Showing posts with label Feel. Show all posts
Showing posts with label Feel. Show all posts

Tuesday, 4 April 2017

Do You Feel Believed When Youre In Pain


Today's post from the ever reliable pain-topics.org (see link below) looks critically at how other people's (and thus patients') pain is judged. Neuropathy sufferers will be well aware of how this can work and how you can feel disbelieved by both doctors and those around you. There is no sensation like neuropathy pain, tingling or numbness and unless the other person understands that, it can be difficult convincing them that your suffering is genuine. Doctors are just as guilty of making judgements based on body language, especially if the patient tries just a little too hard to convince them that what they're feeling is real. People with neuropathy need to find ways of describing their symptoms in a way that is relevant to the listener (the 'walking with a sock full of wet sand' is a good one for the numbness; or 'like walking on bare bones' for neuropathic aching; or 'like being connected to the mains' for the tingling. The actual pain you feel is more difficult but if you feel you are being doubted by a doctor, ask him or her directly then at least you'll know if you still have work to do. Most doctors will hear the story and symptoms of a neuropathy patient and immediately know what's going on - the symptoms are pretty unique - but friends, family and colleagues may take a bit more persuading. Don't give up; you have the right to be taken seriously.


Pain Doubted if Medical Basis is Missing
Posted bySB. Leavitt, MA, PhD Tuesday, December 11, 2012

Many chronic pain sufferers often feel that their maladies are misunderstood, disbelieved, or unaccepted by others. New research confirms that if there is no clear and convincing biomedical cause identified to satisfactorily explain the pain other people tend to discount it and have little sympathy toward the patient.

Researchers at Ghent University in Belgium conducted a pair of studies to investigate the impact of medical and psychosocial information on estimations of another person’s pain, along with observers’ emotional responses and their behavioral tendencies toward the person with pain [De Ruddere et al. 2012]. Study participants were recruited from the community: Study 1: N = 29 women, 10 men; Study 2: N = 29 women, 12 men.

Participants variously viewed photographs of 4 alleged patients (2 men, 2 women; ages 44 to 57 years) described as having shoulder pain conditions. With each photograph there was a written brief vignette describing 2 of 4 different circumstances: either the presence or absence of a medical explanation for the pain, along with either the presence or absence of psychosocial influences attributed to the pain experience.
For example, pain was medically explained as associated with either “a little fracture,” “an inflammation,” or a “muscle strain”; in the no-cause condition the vignette simply stated that “based upon medical examination there appeared to be no injury to the shoulder.”

Psychosocial influences were described in Study 1 vignettes from the patients’ perspectives: eg, “[Fictitious patient name] reports having more pain when experiencing job stress” or “…more stress at home.” In Study 2, these influences were more authoritatively attributed to medical opinion: eg, “…the doctor decided that psychosocial factors have an impact upon the pain, in particular job stress and feelings of anxiety” or “…in particular relationship problems and a depressive mood.”

If psychosocial influences did not exist, in Study 1 they simply were not mentioned. In Study 2, however, there was a more explicit declaration that “…the doctor decided that psychosocial factors do not have an impact upon the pain.” Thus Study 1 and 2 were similar, except for a much stronger attribution of psychosocial factors, or lack thereof, in the second study.

After examining each vignette/photo, study participants were shown a brief video segment (8 seconds) displaying the respective patient having his/her shoulder examined and expressing facial signs of moderate pain. Then, on 4 different 100mm visual analog scales (VAS), participants rated each patient’s pain, their own distress upon viewing the patient in pain as well as their sympathy toward the patient, and their inclination to help the patient.

Writing in the December 2012 edition of the Journal of Pain, the researchers report that, in both Studies 1 and 2, results indicated significantly lower ratings on all measures when medical evidence for pain was absent. That is, when a medical explanation for a patient’s pain was missing, participants rated the pain as lower and their own distress at viewing the patient as lower, as well as less sympathy toward the patient and less willingness to help.

Surprisingly, there was no overall effect found on any of the 4 outcome measures due to claimed psychosocial influences on patients’ pain. The one small exception was in Study 2, in which participants indicated feeling less personal distress when psychosocial factors were explicitly indicated (ie, noted by examining physicians as having an impact).

