When Neuropathy Deprives You Of Sleep

Today's post from neuropathyjournal.org (see link below) talks about the much-underestimated problem of fatigue associated with neuropathy. Let's assume that your neuropathy was caused by another condition, or you are suffering from another condition anyway - the chances are that fatigue will play a part in those symptoms anyway. Add to that your nerve damage and muscular weakness and you have serious tiredness on a daily basis. It's not fair folks and other people may look at you as if you're malingering but it's the way it is and one of Lt.Col. Richardson's best pieces of advice in this article is to ignore them; accept the state of your body as being what it is and...go take a nap if you need it.
It may also be worth mentioning that we're entering holiday periods across the world and the strains on your body and mind can be considerably greater. Listen to your body and rest when it all gets a bit too much - you'll thank yourself later and others may also benefit from a rested you too😉

Fatigue in Peripheral Neuropathy
By LtCol Eugene B Richardson, USA (Retired) BA, MDiv, EdM

Unfortunately fatigue is a central part of many neuropathies and especially the immune mediated neuropathies. It is central to many other chronic illnesses that affect the body’s immune system. The causes are often complex and many.

Dr. Scott Berman, in his book Coping with Chronic Neuropathy notes in chapter VIII “Dealing with Fatigue and Insomnia” that this symptom is one of the most difficult and challenging for the neuropathy patient. Dr. Berman is a Psychiatrist, a member of the Board of Directors of the NSN and a Medical Advisor. Scott lives with untreatable CIDP.

He notes:

…that in one study looking at fatigue in autoimmune neuropathy 80% of 113 patients had severe fatigue. The fatigue was independent of motor or sensory symptoms and was rated as one of the top three most disabling symptoms. (“Fatigue in Immune-Mediated Polyneuropathies,” Neurology 53: 8 November 1999, I.S.J. Merkies, et al).


For decades in living with untreated Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), Autonomic Neuropathy (AN) and Progressive Polyneuropathy due to exposure to Agent Orange in Vietnam, I can attest to the facts noted above. While other major symptoms respond to treatment with Immune Globulin (IVIg), the symptom of severe fatigue continues as one of the symptoms that responds only temporarily to the infusions followed by several days of total fatigue following infusion and then with some lessening until the next infusion.

Dr. Norman Latov in his book “Coping with Peripheral Neuropathy”, states what I have heard other neurologists share, that the fatigue we feel, first appearing as weakness, increases as the weakness (or damage) of motor nerves expands. At this point with only a few muscles doing the whole job of lifting a leg or arm or carrying on autonomic functions, the body becomes weak and eventually extreme fatigue occurs. Think of a young child who tires easily because the muscles and nerves are not fully developed and only a few underdeveloped nerves or muscles are doing the job of moving!

On the other hand, to state the obvious, pain in some neuropathies does not help us sleep. Neuropathy patients must seek medical help in finding medications or other options which works for them. The medical practitioners have increased their knowledge in recognizing the reality of neuropathic pain. These strange symptoms from damaged peripheral nerves are present in sensory neuropathies. It is become less common for these patients to be told that it is all in their ‘head’ and are finally getting the help they need.

UPDATE ON FATIGUE IF YOU ARE ON IVIG (September 28, 2016):

Learned something else with my infusion yesterday. I got talked into getting 50 or 60 grams and could not figure out why I had such increase in fatigue, both physical and mental , when I was getting this dosage as they told me that was the dose for my weight. I forgot my line that ‘my body has not read your book” and discovered it was the excess IVIg! Yesterday I had my doctor reduce my dosage to the 40 grams which I was getting previously, and wow…. less fatigue etc…. even the day after. I have had the fatigue explained away in a number of ways, and fatigue is common in chronic illness, but then yesterday I read the brochure again that came from Gammagard. Guess what is NOW listed at top of the reactions? Fatigue and malaise!!!! I am considered going down to 30grams and see if that is even better. The point here is that each of our bodies are different an the brands of IVIg are different! Fatigue is a complex subject and deserves more research and attention as this as many have stated is one of the worst symptoms of many Peripheral Neuropathies.

Impact on family and friends:

Families and friends, as we all have learned, may not understand this reality since we “look so good” and may even believe/suggest that you are just lazy or unmotivated or worse. The best thing you can do for them is to have them watch the DVD Coping with Chronic Neuropathy which will be an education about the impact of any neuropathy on our lives.

Educating yourself about neuropathy:

At any rate, fatigue is something we struggle with every day and often regulates/determines our daily activities.

While fatigue in neuropathy and other chronic illnesses is not fully understood by the experts, from a practical standpoint, here is what I have learned to do or not do in coping with fatigue. If you have found other things that help, send us a message and we will add it to the list.

1. DO NOT think negatively about fatigue, thus feeling guilty about your fatigue. Go take a nap! (See DVD “Coping with Chronic Neuropathy”).

2. Learn when your “fatigue” periods occur, as these often establish a pattern at certain times of the day. Then go lay down and stop moaning about it, as it is what it is until it isn’t.

3. I have learned that you do not even have to actually “sleep”, but just allowing your body to rest/stop for an hour takes care of the exhaustion as the body recovers. But whatever works for you, do it without guilt or apology.

4. For nighttime, have a standard bedtime routine in preparing for sleep that tells your body that it is time to sleep.

5. Do not eat a large meal just before bedtime or take a stimulant that keeps you awake or might interfere with sound sleep (i.e. caffeine, for some alcohol).

6. Do consider drinking a glass of milk as for many this encourages the body to sleep.

7. Do consider one of those special recordings of quiet music or rain falling or similar if it helps.

8. Do consider using a ticking clock if that helps. As a child in the 40s I got my best sleep on the floor in front of the big radio in the living room listening to Dragnet or was it the Lone Ranger, maybe the Big Story. Today most TV programs have the same effect, sleep! Pun intended.

9. Muscle spasms and/or restless leg can make sleeping difficult and rob you of needed sleep. Speak to your doctor and have tests done for calcium, salt, potassium levels and other deficiencies which can make it difficult for muscles to work properly. This is especially true if you are on a diuretic which can empty your body of needed minerals. Getting up and having a glass of orange juice worked for my mother and works for me. If the lack of something is not the problem, have the doctor find out what may be causing these muscle problems. There are also medications to help prevent these muscle spasms and cramps for they are very common in neuropathy.

10. I have found that if I wake up with my mind creating solutions to an issue or writing poetry (happens) and not able to sleep, I go to another room or go do some work on my computer (write out the solution or poetry) until I begin to feel sleepy again. It works for me.

11. For some insomnia is a real curse. There are medications that one can use as Dr. Scott Berman mentions in his book, so speak to your doctor. Frankly, I would work on natural solutions first and be creative to see what works for you. But if ALL else fails these medications may help and be a heaven sent blessing.

12. My Nurse told me that many patients with this effect of a chronic illness, take Folic Acid and it is known to help. So you many want to speak to your doctor in this regard.

13. Dr. Erika Schwartz, M.D. (national leading expert on wellness) suggests that patients with extreme fatigue have the physician check your basal metabolic rate and your thyroid function. Low thyroid is a common cause of fatigue. So speak to your doctor in this regard.

14. So what do you do or not do that helps? Send it to us and we will enter it here!

DISCLAIMER: The information in this article and on the website or the links or in the guidance 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 this information.

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.

https://www.neuropathyjournal.org/fatigue-in-peripheral-neuropathy/

All You Need To Know About HIV And Pain

Well not quite all and despite this being an earlier article, updated in June 2012,  they still don't issue any information about the fact that Lyrica (Pregabalin) has been withdrawn for HIV-related pain by the company that makes it. However, for the rest, this comprehensive article from aidsetc.org (see link below) is about as good an overview as you can find. As they say, 30% to 60% of HIV patients experience some degree of pain related to their condition, so well-explained articles like this are essential for people trying to put two and two together and not come up with five. If, for instance, you've just realised that your neuropathic symptoms are not just a temporary irritation, you may be looking for information that gives a solid framework to what you're feeling - this article will help you make sense of what's happening.

