians, chiropractors, physical therapists, and occupational therapists, but devices are also marketed for long-term use at home.

The use of LLLT was initiated in the 1960s by a Hungarian physician named Endre Mester. The devices have been advocated for use in wound healing; smoking cessation; tuberculosis; temporomandibular joint (TMJ) disorders; and musculoskeletal conditions such as carpal tunnel syndrome, fibromyalgia, osteoarthritis, and rheumatoid arthritis. The recommended dosage, number of treatments, and length of treatment vary from one device to another.

The U.S. Food and Drug Administration classifies LLLT devices as Class II devices as “lamp, non-heating, for adjunctive use in pain therapy” (produce code NHN). Between 2009 and 2009, 31 such devices received 510(k) clearance for marketing for temporary pain relief: Acculaser Pro Low Level Laser Therapy Device; Acculaser Pro4; Axiom Biolaser LLLT Series-1; Axiom Biolaser LLLT Series-3; Bioptron Pro Light Therapy System and Bioptron Compact Iii Light Therapy System; Diobeam 830; Elite Electromed L.I.T.E. 4/1; Erchonia EML Laser; Erchonia EML Laser; Erchonia Pl2000; Excalibur IV Light Therapy System Model SGEX4-001; Excalibur Light Therapy System Model SGLEX-04-001; GRT Lite Model 8-A; Lapex 2000; Lazrpulsr 4x; Ld-I 75 And LD-I 200; LEP2000 Therapy System; Lightstream Low Level Laser; Luminex LL Laser System; Medx LCS Laser Series; Microlight 830 Laser System; NMA 1052 Console System With NMA 100 Laser Accessory; Omega Excel/XP Laser System; Power Laser 90; QLaser System; Quantum Light Therapy System; Theralase TLC-1000 Therapeutic Medical Laser System; Thor DDII 830CL3 Laser System; and Trilumina Therapeutic Laser System. Most of the clearances were for symptoms related to wrist pain due to carpal tunnel syndrome, but a few mentioned temporary relief of muscle stiffness, minor arthritis pain, and/or temporary increase in local blood circulation.

The most aggressively promoted LLLT product appears to be the Anodyne Therapy System, which has professional and home versions. It is marketed by Anodyne Systems, LLC, of Tampa, Florida, which also has operated as Restoration Health. It is marketed for LLLT even though the FDA classifies it as an infrared heat lamp (product code LDY). The FDA cleared it (under the name Spectropad) in 1994 for "relief of minor muscle and joint pain and improvement of superficial circulation." However, for several years, the company's Web site suggested that it could do more. In 2005, after conducting an inspection, the FDA sent the company a warning letter stating:

Our inspection determined that your product labeling and internet website promote the Anodyne Therapy System for use in the treatment of wounds and ulcers, loss of protective sensation, gait and balance impairment, and other Diabetic Peripheral Neuropathy conditions, as well as conditions associated with Non-diabetic Neuropathies. Your company is also promoting the Anodyne Therapy System for the treatment of conditions including, but not limited to, soft tissue injuries, Carpal Tunnel Syndrome (CTS), and lymphedema. According to our records, however, you do not have marketing clearance from FDA to distribute into interstate commerce the Anodyne Therapy System for these uses.

. . . . Because you do not have marketing clearance from the FDA for these new intended uses, marketing the Anodyne Therapy System with these claims is a violation of the law [2].

Anodyne's Web site states its device is prescribed by more than 11,000 physicians and has been the subject of 19 published studies [1]. Studies also exist for a few other devices. The scientific consensus is that no LLLT has been proven more effective for pain than any other form of heat delivery. Some benefits have been reported, but the studies have been too small and/or too short to draw firm conclusions. The best-designed study of diabetic patients with sensory nerve impairment of the feet found that 90 days of Anodyne therapy at home brought about no more improvement in peripheral sensation, balance, pain, or quality of life than sham therapy [3].

Aetna, CIGNA, and the Center for Medicare and Medicaid Services (CMS), have published detailed critiques of Anodyne's data and other published studies and explain why they do not cover LLLT.
Aetna considers treatment with low-level infrared light (infrared therapy, Anodyne Therapy System) experimental and investigational for the treatment of acne, back (lumbar and thoracic) pain, Bell's palsy, central nervous system injuries, chronic non-healing wounds, diabetic peripheral neuropathy, ischemic stroke, lymphedema, neck pain, osteoarthritis, Parkinson's disease, retinal degeneration, and stroke . . . because of a lack of adequate evidence in the peer-reviewed published medical literature regarding the effectiveness of infrared therapy for these indications [4].

CIGNA concludes: Low-level laser therapy (LLLT) has been proposed for a wide variety of uses, including wound healing, tuberculosis, and musculoskeletal conditions such as osteoarthritis, rheumatoid arthritis, fibromyalgia and carpal tunnel syndrome. There is insufficient evidence in the published, peer-reviewed scientific literature to demonstrate that LLLT is effective for these conditions or other medical conditions. Large, well-designed clinical trials are needed to demonstrate the effectiveness of LLLT for the proposed conditions [5].

CMS has determined that there is sufficient evidence to conclude that the use of infrared devices is not reasonable and necessary for treatment of Medicare beneficiaries for diabetic and non-diabetic peripheral sensory neuropathy, wounds and ulcers, and similar related conditions, including symptoms such as pain arising from these conditions. Therefore, we are issuing the following National Coverage Determination. The use of infrared and/or near-infrared light and/or heat, including monochromatic infrared energy (MIRE), is not covered for the treatment, including symptoms such as pain arising from these conditions, of diabetic and/or non-diabetic peripheral sensory neuropathy, wounds and/or ulcers of skin and/or subcutaneous tissues in Medicare beneficiaries [6].

A few other insurance companies have published brief statements with the same conclusion.

At this writing, the bottom line appears to be that LLLT devices may bring about temporary relief of some types of pain, but there's no reason to believe that they will influence the course of any ailment or are more effective than other forms of heat delivery. 

Infrared therapy products. Anodyne Therapy Web site, accessed February 2, 2015.
Singleton, EK. Warning letter to Craig F. Turtzo, Dec 2, 2005.
Lavery LA and others. Does anodyne light therapy improve peripheral neuropathy in diabetes? A double-blind, sham-controlled, randomized trial to evaluate monochromatic infrared photoenergy. Diabetes Care 31:316-332, 2008.
Infrared therapy. Aetna clinical policy bulletin 0604, reviewed Sept 19, 2014. Aetna has additional information in its Clinical Policy Bulletin on Cold Laser and High-Power Laser Therapies.
CIGNA medical coverage policy: Low-level laser therapy. Revised, July 15, 2014.
Decision memo for infrared therapy devices (CAG00291N). Center for Medicare and Medicaid Services, Oct 24, 2006.

Friday, 17 April 2015

Home Doctors Need To Review Pregabalin (Lyrica) Prescription ASAP

Today's post from (see link below) is an interesting one because it illustrates the ongoing issues around patents, generic v brand name drugs and health authority finances. It concerns pregabalin (Lyrica), which many would argue is an inappropriate drug for certain forms of neuropathic pain anyway. (Pfizer themselves withdrew their own recommendation for Lyrica for diabetes and HIV-related neuropathy in May 2013 - should tell you enough). There have been law-suit issues and issues regarding severe side effects from Lyrica for years yet it is still widely prescribed for all forms of neuropathic pain. This article highlights the UK medical services' dilemmas regarding recommendation of generic pregabalin (cheaper) or the brand name version Lyrica, which is still under patent, though not for long. It's a political and financial problem that really has nothing to do with the patient unless the patient is being prescribed the wrong drug for their condition, which in the case of Lyrica, still widely happens. If your doctor prescribes Lyrica, it's always worthwhile starting a conversation as to whether that is the best option for you. The potential side effects are not to be underestimated, although that applies to many other 'neuropathic pain' drugs too.

GPs told to carry out review of patients taking pregablin 'as soon as possible' 
6 March 2015 | By Caroline Price

Exclusive CCGs will issue guidance to GPs instructing them to carry out an urgent review of patients taking pregabalin following a High Court ruling.

The guidance – which NHS England said CCGs must send out to all GP practices by today – advises practices they should review all patients on long-term prescriptions of pregabalin for neuropathic pain and make sure any on a generic version of the drug are switched to the branded form Lyrica.

In addition, NHS England said GPs should from now on make sure to stipulate Lyrica on any new prescriptions of pregabalin they write for patients being given the drug for pain.