The researchers conclude that the findings suggest pain is taken less seriously when there is no medical evidence to help explain it, and psychosocial influences on the patient — eg, stress at work or home, anxiety, relationship issues — are not considered as important contributors to pain. This line of investigation is important, the researchers note, for better understanding how patients’ pain for which there is no clear medical explanation is interpreted and judged by other persons.

COMMENTARY: Research in the social psychology field is often most interesting when it confirms — more or less scientifically — what most people already think they intuitively know. This present study confirms what many patients already have expressed in prior comments to various UPDATES articles; that is, when chronic pain is unexplained by a diagnosis of some severe biopathology patients often face significant obstacles to being taken seriously by their families, friends, and healthcare providers.

In the study by De Ruddere et al. it was somewhat puzzling that psychosocial factors appeared to have so little influence on participants’ perceptions. It seemed that medical evidence for the pain superseded all other information when judging the genuineness of pain and consequent feelings of sympathy or helpfulness toward the patient.

As often is the case in the pain management field, more research is needed before leaping to any firm conclusions. For one thing, patients in the video segments displayed what had been determined as representing moderate pain; expressions of more severe pain might have had much greater impact on assessments — evoking higher ratings of pain (whether or not medically explained) and greater empathy by study participants.

Another important limitation was that participants had no personal relationships or direct interactions with the fictitious patients; completely unlike what would be the case in clinical settings or among family/friends. Essentially, the researchers attempted to create a laboratory setting for assessing human variables that are far more complex in everyday life or clinical practice.

Participant-group sizes — Group 1, N= 39; Group 2, N=41 — were probably adequate to provide reasonable statistical power for detecting significant differences, avoiding Type II (false negative) findings. [Readers should note that numbers of participants indicated in the study abstract and the article text itself are grossly discordant; we are using numbers from the text.]

However, composition of the participant groups must be considered: overall, the two groups were unequally balanced toward women, average participant age was significantly lower than the test patients (roughly 28 vs 51 years), and approximately half of participants were college students. So, generalizing the findings at this time to how older persons, healthcare providers, or family/friends might react could be erroneous.

Therefore, there are still unanswered questions about how the qualities of patients and those interacting with them, as well as available information about patient medical condition and/or psychosocial influences, affect judgments when it comes to pain assessment, sympathy, and helping behavior. The researchers, themselves, acknowledge most of these limitations; yet, this study is an important step toward a better understanding of several factors that might significantly bias perceptions of patients’ pain and impact the care that they receive in medical settings and at home.

REFERENCE: De Ruddere L, Goubert L, Vervoort T, et al. We Discount the Pain of Others When Pain Has No Medical Explanation. J Pain. 2012(Dec);13(12):1198-1205


http://updates.pain-topics.org/2012/12/pain-doubted-if-medical-basis-is-missing.html

Tuesday, 15 November 2016

How Neuropathy Can Feel For Many


Today's post from livewellthy.org (see link below) is short but to the point. This person has neuropathy caused by a trapped nerve in the spine (radiculopathy) and accurately describes how it can feel to suffer from severe neuropathic symptoms. In the beginning as the writer describes, it's easy to feel that you're going mad with these crazy symptoms but the sooner you go to your doctor with them, the quicker you will find out what's wrong with you. You may not end up being cured but at least you'll know what you're dealing with.

 
Neuropathy
Stewart B Segal, MD
LIVEWELLTHY.ORG:November 4, 2012

My legs on fire! Someone poured gas on my right leg and lit a match! At least, that’s what it feels like. No, my pants are not going up in flames, my skin is not blistering. And, no, I’m not going insane! I have a
neuropathy. The disc in my back is pressing on a nerve causing my body to lie to my brain.

Can you imagine what would be going through my mind if I did not know what was happening to me? I might think I was going crazy. I might even think I was possessed. I would think twice before telling anyone about my problem! Yet people suffer from neuropathies of all sorts everyday and fail to do anything about them.

