Neuropathy When A Picture Says It Better

Have you ever wished you just had the right image to send to someone who'd just sent you yet another e-mail asking how you are and noting how well you looked the last time they saw you? You need the image that says more than a thousand words right? Now neuropathy is not normally a laughing matter but there are a few 'lighter' images out there you might want to send, without any explanatory text, or long explanations. Given the choice between strangling your well-meaning friends, or firing a humour-bullet...one of these may fit the bill. If you know of more...let us know..they just might make someone's day a tiny bit better.

I've Got Neuropathy...Deal With It!
Dave R April 2016

 

www.neuropathyandhiv.blogspot.com

Quell Neurodevice For Nerve Pain Will It Be Any Good

Today's post from diabetesselfmanagement.com (see link below) anounces another electro-stimulant device designed to reduce neuropathic pain. Not quite on the market (later this year), it reflects the growing interest in electro-neurostimulation but it has to be said that so far, results from these sorts of devices have been patchy to say the least. Maybe this one will provide more people with a positive result. It's lightweight and wearable and can be tracked with a smart phone, so these things at least stand in its favour. Time will tell.

CES Dispatches: Pain-Relieving Device for Diabetic Neuropathy
January 6, 2015 by Diane Fennell


(Quell[TM] Wearable Pain Relief Device [Photo: Business Wire])

Quell, a device that can relieve chronic pain in people with conditions such as diabetes, sciatica, and fibromyalgia, was unveiled this week at the 2015 International Consumer Electronics Show (CES), taking place in Las Vegas from January 6–9.

Roughly 60% to 70% of people with diabetes have some form of the often painful condition neuropathy (nerve damage), according to the National Diabetes Information Clearinghouse, and surveys of people with diabetes reflect rates of chronic pain ranging from 20% to 60%.

Created by NeuroMetrix, Quell is lightweight, wearable device that uses noninvasive neurostimulation technology to reduce chronic pain. The device, which has been approved by the U.S. Food and Drug Administration (FDA) for use without a prescription, can be worn both during the day and at night, and users will have the option of using their smartphone to track and personalize their pain treatment.

“Recent studies have shown that chronic nerve pain dramatically reduces the quality of life in people with diabetes,” notes Shai N. Gozani, MD, PhD, President and Chief Executive Officer of NeuroMetrix. “We believe that Quell may help many of these people reclaim their life from chronic pain.”

Quell is expected to be available for purchase by consumers later this year.

For more information, see the press release from NeuroMetrix.

http://www.diabetesselfmanagement.com/blog/ces-dispatches-pain-relieving-device-diabetic-neuropathy/

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

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

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

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

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

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

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

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

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

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

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

Let me unpack this a little.

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

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

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

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

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

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

Sources

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

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

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

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

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

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

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

Neuropathy! Never Heard Of It Well Now You Have

Today's post from post-gazette.com (see link below) is an excellent newspaper report of the state of neuropathy at the present time. With the use of individual case studies, the article describes neuropathy very accurately (although the statistic of 40 million Americans with neuropathy may be a little far-fetched - the most accepted figure is 20 million but hey, who's counting - one is too many!) Accurate reporting about nerve damage and the pain it brings is hard enough to find so an unbiased report like this is extremely valuable. It allows people living with the disease to feel a little better that they are not alone in feeling how they do and it educates a wider public, most of whom have no clue what neuropathy is. Hopefully it also helps stimulate the medical powers-that-be to work harder in researching the disease and finding an effective treatment. A cure is too much to hope for but an effective treatment of the symptoms must surely be within reach. Definitely worth a read.

Neuropathy affects millions with no guarantees from treatments
David Templeton Pittsburgh Post-Gazette dtempleton@post-gazette.com Sep 13, 2016

Five years ago when Harold Frazier reached 220 pounds and flirted with diabetes, he took to walking 10 miles a day and shed 30 pounds, returning his blood sugar levels to normal.

Problem solved. Or so he thought.

Unexpectedly one day Mr. Frazier, now 63, was unable to lift his foot to the curb. In time, his feet began feeling numb with burning sensations upon awakening each morning and eventual decline in leg and arm function. Today he says he has about 40 percent function of his limbs, forcing his retirement as a maintenance man at the Irwin townhouse complex where he lives.

“Every time I move when I’m asleep I wake up, and I’m lucky to get four hours of sleep a night — and that’s a great night,” Mr. Frazier said, noting he no longer can raise his arms above his head.

“If I am arrested, and they say, ‘Stick ’em up,’ they’ll have to shoot me because I can’t,” he said. “I have lost all the power in my arms.”

Arresting the pain

Mr. Frazier and 40 million other Americans struggle daily with peripheral neuropathy. Initial symptoms typically involve numbness in the feet or hands and may affect other parts of the body such as internal organs. Over time the person can experience sensations of burning, freezing, throbbing or even shooting pain that’s often worse at night, the Foundation for Peripheral Neuropathy reports.

Surprising perhaps is the fact that 70 percent of people with diabetes and up to 40 percent of those who undergo chemotherapy develop painful neuropathy with no cure and limited if any effects from major treatments including Lyrica and Cymbalta, among other drugs.

Alternative treatments exist, each with advocates. But for most people, neuropathy can hinder daily quality of life, preventing activity and exercise, a good night’s sleep and a pain-free existence.

“The pain can be either constant or periodic, but usually the pain is felt equally on both sides of the body — in both hands or in both feet,” according to the foundation website (foundationforpn.org).