Pain Syndrome and Peripheral Neuropathy

Guide for HIV/AIDS Clinical Care, HRSA HIV/AIDS Bureau

June 2012

Background

The International Association for the Study of Pain defines pain as "an unpleasant sensory and emotional experience associated with actual or potential tissue damage or described in terms of such damage." Pain is subjective, it is whatever the patient says it is, and it exists whenever the patient says it does. Pain is a common symptom in people with HIV infection, especially those with advanced disease. It occurs in 30-60% of HIV/AIDS patients and can diminish their quality of life significantly. Like cancer patients, HIV patients experience an average of 2.5 to 3 types of pain at once. Pain in HIV-infected patients may have many causes (as discussed below).

Peripheral Neuropathy

Pain from HIV-associated peripheral neuropathy is particularly common, and may be debilitating. Peripheral neuropathy is clinically present in approximately 30% of HIV-infected individuals and typically presents as distal sensory polyneuropathy (DSP). It may be related to HIV itself (especially at CD4 counts of <200 cells/µL), to medication toxicity (e.g., from certain nucleoside analogues such as stavudine or didanosine), or to the effects of chronic illnesses (e.g., diabetes mellitus). Patients with peripheral neuropathy may complain of numbness or burning, a pins-and-needles sensation, shooting or lancinating pain, and a sensation that their shoes are too tight or their feet are swollen. These symptoms typically begin in the feet and progress upward; the hands may be affected. Patients may develop difficulty walking because of discomfort, or because they have difficulty feeling their feet on the ground. Factors associated with increased risk of peripheral neuropathy include the following:

• Previous peripheral neuropathy
• Low CD4 count (<200 cells/µL)
• Previous AIDS-defining opportunistic infection or neoplasm
• Vitamin B12 deficiency
• Exposure to stavudine or didanosine
• Use of other drugs associated with peripheral neuropathy (e.g., isoniazid, dapsone, metronidazole, hydroxyurea, thalidomide, linezolid, ribavirin, vincristine)
• Use of other neurotoxic agents (e.g., alcohol)
• Diabetes mellitus

Patients should be assessed carefully before the introduction of a potentially neurotoxic medication (including stavudine or didanosine), and the use of these medications for patients at high risk of developing peripheral neuropathy should be avoided.

Pain is significantly undertreated, especially among HIV-infected women, because of factors ranging from providers' lack of knowledge about the diagnosis and treatment of pain to patients' fear of addiction to analgesic medications. Pain, as the so-called fifth vital sign, should be assessed at every patient visit.

S: Subjective

Self-report is the most reliable method to assess pain.

The patient complains of pain. The site and character of the pain will vary with the underlying cause. Ascertain the following from the patient:

• Duration, onset, progression
• Distribution, symmetry
• Character or quality (e.g., burning, sharp, dull)
• Intensity
• Severity (using the 0-10 scale; see Figure 1)
• Neurologic symptoms (e.g., weakness, cranial nerve abnormalities, bowel or bladder abnormalities)
• Exacerbating or relieving factors
• Response to current or past pain management strategies
• Past medical history (e.g., AIDS, diabetes mellitus)
• Psychosocial history
• Substance abuse and alcohol use history (amount, duration)
• Medications, current and recent (particularly zalcitabine, didanosine, stavudine, and isoniazid)
• Nutrition (vitamin deficiencies)
• Meaning of the pain to the patient

Measuring the severity of the pain: Have the patient rate the pain severity on a numeric scale of 0-10 (0 = no pain; 10 = worst imaginable pain), a verbal scale (none, small, mild, moderate, or severe), or a pediatric faces pain scale (when verbal or language abilities are absent). Note that pain ratings >3 usually indicate pain that interferes with daily activities. Use the same scale for evaluation of treatment response.

Figure 1. Faces Pain Rating Scale (0-10)

Quick screen for peripheral neuropathy: Ask about distal numbness and check Achilles tendon reflexes. Screening for numbness and delayed or absent ankle reflexes has the highest sensitivity and specificity among the clinical evaluation tools for primary care providers. For a validated screening tool, use the ACTG Brief Peripheral Neuropathy Scale (BPNS) to scale and track the degree of peripheral neuropathy.

O: Objective

Measure vital signs (increases in blood pressure, respiratory rate, and heart rate can correlate with pain). Perform a symptom-directed physical examination, including a thorough neurologic and musculoskeletal examination. Look for masses, lesions, and localizing signs. Pay special attention to sensory deficits (check for focality, symmetry, and distribution [such as "stocking-glove"]), muscular weakness, reflexes, and gait. Patients with significant motor weakness or paralysis, especially if progressive over days to weeks, should be evaluated emergently.

To evaluate peripheral neuropathy: Check ankle Achilles tendon reflexes and look for delayed or absent reflexes as signs of peripheral neuropathy. Distal sensory loss often starts with loss of vibratory sensation, followed by loss of temperature sensation, followed by onset of pain. Findings are usually bilateral and symmetric.

A: Assessment

Pain assessment includes determining the type of pain, for example, nociceptive, neuropathic, or muscle spasm pain.

Nociceptive pain occurs as a result of tissue injury (somatic) or activation of nociceptors resulting from stretching, distention, or inflammation of the internal organs of the body. It usually is well localized; may be described as sharp, dull, aching, throbbing, or gnawing in nature; and typically involves bones, joints, and soft tissue.

Neuropathic pain occurs from injury to peripheral nerves or central nervous system structures. Neuropathic pain may be described as burning, shooting, tingling, stabbing, or like a vise or electric shock; it involves the brain, central nervous system, nerve plexuses, nerve roots, or peripheral nerves. It is associated with decreased sensation and hypersensitivity.

Muscle spasm pain can accompany spinal or joint injuries, surgeries, and bedbound patients. It is described as tight, cramping, pulling, and squeezing sensations.

Although pain in HIV-infected patients often results from opportunistic infections, neoplasms, or medication-related neuropathy, it is important to include non-HIV-related causes of pain in a differential diagnosis. Some of these other causes may be more frequent in HIV-infected individuals. A partial list for the differential diagnosis includes:

• Anorectal carcinoma
• Aphthous ulcers
• Appendicitis
• Arthritis, myalgias
• Candidiasis, oral or esophageal
• Cholecystitis
• Cryptococcal disease
• Cytomegalovirus colitis
• Dental abscesses
• Gastroesophageal reflux disease (GERD)
• Ectopic pregnancy
• Herpes simplex
• Herpes zoster
• Kaposi sarcoma
• Lymphoma
• Medication-induced pain syndromes (e.g., owing to growth hormone, granulocyte colony-stimulating factor)
• Medication-induced peripheral neuropathy (e.g., owing to didanosine, stavudine, isoniazid, vincristine)
• Other causes of peripheral neuropathy: diabetes, hypothyroidism, B12 deficiency, syphilis, cryoglobulinemia (especially in patients with hepatitis C coinfection)
• Mycobacterium avium complex
• Myopathy
• Pancreatitis
• Pelvic inflammatory disease
• Toxoplasmosis

P: Plan

Perform a diagnostic evaluation based on the suspected causes of pain.

Treatment

Treatment should be aimed at eliminating the source of pain, if possible. If symptomatic treatment of pain is needed, begin treatment based on the patient's pain rating scale, using the least invasive route. The goal is to achieve optimal patient comfort and functioning (not necessarily zero pain) with minimal medication adverse effects, negotiated with the patient. Use the three-step pain analgesic ladder originally devised by the World Health Organization (WHO); see Figure 2.

Nonpharmacologic interventions

The following interventions can be used at any step in the treatment plan:

• A therapeutic provider-patient relationship
• Physical therapy
• Exercise
• Relaxation techniques
• Guided imagery
• Massage
• Biofeedback
• Reflexology
• Acupuncture
• Thermal modalities (hot and cold compresses or baths)
• Transcutaneous electrical nerve stimulation (TENS)
• Spiritual exploration
• Prayer
• Deep breathing
• Meditation
• Enhancement of coping skills
• Self-hypnosis
• Humor
• Distraction
• Hobbies

Pharmacologic interventions

Principles of pharmacologic pain treatment

• The dosage of the analgesic is adjusted to give the patient adequate pain control.
• The interval between doses is adjusted so that the pain control is uninterrupted. It can take 4-5 half-lives before the maximum effect of an analgesic is realized.
• Chronic pain is more likely to be controlled when analgesics are dosed on a continuous schedule rather than "as needed." Sustained-release formulations of opioids should be used whenever possible.
• For breakthrough pain, use "as needed" medications in addition to scheduled-dosage analgesics. When using opiates both for scheduled analgesia for breakthrough pain, a good rule of thumb is to use 10% of the total daily dosage of opiates as the "as needed" opiate dose for breakthrough pain.
• Oral administration has an onset of analgesia of about 20-60 minutes, tends to produce more stable blood levels, and is cheaper.
• Beware of the risk of prolonged analgesic half-lives in patients with renal or hepatic dysfunction.
• Caution when using combination analgesics that are coformulated with ingredients such as acetaminophen, aspirin, or ibuprofen. Determine the maximum daily dosage of all agents.