If you are possessed by a neuropathy like me, experiencing numbness, tingling, burning pain,
cramping, twitching, weakness, or an assortment of other peculiar sensations somewhere on your body, see your doc. Most probably, you are not crazy.

There are many treatment options available depending on the cause of your neuropathy. Sometimes, a few weeks on an anti-inflammatory or a few days on a steroid will end your misery. Sometimes, a topical treatment will suffice. Sometimes, nothing short of surgery offers relief; and sometimes, you have to live with it.

What’s truly important is that you understand what is causing your symptoms and that means seeing your doc. Of almost equal importance is following the treatment plan your doc helps you design!

Be happy, live Wellthy!



http://livewellthy.org/2012/11/03/neuropathy.aspx







Friday, 10 June 2016

Feel Like Joining A Neuropathy Clinical Research Study


Today's post from neuropathy.org (see link below) is a call for people who may be interested in taking part in clinical trials and research studies. Without these trials and studies, new treatments and drugs can't be developed and brought onto the market more quickly for neuropathy patients. One of the chief complaints of people living with neuropathy is the amount of time it takes for any promising new development to reach the doctors' prescription pads. One of the ways we can all help to speed up that process is by taking part in studies relevant to our own situation. Maybe something mentioned below will appeal to you, otherwise you could ask your neurologist if there are other appropriate studies going on in your area. It's a commitment certainly but one which may benefit many people in the long run.


 Could You Benefit From Potential Treatments Accessible Through Clinical Research Studies?
neuropathy.org




You can play an active role in bringing new therapies to the community by participating in clinical research studies. Clinical trials are studies in which researchers test new drugs for safety and effectiveness. Participating in clinical studies gives you a chance to advance and accelerate research, access emerging therapies that are being studied, and help bring new therapies to the community. Talk to your doctor to learn more about clinical trials.
When a pharmaceutical company develops a new drug, it sponsors a clinical trial to test the drug in people with the disease for which it was intended. The process is regulated by the Food and Drug Administration (FDA). The FDA’s approval is required before a drug is allowed to be used. Natural products such as vitamins or food supplements, which are commonly sold in health food stores as alternative medicines, are not regulated by the FDA, and are not required to undergo clinical trials.

Listed below are some neuropathy clinical trials that are currently looking for participants. For a more comprehensive list of neuropathy clinical trials and to locate clinical trials in your vicinity, visit www.clinicaltrials.gov and search using the words "neuropathy" and the name of the city you live in (eg neuropathy, New York City).


Tetrodotoxin (TTX) for Pain Resulting from Chemotherapy Treatment
Chemotherapy-induced peripheral neuropathy (CIPN) is a major dose-limiting side effect of many chemotherapeutic agents, including vincristine, paclitaxel, cisplatin, oxaliplatin, bortezomib, and ixabepilone.Chemotherapy-induced peripheral neuropathy occurs in greater than 40% of patients. For this segment of our community, neuropathy and neuropathic pain is the “price of survival” that severely compromises quality of life and daily function. To improve the peripheral neuropathy, the chemotherapy dosing is often either decreased or discontinued potentially affecting tumor responsiveness, prognosis, and survival. There is an unmet medical need for treatment of cancer patients with chemotherapy-induced neuropathic pain (CINP). This clinical research study aims to investigate the efficacy and safety of multiple dose levels of tetrodotoxin (TTX) versus placebo in moderate to severe neuropathic pain caused by chemotherapy. Read more...

Hematopoietic Stem Cell Transplantation in Chronic Inflammatory Demyelinating Polyneuropathy
Chronic inflammatory demyelinating polyneuropathy is disease believed to be due to immune cells, cells which normally protect the body, but are now attacking the nerves in the body. As a result, the affected nerves fail to respond, or respond only weakly, to stimuli causing numbing, tingling, pain, and progressive muscle weakness. The likelihood of progression of the disease is high. This study is designed to examine whether treating patients with high dose cyclophosphamide (a drug which reduces the function of the immune system) and ATG (a protein that kills the immune cells that are thought to be causing your disease), followed by return of the previously collected blood stem cells will stop the progression of CIDP. Stem cells are undeveloped cells that have the capacity to grow into mature blood cells, which normally circulate in the blood stream. The purpose of the high dose cyclophosphamide and ATG is to destroy the cells in the immune system. The purpose of the stem cell infusion is to evaluate whether this treatment will produce a normal immune system that will no longer attack the body. Read more...