Erin Kershaw, chief of the division of endocrinology and metabolism at the University of Pittsburgh and UPMC, said once you develop neuropathy it is difficult to reverse, so prevention is key, especially given that diabetes and alcohol consumption are common but preventable causes.

“Small nerve-fiber burning is extremely uncomfortable,” she said, describing the effects of nerve damage. “It can feel like your feet are on fire all the time,” requiring pain therapies that may have limited impact on reducing pain levels.

Numbness also can result in foot injuries the person may not be aware of due to lack of feeling. This may result in ulceration that’s hard to treat, sometimes leading to amputations. Dr. Kershaw said prescribed drugs do help a substantial number of patients but usually do not eliminate all of the discomfort.

“Neuropathy is a problem that requires more awareness and more research,” she said. “When you see a patient, you are hurting inside because you know the existing therapy is not helping them with pain that’s there every day.”

Cause and effect

About 60 percent of all cases of neuropathy involve diabetes, with chemotherapy-induced neuropathy responsible for about a quarter of all cases and idiopathic neuropathy (where a cause isn’t identified) representing about 10 percent. HIV/​AIDS, repetitive stress, alcohol abuse, inflammatory response, carpel tunnel syndrome, autoimmune diseases and vitamin deficiencies, among others, can cause or contribute to the condition. The American lifestyle and diet also can contribute to and worsen symptoms, studies indicate.

“If nerves are dead, they’re dead,” said Marlene Dodinval, the Foundation for Peripheral Neuropathy’s senior program coordinator. “There is nothing you can do about it.”

The foundation held an international research symposium last week, during which cannabis was discussed as a treatment. It also is working with eight universities nationwide to create a peripheral neuropathy research registry and create a database of patients available for research.

“Neuropathy is an ignored condition,” Ms. Dodinval said. “There is work underway around the world, and more needs to happen.”

The U.S. Food and Drug Administration has approved only pregabalin (Lyrica) and duloxetine (Cymbalta) as treatments for diabetes neuropathy, according to a study update published last month in the American Family Physician journal.

Other nerve-pain and antidepression drugs can serve as second-line drugs with third-line drugs that include opioids. Other treatments include topical creams, sprays and patches including lidocaine, with transcutaneous electrical nerve stimulation providing relief for some, it says.

The update found insufficient evidence to support acupuncture, chiropractic procedures, laser treatments, full-body vibration, electromagnetic field application, and such supplements as alpha lipoic acid, acetyl-l-carnitine and primrose oil. The supplements are championed by some patients with some supportive research.

Ms. Dodinval said some people swear by creams and supplements of capsaicin, an active ingredient in chili peppers.

Relief via support groups

With few effective treatments, Mr. Frazier joined the Pittsburgh Area Peripheral Neuropathy Support Group that meets the third Wednesday of each month April through October at the Brush Creek Evangelical Lutheran Church in Irwin. Members discuss treatments, exchange tips and listen to scheduled speakers.

Bill Wilshire, 70, of North Huntingdon faces his own issue with neuropathy, the exact cause of which is unknown. It began when he kept feeling his socks bunching up under his toes. Pulling up those socks never helped because they weren’t actually bunched up.

Eventually the altered feeling of his toes turned to numbness that affected his balance, eventually jeopardizing his ability to walk. But the retired social studies teacher says he’s one of the lucky ones because he feels numbness but little pain.

Another member, Gerry Getman, 69, of Peters, was undergoing chemotherapy in 2008 for multiple myeloma that’s in remission when he began feeling tingling in his toes and hands. He expected it to go away, as sometimes occurs with chemo-induced neuropathy. But his tingling progressed into pain and burning in his feet, especially at night.

In time, he, too, lost feeling in his legs, reducing his ability to walk without assistance. Now the retired entrepreneur with a doctoral degree in chemistry says he’s 50 percent disabled and controls the discomfort in his arms and legs by keeping his mind occupied.

“I would describe it as fairly severe,” he said. “I have it 24/​7, but it’s always more intense when my mind is not occupied. I actually try to get pretty close to exhausted. I work on the computer until midnight or 1 in the morning so that I can drift off to sleep.

“I think mine has stabilized, and I’ve developed a lifestyle to deal with it quite effectively,” he said. “I mean, you have to. Life goes on.”

David Templeton: dtempleton@post-gazette.com or 412-263-1578.

http://www.post-gazette.com/news/health/2016/09/13/Neuropathy/stories/201609070171?pgpageversion=pgevoke

Is It Wise To Dismiss Opioids For Chronic Pain

Today's post from thebodypro.com (see link below) is directed at people living with HIV and chronic pain conditions such as neuropathy (around 40% of HIV patients also suffer from nerve damage) but also applies to the general population if they have a chronic pain condition - irrespective of the cause. That said, the article comes over as a little confused; as if the author isn't sure on which side of the fence she sits regarding opioid prescription and use. The underlying message that opioid prescription should be a last resort for chronic pain is indisputable but the idea that the cause of the pain should first be dealt with, is simply inapplicable to people with most chronic pain conditions for which there is no cure and certainly for HIV patients, cancer patients and the like. She also suggests that evidence of opioid effectiveness is limited, when there are countless studies that show that opioids are an extremely effective way of suppressing pain...if handled properly, with sufficient after-care. She also rolls out the addiction problem: "evidence of their risks is mounting, with an estimated 10% of patients on such medications becoming addicted"! Surely this advances the efficacy of opioids because by definition, 90% of patients do not become addicted!! Whether this article will change your opinion on opioids is for you to decide but when it comes to chronic pain conditions, the idea that they can be treated just with behaviour change, is way too simplistic. Experienced neuropathy patients will know all too well the hoops they have to jump through in order to get their pain under control and are well aware of the gamut of other dangerous medications they have to try before reaching the opioid stage. Fear of opioids may lead to much more unnecessary suffering than is needed.