The following three steps are adapted from the WHO analgesic ladder. Agents on higher steps are progressively stronger pain relievers but tend to have more adverse effects.

Figure 2. Pharmacologic Approaches to Pain Management: WHO Three-Step Ladder

Adapted from World Health Organization. Cancer Pain Relief and Palliative Care, Report of a WHO Expert Committee. Geneva: World Health Organization; 1990.

Note: "Adjuvants" refers either to medications that are coadministered to manage an adverse effect of an opioid or to so-called adjuvant analgesics that are added to enhance analgesia.

Step 1: Nonopiates for mild pain (pain scale 1-3)

• The most common agents in this step include acetaminophen (650-1,000 mg PO Q6H as needed) and nonsteroidal antiinflammatory drugs (NSAIDs) such as ibuprofen 600-800 mg PO TID with food, and cyclooxygenase-2 (COX-2) inhibitors such as celecoxib and rofecoxib.
• A proton-pump inhibitor (such as omeprazole) can decrease the risk of gastrointestinal bleeding when using NSAIDs.
• Acetaminophen has no effect on platelets and no antiinflammatory properties; avoid use in patients with hepatic insufficiency, and in general limit to 4 g per day in acute use (or 2 g per day for patients with liver disease). Monitor liver function tests in chronic use.
• NSAIDs and acetaminophen can be used together for synergism.
• Note that COX-2 inhibitors have been associated with an increased risk of cardiovascular events and should be used with caution.

Step 2: Mild opiates with or without nonopiates for moderate pain (pain scale 4-6)

• Most agents used to treat moderate pain are combinations of opioids and Step 1 agents. The most common agents are acetaminophen combined with codeine, oxycodone, or hydrocodone. Codeine can be dosed as codeine sulfate, separately from acetaminophen. Beware of acetaminophen toxicity in these combination drugs.
• Other agents include buprenorphine (partial opiate agonist).
• Tramadol (Ultram) is a centrally acting nonopiate that can be combined with NSAIDs. As with opiates, it is prone to abuse. Tramadol lowers the seizure threshold; avoid use for patients with a seizure history. Avoid coadministration with selective serotonin reuptake inhibitors (SSRIs) and monoamine oxidase inhibitors (MAOIs) because of the risk of serotonin syndrome.

Step 3: Opioid agonist drugs for severe pain (pain scale 7-10)

• Morphine is the drug of choice in this step. Start with short-acting morphine and titrate the dosage to adequate pain control, then divide the 24-hour total in half to determine the dosing for the sustained-release morphine, given Q12H. When converting from IV to PO morphine, PO dosage is about two to three times the parenteral dose.
• Other agents used are oxycodone, hydromorphone, fentanyl, levorphanol, methadone, codeine, hydrocodone, oxymorphone, and buprenorphine.
• Avoid meperidine because of the increased risk of delirium and seizures.
• Around-the-clock, sustained-release PO dosing will achieve optimum pain relief.
• Patients unable to take PO therapy may use transdermal fentanyl patches or do rectal administration of sustained-release tablets such as long-acting morphine. Note that the onset of analgesia with fentanyl patches can take more than 12 hours, and the analgesic effect can last more than 18 hours after the patch is removed.
• Anticipate and treat complications and adverse effects of opioid therapy, such as nausea, vomiting, and constipation. Constipation often leads to nausea and can be prevented with prophylactic stool softeners (such as docusate) and stimulant laxatives (such as senna).

Adjunctive treatments

The addition of antidepressant medications can improve pain management, especially for chronic pain syndromes. These agents, and anticonvulsants, usually are used to treat neuropathic pain (discussed in more detail below), but should be considered for treatment of other chronic pain syndromes as well.

Treatment of neuropathic pain

Assess the underlying etiology, as discussed above, and treat the cause as appropriate. Review the patient's medication list for medications that can cause neuropathic pain. Discontinue the offending agents, if possible. For patients on stavudine or didanosine, in particular, switch to another nucleoside analogue if suitable alternatives exist, or at least consider dosage reduction of stavudine to 30 mg BID (consult with an HIV expert). For patients on isoniazid, ensure that they are taking vitamin B6 (pyridoxine) regularly to avoid isoniazid-related neuropathy.

Nonpharmacologic interventions for neuropathic pain

The nonpharmacologic interventions described above can be useful in treating neuropathic pain.

Pharmacologic interventions for neuropathic pain

Follow the WHO ladder of pain management described above. If Step 1 medications are ineffective, consider adding antidepressants, anticonvulsants, or both before moving on to opioid treatments.

Antidepressants

Antidepressant medications often exert analgesic effects at dosages that are lower than those required for antidepressant effects. As with antidepressant effects, optimum analgesic effects may not be achieved until several weeks after starting therapy.

• Tricyclic antidepressants (TCAs): Note that ritonavir and other protease inhibitors may increase the level of TCAs, so start at the lowest dosage and titrate up slowly. Dosages may be titrated upward every 3-5 days, as tolerated. In general, use lower dosages for elderly patients, up to 100 mg QHS.
  • Nortriptyline (Pamelor): Starting dosage is 10-25 mg QHS. Usual maintenance dosage is 20-150 mg QHS.
  • Desipramine (Norpramin): Starting dosage is 25 mg QHS. Usual maintenance dosage is 25-250 mg QHS.
  • Imipramine: Starting dosage is 25 mg QHS. Usual maintenance dosage is 25-300 mg QHS.
  • Amitriptyline (Elavil): Starting dosage is 10-25 mg QHS. Usual maintenance dosage is 25-150 mg QHS. Amitriptyline has the highest rate of adverse effects among the TCAs, so other agents typically are preferred.
  Adverse effects include sedation, anticholinergic effects (e.g., dry mouth, urinary retention), QT prolongation, arrhythmias, and orthostatic hypotension. Monitor TCA levels and EKG at higher dosage levels. There is a risk of overdose if taken in excess.
• SSRIs: See chapter Major Depression and Other Depressive Disorders for dosing, side effects, and drug interactions associated with this class of agents. SSRIs are less effective than TCAs in treating chronic pain.
• Venlafaxine (Effexor): Starting dosage is 37.5 mg daily. Usual maintenance dosage is 75-300 mg daily in divided doses or by extended-release formulation (Effexor XR). Note that there are limited data on using venlafaxine for patients with HIV infection.
• Duloxetine (Cymbalta): Starting dosage is 30-60 mg daily. Dosages of >60 mg per day are rarely more effective for either depression or pain treatment. Note that there are limited data on using duloxetine for patients with HIV infection.

Anticonvulsants

The following agents may be effective for neuropathic pain:

• Gabapentin (Neurontin): Considered first-line for HIV sensory neuropathy for its tolerability. Starting dosage is 100-300 mg QHS; may be increased every 3-5 days to BID or TID to achieve symptom relief. Monitor response and increase the dosage every 1-2 weeks by 300-600 mg/day. Usual maintenance dosage is 1,200-3,600 mg/day in divided doses. Adverse effects include somnolence, dizziness, fatigue, weight gain, and nausea. To discontinue, taper over the course of 7 or more days.
• Pregabalin (Lyrica): Starting dosage is 25-50 mg TID; may be increased by 25-50 mg per dose every 3-5 days as tolerated to achieve symptom relief. Maximum dosage is 200 mg TID. Adverse effects are similar to those of gabapentin. To discontinue, taper over the course of 7 or more days.
• Lamotrigine (Lamictal): Starting dosage is 25 mg QOD; titrate slowly to 200 mg BID over the course of 6-8 weeks to reduce the risk of rash (including Stevens-Johnson syndrome). Adverse effects include sedation,dizziness, ataxia, confusion, nausea, blurred vision, and rash. Note that lopinavir/ritonavir (Kaletra) may decrease lamotrigine levels; higher dosages may be needed. To discontinue, taper over the course of 7 or more days.
• Although phenytoin and carbamazepine have some effectiveness in treating neuropathy, they have significant drug interactions with protease inhibitors and nonnucleoside reverse transcriptase inhibitors, and their use with HIV-infected patients is limited. Topiramate and valproic acid have been used for migraine prophylaxis and anecdotally may be useful for treating peripheral neuropathy, but have not been well-studied in HIV-related neuropathies.