Safety and Efficacy of CBX129801 in Patients With Type 1 Diabetes
Currently available treatments for patients with type 1 diabetes focus on replacing insulin, but not C-peptide. In healthy individuals, C-peptide and insulin are co-secreted in equal amounts into circulation.  But in patients with type 1 and some patients with type 2 diabetes, destruction of the beta cells results in deficiency of both insulin and C-peptide. The purpose of this clinical research study is to determine the beneficial effects of CBX129801 (Ersatta™) -- a long-acting synthetic human C-peptide -- following weekly subcutaneous administration for 12 months in type 1 diabetes mellitus patients with mild to moderate diabetic peripheral neuropathy. Read more...

Efficacy and Saftety of ISIS TTR Therapy for Familial Amyloid Polyneuropathy
Familial Amyloid Polyneuropathy is a rare, hereditary disease caused by mutations in the transthyretin (TTR) protein. TTR is made by the liver and secreted into the blood. TTR mutations cause it to misfold and deposit in multiple organs causing FAP. When the nervous system is involved, patients present with progressive sensorimotor and autonomic neuropathy. The purpose of this clinical research study is to determine if ISIS TTR Rx can slow or stop the nerve damage caused by TTR deposits. This study will enroll late Stage 1 and early Stage 2 FAP patients. Patients will receive either ISIS TTR Rx or placebo for 65 weeks. Read more...

A Study Assessing the Safety and Tolerability of Fingolimod as an Oral Therapy for CIDP 
This clinical research study seeks to evaluate the safety and tolerability of fingolimod (FTY720) 0.5 mg -- administered orally once daily -- in the treatment of people with chronic inflammatory demyelinating neuropathy (CIDP). Fingolimod is a sphingosine 1-phosphate receptor (S1PR) modulator. It interacts with S1P receptors located on lymphocytes (a type of immune cell that is made in the bone marrow and is found in the blood and in lymph tissue). This interaction causes the lymphocytes to sequester in the lymph nodes, thus preventing them from moving towards, and damaging, targeted parts of the body. In experimental autoimmune neuritis, a T cell-mediated model of CIDP, fingolimod completely suppressed partial paralysis affecting the lower limbs (or paraparesis) and significantly decreased T-cell, B-cell, and macrophage infiltration and demyelination of sciatic nerves. Read more...

Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) and Treatment With Subcutaneous Immunoglobulin (IgPro20)
This clinical study seeks to assess subcutaneous immunoglobulin (IgPro20) for chronic inflammatory demyelinating polyneuropathy (CIDP). Patients on intravenous immunoglobulin (IVIG) maintenance therapy enrolled in this clinical research study will be assessed during three separate study periods. Patients first undergo a period of up to 12 weeks to test for on-going need of immunoglobulin therapy. Those patients will be administered IVIG during an IVIG re-stabilization period. Patients with improved and maintained adjusted inflammatory neuropathy cause and treatment scale (INCAT) in the IVIG Re-stabilization period will continue to the subcutaneous (SC) treatment period of the study. Patients entering the 24 week SC treatment period will be randomized to receive weekly infusions of 1 of 2 IgPro20 doses (0.2 or 0.4 g/kg body weight) or placebo. Read more...