Opioids Are Not a First-Line Treatment for Chronic Pain, Pain Specialist Says
By Barbara Jungwirth From TheBodyPRO.com October 6, 2016



When someone living with HIV complains about chronic pain, take their word for it, but try non-opioid therapies and treat underlying psychiatric illnesses before prescribing oxycodone, Jessica S. Merlin, M.D., M.B.A., advised health care providers in a recent webinar. People living with HIV are more likely to suffer from such pain (30%-85% report chronic pain) than the general population (15% report that issue). This may be partly due to greater sensitivity to pain in those with detectable viral loads, Merlin explained.

Providers must understand the impact that this condition has on a patient's daily life, screen for mood disorders and note the patient's coping strategies before suggesting a therapy approach, Merlin advised in the Chronic Pain in HIV Infection: A Practical, Evidence-Based Approach webinar sponsored by the International Antiviral Society-USA on August 18, 2016. An effective technique Merlin has used in her chronic pain clinic is motivational interviewing, which is designed to stimulate people's own motivation for change, rather than simply telling them that they should change their behavior. She counseled providers to educate patients about ways to control pain without resorting to prescription medications, including mind-body techniques and short-term, over-the-counter drugs, such as acetaminophen. The latter, however, has problematic side effects when taken long-term, especially in combination with antiretrovirals, Merlin cautioned. Other approaches include physical therapy and exercise, as well as topical medications.

Providers should develop a team either within their office or within the community; it should include mental health professionals, methadone programs and social workers, among others. Such a team approach allows for better screening and treatment of depression, PTSD and other conditions that may co-occur with chronic pain. These problems need to be addressed first to remove the underlying cause of the pain, rather than treating only the symptoms.

Opioids should not be considered first-line therapy for chronic pain, Merlin emphasized. Evidence of their benefit is limited, and no studies have evaluated their use for longer than one year. By contrast, evidence of their risks is mounting, with an estimated 10% of patients on such medications becoming addicted, as well as a risk of overdose, especially when co-prescribed with benzodiazepines. Providers should take universal precautions when prescribing opioids, rather than deciding who is or is not at risk of opioid use disorder. These precautions include having the patient sign an opioid treatment agreement, with provisions for using only one prescriber and one pharmacy and submitting to frequent urine drug testing. However, urine tests can result in false positives, especially when someone takes multiple medications, as is the case with those living with HIV, Merlin noted. A confirmatory assay, as well as a conversation with the patient, are therefore necessary before jumping to conclusions.

If all non-opioid attempts at managing the chronic pain have failed and oxycodone or a similar drug is prescribed, the lowest effective dose should be used. Patients should be re-assessed at least every three months, other therapies should be optimized, and the opioid dosage prescribed should be tapered off over time with the goal of eventually discontinuing it altogether. Merlin also advocated co-prescribing naloxone for high-risk patients, if they can bring in someone who lives with them and can administer the antidote in case of opioid overdose. However, local laws differ as to whether this approach is permitted. Laws on marijuana use also differ among states, but where legal the substance may be useful in treating chronic pain. Evidence shows that people who are prescribed medical marijuana use opioids less, reducing the risks associated with opioids.

Barbara Jungwirth is a freelance writer and translator based in New York.

Follow Barbara on Twitter: @reliabletran.

http://www.thebodypro.com/content/78544/opioids-are-not-a-first-line-treatment-for-chronic.html

In The Mind Or In The Brain Is Your Nerve Pain Worse Than It Should Be

Today's post from painscience.com (see link below) is really addressed at doctors and other health professionals who are treating patients with chronic pain but it's safe to assume that those patients themselves will gain a tremendous amount of insight into their own problems by reading this article. If any patient knows about misleading pain signals, it's the nerve pain patient and the ideas about central sensitization that this article expounds are directly relevant to neuropathy sufferers. Understanding how your own pain experience works will give you a heads up into how better to deal with it. How do we know if our pain is worse because the pain signals say it is and even perversely promote further pain? We don't is the answer but accepting the very idea, will help us psychologically  create coping strategies. Yep, mind over matter is a cliche but if we can identify when the pain is worse than it should be, then we just may be able to reduce it ourselves without taking yet more pills. You need to read the article to get the gist but don't worry, it's readable and relevant and you won't be bogged down in scientific jargon.

Central Sensitization in Chronic Pain
by Paul Ingraham, Vancouver, Canada bio updated November 17 2016 (first published 2011)
 
Pain itself can change how pain works, resulting in more pain with less provocation

Pain itself often modifies the way the central nervous system works, so that a patient actually becomes more sensitive and gets more pain with less provocation. That sensitization is called “central sensitization” because it involves changes in the central nervous system (CNS) in particular — the brain and the spinal cord. Sensitized patients are not only more sensitive to things that should hurt, but also to ordinary touch and pressure as well, which obviously should not hurt. Their pain also “echoes,” fading more slowly than in other people.


This first section is a direct jargon-to-English translation of an important scientific paper by Clifford Woolf, a rock star of a pain researcher, published in Pain in Oct 2010. Everyone needs to know this: it’s owner’s manual stuff. After the translation, I offer some of my own ideas about what it all means for patients and professionals.