GPs are free to continue prescribing generic versions of the drug for other conditions.

The move comes after a recent High Court ruling that the NHS should stop promoting generic pregabalin for neuropathic pain.

The guidance states: ‘When prescribing pregabalin for the treatment of neuropathic pain to patients you should (so far as reasonably possible): prescribe by reference to the brand name Lyrica and write the prescription with only the brand name “Lyrica” and not the generic name pregabalin or any other generic brand.

‘When prescribing pregabalin for the treatment of anything other than pain, you should continue to prescribe by reference to the generic name pregabalin.’

And in a ‘frequently asked questions’ document accompanying the advice, NHS England explains that for new patients the guidance should be implemented ‘immediately’ and ‘when reasonably possible’ for repeat prescriptions.

But leading GPs criticised NHS England’s response, arguing it was not GPs’ role to take action and that practices were too overloaded to take on the work.

Dr Andrew Mimnagh, NHS Sefton CCG lead on urgent care, said it was up to dispensing pharmacists to resolve the issue.

Dr Mimnagh told Pulse: ‘Asking me to change a prescription for non-clinical reasons is not part of my professional duty of care or contractual obligation – I am not a contracted dispensor.

‘It is my belief NHS England are using GPs as the no-cost errand boy to sort their problem out, without regard for the intolerable workload pressures decimating the profession.’

An NHS England spokesperson told Pulse: ‘The NHS is committed to ensuring the best outcome for every patient. The primary objective for this unique case has been to ensure that practitioners are aware of new guidance when dispensing certain pain medication. Information will be provided to CCGs outlining this advice.’

Drugs company Pfizer holds a ‘second medical use patent’ on pregabalin protecting its use in pain, although the basic patent has expired.

Pfizer said in a statement: ‘Pfizer is aware this is a relatively unusual exclusivity situation that has led to some confusion among prescribers and pharmacists. This is a legal matter not a clinical one. It is for this reason that we have been actively seeking to provide this essential guidance for prescribers and pharmacists by engaging with a broad range of stakeholders over the past six months, including the Department of Health, commissioning bodies, pharmacy associations as well as NHSE and other NHS devolved bodies.’

It continued: ‘In line with the measures sought by Pfizer to help prevent infringement of the pain patent, NHSE issued guidance on 27 February 2015 for prescribers via Clinical Commissioning Groups (CCGs) and pharmacists via NHS Business Services Authority (BSA) that directs the prescription and dispensing of Lyrica®, by brand name only, when pregabalin is used for the treatment of neuropathic pain. The NHSE guidance issued on Friday 27 February requests that the CCGs and NHS BSA distribute the notice on or before Friday 6 March 2015.’

The statement added: ‘The patent at issue, EP (UK) 0934061, expires in July 2017. A full hearing on the infringement and validity of the patent is scheduled to begin on 29 June 2015. Pfizer takes no issue with the supply of generic pregabalin products for use in the treatment of epilepsy or generalised anxiety disorder.’

Vinci Ho | GP Partner | 06 March 2015 5:20pm

These are the words in NHSE guidance:

''If treating neuropathic pain, prescribe Lyrica (brand) due to patent protection. For all other indications, prescribe generically.”

Thursday, 16 April 2015

Neuropathic Pain: A Clinical Review

Today's post from the UK site (see link below) is an article we may all benefit by reading because it's up-to-date and not reliant on the same information presented a decade ago. However, the problem for most readers is that the article is aimed at other health professionals who already have a knowledge base concerning nerve problems and is somewhat technical and complex as a result. Don't let this put you off. If you have the time and really want to learn more about neuropathy treatment, it may be worth while investing some time and by Googling all unfamiliar terms, you will find that your understanding of neuropathy increases dramatically. However, if that's not practical in your busy lives, then there are many other, somewhat 'easier' articles about neuropathy treatment to be found by using the search facility to the right of this blog. Understanding your condition is half way to learning how to live with it.

Clinical Review: Neuropathic pain
By Dr Louise Lynch on the 3 April 2015 

Neuropathic pain is a localized sensation of unpleasant discomfort caused by damage or disease.

A patient who has NP may present with numb or painful feet (SPL)

Section 1: Epidemiology and aetiology

Neuropathic pain (NP) has been defined by the International Association for the Study of Pain as pain arising as a direct consequence of a lesion or disease affecting the somatosensory nervous system.1

It is recognised as distinct from nociceptive pain.

Models of pathophysiology

Nerve damage sets in motion multiple complex, pathophysiological mechanisms, leading to the development of NP.

Changes in receptor channels located in nerves and the spinal cord, and changes in chemical levels in the peripheral nervous system (PNS) and the CNS have been identified, but mainly in animal models.

These do not entirely reflect the human situation, but give some insight into pathophysiological processes and suggest molecules that may modify these processes, which might result in the development of analgesics usable in humans.

The processes result in peripheral and central sensitisation of the nervous system and ultimately, NP.

Peripheral sensitisation

Structural changes have been found in neuronal sodium channels, for example, from rat models in which sciatic nerves have been damaged.

These changes result in functional changes, easily demonstrated by electrophysiology.

Reduced firing thresholds, higher firing frequencies and more rapid recovery from inactivation lead to changes in nerve activity, such as continuing spontaneous activity, abnormal excitability and increased sensitivity to chemical, thermal and mechanical stimuli. This is an example of peripheral sensitisation.

Central sensitisation

One factor involved in central sensitisation is the activation of NMDA receptor channels by repetitive painful stimulation.

This results in facilitated transmission of pain signals or 'wind-up'. Combined with altered functioning in some spinal cord neurones and central structures, this leads to central sensitisation, when incoming signals are misinterpreted as painful (allodynia) or more painful than they actually are (hyperalgesia).

The prevalence of NP is 6-8% in the general population,2 but associated factors are advancing age, female gender and lower socioeconomic groups. It is more common in certain conditions, such as diabetes (16-26%) and shingles (8-19%).

The most common causes are radicular pain from spinal pathology or after trauma or surgery.

Section 2: Making the diagnosis

The diagnosis of NP is made by taking a careful clinical history and by examination.

Certain key features in the patient's description of their pain and the clinical examination will lead to a diagnosis of NP.

The diagnosis may be supported by the use of validated tools to assess NP, for example, the Leeds Assessment of Neuropathic Symptoms and Signs (LANSS)4 or the painDETECT5 questionnaires. These tools have about 80% accuracy.

Clinical features

A patient will describe pain arising from an area of altered sensation, which may feel numb or be hyperexcitable. There is often an element of spontaneous unprovoked pain and there may also be abnormal responses to both painful and non-painful stimuli.

Sometimes patients are uncomfortable describing the abnormal sensations they experience and quite colourful descriptions may ensue.

Sensations have been described as 'spiders walking up my legs wearing hobnail boots', 'like shards of glass under my skin' and 'like water trickling down the inside of my skin'. Other descriptions include burning, tingling, lancinating and numb.

Autonomic dysfunction can be associated with NP and patients may describe skin temperature changes, sweating or hair and nail changes. Motor weakness and muscle wasting can accompany other symptoms.

Clinical examination must include comparison of the affected area with an unaffected adjacent or contralateral site, and a thorough neurological examination.

Allodynia is pain evoked by a stimulus that is not normally painful, such as stroking the skin with cotton wool. A patient with allodynia may have extreme discomfort from the light touch of clothing.

Hyperalgesia is a response of exaggerated severity following a noxious stimulus and can be elicited using a blunt pin.


Depending on the nature of the problem, tests may include neurophysiology, MRI and blood tests.

For a patient presenting with numb, painful feet, simple blood tests for diabetes, TFTs and vitamin B12 levels would be a good start, with nerve function tests to confirm the nature of the neuropathy. Any further investigation can be arranged by the neurology department. 

Section 3: Managing the condition

It is important to remember that chronic pain of any kind is a complex bio-psycho-socio-cultural phenomenon and therapeutic strategies may need to address every aspect.

A tailored, multimodal management plan might include pharmacological and non-pharmacological strategies, the aim being to manage, rather than cure, the pain and to preserve function.

Physiotherapy can be essential in addressing functional compromise and specialist physiotherapy may offer particular techniques, such as mirror box work for phantom limb pain or CRPS. TENS and acupuncture may be worth trying.