Genetic and Physical Study of Childhood Nerve and Muscle Disorders
The National Institute of Neurological Disorders and Stroke (NINDS) is conducting a clinical research study aimed at diagnosing patients with neuromuscular and neurogenetic disorders with congenital or pediatric onset and to studying the natural history and mechanism of these disorders. Some nerve and muscle disorders that start early in life (before age 25), like some forms of muscular dystrophy, can run in families. However, the genetic causes of these disorders are not known. Also, doctors do not fully understand how symptoms of these disorders change over time. Researchers want to learn more about genetic nerve and muscle disorders that start in childhood by studying affected people and their family members, as well as healthy volunteers. Read more…

Efficacy and Safety of ALN-TTR02 for the Treatment of Transthyretin (TTR)-Mediated Amyloidosis
The purpose of this clinical research study is to evaluate the efficacy and safety of the investigational drug patisiran (ALN-TTR02) in patients with transthyretin (TTR) mediated amyloidosis (also known as Familial Amyloidotic Polyneuropathy or FAP). FAP is an inherited, progressively debilitating, and fatal disease caused by mutations in the TTR gene. TTR protein is produced primarily in the liver and is normally a carrier for retinol binding protein. Mutations in TTR cause abnormal amyloid proteins to accumulate and damage body organs and tissue, such as the peripheral nerves and heart, resulting in intractable peripheral sensory neuropathy, autonomic neuropathy, and/or cardiomyopathy. Read more...

Cognitive Behavioral Therapy for Diabetic Neuropathic Pain
The purpose of this clinical research study is to evaluate the efficacy of cognitive behavioral therapy (CBT) for the management of persistent pain associated with diabetic peripheral neuropathic pain. Study participants will be evaluated pre-treatment (baseline), 12 weeks post-baseline (post-treatment), and at 36 weeks post-baseline (follow-up). Baseline assessment will include a physical examination to confirm the diagnosis of diabetic neuropathy. The primary outcome measure will be pain intensity. Secondary outcome measures will be pain quality, pain-related disability, and physical and emotional functioning. Measures of treatment feasibility will also be examined. CBT plus standard pharmaceutical care (CBT/SC) is compared to an educational intervention plus standard pharmaceutical care (ED/SC) treatment condition.CBT and ED will be provided in 10 weekly, individual treatment sessions of 60 minutes. Read more...

Milnacipran for the Treatment of Idiopathic Neuropathy Pain
Many clinical trials for neuropathic pain are done in patients with diabetic neuropathy. Idiopathic neuropathy, however, is a common diagnosis and accounts for 25% of all neuropathies, and over 50% of small fiber neuropathies. The information in the clinical research study on milnacipran—an experimental medication that helps serotonin and noradrenaline work more effectively on the central nervous system—being conducted at Columbia University in New York—will provide information on whether the drug provides benefit as a medication for idiopathic neuropathic pain. Read more...

Improving Neuropathy and Mobility In Early Diabetes
 Neuropathy is the most common complication of diabetes mellitus. Impaired glucose regulation (IGR) is associated with development of peripheral neuropathy coupled with gait and mobility impairment that may be disabling for the patient.. Investigators at the VA Maryland Health Care System and University of Maryland (Dr. James Russell), and Ann Arbor VAMC and University of Michigan (Drs. Neil Alexander and Kim Gretebeck) are conducting a study on patients with impaired glucose tolerance or who have recently been diagnosed with type II diabetes and also have peripheral neuropathy. The purpose of this study is to determine if an individually tailored diet and physical enhancement program can improve mobility, physical activity, and neuropathy in people with early diabetes. Read more...

Study of Efficacy of ARA 290 on Corneal Nerve Fiber Density and Neuropathic Symptoms of Subjects With Sarcoidosis
 Sarcoidosis is an inflammatory disease that affects multiple organs in the body. In people with sarcoidosis, abnormal masses or nodules (called granulomas) consisting of inflamed tissues form in certain organs of the body that may alter the normal structure and possibly the function of the affected organ(s). Small-fiber neuropathy is one of the disabling and often chronic manifestations of the disease. The purpose of this clinical research study is to determine whether ARA 290 is effective in the treatment of the neuropathic symptoms of sarcoidosis. In this study, subjects with sarcoidosis and symptoms of small fiber neuropathy will be administered ARA 290 or placebo by subcutaneous injection daily for 28 days. In addition to monitoring the safety of the treatment, the symptoms of the subjects will be assessed with several questionnaires, function tests, and measurement of nerve fibers in their cornea and skin (via a non-invasive test and a biopsy, respectively). Read more... 

http://www.neuropathy.org/site/PageServer?pagename=Benefits_Of_Trials