In more serious cases, the extreme over-sensitivity is obvious. But in mild cases — which are probably quite common — patients cannot really be sure that pain is actually worse than it “should” be, because there is nothing to compare it to except their own memories of pain.

This rather awful thing is actually quite easy to create in the lab, like a mad scientist’s monster. Any kind of noxious stimuli can trigger the change — anything that hurts skin, muscles or organs — and it can be reliably detected with special equipment. The role of sensitization in several common diseases12 has been proven and well-documented, and may in particular be provoked by (common) muscle pain.3 It can also persist and worsen in the absence without apparent provocation. This rather awful thing is actually quite easy to create in the lab, like a mad scientist’s monster.

Indeed, this neurological meltdown is such a consistent complication of other painful problems that some researchers now believe central sensitization is actually a major common denominator in most difficult pain problems. That is, it may be the nearly universal factor that puts the “chronic” in chronic pain, giving all such problems shared characteristics regardless of how it got started — not the cause of the pain, but perhaps the cause of its chronicity.

The existence of central sensitization is quite well established. What is still unknown is why it happens to some people and not others. Both environment and genetics are probably factors — aren’t they always? — but which genes, and what things in the environment? We just do not know yet.

Another unfortunate gap in our scientific knowledge is that there are no clear criteria for diagnosing central sensitization. There is no easy lab test or checklist that can confirm it.4 It could be present in nearly any difficult case of chronic pain, but it’s not a sure thing — the pain could still be coming from a continuing problem in the tissue, with or without central sensitization muddying the waters.
Hallucinating pain

One easy way to understand central sensitization is that it causes pain hallucinations: a bogus perception, but instead of seeing lizards on the walls, you feel pain that makes no sense.

There are some related conditions that are easier to understand. For instance, hyperacusis is an increased sensitivity to sounds, usually specific frequencies and volumes. Imagine a restaurant that sounds as loud as a rock concert. My father, a Vietnam veteran with PTSD, suffered from this condition for a couple years: he was hallucinating loudness. He spend a long time re-calibrating his sense of what “loud” is. A big part of that was asking my mother for an opinion on the loudness, and trusting her judgement: yes, it really is loud in here or no, this really isn’t very loud. By frequently checking his perception against a healthy, objective assessment, he was able to slowly adjust his subjective volume scale.

But pain hallucination is a completely personal and internal experience, and there’s no good way to check the validity of your pain. No one can tell you, no, that really isn’t very painful. They cannot know.5

Pain hallucinations do not mean that pain isn’t real. It usually means it’s just a too loud interpretation of something that would hurt even if you weren’t sensitized. It’s also real in the same sense that hallucinations are caused by real neurological problems. When you feel pain you’re not supposed to, it just means that the nervous system itself is damaged, rather than the tissues it’s supposed to be reporting on. The pain system is borked.





Health care for pain problems remains overwhelmingly preoccupied with structural and biomechanical causes — they exist, but therapists hoping to diagnose pain that way are generally barking up the wrong tree. The last 20 years of pain science strongly suggest that neurology is by far the most important factor in most chronic pain.

Making a bad situation worse: the trouble with not knowing the neurology

Even the clearest localization of pain in one area may, in fact, be originating from a distant area …. The reference of pain implies the existence of convergence of inputs within the spinal cord. This leads to the necessary involvement in central neural circuits in the simplest of peripheral disorders. It also leads to the possibility that the basic disorder is entirely central …


Professor Patrick D. Wall, FRS, DM, FRCP, in the Foreword to Muscle Pain: Understanding its nature, diagnosis and treatment

Pain is a warning system, and central sensitization is therefore a disease of over-sensitivity to threats to the organism — a hyperactive warning system. When physical therapists, massage therapists and chiropractors treat a chronic pain patient too intensely, they are going to trigger that alarm system, and quite possibly make the situation worse instead of better.

Central sensitization is bad news, but worse still is how few health care professionals are aware of the neurology and make things worse with careless or even deliberately rough, no-pain-no-gain treatment. It’s bad enough that ignorance of central sensitization leads to wild goose chases and patients riding a merry-go-round of expensive and ineffective therapies, but many kinds of therapy are also quite painful — and can make the problem worse. With tragic irony, the most likely victims are also the most vulnerable and desperate patients, patients going through the therapy grinder, their hopes leading them right into the hands of the most intense therapists.

The science of central sensitization is not all that new, but its surprising clinical implications are still emerging, and resisted by many health care professionals thinking well inside the box they were taught in. Ignorance of central sensitization leads to wild goose chases and patients riding a merry-go-round of expensive and ineffective therapies. Their minds are firmly made up that pain is mainly “in” tissues, something wounded or irritated inside your meaty, gristly anatomy. Of course, trouble with tissues is important too — but the science has shown us that it is much less dominant a factor than anyone used to think. Countless studies now have shown a surprising, counter-intuitive disconnect between symptoms and problems plainly visible on scans.6 Or, in rheumatoid arthritis, patients often suffer more pain than expected from just the inflammatory erosion of their joints7 — and sensitization is probably the explanation for the “spread” of pain beyond their joints.8 Factors like poor sleep quality may drive up sensitization, and thus are more of a cause of pain than anything going on in the tissues.9

It’s actually quite astonishing how little pain is caused by some seemingly dramatic issues in your tissues! “The evidence that tissue pathology does not explain chronic pain is overwhelming (e.g., in back pain, neck pain, and knee osteoarthritis).” (Moseley)

It all starts to make a lot more sense when you understand how the your pain system works — that pain is strongly regulated by the brain.