Psychological therapies include a range of behavioural and cognitive interventions, with the aim of providing additional coping strategies and addressing any less helpful thought processes and ideas the patient may have. Examples are CBT, acceptance and commitment therapy, and mindfulness.

NICE has issued guidelines on the pharmacological management of NP in primary care.6

Careful patient counselling and regular clinical review are recommended, to facilitate dose titrations as well as to assess effectiveness, tolerability and adverse effects.

Slow titrations of low doses of drugs are best tolerated, but therapeutic doses may take weeks or months to achieve and patience is often necessary.

A specialist pain clinic will be able to advise on other medication, including neuropathic agents and opioids. It may also offer invasive therapies, such as nerve blocks or neuromodulation.

Neuromodulation techniques include spinal cord stimulation systems and intrathecal drug delivery systems for refractory cases.

Ablative procedures may sometimes be offered, such as cordotomy for cancer pain and chemical sympathectomy for vascular pain.

Neurosurgical techniques include microvascular decompression for trigeminal neuralgia and dorsal root entry zone lesions for brachial plexus avulsion injuries.

NICE recommendations

The NICE guidelines 6 for pharmacological management of NP in the non-specialist setting were published in November 2013 and are due for review in December 2015.

They recommend offering a choice of four drugs - amitriptyline, duloxetine, gabapentin or pregabalin - except for patients with trigeminal neuralgia, when carbamazepine is advised. If one drug is not tolerated or is ineffective, another should be chosen from the list.

Tramadol is advised only for acute rescue therapy.

Capsaicin cream can be considered for patients with localised NP who wish to avoid or cannot tolerate oral medications. No other drugs are recommended, unless advised by a specialist unit.

NICE recommends referring patients to a specialist pain clinic or other condition-specific service if the pain is severe or lifestyle limiting, or their underlying health condition is deteriorating.

There are guidelines for the management of CRPS7 and NICE has also published guidelines for spinal cord stimulation in NP.8

Specialist advice
The relevant specialty - neurology, chronic pain management, rehabilitation and neurosurgery - should be able to advise on management. Referral to a tertiary centre may sometimes be useful - there are specialist centres for facial pain, for example.

Section 4: Prognosis

Neuropathic pain is commonly permanent and the aims of treatment are to manage, rather than cure, the pain, and to preserve function.

Regular follow-up to monitor pain and function is essential. Identifying problems and instituting management early give a greater chance of efficacy. Managing underlying conditions, such as diabetes, can prevent progression of symptoms.

New treatments

Tapentadol, which is licensed for diabetic peripheral neuropathy, may have a role in other NP conditions. It is more potent than tramadol, but with fewer side-effects than the strong opioids.

Although 8% capsaicin patches have been available for years, they are not widely used. Capsaicin binds selectively to transient receptor potential vanilloid type 1 receptors on pain and temperature neurones. This activates a calcium channel (normally heat activated, hence a common sensation of burning).

The influx of calcium inactivates the nerve and leads to depletion of the pain neurotransmitter substance P. Patches are only suitable for well-defined areas of NP, but can provide three months of pain relief.

Spinal cord stimulation is a developing area of chronic pain management and has been used very successfully in some types of NP, such as failed back surgery syndrome and CRPS, which are now recognised indications for considering the procedure.

Current systems involve implanting epidural electrodes and using low-frequency (tingling) stimulation or burst stimulation, or high- frequency (imperceptible) stimulation. A dorsal root ganglion electrode can be hooked around a single or multiple nerve roots and cover an area of hand or foot pain. Sacral electrodes target pelvic pain.

Peripheral nerve stimulation techniques are also being developed. Occipital electrodes are being used for headaches and occipital neuralgia.

In future, electrode systems may be able to cover individual nerves.

Section 5: Case study

A 50-year-old woman presented to her GP two weeks after a fall and a minor shoulder injury.

Her shoulder pain continued after physiotherapy, anti-inflammatories, weak opioids and paracetamol. Her GP referred her to the musculoskeletal service, which organised an ultrasound scan of her shoulder. This was reported as normal.

She was then referred for orthopaedic review. By the time she attended the orthopaedic clinic, her pain had spread to the whole arm and hand, but the hand had become numb and sore to touch. The arm was swollen, shiny and cold, as were the fingers, which were stiff.

The possibilities of thoracic outlet syndrome and CRPS were considered. MRI scans of the cervical spine and the thoracic inlet were unremarkable, and the patient was referred to the pain clinic.

On initial assessment, her pain symptoms had become focused in the hand, which was swollen, white, cold and hairless, with evident muscle wasting and fingers held in partial flexion. Allodynia and hyperalgesia were noted on sensory testing in the hand and variably up the arm. A diagnosis of CRPS type 1 was made.

The patient had a series of stellate ganglion blocks and was referred to a specialist physiotherapist for mirror box work. The blocks were helpful in terms of pain management, but her fingers became progressively more stiff and difficult to straighten.

She was listed for a guanethidine block with prilocaine in an attempt to overcome this. This was temporarily helpful and she was able to straighten and move her fingers with the aid of physiotherapy.

Ten months later, she had developed fixed flexion deformities of all of her fingers, with established symptoms and signs of CRPS.

A high-frequency spinal cord stimulator was implanted shortly after this.

Over the ensuing months, her pain has largely resolved and the obvious features of CRPS have disappeared, except for the fixed flexion deformities of the fingers, which remain.
Section 6: Evidence base

Clinical trials

Moore R, Wiffen PJ, Derry S et al. Gabapentin for chronic neuropathic pain and fibromyalgia in adults. and-fibromyalgiain-adults
Moore RA, Straube S, Wiffen PJ et al. Pregabalin for acute and chronic pain in adults. SYMPT_pregabalin-for-acute-and-chronic-pain-in-adults
Saarto T, Wiffen PJ. Antidepressants for treating neuropathic pain. SYMPT_antidepressants-for-treating-neuropathic-pain
Toth C. Pregabalin: latest safety evidence and clinical implications for the management of neuropathic pain. Ther Adv Drug Saf 2014; 5(1): 38-56.
Contributed by Dr Louise Lynch, consultant in chronic pain management at Leeds Teaching Hospitals NHS Trust.

NICE. Neuropathic pain - pharmacological management: the pharmacological management of neuropathic pain in adults in non-specialist settings. CG173. November 2013.
RCP. Complex regional pain syndrome in adults. UK guidelines for diagnosis, referral and management in primary and secondary care. 2012.
NICE. Spinal cord stimulation for chronic pain of neuropathic or ischaemic origin. TA159. London, NICE, October 2008.


International Association for the Study of Pain.
Patient UK.


1. Treede RD, Jensen TS, Campbell JN et al. Neurology 2008; 70: 1630-5.

2. Torrance N, Smith BH, Bennett MI et al. J Pain 2006; 7: 281-9.

3. Baron R. Nat Clin Pract Neurol 2006; 2: 95-106.

4. Bennett M. Pain 2001; 92: 147-57.

5. Freynhagen R, Baron R, Gockel U et al. Curr Med Res Opin 2006; 22: 1911-20.

6. NICE. CG173. London, NICE, November 2013.

7. RCP. Complex regional pain syndrome in adults. UK guidelines for diagnosis, referral and management in primary and secondary care. London, RCP, 2012.

8. NICE. TA159. London, NICE, October 2008.

Wednesday, 15 April 2015

How Do They Normally Treat Neuropathic Pain?

Today's post from (see link below) covers many of the ways neuropathy is currently treated and is written by renowned neuropathy patient LtCol Eugene B Richardson. It is full of useful tips and various truths your doctor may not tell you. It is one man's opinion (backed up with useful references) but as you may already have discovered, an experienced neuropathy patient is often the best source of advice. He also states that many treatments work differently for different individuals and that is very important to realise because neuropathy rarely follows patterns of behaviour or response. Certainly worth a read.
How is Neuropathic Pain Treated? 
 LtCol Eugene B Richardson, USA (Retired) BA, MDiv, EdM, MS

Neuropathic pain does NOT respond to ‘normal’ pain medications.

Pain signals from an external stimulus like a cut or from an internal broken bone are treated with many well-known treatment options for pain.

Pain signals from damaged nerves which send real, but faulty signals to the brain must be treated with other options which currently are limited until research provides more options at the clinical level.