Treatment of Muscle Spasm Pain

Stretching, heat, and massage may help the pain of muscle spasm. This pain also can respond to muscle relaxants such as baclofen, cyclobenzaprine, tizanidine, benzodiazepines, as well as intraspinal infusion of local anesthetics for spinal injuries.

Substance Abuse, HIV, and Pain

Some health care providers hesitate to treat pain in patients with current or past substance abuse because of concern about worsening these patients' dependence on opioids or suspicion that such patients are seeking pain medications for illicit purposes. However, the following points should be considered:

• Many patients with current or past substance abuse do experience pain, and this pain should be evaluated by care providers and treated appropriately.
• Failure to distinguish among addiction, tolerance, and dependence can lead to undertreatment of chronic pain by health care providers.
• Addiction (substance abuse) is a complex behavioral syndrome characterized by compulsive drug use for the secondary gain of euphoria.
• Pharmacologic tolerance refers to the reduction of effectiveness, over time, of a given dosage of medication.
• Physical dependence is the consequence of neurophysiologic changes that take place in the presence of exogenous opioids.
• Aberrant use of pain medications, if it develops, is best managed by an interdisciplinary team of providers from HIV clinical care, psychiatry, psychology, pharmacy, social services, and drug addiction management.
• Drug-drug interactions between certain antiretroviral medications and methadone can decrease methadone serum concentrations (see chapter Drug-Drug Interactions with HIV-Related Medications). If this occurs, methadone dosages may need to be increased to prevent opiate withdrawal.
• As part of chronic pain management in patients with substance abuse, consider establishing a written pain-management contract to be signed by the clinician and the patient. The contract should:
  • Clearly state limits and expectations for both the patient and provider.
  • Identify a single clinician responsible for managing the pain regimen.
  • Tell the patient what to do if the pain regimen is not working.
  • Describe the procedure for providing prescriptions (e.g., one prescription given to the patient, in person, for a limited period of time, such as 1 month).
  • List the rules for dealing with lost medications or prescriptions.

Patient Education

• Pain management is part of HIV treatment, and patients should give feedback to allow the best treatment decisions. If pain persists for more than 24 hours at a level that interferes with daily life, patients should inform their health care provider so that the plan can be changed and additional measures, if needed, can be tried.
• Patients should not expect full pain relief in most cases, but enough relief that they can perform their daily activities.
• "Mild" pain medications (e.g., NSAIDs, aspirin, acetaminophen) usually are continued even after "stronger" medications are started because their mechanism of action is different from that of opiates. This combination of pain medication has additive effects, so that pain may be controllable with a lower narcotic dosage.
• Patients taking "around-the-clock" medications, should take them on schedule. Those taking "as needed" medications should take them between doses only if they have breakthrough pain.
• Opiates may cause severe constipation. Patients must remain hydrated and will likely need stool softeners, laxatives, or other measures. They should contact their health care provider promptly if constipation occurs.
• Patients should avoid use of recreational drugs and alcohol when taking opiates because opiates can interact with them or cause additive adverse effects, possibly resulting in central nervous system depression, coma, or death.
• Patients taking opiates should avoid driving and operating machinery.

http://www.aidsetc.org/aidsetc?page=cg-801_pain

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Chronic Inflammatory Neuropathy Is That What You Have

Today's post from nlm.nih.gov (see link below) may confuse some readers; partly because there are just way too many names for neuropathic conditions but also because they're not sure if their symptoms are 'bad' enough to qualify as having chronic inflammatory neuropathy. This article describes what it is, what the symptoms are and why it happens, as well as showing some tests and assessments. The main difference lies in the cause - the immune system attacks the nervous system and gradually degrades nerves and their linings but after that, the reasons why can be (as you know) many and varied.

Chronic inflammatory polyneuropathy
 US National Library of medicine 2014
 
Chronic inflammatory polyneuropathy involves nerve swelling and irritation (inflammation) that leads to a loss of strength or sensation.

Causes

Chronic inflammatory polyneuropathy is one cause of damage to nerves outside the brain or spinal cord (peripheral neuropathy). Polyneuropathy means several nerves are involved. It usually affects both sides of the body equally.

Chronic inflammatory demyelinating polyneuropathy (CIDP) is the most common chronic neuropathy caused by an abnormal immune response. CIDP occurs when the immune system attacks the myelin cover of the nerves.

The cause of chronic inflammatory polyneuropathy is an abnormal immune response. The specific triggers vary. In many cases, the cause cannot be identified.

It may occur with other conditions, such as:
Autoimmune disorders
Chronic hepatitis
Diabetes
HIV
Inflammatory bowel disease
Systemic lupus erythematosus
Lymphoma
Paraneoplastic syndrome
Thyrotoxicosis
Side effects of medicines to treat cancer or HIV

Symptoms

Difficulty walking due to weakness or trouble feeling your feet
Difficulty using the arms and hands or legs and feet due to weakness
Sensation changes, such as numbness or decreased sensation, pain, burning, tingling, or other abnormal sensations (usually affects the feet first, then the arms and hands)
Weakness, usually in the arms and hands or legs and feet

Other symptoms that can occur with this disease:
Abnormal movement
Breathing difficulty
Fatigue
Hoarseness or changing voice
Loss of function or feeling in the muscles
Muscle atrophy
Muscle contractions
Speech impairment
Swallowing difficulty
Uncoordinated movement

Exams and Tests

The doctor will examine you and ask questions about your medical history. The physical exam shows:
Loss of muscle mass
No reflexes
Muscle weakness or paralysis
Sensation problems on both sides of the body

Tests may include:
Electromyography (EMG)
Nerve conduction tests
Nerve biopsy
Spinal tap
Blood tests may be done to look for specific proteins that are causing the immune attack on the nerves

Which other tests are done depends on the suspected cause of the condition. Tests may include x-rays, imaging scans, and blood tests.

Treatment

The goal of treatment is to reverse the attack on the nerves. In some cases, nerves can heal and their function can be restored. In other cases, nerves are badly damaged and cannot heal, so treatment is aimed at preventing the disease from getting worse.

Which treatment is given depends on how severe the symptoms are, among other things. The most aggressive treatment is usually only given if you have difficulty walking or if symptoms interfere with your ability to care for yourself or perform work functions.

Treatments may include:
Corticosteroids to help reduce inflammation and relieve symptoms
Other medications that suppress the immune system (for some severe cases)
Plasmapheresis or plasma exchange to remove antibodies from the blood
Intravenous immune globulin (IVIg), which involves adding large numbers of antibodies to the blood plasma to reduce the effect of the antibodies that are causing the problem

Outlook (Prognosis)

The outcome varies. The disorder may continue long term, or you may have repeated episodes of symptoms. Complete recovery is possible, but permanent loss of nerve function is not uncommon.

Possible Complications

Pain
Permanent decrease or loss of sensation in areas of the body
Permanent weakness or paralysis in areas of the body
Repeated or unnoticed injury to an area of the body
Side effects of medications used to treat the disorder

When to Contact a Medical Professional

Call your health care provider if you have a loss of movement or sensation in any area of the body, especially if your symptoms get worse.

Alternative Names

Polyneuropathy - chronic inflammatory; CIDP; Chronic inflammatory demyelinating polyneuropathyPolyneuropathy - chronic inflammatory; CIDP; Chronic inflammatory demyelinating polyneuropathy

References

Katirji B, Koontz D. Disorders of peripheral nerves. In: Daroff RB, Fenichel GM, Jankovic J, Mazziotta JC, eds.Katirji B, Koontz D. Disorders of peripheral nerves. In: Daroff RB, Fenichel GM, Jankovic J, Mazziotta JC, eds. Bradley's Neurology in Clinical Practice. 6th ed. Philadelphia, PA: Elsevier Saunders; 2012:chap 76.