Professionals may pay some lip service to the importance of integrating neurological considerations into treatment, but their respect is often more poetic and politically correct than practical.10 Care for chronic pain of all kinds needs to soothe and normalize the nervous system — not challenge it with vigorous manipulations.
What should patients do? (Professionals should read this too!)

Patients with stubborn pain problems should start trying to decide if they are experiencing “too much” pain — more than seems to “make sense.” It’s not an easy question to answer. When we hurt, it always seems like a big deal! Again, it’s just like a patient with hyperacusis trying to figure out if sounds are actually too loud, or just seem that way. Unfortunately, a pain patient cannot ask anyone: “Does that seem really painful to you? Or is that just my central sensitization?”

ZOOM


You’ve got some nerve

Pay attention to this. Not much else matters if this part of you isn’t happy.

If you suspect that your nervous system is no longer giving you useful, sensible pain signals, then be extra cautious about painfully intense therapies and skeptical of biomechanical explanations for your pain (i.e. “you hurt because you have a short leg”) — such factors are only part of the picture, and probably the least important part. Make sure any professional you see is aware of the phenomenon of central sensitization, and start using that as a criteria for judging the quality of their services — if your doctor or therapist doesn’t act like they know what central sensitization is, take your business elsewhere.

You might go through quite a few professionals before finding one who shows some “sensitivity to sensitivity.”

Medications that work on the central nervous system11 are probably the most promising treatment for serious pain system dysfunction. Only a physician trained in the care of chronic pain can prescribe those medications. The best place to look for such a doctor is in a pain clinic — if you have serious chronic pain, you should start looking for one today.

Finally, regardless of whether or not central sensitization is actually happening in your body now, it always makes sense to be kind to your central nervous system. Make your life “safer” and less stressful. Gentler. Easier. Centralization of pain is the process of the central nervous system’s “opinion” of the situation becoming more important than the actual state of the tissues. This is not an “all in the head” problem, but a “strongly affected by the head” problem, like an ulcer that is caused by a very real bug but is severely aggravated by stress.

When your CNS is “freaked out” and over-interpreting every signal from the tissues as more painful than it should, therapy becomes more about soothing yourself and feeling safe than about fixing tissues. Pain is, at a very fundamental level, all about your brain’s assessment of safety: unsafe things hurt. If your brain thinks you’re safe, pain goes down.

So, for the chronic pain sufferer, cultivating “life balance” and peacefulness is a logical foundation for recovery, more important than just a pleasing philosophy — and it’s a worthwhile challenge even if it fails as therapy, of course. This is what I always meant by the idea of “healing by growing up,” long before I had even heard of central sensitization.
What should professionals do? (Patients should read this too!)

At the end of this section, I provide some practical sensitization-friendly treatment principles in point form — but they follow almost automatically from education, which is the main thing. Professionals need to get their bums into gear and simply learn more about central sensitization and pain neurology generally. Once you’ve learned more about sensitization, it’s hard not to do start doing things differently.

Start deconstructing your assumptions about pain with my article on the follies and inconsistencies of structural models of pain, and also read Eyal Lederman’s more academic treatments of the same topic (on low back pain, and core strengthening). Then read Clifford Woolf’s excellent 2010 tutorial, “Central sensitization: Implications for the diagnosis and treatment of pain” — it’s heavy reading, but worth the mental exertion.

There are two websites that consistently produce good, readable, science-based information and resources about central sensitization and related topics: A massage therapist once inflicted extreme discomfort on my armpit because she believed that there were evil “restrictions” in there.Body In Mind and the NOI Group. Also, physical therapist Diane Jacobs is extremely active on Facebook, constantly sharing valuable information on this theme on her page, Neuroscience and Pain Science for Manual Physical Therapists.

Finally: please start treating pain patients like they might have a janky nervous system that is over-reacting to every possible perceived threat — and stop chasing the red herrings of subtle biomechanical problem of dubious clinical relevance, that are mostly nearly impossible to prove or treat anyway, and which often lead you to try to apply to much pressure to tissues. For example, a massage therapist once inflicted extreme discomfort on my armpit because she believed that there were evil “restrictions” in there and that she could rip her way to a cure of a shoulder problem I didn’t even really have. All she accomplished was to swamp my nervous system with nociception, and it could have been disastrous if I’d been a chronic pain patient.

Instead of trying to “fix” anything, seek to create (or at least contribute to) a felt experience of wellness. Make therapy pleasant, easy, and reassuring. Help the patient remember what it’s like to feel safe and good.

This transition can be immensely liberating: it can put an end to the wild goose chases for sources of pain in the tissues in many of your toughest cases.

Fundamentals of Treatment (aka Axioms of Function, by Greg Lehman)

These principles are described in detail in Don't Freak Out by Greg Lehman, BKin, MSc, DC, MScPT. All great points, but the most neglected, important, and relevant to sensitization is obviously 

Rule out red flags
Rule out serious tissue pathology
The body is strong and adaptable
Pain is more about sensitivity than about injury
Treatment is about finding the appropriate stressor
The patient is an active participant in their own care
Decorations (“Useful Though Not Fundamental Axioms”)
Gauge your treatments by assessing sensitivity
Manual therapy is an adjunct to fundamentals
Your assessment reinforces their belief in strength
Comprehensive capacity trumps assessment-driven correctives
Postural and movement assessments reveal habits but not flaws 

https://www.painscience.com/articles/central-sensitization.php

Bring it on! We need to interrupt the morphine spiral!