One of the most dangerous aspects of treating your pain OR symptoms in a neuropathy, is the concern that either you or the doctor will then ignore the CAUSE or TYPE of your neuropathy. Knowing the TYPE can often point to a possible treatment and NEVER accept a diagnosis of idiopathic as it adds nothing but confusion. Treating pain is to treat a symptom, but medical care must go beyond the symptoms in working with the neuropathy patient.. To understand the problem with a diagnosis of ‘idiopathic’ click here:

Drug Options

The majority of patients with neuropathic pain are currently treated with two classes of medication.

The anti-depressants and the anti-seizure medications either alone or in combination work for many patients to reduce such pain. Some of these options would include Nortriptyline in the first class and Lyrica in the second class. Speak to your doctor about the options, but recommend that you first consider the anti-depressants as these may have less side effects. Both the anti-depressants and anti-seizure medications reduce neuropathic pain, even if medicine is not totally sure why they work. This information is from the book by Norman Latov, MD PhD of Weill Medical College, Cornell University in his book for patients listed in our RESOURCE tab. (Ref: #4)

The one issue that is new is that the use of the drug Cymbalta for a protracted time period, as it has been reported that upon withdrawal from the drug there may be serious problems according to one recent news article on the subject. I personally think anyone who has taken the drug Cymbalta may want to speak to the doctor about this issue and speak to them about the use of Nortriptyline as an alternative. (Nortriptyline is an older drug with a proven track record and taken at night it helps you sleep!).

Most patients get about 85% relief and a few are lucky with 100% relief, but until there are better medications developed by research, we are fortunately to have these options.

Dr. Latov (Ref: #1) speaks of these and other medications and they do help many neuropathy patients. However, like all medications sometimes the side effects are worse than the symptoms. Each patient must decide if they are worth using if the pain is only at the nuisance level. The dosage and the combinations of these medications must be worked through by the patient with the doctor in a patient doctor partnership of trial and error. As of now, I know of no other way to find what works for you.

Other patients have been prescribed Lidocaine patches for burning pains as noted by Dr. Latov and patients report that these help reduce the burning.

I have found that the burning sensations respond best to compounded topical creams and not to the oral medications. Compounded topical creams are being prescribed more often by doctors and the benefit is the absorption into the blood is limited and it tends to stay concentrated to the area you need it the most according to Neurologist Corey Hunter (Ref: #4). Some of the ingredients physicians use in these compounds includes Lidocaine, Ketamine, Gabapentin, and Amitriptyline, mixed by a compounding pharmacy in percentages as prescribed by the physician.

For patients with an immune mediated neuropathy the use of intravenous immune globulin (IVIg) has been very effective in reducing pain in sensory neuropathies while providing more muscle strength in motor neuropathies and protecting the nerves from more damage. It works! See patient IVIg experience click here:

2015 Update on Promising Research: The Foundation for Peripheral Neuropathy in their E News March 2015, noted in a follow up of reported 2013 research a report published in the Annals of Clinical and Translational Neurology and Science Daily, noted that with “two low dose rounds of non-viral gene therapy called VM 202 patients had significant improvement of their pain that lasted for months!

“Those who received the therapy reported more than 50 percent reduction in their symptoms and virtually no side effects,” said Dr. Jack Kessler, lead author of the study. “Not only did it improve their pain, it also improved their ability to perceive a very, very light touch.

“VM202 contains human hepatocyte growth factor (HGF) gene. Growth factor is a naturally occurring protein in the body that acts on cells, in this case nerve cells – to keep them alive, healthy and functioning. Future study is needed to investigate if the therapy can actually regenerate damaged nerves, reversing the neuropathy.

“Patients with painful diabetic neuropathy have abnormally high levels of glucose in their blood. These high levels of glucose can be toxic.

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

“Right now there is no medication that can reverse neuropathy,” Kessler said. “Our goal is to develop a treatment. If we can show with more patients that is a very real phenomenon, then we can show we have not only improved the symptoms of the disease, namely the pain, but we have actually improved function.”

“A future, much larger phase three study will soon be underway. To read the full article Neuropathy: Relief for diabetics with painful condition. ” 

What about muscle cramps?

Muscle cramps are common in neuropathy patients. It is always a good idea to report such muscle cramps to your doctor and determine if it is indeed related to your neuropathy or other conditions. Levels of potassium, calcium, salt, and other substances critical to proper function of muscles may need to be tested to see if they are low.

Other patients have had levels of potassium, calcium, salt, and other substances critical to proper function of muscles tested to see if they are low. Then have the doctor prescribe a supplement at the correct dosage for you.

If you take a diuretic, muscle cramps are common and may require supplements, so speak to your doctor.

Patients have found that eating a banana at night keeps the cramps away, or eating a Tum to increase calcium, or eating salty olives or pickles if your salt levels are low work.

Some neuropathy patients have noted that the drug Venlafaxine resolves restless leg syndrome and the associated leg cramps. Dr. Levine states that this drug changes the levels of serotonin and norepinephrine (two neurochemicals) in the spinal cord and can be effective in patients with neuropathy. 

What About Exercise?

Did you know that the wrong type of exercise will force damaged nerves to work and increase the pain! See article at:

How should a neuropathy patient exercise? Consider ordering a copy of the brand new DVD from Matt Hansen the expert as his perspective on exercise for neuropathy is perfect and understands what we can and cannot do. Yet Matt makes it possible for us to exercise WITHOUT the increase in neuropathic pain, keeping muscles as strong and flexible as possible. To see article on DVD click here: When ordering enter the special code NSN 10 and Matt will give 10% of your purchase price back to support the work of the NSN!

If you want a complete discussion of medicines for the treatment of neuropathic pain, read the book by Dr. Latov.

Other options

Dr. Latov in his book and many neuropathy patients have reported reducing pain by the use of minerals such as Alpha Lipoic acid (600 to 800 mg) especially pain from diabetic neuropathy. Research suggests that vitamin C is important to protecting nerve cells and the lack of vitamin E can actually cause neuropathy as noted by Dr. Latov.

You see many ads for B supplements in what I call a shotgun approach to the B vitamins. For me it is like shooting a mass of vitamins at an unknown target! We know that a shortage of certain vitamins, especially the E and B vitamins, is known to cause neuropathy. Yet too much B6 can cause it! I like the suggestion of Dr. Latov that the patient have such levels tested (see his book for specific information) to determine any shortage and then treat the identified target rather than using a radium shotgun blast at an unknown target!

Good nutrition is very important for everyone, but it is especially important for neuropathy patients. Why? First good nutrition helps protect and heal the nerves. Secondly, the lack of essential vitamins can cause neuropathy according to Dr. Latov! Neuropathy caused by long term alcohol abuse may be due more too poor nutrition than the alcohol. Read his book.

In the book by Mims Cushing’s, (Ref: #2) patients report that another helpful option is to soak your feet in cold tap water for 15 minutes before going to bed. The cooler water helps by calming the nerves. DO NOT USE FREEZING ICE WATER as with sensory neuropathy this could cause damage to the skin. For those with the sensation of very COLD feet, these patients have found that doing the same with warm tap water (NOT HOT) has a soothing effect.

Acupuncture has been shown to be effective for pain reduction in some patients and this is supported by small studies showing its effectiveness.

Again, it is what works for you in treating the strange effects of neuropathic pain from damaged peripheral nerves.

A Word About PODS (Postural Orthostatic Tachycardia Syndrome)

Do you know how many times over the past 40 years I was sent to the Cardiologist because ‘I was having a heart attack’ only to be told my heart was fine and ask, ‘Why was I here?’ The Tachycardia (silent as I did not feel it), was never understood or recognized. It was often not even related to standing as I has been assumed. Having been diagnosed with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), Small Fiber Neuropathy (SFN) and with symptoms of Autonomic Neuropathy, it was a reality for me, but eventually this symptom went away while others were reduced when I began IVIg.

The relationship of the symptoms to Small Fiber Neuropathy was noted in a February/March 2015 Article in Neurology NOW (Ref #6) among other neurological issues. The article notes that there are significant disagreements in the scientific community about what drives POTS or even what symptoms are related to PODS. Symptoms related to PODS in this article include dizziness, lightheadedness, palpitations, near fainting upon standing and unrelated to standing the symptoms noted are fatigue, nausea, autonomic systems, fibromyalgia, and others often connected to several forms of neuropathy.

While prognosis is unpredictable, research in a 2013 large study from the Mayo Clinic presented at the 24th International Symposium on the Autonomic Nervous System noted that 18.2% of patients noted complete resolution of symptoms , while 52.8% reported improved but persistent symptoms two to 10 years after diagnosis.