Shy ME. Peripheral neuropathies. In: Goldman L, Schafer AI, eds.Shy ME. Peripheral neuropathies. In: Goldman L, Schafer AI, eds. Goldman's Cecil Medicine. 24th ed. Philadelphia, PA: Elsevier Saunders; 2011:chap 428.

Update Date 7/27/2014

Updated by: Joseph V. Campellone, MD, Department of Neurology, Cooper University Hospital, Camden, NJ. Review provided by VeriMed Healthcare Network. Also reviewed by David Zieve, MD, MHA, Isla Ogilvie, PhD, and the A.D.A.M. Editorial team.

https://www.nlm.nih.gov/medlineplus/ency/article/000777.htm

IF YOU ARE OVER 60 DRINK UP FOR YOUR MEMORY

Researchers from the University of Texas Medical Branch at Galveston, University of Kentucky, and University of Maryland found that for people 60 and older who do not have dementia, light alcohol consumption during late life is associated with higher episodic memory -- the ability to recall memories of events.

Moderate alcohol consumption was also linked with a larger volume in the hippocampus, a brain region critical for episodic memory. The relationship between light alcohol consumption and episodic memory goes away if hippocampal volume is factored in, providing new evidence that hippocampal functioning is the critical factor in these improvements. These findings were detailed in the American Journal of Alzheimer's Disease and Other Dementias.

This study used data from more than 660 patients in the Framingham Heart Study Offspring Cohort. These patients completed surveys on their alcohol consumption and demographics, a battery of neuropsychological assessments, the presence or absence of the genetic Alzheimer's disease risk factor APOE e4 and MRIs of their brains. The researchers found that light and moderate alcohol consumption in older people is associated with higher episodic memory and is linked with larger hippocampal brain volume. Amount of alcohol consumption had no impact on executive function or overall mental ability.

Findings from animal studies suggest that moderate alcohol consumption may contribute to preserved hippocampal volume by promoting generation of new nerve cells in the hippocampus. In addition, exposing the brain to moderate amounts of alcohol may increase the release of brain chemicals involved with cognitive, or information processing, functions.

"There were no significant differences in cognitive functioning and regional brain volumes during late life according to reported midlife alcohol consumption status," said lead author Brian Downer, UTMB Sealy Center on Aging postdoctoral fellow. "This may be due to the fact that adults who are able to continue consuming alcohol into old age are healthier, and therefore have higher cognition and larger regional brain volumes, than people who had to decrease their alcohol consumption due to unfavorable health outcomes."

Although the potential benefits of light to moderate alcohol consumption to cognitive learning and memory later in life have been consistently reported, extended periods of abusing alcohol, often defined as having five or more alcoholic beverages during a single drinking occasion is known to be harmful to the brain.

Can You Laugh At Your Nerve Pain

Today's post from scopeblog.stanford.edu (see link below) has no direct link to neuropathy but does have a link with living with chronic pain and if you have nerve damage, you know you belong in that family. it's basically an account of how someone compensates their chronic pain with humour and laughter. you need to read the article to see how this works for her but the point on this blog is that we (neuropathy patients) could seriously do with a good laugh now and then, so if you have any funny jokes related to pain, or neuropathy, or any funny stories from the same source, please send them in and share them with the rest of us. Googling 'neuropathy jokes' is a bit like looking for an oasis in the desert but there must be related humour out there somewhere!! Otherwise, this article may just stimulate your laughter buds into action - it's the best form of pain distraction you know.

Laughing through the pain: A comedy writer’s experience with chronic illness
Inspire Contributor on October 13, 2015

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, on a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; this month’s column comes from a Los Angeles woman with Ehlers-Danlos Syndrome.

When you fall down at least once a week, you learn to laugh it off. No matter how much it hurts, you laugh because you know it makes other people more comfortable with what’s going on. If they believe you’re all right, your story is a comedy rather than a tragedy. I’m quite sure that this lesson I learned as a child (and have called on hundreds of times since) had a big part in my decision to become a comedy writer and performer, a career I began a decade before I was finally diagnosed with Ehlers-Danlos Syndrome.

Everyone with my rare connective tissue disorder knows the routine of explaining our condition to others. I like to gauge at what point a healthy person’s eyes glaze over and they check out completely; it’s usually around when I get to my issues that are caused by EDS, like arthritis and gastroparesis. After my first few monotonous rundowns of what ails me failed to enthrall anyone, I began weaving elements of humor into my explanations: “I have hip dysplasia, so I can’t be in the Westminster dog show… My joints hyperextend, which is great for sex but terrible for JV soccer… I tore my hamstring in Greece, but it’s not like that’s the worst thing that ever happened there.” Once engaged, people are much more likely to find some aspect of my condition that interests them and ask about that. This type of light interaction is far more comfortable than feeling like I’m teaching an NIH seminar on some disease nobody cares about.

In my experience, the people who really appreciate someone with a sense of humor are those I rely on most: Doctors and nurses. Just after my diagnosis, I was so confused and in so much pain that I was relatively curt with medical professionals. I also thought that if I even smiled, they would think I was faking my illness. But once my symptoms started to improve a bit and I understood more about what was happening, I tried being open and jovial with those who were treating me. The result was great; it should not have come as a surprise that a doctor who likes his patient is more likely to pay attention to her. Regardless of how badly I feel or how much I think something devastating may be happening to my body, I now try my hardest to make whatever dumb jokes I can manage in the hospital or at the doctor’s office. The staff members, many of whom somehow make it through day after day of maudlin events and miserable people, respond quite positively to my Tommy Boy quotes and ridiculous metaphors about how the exam room smells like a robot dog’s pee. (In fact, I would like to think I get better treatment because of David Spade.)

The need to laugh off my issues has become so innate that it is now my first response when I go into shock. My old roommate loves to tell the story of when I stepped onto our back porch and it looked like a sniper hit me: I was down in an instant. She ran out to see what was wrong and found me laughing hysterically, screaming, “I’m fine! Everything’s fine!” When I saw her worried, maternal expression, it made me even more afraid; I knew I had to alleviate her concern for both of our sakes, so I kept up my laughing and made jokes even as the unbelievable pain set in. As it turns out, I had ruptured my Achilles tendon and torn my calf muscle so badly that the orthopedic surgeon said it looked “like pulled pork; like a zipper went down the whole thing from top to bottom.” Looking back, I laughed and joked to make my roommate think everything was fine – the way you would treat a toddler who fell down and looks to you to gauge the severity of his injuries – but really I was the toddler, and making myself laugh got me through it.

I do not know where my life would be without my love of comedy, nor how I would have made it through the ups and downs of Ehlers-Danlos Syndrome. When it comes to relating to people, passing time in the hospital, or just convincing ourselves that there’s a lighter side to almost every situation, the most important part of the human body is the funny bone.

Paula Dixon is a comedy writer and photographer based in Los Angeles. She is a graduate of the USC School of Cinematic Arts and the Spéos Institute of Photography in Paris. She will be returning soon with her humorous podcast The Chronic Life, which covers chronic illness as well as pop culture and personal revelations.

http://scopeblog.stanford.edu/2015/10/13/laughing-through-the-pain-a-comedy-writers-experience-with-chronic-illness/

Autonomic Neuropathy The Nerve Damage You Have No Control Over

Today's post from dressamed.com (see link below) talks about autonomic neuropathy, which may be a new term to many people. Basically, it's a form of neuropathy that affects the involuntary functions of the body, breathing, digestion, excretion, sweating, sexual function, etc. You have no control over these functions and when they go wrong thanks to nerve damage, the consequences can make life pretty miserable. Most people begin their neuropathy lives with the well-known symptoms of numbness, tingling, burning etc in the feet and/or hands and for some it stays that way but for others, the damage spreads to the autonomic functions and you begin to notice things going wrong. Your doctor will inevitably try to rule out all other other possible reasons why this is happening and it may be years before you get a proper diagnosis of autonomic neuropathy. The treatment for your pain will remain the same but you may find your medicine chest being expanded to include treatments for dysfunctions elsewhere in your body. I'm sorry, there's no sugar-coated pill to this story: if you have autonomic neuropathy it sucks but there are always ways to improve your situation but you need to take time to research and explore your options. Working with your doctor and not waiting for him or her to provide answers, is the key.