Powerful New Painkiller With No Apparent Side Effects or Addictive Qualities, May Be Ready in a Year
ScienceDaily (Jan. 30, 2011) — A powerful new painkiller, which was developed on the basis of the research conducted at Stony Brook University and with no apparent side effects or addictive qualities, may now be only a year or two from the consumer market.


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"This offers a major paradigm shift in the control of pain," declares Dr. Simon Halegoua, Professor of Neurobiology & Behavior at Stony Brook who in the 1990s, teamed up with fellow Stony Brook professors Dr. Gail Mandel and Dr. Paul Brehm to identify a novel sodium ion channel involved in the transmission of pain. They predicted that a drug aimed at blocking this channel, PN1/Nav 1.7, would control pain. PN1 (Peripheral Neuron 1), is uniquely expressed in peripheral nerves such as those involved in pain transduction.

"When a patient is given an opiate like morphine, pain signals are still transmitted from sensory nerves to the central nervous system. Morphine action throughout the brain reduces and alters pain perception, but it also impairs judgement and results in drug dependence," explains Halegoua, also director of the Center for Nervous System Disorders at Stony Brook University. "With drugs targeting the PN1/Nav1.7 sodium ion channel, the pain signals would not be transmitted, even by the sensory nerves. And since the central nervous system is taken out of the equation, there would be no side effects and no addictive qualities."

The potential for such drugs is enormous -- the reduction or elimination of pain for patients with cancer, arthritis, migraine headaches, muscle pain, pain from burns, and pain from other debilitating diseases.

He notes that drugs in both oral and topical ointment forms, based on the research he conducted in a basement laboratory at Stony Brook with Mandel, a molecular biologist, and Brehm, an electrophysiologist, are currently in Phase II clinical trials in England and Canada.

The Research Foundation of the State University of New York is the holder of the various patents originating from the work of the Stony Brook researchers. Icagen Inc., now in partnership with Pfizer, holds the exclusive license to these patents and has announced their own drug has now entered Phase I clinical trials in the U.S.

Story Source:

The above story is reprinted (with editorial adaptations by ScienceDaily staff) from materials provided by Stony Brook University.

Will it go away ever

From Dr Spitz at the Foot Pain Center. It's the question we all want answered but may not be happy with what we hear. If it's true what he says, learning to deal with neuropathy is of vital importance and that requires a huge mental adjustment for people who are used to taking a pill to cure what's wrong with them. Your ideas and tips for not letting neuropathy dominate your life please! They will help someone, somewhere!

Will my neuropathy pain and numbness ever go away completely?
The question reminds us of one who asks the “magic eight ball” a question-something like-will I ever become rich? The answer is usually vague-something like-“it’s a possibility.” In answering the question-can my neuropathy ever be cured-I also have to give a vague answer….”it’s possible, but not likely.” In rare instances, neuropathy can be reversed. In some instances when a specific nerve is injured, it can regenerate slowly. For example, in my 36 years of practicing podiatry in Orange County, Ca, I have seen neuropathy from nerve injury from surgery or trauma completely resolve. Nerve entrapments (nerves that bound in scar tissue) such as carpal or tarsal tunnel syndrome are often “treatable” by physical therapy, custom-fitting wrist or ankle braces, or surgery. Still in other cases, when a patient develops medication-induces neuropathy, especially from chemotherapy, complete reversal of symptoms may occur.

These examples are very rare. In actuality, in most instances neuropathy cannot be cured. From a positive perspective, new treatments make neuropathy more tolerable and livable. Diabetes, a major cause of neuropathy, can be better controlled with oral and insulin medications. There is also greater availability and effectiveness of oral and topical medications that can relief neuropathy symptoms of pain, numbness, tingling and burning of the feet. New light therapies including infrared and cold laser, has been shown to be effective in reducing the discomfort of neuropathy. Finally, the medical community has a greater appreciation, knowledge and acceptance of nutritional supplements as a means to control symptoms and slow the progression of the condition.

http://www.footpaincenter.info/will-my-neuropathy-pain-and-numbness-ever-go-away-completely

FIRST PICTURES OF BRCA2 PROTEIN SHOW HOW IT WORKS TO REPAIR DNA

Scientists have taken pictures of the BRCA2 protein for the first time, showing how it works to repair damaged DNA

Mutations in the gene that encodes BRCA2 are well known for raising the risk of breast cancer and other cancers. Although the protein was known to be involved in DNA repair, its shape and mechanism have been unclear, making it impossible to target with therapies.

Researchers at Imperial College London and the Cancer Research UK London Research Institute purified the protein and used electron microscopy to reveal its structure and how it interacts with other proteins and DNA. The results are published today in Nature Structural and Molecular Biology.

Around one in 1000 people in the UK have a mutation in the BRCA2 gene. The lifetime risk of breast cancer for women with BRCA2 mutations is 40 to 85 per cent, depending on the mutation, compared with around 12 per cent for the general population. Many women who test positive for BRCA1 and BRCA2 mutations choose to undergo surgery to reduce their risk of breast cancer. Mutations can also raise the risk of other cancers, such as ovarian, prostate and pancreatic cancer.

The BRCA1 and BRCA2 genes encode proteins involved in DNA repair. The DNA in our cells undergoes damage thousands of times a day, caused by toxic chemicals, metabolic by-products and ultraviolet radiation. Repair mechanisms correct most of this damage, but unrepaired damage can lead to cancer.