Several suggestions were made in the Neurology NOW article to alleviate POTS including the simple idea of (1) drinking more water especially with increases in sodium. This simple solution helps expand blood volume and increase blood flow, but it may not work for some people; (2) appropriate exercise (see exercise DVD information noted above) to prevent blood from pooling in the lower extremities and other benefits gained from even low impact exercise.

Until more research confirms what is driving this REAL disorder and the related symptoms, patients just must find ways to cope and live around the illness.
DVD and the Behavioral Sciences

In this regard, remember what I have taught in the DVD “Coping with Chronic Neuropathy”. How you THINK about something, will affect your FEELINGS, which will in turn effect or influence your BEHAVIOR. It you think something is horrible, your feelings will be one of despair and your actions will reflect a sense of defeat. Always try to turn this around to a positive thought, however difficult it may be! It works.

You may also want to find a good psychologist or trained counselor, to explore cognitive therapy as in biofeedback or relaxation techniques, visualization techniques, or a trained specialist in healing arts such as yoga or ta-chi, to find ways to utilize your body’s ability to increase natural chemicals (serotonins) which we know reduce pain. Never underestimate the body’s ability to seek balance and healing.

Soothing music or sounds are a well-known way to relax and improve the body’s response to pain and there are music tapes or even therapists to help. This is why the noise of a water fall or watching a fish tank is so relaxing and healing.

Periods of slow deep breathing together with soft music or other relaxing sounds can be very helpful. Combine this with favorite images such as rain fall, snow showers, waterfall, and fall foliage in the mountains in the fall, or visualizing soft spring rains, baby birds, or whatever and you will be surprised how much it helps. Art therapy is often used to help patients visualize and express how they feel. I have been known to sing while walking my dogs using my power scooter with neighbors looking at me with strange looks, ‘Okay, he is gone’, but who cares.

Pets can offer so much in comfort and care if you are physically able to take care of them and afford them. As we have learned many times with the chronically ill and with veterans who suffer from PTSD pets are often essential for survival. For me they have become my ‘children’ to take care of providing more love and meaning to my daily life.


Opiates are often used for break through pain and for some are very helpful when there is either a short term need or no other option.

However, my opinion after working with many patients attempting to stop the use of opiates is that patients should try every option carefully before using the opiates. The opiates often require increasing dosages with unwanted side effects that become more of a problem than the symptoms you are trying to address. A day does not go by, when a patient requests help to withdrawing from opiates.

For many patients the opiate drugs will eventually become more of a problem than your symptoms of neuropathy and the body will keep demanding more and more of the drug.

However, this is a very personal decision between you and your doctor, so work with the doctor to discover what does work for you as noted. If your doctor does not work with you on this, find another doctor as every patient is different. I would always tell a patient to get a second opinion regarding opiate use for neuropathic pain.

Remember for neuropathic pain, if you get 85% relief this is probably as good as it is going to get until medical research discovers better options.
Pain Management

A patient went for decades with severe back pain from multiple problems in the spine. Nothing helped. Then they tried the epidural from a Pain Management physician, which is the only thing that helped provide some relief after decades of trying.

This epidural uses Lidocaine and Depomedrol. The patient is sedated when the procedure is done and it is done under a machine that shows the doctor what they are doing on a monitor. It gave the patient 90% relief for the first 3 weeks and then 80% relief. The patient is crippled without this epidural. Unfortunately they need to be repeated and relief is often temporary.
Pain Management can offer many ideas for patients to find some relief from chronic pain including the possible use of spinal cord stimulators, implants, and other such instruments.

How do you communicate pain levels?

(To see article on opening doors with doctors click here.)

One of the most difficult tasks for a neuropathy patient is communicating neuropathic pain or symptom levels to anyone, while the patient fears they are crazy from the strangeness of these symptoms and sensations.

Too many patients in frustration or in a desperate need for relief will state something like, “If 10 is the worst level, than my pain is a 20.” This may communicate your desperation, panic, frustration, or anger, but otherwise is not helpful to the doctor or you.

This is where patient awareness of the pain scale 1 to 10 is very important as you communicate with the doctor, working through the issues of what works and what does not work. This process requires a doctor and patient who LISTEN and HEAR as listening and hearing are two different tasks. You know a doctor is listening if they do not cut you off after you share for 3 seconds and if they can repeat back what you just said!

Remember, if 10 is the level of pain where you pass out and 1 is just a nuisance, then 5 is where your ability to perform daily tasks become very difficult and by 6 impossible. With practice, it will amaze you how skillful you can become in judging your pain or symptom level.

There are times when pain or other symptoms are better expressed in a range over a period of time. Examples would be the burning sensations have been a 2 to 4 or a 4 to 7. This will help you and the doctor see where you are with the medications. But remember, if you get 85% relief from neuropathic pain, this may be as good as it gets with current options. But remember, if you get 80% relief from neuropathic pain, this may be as good as it gets with current options.

A Note of Caution:

One final note of caution for medicine too often wants to dismiss the neuropathy patient rather than spend the time for a number of reasons to find the cause or type of neuropathy. It is not enough to treat these symptoms of a neuropathy. The physician must be willing to conduct the testing necessary in attempts to find and perhaps treat the cause or at least know the type as this often can point to a cause. Too many physicians have the attitude, there is nothing that can be done, go home, live with it. This attitude must cease, yesterday. 


#1 Norman Latov, MD, PhD, FAAN Peripheral Neuropathy: When the Numbness, Weakness and Pain Won’t Stop, ANN Press, 2007

#2 Mims Cushing, You Can Cope With Peripheral Neuropathy (Ideas from neuropathy patients), with Dr. Norman Latov, DEMOS Publishing, 2009

#3 “Journal of the Peripheral Nervous System” published by the Peripheral Nerve Society.

#4 Dr. Corey W. Hunter, MD, Pain Medicine, Ainsworth Institute of Pain Management, New York, NY.

#5 Dr. Sean Levine, MD, FAAN, Professor of Clinical Neurological Surgery and Radiology, NYPH, New York, NY

#6. “Neurology NOW”, February/March 2015, Article: Taking a Stand (on PODS), By Amy Paturel, pages 44 to 47.

DISCLAIMER: The information provided is intended to be educational and informative and not medically prescriptive or diagnostic. All patients are encouraged to consult with their own medical doctor when considering any of the information contained within.

Copyright – 2014-2015 Network for Neuropathy Support, Inc., 501c3, dba as Neuropathy Support Network. This article or its contents may be reprinted or published for educational purposes as long as the printing or publishing is not for profit and acknowledgement is granted the author.

Tuesday, 14 April 2015

Neuropathic Pain And Brain Inflammation

Today's post from (see link below) is an important one for neuropathy patients, who have trouble explaining the parameters of their pain to doctors, who then have to prescribe the appropriate pain medication. It's not their fault: neuropathic pain is notoriously difficult to quantify and the clichéd scales of 1 to 10, rarely reflect the true nature of nerve pain. This article talks about a breakthrough which in the future will be able to much more accurately match the medication to the extent of the pain. It will be measured by means of brain scans which will measure the neural inflammation in the area of the brain responsible for pain signals. Medicine prescription will become less a question of 'suck it and see' and more based on accurate levels of pain, which can only be a good thing for neuropathy patients who often end up as guinea pigs in the search for pain relief.

Chronic Pain Patients Show Patterns Of Brain Inflammation, Setting Stage For Objective Pain Scale
Jan 12, 2015 02:59 PM By Chris Weller

One day scientists may be able to figure out which pain pills you should take based on nothing but a brain scan. Intel Free Press, CC BY-SA 2.0

“On a scale of 1 to 10, how bad is the pain?”

That question has been asked in a variety of settings for an equally colorful range of afflictions. That’s because doctors, despite 76 million Americans having had suffered from chronic pain at one point or another, don’t yet have a standardized scale for measuring pain — after all, what registers as a 6 for you may be a 9 for someone with a lower threshold. Now, a new study finds that a standardized scale may be within reach, and neuroinflammation, of all things, is here to help.

Researchers from Massachusetts General Hospital collected data on 44 subjects, 19 with chronic lower back pain and 25 who were pain-free. Specifically, they performed scans on the brain’s thalamus, a region that, among other things, is responsible for signaling pain. Using a drug that shows up in contrast on the scan when it binds with a particular protein — known as a translocator protein (TSPO) — they could see how chronic pain correlates to inflammation in the brain, which the protein illuminates in the thalamus.