When Autonomic Neuropathy Affects Bodily Functions 
Posted on May 11, 2016 Posted in Staff Pick by Staff Pick

Do any of these symptoms sound familiar? 
 
Dizziness and fainting when you stand up
Difficulty digesting food and feeling really full when you’ve barely eaten anything
Abnormal perspiration – either sweating excessively or barely at all
Intolerance for exercise – no, not that you just hate it but your heart rate doesn’t adjust as it should
Slow pupil reaction so that your eyes don’t adjust quickly to changes in light
Urinary problems like difficulty starting or inability to completely empty your bladder

If they do, you could have autonomic neuropathy. Especially if you have diabetes, your immune system is compromised by chemotherapy, HIV/AIDS, Parkinson’s disease, lupus, Guillian-Barre or any other chronic medical condition.

You need to see a doctor immediately. A good place to start would be a physician well versed in diagnosing and treating nerve disease and damage, like your local clinician who specializes in our treatment protocol.
What Is Autonomic Neuropathy?

Autonomic neuropathy in itself is not a disease. It’s a type of peripheral neuropathy that affects the nerves that control involuntary body functions like heart rate, blood pressure, digestion and perspiration. The nerves are damaged and don’t function properly leading to a break down of the signals between the brain and the parts of the body affected by the autonomic nervous system like the heart, blood vessels, digestive system and sweat glands.

That can lead to your body being unable to regulate your heart rate or your blood pressure, an inability to properly digest your food, urinary problems, even being unable to sweat in order to cool your body down when you exercise.

Often, autonomic neuropathy is caused by other diseases or medical conditions so if you suffer from: 

Diabetes
Alcoholism
Cancer
Systemic lupus
Parkinson’s disease
HIV/AIDS

Or any number of other chronic illnesses, you stand a much higher risk of developing autonomic neuropathy. Your best course of action is not to wait until you develop symptoms. Begin a course of preventative treatment and monitoring with a clinician to lessen your chances of developing autonomic neuropathy.

How Will The Clinician Diagnose My Autonomic Neuropathy?

If you have diabetes, cancer, HIV/AIDs or any of the other diseases or chronic conditions that can cause autonomic neuropathy, it’s much easier to diagnose autonomic neuropathy. After all, as a specialist in nerve damage and treatment, your clinician is very familiar with your symptoms and the best course of treatment.

If you have symptoms of autonomic neuropathy and don’t have any of the underlying conditions, your diagnosis will be a little tougher but not impossible.

Either way, your clinician will take a very thorough history and physical. Make sure you have a list of all your symptoms, when they began, how severe they are, what helps your symptoms or makes them worse, and any and all medications your currently take (including over the counter medications, herbal supplements or vitamins).

Be honest with your clinician about your diet, alcohol intake, frequency of exercise, history of drug use and smoking. If you don’t tell the truth, you’re not giving your clinician a clear picture of your physical condition. That’s like asking him to drive you from Montreal to Mexico City without a map or a GPS. You may eventually get to where you want to be, but it’s highly unlikely.

Once your history and physical are completed, your clinician will order some tests. Depending upon your actual symptoms and which systems seem to be affected, these tests might include:
Ultrasound
Urinalysis and bladder function tests
Thermoregulatory and/or QSART sweat tests
Gastrointestinal tests
Breathing tests
Tilt-table tests (to test your heart rate and blood pressure regulation). Once your tests are completed and your clinician determines you have autonomic neuropathy, it’s time for treatment. 

Treatment and Prognosis

Our clinicians are well versed in treating all types of peripheral neuropathy, including autonomic neuropathy. They adhere to a very specialized treatment protocol that was developed specifically for patients suffering from neuropathy. That’s why their treatments have been so successful – neuropathy in all its forms is what they do.

Autonomic neuropathy is a chronic condition but it can be treated and you can do things to help relieve your symptoms.

Your clinician will work with you and your other physicians to treat your neuropathy and manage your underlying condition. They do this through:

Diet Planning and Nutritional Support
You need to give your body the nutrition it needs to heal.

If you have gastrointestinal issues caused by autonomic neuropathy, you need to make sure you’re getting enough fiber and fluids to help your body function properly.

If you have diabetes, you need to follow a diet specifically designed for diabetics and to control your blood sugar.
If your autonomic neuropathy affects your urinary system, you need to retrain your bladder. You can do this by following a schedule of when to drink and when to empty your bladder to slowly increase your bladder’s capacity.

Individually Designed Exercise Programs
If you experience exercise intolerance or blood pressure problems resulting from autonomic neuropathy, you have to be every careful with your exercise program. Make sure that you don’t overexert yourself, take it slowly. Your clinician can design an exercise program specifically for you that will allow you to exercise but won’t push you beyond what your body is capable of. And, even more importantly, they will continually monitor your progress and adjust your program as needed.

Lifestyle Modifications
If your autonomic neuropathy causes dizziness when you stand up, then do it slowly and in stages. Flex your feet or grip your hands several times before you attempt to stand to increase the flow of blood to your hands and feet. Try just sitting on the side of your bed in the morning for a few minutes before you try to stand.
Change the amount and frequency of your meals if you have digestive problems.

Don’t try to do everything all at once. Decide what really needs to be done each day and do what you can. Autonomic neuropathy is a chronic disorder and living with any chronic condition requires adaptations. Your clinician knows this all too well and will work with you to manage your level of stress and change your daily routines to help you manage your condition and your life.

All of these changes in conjunction with medications, where needed, will make it easier to live with autonomic neuropathy and lessen the chances of serious complications. Early intervention with a NeuropathyDR® clinician is still the best policy if you have any of the underlying conditions that can cause autonomic neuropathy. But if you already have symptoms, start treatment immediately.

About The Author

Dr. John Hayes, Jr. is an Evvy Award Nominee and author of “Living and Practicing by Design” and “Beating Neuropathy-Taking Misery to Miracles in Just 5 Weeks!”. His work on peripheral neuropathy has expanded the specialty of effective neuropathy treatments to physicians, physical therapists and nurses. A free Ebook, CD and information packet on his unique services and trainings can be obtained by registering your information at neuropathydr.com. To book interviews and speaking engagements call 781-754-0599.

Syndicated by EzineArticles

https://www.dressamed.com/root/autonomic-neuropathy/

Autonomic Neuropathy The Neuropathic Sniper That You Dont See Coming

Today's post from dressamed.com (see link below) is a no-nonsense and easy to understand article about autonomic neuropathy. For those of you who don't already know, this is nerve damage that affects many of the 'involuntary' actions that we take for granted in our daily lives, such as breathing, digestion, sexual response, blood pressure and many more. The problem with autonomic neuropathy is that it creeps up on you over a period of time and can seriously affect the quality of your life. If you're worried you may be heading in this direction, or already know what's happening, read the article, talk to your doctor and do as much of your own research as possible. By using the search button to the right of this blog, you will find many more articles about autonomic neuropathy and how best to learn to live with it and treat its symptoms.

When Neuropathy Affects Bodily Functions 
Posted on May 11, 2016 Posted in Staff Pick by Staff Pick

Do any of these symptoms sound familiar?

Dizziness and fainting when you stand up
Difficulty digesting food and feeling really full when you’ve barely eaten anything
Abnormal perspiration – either sweating excessively or barely at all
Intolerance for exercise – no, not that you just hate it but your heart rate doesn’t adjust as it should
Slow pupil reaction so that your eyes don’t adjust quickly to changes in light
Urinary problems like difficulty starting or inability to completely empty your bladder

If they do, you could have autonomic neuropathy. Especially if you have diabetes, your immune system is compromised by chemotherapy, HIV/AIDS, Parkinson’s disease, lupus, Guillian-Barre or any other chronic medical condition.

You need to see a doctor immediately. A good place to start would be a physician well versed in diagnosing and treating nerve disease and damage, like your local clinician who specializes in our treatment protocol.

What Is Autonomic Neuropathy?

Autonomic neuropathy in itself is not a disease. It’s a type of peripheral neuropathy that affects the nerves that control involuntary body functions like heart rate, blood pressure, digestion and perspiration. The nerves are damaged and don’t function properly leading to a break down of the signals between the brain and the parts of the body affected by the autonomic nervous system like the heart, blood vessels, digestive system and sweat glands.