The study was led by Professor Xiaodong Zhang from the Department of Medicine at Imperial College London and Dr Stephen West at the London Research Institute.

"This study improves our understanding of a fundamental cause of cancer," said Professor Zhang, a Wellcome Trust Senior Investigator. "It's our first view of how the protein looks and how it works, and it gives us a platform to design new experiments to probe its mechanism in greater detail.

"Once we have added more detail to the picture, we can design ways to correct defects in BRCA2 and help cells repair DNA more effectively to prevent cancer. We can also think about how to make the repair process less effective in cancer cells, so that they die."

The study found that BRCA2 proteins work in pairs -- which the researchers found surprising since BRCA2 is one of the largest proteins in the cell.

BRCA2 works in partnership with another protein called RAD51. BRCA2 helps RAD51 molecules to assemble on strands of broken DNA and form filaments. The RAD51 filaments then search for matching strands of DNA in order to repair the break.

The findings showed that each pair of BRCA2 proteins binds two sets of RAD51 that run in opposite directions. This allows it to work on strands of broken DNA that point in either direction. They also show that BRCA2's job is to help RAD51 form short filaments at multiple sites along the DNA, presumably to increase the efficiency of establishing longer filaments required to search for matching strands.

Autonomic Neuropathy Learning To Understand It

Today's post from simplytiffanyblog.wordpress.com/ (see link below) can be looked at in two ways: either shock and fear that this could happen to you; or as a learning exercise to help you understand the diagnosis you've been given. However, this story is an extreme case of autonomic neuropathy (sometimes called polyneuropathy) and our sympathy goes out to this lady but it doesn't mean that your autonomic neuropathy will develop in the same way. Nevertheless, the realisation that the neuropathy has changed from simply having tingling or unfeeling toes and feet, or even burning as you walk, to something that affects the involuntary functions of the body can be quite a shock. Just as you're beginning to learn to live with the unpleasant physical sensations of nerve damage, your body starts to dysfunction in all sorts of other ways. Learning about this particular form of neuropathy is the first step to understanding what's going on and taking the best possible measures to reduce its effects on your daily life. One way of helping, is to read other people's stories and experiences. Well worth a read.
 

Living With Autonomic Neuropathy (and How Long It Took To Be Diagnosed) Written by simplytiffanyblog 2016
 
  You know, one thing I feel is not talked about enough is the effects of autoimmune diseases. In fact, I didn’t know they had existed until I was diagnosed with one: autonomic neuropathy. It is a rare neurological disorder that can greatly affect a person’s quality of life, although every case varies. I live in a bed. I have been using a wheelchair for ten years now, and have been unable to be out of bed for about five years. I can barely walk, and when I do it is with a walker and the assistance of two people, and only for a very short distance. I want so badly to raise awareness for this disorder and how it affects people, because even my closest relatives – including those who tend to my daily needs and personal care – just can’t fully comprehend what day-to-day living is like for those suffering from autonomic neuropathy.

*Another reason I hoped to find the courage to touch on the subject is the possibility of helping someone else who may have an autoimmune disease and has yet to be diagnosed with it. I had spent many hours searching the web, reading other people’s stories and symptoms similar to mine, as an attempt to diagnose myself while my doctors kept saying that my tests were normal. This is not an illness that is easy to diagnose – and I’m not sure there is a test to clarify that one has it.* It is a matter of ruling out other possibilities based on your symptoms, and finding a doctor who is knowledgeable on the subject.

Autonomic Neuropathy has changed my life.

I could almost say it has ruined my life. All of my hopes and dreams I had of the future could very well be crushed. As previously stated, I live in a bed. It is a daily struggle to find the strength to sit in my wheelchair for 30 minutes, and even more of a struggle to leave the house, which I rarely do. Many doctor appointments have been cancelled at the last minute, and I know the offices who tend to my care get perturbed with me for all the cancellations I cause. Just last month, I made it to a specialist’s office, but could not talk to him because I was vomiting in his trash can throughout my allotted appointment time. I have had three separate specialists tell me that this is the worst case they have ever seen, and they were all astonished that I have encountered such an illness at a young age. Not a comforting thought.

Allow me to briefly explain what this disorder is. Autonomic Neuropathy. Neuro = nerves. Pathy = disorder. So simply put: it’s a nerve disorder. Autonomic is referring to the autonomic nervous system. You know the nervous system that automatically controls the body’s organ functions? When the nerves stop controlling the body’s natural organs and functions, it spells trouble.

A description from online states: “Autonomic neuropathy is a group of symptoms that occur when there is damage to the nerves that manage every day body functions such as blood pressure, heart rate, sweating, bowel and bladder emptying, and digestion.”