The findings are significant because they offer a future of health care that doesn’t have to rely on questionable data. Unlike physicians, who can look at high blood pressure and cholesterol levels to assess a patient’s risk for disease, people who study pain have had to trust murky self-reports to go in one direction or another. Now, the findings suggest a new approach, in which doctors can enjoy a solid footing for making complex decisions about pain — all from a helpful batch of brain cells.

“Demonstrating glial activation in chronic pain suggests that these cells may be a therapeutic target, and the consistency with which we found glial activation in chronic pain patients suggests that our results may be an important step toward developing biomarkers for pain conditions,” said Marco Loggia, of the MGH-based Martinos Center for Biomedical Imaging, in a statement. The inflammation was so starkly evident in the scans that Loggia could pick apart the control group from the pain group just by looking at them, he added.

Images created by averaging PET scan data from chronic pain patients (left) and healthy controls (right) reveal higher levels of inflammation-associated translocator protein (orange/red) in the thalamus and other brain regions of chronic pain patients. Marco Loggia, PhD, Martinos Center for Biomedical Imaging, Massachusetts General Hospital

What really interested the investigators was the relationship between TSPO and pain levels. It wasn’t the case that higher pain showed more protein activation. In fact, it was just the opposite.

“While upregulation of TSPO is a marker of glial activation, which is an inflammatory state,” Loggia said, “animal studies have suggested that the protein actually limits the magnitude of glial response after its initiation and promotes the return to a pain-free, pre-injury status.”

This means that people with more pain may actually be expressing less TSPO, sort of as a way to "calm down" the inflammation site, as Loggia explains. "While larger studies would be needed to further support this interpretation, this evidence suggests that drugs called TSPO agonists, which intensify the action of TSPO, may benefit pain patients by helping to limit glial activation."

Up next for the research team is narrowing the focus of glial activation studies. They want to understand how certain forms of pain, like fibromyalgia and rheumatoid arthritis, produce a similar response in the brain. It may be the case, for instance, that each type of pain generates a "glial signature." One day, patients may be able to take different drugs according to the inflammation seen solely in their brain scans.

Source: Loggia M, Chonde D, Akeju O, et al. Evidence for brain glial activation in chronic pain patients. Brain. 2015.

Monday, 13 April 2015

Twenty Neuropathy Symptoms

Today's post from (see link below) is meant to help people facing strange symptoms for the first time and wondering whether they may be as a result of nerve damage. It's a useful list in that it covers most of the discomforts brought about by neuropathy but it's important to realise that you don't need to experience them all in order to be suffering from nerve damage. Whether you have just one from the list, or several, it's sensible to take these symptoms first to your home doctor and then (if necessary) to a nerve specialist (neurologist). Very often, your story and symptoms themselves will be enough to establish a diagnosis but be prepared to face a scala of tests and a variety of 'test the water' treatments. Unfortunately, if you have neuropathy you need to be prepared for the long haul.

Top Twenty Symptoms of Peripheral Neuropathy
LtCol Eugene B Richardson, USA (Retired) BA, MDiv, EdM, MS

What type of symptoms might you experience when your Peripheral Nerves are damaged? Each person’s experience will vary, but in general following are the top 20 most common symptoms you might experience.

1) Severe strange pains in your feet, legs, hands and other parts of the body; including ‘crawling insects under skin;

2) Balance is difficult when walking, getting dressed, getting out of bed or whenever you close your eyes;

3) Numbness / heavy / cardboard / heavy cement feeling/ Novocain feeling in your feet and legs;

4) Tingling or “vibration” like feelings in your feet and hands;

5) Electric shocks starting at the bottom of your feet/foot that shoot up your leg(s) and on almost any part of the body;

6) Bone pain especially in the feet on walking or standing;

7) Painful muscle spasms/cramps;

8) Skin may become painful to touch or loss of the feeling of touch; with Agent Orange skin rash;

9) Burning sensations in your feet and hands;

10) Loss, or lessening, of sensation for hot and cold;

11) Feeling like you are wearing socks when you are not;

12) The feeling you are walking on crumpled socks or stones;

13) Feet feel swollen or large;

14) Difficulty moving your hands or feet;

15) A feeling of clumsiness, tripping (foot drop) or dropping things;

16) Attacks of daily severe exhaustion with strange fatigue;

In more severe case of Peripheral Neuropathy you may also experience the following:

17) Problems with not sweating in lower body with excessive sweating in upper body;

18) Digestive (fullness; alternating diarrhea / constipation) and/or urinary problems (overflow incontinence);

19) Sexual problems (loss of sensation/feeling/moisture);

20) A tightening of your chest with an increased difficulty in breathing and/or swallowing; uncorrectable vision problems.
To learn more see the article on the Symptoms of Neuropathy at:

Symptoms of Neuropathy

Top Twenty Symptoms of Neuropathy
To understand the basics of Peripheral Neuropathy visit:

Frequently Asked Questions About Neuropathy

DISCLAIMER: The information provided is intended to be educational and informative and not medically prescriptive or diagnostic. All patients are encouraged to consult with their own medical doctor when considering any of the information contained within.

Copyright – 2014-2015 Network for Neuropathy Support, Inc., 501c3, dba as Neuropathy Support Network. This article or its contents may be reprinted or published for educational purposes as long as the printing or publishing is not for profit and acknowledgement is granted the author.

About the Author
LtCol Eugene B Richardson, USA (Retired) BA, MDiv, EdM, MS

Sunday, 12 April 2015

What's The Reality Of Chronic Pain?

Today's post from (see link below) is possibly controversial in that it paints a portrait of chronic pain and its sufferers that some may disagree with but if it gets people talking about what chronic pain really is, then it's a useful article. Neuropathy patients are very well qualified to contribute to the discussion and will recognise themselves in several parts of this article. Basically, it attempts to explain what chronic pain is and how that is very different to pain that goes away after the cause has been cured. Chronic pain carries long-term effects that are often underestimated by both doctors and those close to the patient and treatment needs to be carefully targeted and holistic to achieve the best results.

Chronic pain not only hurts, it also causes isolation and depression. But there’s hope.
By Rachel Noble Benner January 12, 2015

Chronic pain affects more people than cancer, diabetes, heart attack and stroke combined. The Institute of Medicine estimates there are more than 100 million sufferers in the United States, costing the nation as much as $635 billion a year in medical treatment and lost productivity.

It’s even the focus of a new movie: “Cake,” starring Jennifer Anniston as a woman struggling with chronic pain, is scheduled for release Jan. 23.

In the new film “Cake,” Jennifer Aniston plays a woman with chronic pain, a condition that is often accompanied by depression. (AP) 
Chronic pain can be devastating, and a challenge to treat. As a mental health counselor, I have seen it damage productive lives and tear families apart.

Pain sufferers often are misdiagnosed, misunderstood and miserable. Their friends and family can become worn out from listening to complaints. Their identities may be significantly altered because they cannot engage in activities they once enjoyed. Doctors get frustrated by the inability to provide a cure.

I have worked with people who had full, rich lives as corporate leaders, mothers, athletes and professors before their chronic pain. However, by the time I saw them they were isolated, overmedicated and depressed, and they believed their life was devoid of meaning.

The good news is that chronic pain is treatable with the right blend of approaches. The traditional healing model — take medications, rest, get better — doesn’t work with this illness. But there are ways to reduce pain and rebuild yourself.

I worked with one client who lived with chronic pain for more than 15 years. He was a pilot before his illness. When I met him, he was taking copious amounts of pain medications, but all were useless. The drugs simply made his pain worse while clouding both his mind and mood.

He lived in his easy chair in front of the television. He watched the clock, praying for relief and waiting for his next dose. His three adult children never visited because they were tired of his constant irritability and complaining. When I asked about his goals, he said, “I want to mow my lawn again,” with tears in his eyes. After eight months of physical therapy, counseling and weaning off addictive medications, he was able to achieve this everyday task and much more.

Usually, people feel acute pain after an illness or injury. If pain lasts beyond the time it takes to heal, or longer than 12 weeks, it’s considered chronic. Michael Clark, a psychiatrist and director of the pain treatment program at Johns Hopkins Hospital, explains the underlying neurobiology: “The disease of chronic pain is more than just acute pain that lasts longer. It has greater intensity, causes impaired function and can migrate beyond the original pain site. The nervous system becomes distorted. Pain receptors get amplified and internal pain blockers minimized, which can make even the lightest touch be perceived as painful.”