That can lead to your body being unable to regulate your heart rate or your blood pressure, an inability to properly digest your food, urinary problems, even being unable to sweat in order to cool your body down when you exercise.

Often, autonomic neuropathy is caused by other diseases or medical conditions so if you suffer from:

Diabetes
Alcoholism
Cancer
Systemic lupus
Parkinson’s disease
HIV/AIDS

Or any number of other chronic illnesses, you stand a much higher risk of developing autonomic neuropathy. Your best course of action is not to wait until you develop symptoms. Begin a course of preventative treatment and monitoring with a clinician to lessen your chances of developing autonomic neuropathy.

How Will The Clinician Diagnose My Autonomic Neuropathy?

If you have diabetes, cancer, HIV/AIDs or any of the other diseases or chronic conditions that can cause autonomic neuropathy, it’s much easier to diagnose autonomic neuropathy. After all, as a specialist in nerve damage and treatment, your clinician is very familiar with your symptoms and the best course of treatment.

If you have symptoms of autonomic neuropathy and don’t have any of the underlying conditions, your diagnosis will be a little tougher but not impossible.

Either way, your clinician will take a very thorough history and physical. Make sure you have a list of all your symptoms, when they began, how severe they are, what helps your symptoms or makes them worse, and any and all medications your currently take (including over the counter medications, herbal supplements or vitamins).

Be honest with your clinician about your diet, alcohol intake, frequency of exercise, history of drug use and smoking. If you don’t tell the truth, you’re not giving your clinician a clear picture of your physical condition. That’s like asking him to drive you from Montreal to Mexico City without a map or a GPS. You may eventually get to where you want to be, but it’s highly unlikely.

Once your history and physical are completed, your clinician will order some tests. Depending upon your actual symptoms and which systems seem to be affected, these tests might include: 

Ultrasound
Urinalysis and bladder function tests
Thermoregulatory and/or QSART sweat tests
Gastrointestinal tests
Breathing tests
Tilt-table tests (to test your heart rate and blood pressure regulation). Once your tests are completed and your clinician determines you have autonomic neuropathy, it’s time for treatment. 

Treatment and Prognosis

Our clinicians are well versed in treating all types of peripheral neuropathy, including autonomic neuropathy. They adhere to a very specialized treatment protocol that was developed specifically for patients suffering from neuropathy. That’s why their treatments have been so successful – neuropathy in all its forms is what they do.

Autonomic neuropathy is a chronic condition but it can be treated and you can do things to help relieve your symptoms.

Your clinician will work with you and your other physicians to treat your neuropathy and manage your underlying condition. They do this through:

Diet Planning and Nutritional Support

You need to give your body the nutrition it needs to heal.

If you have gastrointestinal issues caused by autonomic neuropathy, you need to make sure you’re getting enough fiber and fluids to help your body function properly.

If you have diabetes, you need to follow a diet specifically designed for diabetics and to control your blood sugar.

If your autonomic neuropathy affects your urinary system, you need to retrain your bladder. You can do this by following a schedule of when to drink and when to empty your bladder to slowly increase your bladder’s capacity.

Individually Designed Exercise Programs

If you experience exercise intolerance or blood pressure problems resulting from autonomic neuropathy, you have to be every careful with your exercise program. Make sure that you don’t overexert yourself, take it slowly. Your clinician can design an exercise program specifically for you that will allow you to exercise but won’t push you beyond what your body is capable of. And, even more importantly, they will continually monitor your progress and adjust your program as needed.

Lifestyle Modifications

If your autonomic neuropathy causes dizziness when you stand up, then do it slowly and in stages. Flex your feet or grip your hands several times before you attempt to stand to increase the flow of blood to your hands and feet. Try just sitting on the side of your bed in the morning for a few minutes before you try to stand.

Change the amount and frequency of your meals if you have digestive problems.

Don’t try to do everything all at once. Decide what really needs to be done each day and do what you can. Autonomic neuropathy is a chronic disorder and living with any chronic condition requires adaptations. Your clinician knows this all too well and will work with you to manage your level of stress and change your daily routines to help you manage your condition and your life.

All of these changes in conjunction with medications, where needed, will make it easier to live with autonomic neuropathy and lessen the chances of serious complications. Early intervention with a NeuropathyDR® clinician is still the best policy if you have any of the underlying conditions that can cause autonomic neuropathy. But if you already have symptoms, start treatment immediately.

About The Author

Dr. John Hayes, Jr. is an Evvy Award Nominee and author of “Living and Practicing by Design” and “Beating Neuropathy-Taking Misery to Miracles in Just 5 Weeks!”. His work on peripheral neuropathy has expanded the specialty of effective neuropathy treatments to physicians, physical therapists and nurses. A free Ebook, CD and information packet on his unique services and trainings can be obtained by registering your information at neuropathydr.com. 

Syndicated by EzineArticles

https://www.dressamed.com/root/when-neuropathy-affects-bodily-functions/

Ten More Things To Consider If You Have Nerve Pain

Today's post from dailyhealthrecords.com (see link below) is yet another list of learning experiences from someone living with chronic pain. People love making lists and judging by their popularity on the internet, people love reading them too. There's nothing wrong with that and nothing wrong with sharing tips based on your own experiences, so long as you don't descend into cliché and so long as you keep it practical and realistic. Having said all that, with it's implied criticism of new age wisdoms, if you skim through the 10 headings and don't want to read it after that, then this article is not for you. Personally, I agree with everything she says!

10 Things I’ve Learned About Living With Chronic Pain
December 26, 2015 lussy

I was first diagnosed with chronic pain when I was 7 years old. I just turned 21. For the past 14 years, I have told as few people as possible about my illness. I have my reasons for this. It’s not a very glamorous topic, and I would like for most people to assume I’m a normal 21 year old.

Recently, my condition seems to be changing, deteriorating more rapidly than doctors can, or want to, deal with. These past few months have been full of exercises in looking for silver linings, but there are times I’ve had to be honest with myself about my disease and my pain. Learning how to cope with pain is a process, and I had to start writing down things I needed to remind myself: don’t take your pain out on other people, try to remember that people won’t understand when or how much pain you’re in, don’t defend yourself for making your health a priority. They were hard truths to deal with, but they have helped me.

I wake up in pain, and I go to sleep in pain. I can not explain the kind of toll this takes on you mentally, physically, and emotionally. These coping mechanisms worked for me, and I can only reference my own pain, hence the following truths are my stories, but I do believe that other pain patients experience many of the same frustrations I do. I can’t talk about what living in pain is like for everyone. What I can do is talk about my pain, something I largely avoid for several reasons — the chronically ill and in pain are meant to be brave and handle their suffering in inspiring ways, talking about it with the wrong people can make it worse, and trying to keep up a positive front all being important ones.

These are some things I’ve learned about how to be chronically ill, and how to manage living with chronic pain, and still try to remain as sane as possible. I hope that should other chronic pain patients read this, that they will find some comfort in knowing they are not alone in their pain.

1. People can’t understand.

Unless you live in chronic pain, or with a chronic illness, you cannot possibly imagine it. For months, my health has been rapidly deteriorating, and I realized quickly most people either don’t understand, or don’t care.

The hardest part of dealing with chronic illness/pain for me has been cutting people out of my life who make it harder to deal with. This wasn’t a choice, but a necessity. I couldn’t take any extra negativity, I couldn’t handle defending my situation time and time again to people who were supposed to be my friends. I guess I understand, it’s hard for them to deal with, maybe. Unlike me, they don’t have to deal with it. It is also important to remember that when people can’t see your suffering, when they can’t see outwardly that you are in pain, they can’t be expected to understand.

The reason for the archaic pain scale with the faces slowly becoming more warped in pain with a scale of 1-10 is because there is no test for pain, no base line, there is just pain. I’m lucky to have a few friends who — while they don’t pretend to understand — still put up with me and do their best to help me be comfortable and get out of the house. Find your people and keep them by your side, you’re going to need them. Get anyone out of your life who is making your journey more difficult, you don’t need that kind of negativity.