I encounter so many separate symptoms from this disorder, that it is hard to remember them all without really pondering the thought. (Then again, the doctors have told me that poor memory could be from my medication.) Let me go into the symptoms that I personally have encountered, although every case varies greatly from patient to patient. Even the organs affected could bring on different symptoms. Imagine having chills in July, and needing to be in front of an air conditioner in February from badly sweating. Imagine your bladder so full it is ready to burst, yet you have no urge to urinate on some days.While on other days, you’re relieving your bladder constantly, even while not drinking as much. Imagine not being hungry most days and therefore not eating that second slice of pizza you are craving. Imagine being perfectly calm one second, then having a full-blown panic attack the next, even when you’re not worrying or feeling fearful in that moment. Imagine at least fifteen migraines a month, and not enough medicine to get you through. There are no triggers for these migraines, they just happen. Imagine never knowing whether your blood pressure is going to be high or low – because it fluctuates immensely between both extremes. Imagine having diabetes and never being able to have your glucose levels controlled. Your stomach won’t digest the way it should, which means your levels will drop and stay low for hours because you took insulin but the stomach decided to not digest the food properly. When it does finally digest, the insulin has already passed through the bloodstream, and your glucose levels consequently spike from having not enough insulin to cover what the body is finally digesting. When to take insulin can’t be guessed, because digestion happens at various times. Therefore insulin must be taken right before your meal. Imagine being so light-headed almost every day that you can barely stand up, and you can’t sit up in bed for long periods of time before you’re dizzy and vomiting. Because your arteries aren’t constricting as they should resulting in a lack of blood flow to the brain, this debilitating symptom can never be cured. Your body has grown used to being in a horizontal position. I can confirm that all of these symptoms have become a part of me. Then there are emotional consequences as well. Can you imagine lying in bed and inviting a friend over to visit? I didn’t spend nearly enough time with my best friend before she moved because of how embarrassing it was to have her see me like this. Not to mention, this really limits what I could do with her. I am thankful to the Lord for allowing me to attend a few years of school, and introducing me to a friend who was even willing to come sit at my bedside, knowing I may get sick and ask her to leave, which has occurred more than once. All we could do was watch TV or talk, but that seemed to be enough for her. Alas, we teenagers became adults and God led her in a new direction, but we still keep in touch when we can.

This all started back when I was ten years old. That was fifteen years ago, and it just gradually progressed over the years. Autonomic neuropathy doesn’t happen instantly. It comes gradual, and there is no cure to reverse nerve damage. It is a rare illness and not often thought of. I couldn’t begin to count all the physicians and clinics I have visited in the past fifteen years! Oddly enough, it wasn’t until my fifteenth year of having this that it was finally diagnosed – just a few months ago actually. Some doctors I had seen told me it was “all in my head”. Some said I was faking this to get out of going to school. I was even accused of sneaking snack food to increase my blood glucose levels while my parents were sleeping. Really?? I am not sure the teachers at school believed me, although I hope they did. I had to skip recess and gym class most days. Field trips became less and less frequent. I started to miss a lot of school days, and it got to be so many that, starting in seventh grade, I had to be home-schooled. I only had one friend from school who stuck by me after that, which is understandable because it is incomprehensible to a child when another child becomes ill.Eventually I stopped going to the mall. It has been six years now since I have been to a movie theater or a Wal-mart. I missed out on my best friend’s graduation, bought concert tickets as her graduation present, but had to ask her to choose another of her friends to go with her because I was too sick. I stayed home and cried that night. I continuously miss my cousin’s chorus concerts in school, was never able to be the “big sister” I had wanted to be. I haven’t participated in family Christmas gatherings or reunions for years! I am passionate about baking and do so on my ‘good days’, but my version of baking is having the ingredients brought to my bed and I make what I can right here. I lost my spacious and beautifully decorated (for a teenager, that is) bedroom in 2009 when I suddenly had to stop climbing stairs. Now I live in a small den connected to my grandma’s living room, with no privacy.Life just never seems to play fairly. It’s a complicated life. An unpredictable life. An often depressing life. An eye-opening life.

If you or someone you know is suffering from unexplained symptoms, even when doctors say all the testing is normal and maybe they don’t even believe you feel the way you do – when you feel that all hope is lost, remember that there is still hope. Don’t you ever give up. I had to wait fifteen years before visiting a doctor who not only learned to believe me, but was able to define the illness causing the strange symptoms I have been facing. And I must be truthful here. When the doctor looked at me and said softly, “There is no way to reverse nerve damage. There is nothing we can do to make this better.”, it was depressing. Yes, I felt hopeless and devastated. But quite honestly: it is a comfort to have a name to match my strange symptoms. There is an odd comfort in simply knowing. If you are suffering from something like this, reach out. Do some research online, find support groups for undiagnosed diseases, surely someone out there has the same undiagnosed disorder as you do. Don’t lose hope.

Appreciate every little thing you have in your life and take nothing for granted, because you never know when you might lose it.

So needless to say, my life isn’t going the way I had planned. I may never fall in love, hold a job, live on my own, have children, or do normal things that we all spend our childhood endlessly dreaming about and waiting for. But if I have learned anything from all of this heartache and sickness, it’s that you should never take anything for granted. I believe that God is in control. Time and chance happen to us all as Solomon wrote in Ecclesiastes, and sometimes we may never find out why — not on earth, anyway. I know for sure that I do not like the hand that I was dealt, but I can’t go back and reshuffle the cards.

If we trust in GOD and HIS promises, I am certain there will be a better life to come. Whatever you are dealing with, please know that you are not alone. There are people online now who you can reach out to. It’s so simple these days! You may even meet someone who is going through a similar situation as you are. Take one day at a time, pray about it, trust God, and never give up! Keep on fighting and hoping for better days to come, I know I will. With God as your captain, you never know when or how the wind may redirect your sail.

I can’t pretend to be an optimist. I’m usually quite the pessimist about this. There are days when I cry, scream, feel angry as if I just can’t take this for another day. And it is in those moments, that we need to remind ourselves of what Mr. Thomas Jefferson once said: “When you reach the end of your rope, tie a knot in it and hang on.”

https://simplytiffanyblog.wordpress.com/2016/09/12/living-with-autonomic-neuropathy/