Individuals may work with many medical specialists to find help even as relief remains elusive because they focus only on the pain symptoms.

“Chronic pain is not simply a single symptom or a straightforward experience like acute pain,” Clark says.

Chronic pain frequently is accompanied by depression, which can include fatigue, anxiety and changes in mood, appetite and sleep. Sufferers have some of the lowest reported quality-of-life levels among people with major illnesses. Pain combined with depression can hold sufferers back from engaging in life, which may lead to damaged relationships and loss of employment.

“In my practice, I routinely see clients who have suffered from chronic pain for many years. This can result in isolating behavior — especially toward spouses and immediate family members,” says Melissa Delgado, a gynecologist and obstetrician in Vienna, Va., who specializes in treating women with chronic pelvic pain.

“Approximately one-third to three-quarters of people with chronic pain experience moderate to severe depression,” Clark says. “Patients with depression experience increased pain because of overlap in the two affected systems: pain reception and mood regulation. Both depression and chronic pain share some of the same neurotransmitters and nerve pathways. So pain is worse, function is poor, response to pain treatment is diminished and their prognosis is worse until they can get their depression under better control.”

Antidepressant medication can provide considerable relief for some. I have seen amazing improvements in clients who focus on treating their depression in addition to pain reduction.

One woman wanted to have her legs amputated because of the interminable, horrific pain, but once her depression was properly managed, her pain diminished. She wasn’t 100 percent pain-free, but it was manageable. I remember her overwhelming joy when she went with her husband to a concert for the first time since the onset of pain more than six years before. They danced in the aisles.

Another well-understood contributor to chronic pain is the extended use of strong, addictive medications such as opioids and benzodiazepines such as Percocet and Valium. If they are taken over many years, they can make pain significantly worse.

These medications block the transmission of pain from the site to the brain, so over time nerves send stronger pain signals. It’s as though the nerves turn up the volume to help the brain hear the pain. Higher doses of medication are required to block the louder signals. Pain receptors and processors get so distorted that eventually most stimuli are perceived as pain and these medications no longer work. Additionally, these drugs blur thinking, depress mood and encourage isolating behavior.

“Physicians should take a holistic approach and not just focus on individual symptoms,” Delgado says. “Chronic pain is a complex and debilitating disease, and as a result, we need the multidisciplinary approach to address the whole person.” Medical doctors, counselors and physical therapists all add valuable pieces to solving the chronic pain puzzle.

An experienced chronic pain doctor can safely transition someone off addictive and ineffective medications and onto useful pharmaceutical combinations. Physical therapy is also needed, to reactivate injured bodies and reset a hyper-excited nervous system. Careful exercise will teach damaged nerves the difference between normal and harmful sensations. Counseling helps a person find strengths, adjust expectations, manage anxiety, rebuild identity, practice relaxation techniques and repair relationships.

My pilot client, who was grateful to be able to take care of his lawn again, labored through each of these challenging tasks over approximately eight months. Today, he continues to work with a counselor, physical therapist and support group.

The National Institutes of Health has found that individuals who take proactive steps toward managing their pain often find relief regardless of the underlying cause. Helpful actions include engaging in problem-solving, avoiding isolating behaviors, improving communication, embracing physical therapy and working with a counselor to help reframe an illness.

Chronic pain sufferers also need to incorporate structure, activities, socialization, purpose and meaning into each day of their lives. Research studies show that involvement in a meaningful activity or organization greatly improves well-being and happiness.

Benner is a mental health counselor in Bethesda.

Saturday, 11 April 2015

I'm In Chronic Pain. Don't Believe Me? Read On.

Today's post from (see link below) will resonate with many people living with severe neuropathy. It's one of those diseases that is more or less invisible from the outside and this, coupled with the fact that it's very difficult to explain to people exactly what neuropathy feels like, means that this sort of article is very useful in persuading people that the pain is real and we're not just sympathy seekers. Worth a read and then maybe worth passing on to any 'disbelievers' in your family or social circles.
16 Things People in Chronic Pain Want You to Know 

April 2, 2015 Tea Lynn

1. We try really hard to look good

We often hear “you don’t look sick” but the truth is that most of us try very hard to pass as normal. We rest before going out and take our pain meds at the optimal time. At times we hurt so much and are tired from trying to play healthy that we feel like laying down right then and there, but we (usually) hold it in until we get home to our beds.

2. It’s not all in our heads

Just because you can’t see it, it doesn’t mean it isn’t there. Our pursuit of healthcare is not driven by hypochondria or need for attention, it’s driven by physical discomfort. What we are doing is looking for something to improve our quality of life, and sometimes the cause of our pain if it is not known.

3. We are not making a mountain out a of molehill.

We are actually in more pain than you think we are in. Studies have shown that, generally speaking, people tend underestimate other people’s pain. This may be because chronic pain itself is difficult to imagine, especially if you have never experienced it firsthand. Even those who have experienced similar types of pain in the past have a difficult time remembering it until they experience it again.

4. No matter how long we’ve been suffering for, it still hurts

Having pain for an extended period of time does not give us superpowers to feel it less. However, most people with chronic pain have learned overtime to exhibit less pain related behaviours. So you can never really tell how much pain a person is in just by looking at them.
5. Sometimes we just don’t have the spoons

Spoon Theory is an analogy to explain what it’s like to live with a chronic illness such as chronic pain. Christine Miserandino, a woman who lives with lupus, originally coined the term on her website

The basic premise is that when you have a chronic condition you wake up each day with a certain number of spoons. Every time you exert effort — by getting out of bed, cleaning, getting dressed — you lose a spoon. When you run out of spoons, that’s it, the day’s activities are done.

Chronic pain can be an exhausting condition and this analogy demonstrates the need to budget and loss of control some people experience. So if we cancel our plans with you, it may be because we ran out of spoons.

6. We’re not lazy

In fact, we often have to work twice as hard to accomplish the tasks that most people do easily.

7. If we don’t have a job it’s for a reason

Some of us just don’t have the spoons to work on top of our activities of daily living. It can turn our pain from bearable to unbearable. Also, most employers are not eager to hire someone that can only work a few hours a week, is completely unreliable, may or may not show up, and may end up leaving at any point during the shift due to pain flares that make being productive impossible.
8. It’s really hard to get out of bed in the morning… and always!

But that doesn’t mean we still can’t have fun from bed.

So if we can’t make it out you can always bring the party to us!
9. Every minute feels like an eternity when waiting

Whether it’s an hour in a waiting room or 5 minutes in line, every minute drags out when you have to hold an uncomfortable position. It’s not that we are impatient, we would just prefer to use our spoons on more important things.
10. We are not ignoring you

Pain can be very distracting and mentally draining. We try our best to stay sharp and attentive but if we seem not to fully be there please don’t take it personally.

11. We get REALLY excited when we have a good day

Physically feeling good is just about the most exciting feeling in the world cause it means we can finally get stuff done! Its like going on a mini vacation (except for instead of doing nothing we try to do everything)!
12. And get really bummed when when we have a bad day and can’t do the things we love

13. It can be hard to find a good doctor

Unfortunately, most health care professionals have little knowledge in pain management because it is rarely part of their training. We often go through many doctors before receiving a proper diagnosis and wait months to years (literally!) to see a pain specialist for treatment. Also, few doctors are willing to take the legal risks involved in prescribing pain pills. So if we happen to find a good doctor who listens and is willing to treat us, we feel like we’ve died and gone to heaven!
14. We are not drug seekers

We are pain relief seekers. Sometimes our medical treatment does require the use of opioids or medical marijuana to keep the pain under control and help us resume to as close to a normal life as we can. We take it just like any other medication. We dislike the side effects just like any other medication. And if we find pain relief from another means, we simply stop taking it, despite months of use.

As the Cleveland Clinic explains: addiction appears to be distinctly uncommon in patients without a prior history of addiction. Most people who take their pain medicine as directed by their doctor do not become addicted, even if they take the medicine for a long time. Unlike street-users, the medical patient is under the supervision of a doctor and is going home to a life where she is surrounded by the people he or she loves.
15. You don’t need to give us suggestions or medical advice

We appreciate the thought, but it can be exhausting hearing advice all the time and frustrating when it doesn’t work. Unless we ask or you have chronic pain yourself, it’s best to leave this to the experts.
16. All we really need is your love and support

Sometimes all you can do is just be there, and that’s saving someone’s life!