2. Some medical professionals suck at their job.

First, all hail good nurses. Good nurses have done more for me than any doctor I’ve seen so far. That said, for every one good nurse there seem to be two bad ones. The ratio changes for doctors. By my experience, almost all doctors suck at managing chronic illness and pain. They want you in and out of their office, and they don’t want to deal with you on a weekly, or even more frequent basis. Yes, most people I have gone to asking for help — be it an ER doctor, an internist, or one of the dozens of specialists I’ve seen — have shrugged, decided they don’t want to deal with this and washed their hands of me. Not all doctors are created equal. I have had exactly one good doctor so far, and I’ve seen dozens.

I’m not saying good doctors don’t exist, I’m saying that, as in any profession, some people excel far above others. Keep searching for the right doctor for you, it’s going to be miserable and time consuming and frustrating, but despite all the bad doctors I’ve met, I believe there is one out there that can help me. I’ve just got to find them.

3. You get to feel however you want.

People won’t understand what it’s like to try to get through a day, and you don’t have to explain why you feel how you do today. I found myself frustrated whenever someone asked “How are you feeling?” If my answer was “good,” then I found they were less likely to be understanding if I needed a break, or if I couldn’t keep up with the group. Wasn’t I feeling good today? It’s all relative.

For me, a good day is one where I do not reach a 9 on that pain scale. If I told someone I was feeling bad, or having a bad pain day, I would quickly be reminded there are worse conditions than mine, that I could be dead already, that there are people starving all over the world. These are all true things, but do not negate my right to have a bad day.

Staying positive is an important part of managing life with chronic pain, but bad days still happen. To lie and say that even when you’re in pain every day has to be bright and sunshine-y is not mental health, it’s crap. You get to feel however you want and you don’t have to explain why you are having a bad day. You also don’t have to defend why your health takes priority over everything else. If people around you don’t understand that, you might want to re-consider who you are keeping in your inner circle. While you have the right to feel however you want, be careful not to let your pain cause you to lash out at people. It is hard to be patient when you are hurting, but you can’t get let your frustrations out on people. You have the right to be in pain, but pain does not give you a free pass to become cruel.

I have also noticed that people seem to think that chronic illness somehow instills some sort of super human strength inside the person suffering. As if all sick people experience pain but survive solely by persevering with integrity and grace. I have to side with Julius Caesar who said, “It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.” Make no mistake, I do not wish for my life to end. But there are days where the pain has been so great that I would have been very happy to die. That’s the side of chronic pain the universe doesn’t see — how much you keep wrapped up to try to put on a façade of a “normal” person.

I’ve had many days where I found myself losing track of the conversations happening around me, enveloped in pain and trying to hold back tears or outward manifestations of the pain. I know many other chronic pain patients who try to stay quiet about their illness, and it is brave and wonderful and inspiring and all those words often used to describe those of us living in the genre of sick personhood. You still are allowed to have bad days, even if the world could be a worse place, and you don’t always have to pretend the bad days aren’t bad days.

4. Be honest.
 
I’ve learned you must be honest with people when you are sick, and when you need them to understand. My teachers, coaches, and friends I’ve trusted with the details of my illness/treatment are all people I need to be up front with when I need extra time for an assignment, or I can’t go to practice, or I’m not feeling up to going out. However, it’s also very important to state that you don’t have to disclose any of your medical history to people you are not comfortable discussing it with. It’s your choice to decide how, when, and in what detail you would like to discuss your illness with someone, so never feel bad about keeping details to yourself if you are uncomfortable discussing them. Your body, your rules.

Also, be honest with your doctors. This can be difficult because I feel that, culturally, I have been raised to think that doctors had the answer and that I didn’t need a second opinion. If you don’t think they’re listening, if you don’t think the current treatment is working, if you think more tests need to be run — demand it. I’ve learned that playing nice while trying to get treatment just doesn’t work. I don’t seem to get any attention until I start advocating for myself. I’ve also learned to be honest when evaluating doctors. Before I tried to always be kind. Maybe that doctor had a bad day, maybe their head is somewhere else, perhaps they’re exhausted. These are all things that are understandable- but if you are not receiving the care you deserve it’s time to start making calls. I’ve realized that the only way to get better treatment is to make them give it to you. You deserve the best quality of life possible.

5. Listen to your body.

When you’re a professional sick person, you have to learn to listen to your body. Stay in if you need to stay in. I was a 20 year old student-athlete who was active on my university’s campus when my illness quickly took a turn for the worse. Giving up my sport was heart breaking, but physically I couldn’t do it anymore. I pushed myself long and hard before I listened to what my body was telling me: slow down, you can’t do this. I needed to take a step back from all the things I was participating in and try to get my health back. I still find myself frustrated when I have to cancel plans with friends, I even had to cancel my 21st birthday celebrations because I just wasn’t feeling up to it. I could have pushed it, but I knew how I felt, and I knew that if I went out and forced myself to stay out all night that I would pay for it later. It is hard to give up things you want to do just because your organs suck at being organs, and it is disappointing to be stuck in a body you particularly care for. I do believe that I have more good days when I slow down, and don’t push myself harder than my body can handle. Learn to listen to your body’s limits, and it can help increase your overall wellness.

6. Go out when you feel up to it.

When you’re in constant pain, or you just don’t ever seem to feel good, it can be easy to become a homebody. Maintaining your quality of life as much as possible is essential to coping with chronic illness. I know — I just said you should stay in if you need to, but if you are feeling up to going out by all means do so! Staying in sick all day every day can quickly lead to depression and anxiety. Even small things like going out to a movie seem to do wonders to cheer me up if I’ve been stuck home sick for a few days. If I find myself having a good day and I didn’t have plans, I try to take advantage of healthy moments, even if that just means a walk around the block with a friend. It can be tricky to find where the line between going out and having fun and going out and wearing yourself out so that you’re even sicker after is, but searching for that area is well worth the effort it requires.

7. Accept your body, even when you hate it.

Having my body shut down on me so painfully and rapidly was hard for me to accept, I was so active before and my illness was very manageable. While I have every intention to stay involved with my case, to find relief and answers, I had to accept that — for right now — this is the one body and one life I have. I’ve had to sit back and watch my athleticism slowly disappear, the dark circles develop under my eyes from sickness and exhaustion, and watched the color drain from my lips. It is beyond frustrating to watch my body waste away and have no say in it, no way to stop it. I am not particularly fond of my current situation. But when I accepted it, when I stopped trying to act as if I wasn’t sick, and started to listen to my body I found myself having more less bad days, which for chronic pain patients are synonymous with good days.

8. Seek out anything that will keep you smiling.

Every chronic pain patient I have met has also struggled with depression, some mild some as debilitating as the pain that caused it. Find anything you can to keep your spirits up: good books, movies, a special tea to drink, a place in the park that you like to visit — do whatever you can to keep smiling. It sucks to be sick and in pain, and unfortunately for chronic pain patients the elimination of pain is a fantasy. So we must deal with the pain while trying not to let it change who you are. Pain can change you, quickly. It makes you angry, depressed, frustrated, exhausted, scared, and other unpleasant adjectives. If you can find one song, one poem, one comedy sketch that can get you to smile hold onto it, and refer back to them often. Try to find whatever you can to get you through the next second, hour, or day.

9. You are allowed to ignore people who think they know what’s best.

For some reason if you are chronically ill, people in your life from family members to random hospital personnel will start to fancy themselves physicians. They might recommend a new diet, snorting some homeopathic remedy, covering yourself in some sort of home made salve, or some other ridiculous thing they once read on the internet. These people mean well. They hope that their insight will bring you relief. You are allowed to ignored these good intentioned people, specifically the ones who have no knowledge of your illness or medicine. I’ve taken to smiling, saying “I’ll look into that,” and then politely excusing myself from the conversation.

10. Advocate for yourself.
This is the single most important thing I’ve learned as a professional sick person: you must advocate for your own health. Doctors see many patients every day, nurses are busy, and none of them know what it’s like to live in your body. Take action, get involved in your case, start doing research. Go into appointments with documentation, ideas, second opinions, anything you can get to push your treatment forward. Medical professionals may not understand the urgency of your case, or the severity of your pain, so make it clear. Write down everything you need to talk about before your visit, and make sure you get every question you have answered. If your doctor can’t answer them, get a referral or find another opinion. Nothing is more important than your health and trying to maintain the best quality of life possible.

http://dailyhealthrecords.com/10-things-ive-learned-about-living-with-chronic-pain-2/