Friday, 10 April 2015

A Summary of Neuropathy Treatments

Today’s post from (see link below) takes a critical look at some of the main treatments for neuropathy. As so often, the emphasis here is on diabetic neuropathy but as most readers will now know, unless you're talking about specific blood sugar issues, the information applies to all forms of neuropathy treatment. Basically and most importantly, the article calls for more and better research and better targeting regarding neuropathy treatment. It is happening but more behind the scenes and in the research facilities of the pharmaceutical companies than in the public eye and patients often get the impression that they are still being treated according to outdated guidelines - new and effective treatments are nearly always 'in the pipeline'. Progress is being made, especially in the last few years but information is always difficult for patients to find.

A Review of Painful Diabetic Neuropathy Treatments
Feb 18, 2015 | Rachel Lutz

Despite the high burden of painful diabetic neuropathy (PDN), it is under diagnosed and under treated, according to research published in Therapeutic Advances in Chronic Disease.

Researchers from the University of Manchester conducted a review of recent studies examining the efficacy of drugs used in the treatment of PDN in order to evaluate the most appropriate ones. PDN treatment is commonly categorized into 3 groups: intensive glycemic control and risk factor management, treatments based on pathogenetic mechanisms, and symptomatic pain management. Although as many as 1 in 5 diabetes patients may suffer from PDN, there are only 3 medications approved by the US Food and Drug Administration (FDA) for the treatment of PDN – duloxetine, pregabalin (both approved in 2004), and tapentadol (approved in 2012). However, many proposed treatments are undergoing studies, though the researchers commented there is an increasing need for even more studies to evaluate these options in order to maximize pain relief and improve patients’ quality of life.

Some studies have demonstrated benefits of glucose control through insulin in type 1 diabetes patients in preventing diabetic sensorimotor polyneuropathy (DSPN), the most common type of PDN. The results of the study were less clear for type 2 diabetes patients. A conducted on patients with pancreatic transplants found improvements of PDN following the transplant; however, another study suggested there was no effect on nerve conduction velocity and autonomic function. Improvements were also shown in a study of a 6 week placebo controlled benfotiamine treatment on 165 patients.

Non steroidal anti inflammatory drugs (NSAIDs) are often prescribed for short term analgesia, usually when PDN is not suspected. Even though their use has not been extensively evaluated, in some treatment experiments, NSAIDs were effective. Tricyclic agents (TCAs) like amitriptyline, desipramine, and imipramine have shown efficacy in PDN patients, even though they are noted for their high side effect frequency. Serotonin norepinephrine reuptake inhibitors (SNRI) were FDA approved for the treatment of PDN in 2004 and it, as well as other SNRIs, have been reported as efficacious across many studies, and major side effects were rare. Carbamazepine, oxcarbazepine, topiramate were initially proven to be effective for the treatment of PDN, but have later been discredited due to side effects and other reasons, though gabapentin and pregabalin are typically effective. The authors considered opioid treatment for PDN controversial, in addition to its lack of established risk benefit analyses.

Non pharmacological approaches have been developed for PDN patients who are unresponsive to conventional therapy techniques, or find those methods inadequate for relief. These forms of relief include electrical stimulation, which has found to be more effective than a placebo treatment. Another option was acupuncture, which demonstrated improvement in outcomes over a placebo acupuncture treatment.

“It is evident from the broad range of drugs that have been evaluated in PDN that there is no consensus about a single most effective drug, and monotherapy rarely provides adequate pain relief,” the authors concluded while stressing that further and more specific research is needed. “Additionally, most studies compare therapies against placebo or sham treatment and there is a need for comparative studies between different pharmacological agents.”

- See more at:

Thursday, 9 April 2015

Getting The Right Neuropathy Diagnosis

Today's post from (see link below) is a personal story of living with nerve damage by the well-known author Ann Packer. it once again highlights how frustrating getting a correct diagnosis can be. Not only that, the time taken to come to the right conclusion gives you a sense of wasted time and lost opportunities. However, this is the reality for many neuropathy patients, mainly due to the complexity and variety within the condition. In this case, a rare form of nerve damage was eventually discovered but I'm sure many people will identify with the author's journey and agree with her final statement that; "It’s time to enjoy feeling well."

Finally a Diagnosis, but Still More Questions By
 Ann Packer April 6, 2015

On a windy fall day in 1985, I reached through an open car window to pull up the lock on the door. Such an ordinary gesture, but I was unable to complete it. It was as if the tip of my forefinger and the tip of my thumb were paralyzed.

And they were. But it would take decades for me to learn why.

At the time, I was in my mid-20s and, aside from a recent bout of mononucleosis, in excellent health. This made it hard for me to take my problem seriously — even to see it as a problem. Nearly a year went by before a medical student friend urged me to see a neurologist, who determined that a nerve in my arm wasn’t working. A hand surgeon performed a complicated operation that included rerouting tendons to restore function to my forefinger and thumb, and with my arm in a cast, I was sent home to recuperate.

But two days later I woke up in excruciating pain — not in my left arm, where it would have made sense, but in my shoulder. I had another neuropathy, involving my shoulder blade, and now my neurologist was alarmed. So was I, imagining a wasting disease that would leave me in a wheelchair for life. I was sent for X-rays, an M.R.I., an EEG, but everything was normal. We chalked it up to a strange coincidence.

Years went by, and the peculiarity of what had happened to me ebbed away. I got married, moved to Oregon, had a baby. When my right elbow suddenly starting aching years later and I lost strength in my thumb, I knew enough to consult a neurologist immediately, and prednisone kept the damage to a minimum.

I had a second baby, moved again, and worked on my first novel, about a young man who breaks his neck in a diving accident. The realm of fiction was a far safer place for paralysis, for life in a wheelchair.

Then two numb patches appeared on my upper arm, and yet another doctor found something new: My blood was positive for antinuclear antibodies, a sign of autoimmune disease. It turned out my body was periodically attacking its own peripheral nervous system.

A decade went by before the next incident. I was accustomed to the vague befuddlement most doctors demonstrated in the face of my history, but this time was different. My new neurologist left the room and returned with a piece of paper on which he’d written “HNA – INA – Parsonage-Turner Syndrome.”

At long last, my “arm thing” had a name: neuralgic amyotrophy, or N.A., which means, fittingly enough, painful wasting. This rare condition, originally described by a pair of British doctors named Parsonage and Turner, exists in two forms, designated H for hereditary or I for idiopathic, meaning of unknown origin.

I got to work on Google. There was a clinician in the Netherlands who had written many articles on the disease, and it was uncanny: Her patients’ histories read like reports I could have written about my own experience. She hypothesized that people who suffered from N.A. all had a predisposition, but what caused the attacks differed. Some common triggers were infection (I’d had mono!), surgery (I’d had the operation on my arm!), emotional trauma (I’d had stress!).

For 27 years I had been living with a medical mystery, and now it was solved. But rather than feeling freed, I couldn’t stop thinking about it. On Facebook I found a support group whose members had gone through much the same things I had, with many describing situations far worse than mine. Some people could no longer lift their arms; others had been in unremitting pain for years. One or two were on ventilators. I looked at the group’s page several times a day, participating in conversations with various members, telling my story.

I reread the Dutch doctor’s articles, poring over them for … what? For years I’d thought my problem was that I didn’t know the name of my problem. Now I was discovering that this information made no difference. In fact, it made things worse: I was obsessing about my medical issues more than I had when they were a mystery. At one point in an email correspondence with the Dutch doctor, I wrote, “Is vasculitis at work in N.A.? Or is the mechanism known?” And she replied, “No, N.A. is not a vasculitis as far as we know. It might be an autoimmune perineuritis, but that’s unsure.” Who was I kidding? She might as well have been writing in Dutch for all I understood of this exchange.

My most recent episode had left my right index finger inflamed and tingling, and my right forearm so sensitive to touch that I couldn’t wear long sleeves. But gradually the tingling subsided, and it occurred to me that I was in a familiar phase: the return to normalcy I had experienced half a dozen times already. The only difference was that I was now living with the knowledge that I might go through a certain type of medical crisis again.

But how was I so different from other people? Take away “certain type of” and “again,” and my situation looked like a truism of middle age: I might go through a medical crisis. Well, yes.

Until that unlucky day, though, best to get on with it. No more support group unless I need it, no more email correspondence with strangers. It’s time to enjoy feeling well.

Ann Packer is the author of “The Children’s Crusade,” just published by Scribner.