Holiday Tips

Apologies to all Southern Hemisphere readers but this will apply to you in six months time

Apologies too for stating the obvious

Tips and Tricks
To Enjoy the Summer
Neuropathy should not stop you from enjoying the
outdoors this summer. Here are some tips and tricks to
keep in mind:

• Before going away, check your medications: have you got enough? Have you got a medical passport if going to another country? If necessary, translate a few key words into the language of the destination country - you never know when you'll need a doctor or a chemist.

• Drink lots of fluids and prevent dehydration

• Wear light, non-constricting clothing to beat the heat

• If you can afford it, why not indulge in a pedicure before you go away - smooth and well-clipped nails will avoid unnecessary infections if you damage them

• Invest in good, comfortable shoes that provide just the right amount of support, also for the beach and other surfaces

• Before putting on shoes, check them for any loose objects or rough edges (especially if new for the hols!Break 'em in first)

• Protect your feet even in the house; despite the temptation to take the cool option, take care walking barefoot unless you're sure you're not going to cut yourself or run into infections.

• Prevent falls by laying out your furniture so that walkways are free of clutter, especially in unfamiliar holiday accommodations. I know you're suffering from foot pain, or numb feet and are not blind but you'd be surprised how much walking you take for granted in your own house.

• Pace yourself when you are outdoors, especially activities requiring repetitive movements like tramping round a historic site. You know your own limits - take rests where needed and remind your friends that you can only do what you can do

• Inspect your feet and hands daily for breaks in skin; address them
before they become infected.

• Be aware of temperature changes - the neuropathic body will need to adjust

• Be aware of the effects of dietary change

• You know what alcohol can do to your balance - everything in moderation eh!

• Try to relax as much as possible - it's a holiday; it's supposed to take your mind off the every day grind not add to your worries!

Ten Tips For Living With Chronic Illness

 Today's article from www.rheumatoidarthritisguy.com (see link below) continues with the loose theme of the last few posts of finding ways to cope with neuropathy pain. It comes from a rheumatoid arthritis site and there is no connection with HIV but the ideas and tips given, apply to all those who are suffering from chronic symptoms, pain or otherwise. Definitely worth a read - this person knows what it's like to exist in a world that often doesn't understand.

 

 
10 Things I’ve Learned From Living With Chronic Illness
Adventures of RA Guy | November 5, 2011

1. Getting all of the rest that I need does not make me lazy. Even when I’m not moving, my body is expending a huge amount of energy on powering its overactive immune system, and on defending itself from the subsequent pain and inflammation. So while many times it might look like I’m not doing much, I’m still probably doing more than most others.

2. No matter how much it hurts, I still have to find a way to move. (Of course, I’m not advocating for movement that results in injury/harm.) During one of my first major bouts, I thought that the best thing to do was to move as little as possible. This really didn’t lower the pain, but it did eventually result in atrophied muscles, months of daily physical therapy, and having to learn how to walk again.

3. If I’m going to be in pain, I might as well be doing something that I enjoy. I may not be able to do certain things like I once used to be able to, but chances are I can still do more than what I thought possible. Learning this lesson, firsthand, is priceless for my mind, body, and soul.

4. And for those moments when it’s just not possible to do something, cancelling at the last minute is perfectly acceptable. I’ll be honest, and I’ll tell you the exact reasons why I’m not able to participate. Please don’t take it personally…I’m just as disappointed, if not more, than you are.

5. If you are a doctor or healthcare professional, you must earn my respect. I, the patient, will work just as hard to earn your respect. I will ask lots of questions, and I will listen to what you have to say. When it comes to treatment options, though, I will be the final decision maker. (After all, no one knows my body better than I do.)

6. Achieving acceptance is hard. (I used to think that doing so meant “giving up.”) Just when it feels like I’ve accepted everything there is about my illness, something pops up, and I want to deny everything, all over again. With chronic illness, I don’t think there is such a thing as “complete” acceptance…there’s just a continuous journey, back and forth, between denial, acceptance, and so many other emotions.

7. No matter how bad I’m feeling, no matter how much pain I’m in, it’s *not* okay to take out my anger and frustrations on other people, especially those who are close to me. Yes, it’s fine–sometimes even healthy–to feel angry and frustrated…but I have to know how to release this energy in a way that doesn’t harm myself, or those around me.

8. Never, ever, compare my pain and illness to those of others. My illness is mine, and mine alone. I’m completely entitled to feel everything–emotions, symptoms, and otherwise–that results from living with my illness. (I’m entitled to feel everything, that is, except shame.)

9. While a positive attitude isn’t going to “cure” me of my illness, it’s certainly going to make it easier to overcome the challenges that I encounter on a daily basis. Yes, I do have occasional periods of doom and gloom…but I make a point to pass through them as quickly as possible. The mind is a powerful tool, and I must use it to my advantage.

10. Just when it feels like my world is going to fall apart, the best thing for me to do is to sit down, and take a deep breath. And another one. And another one…until I realize that everything is indeed okay.

http://www.rheumatoidarthritisguy.com/2011/11/10-things-ive-learned-from-living-with-chronic-illness/

Tips For Neuropathic Footware Time To Throw Out The Old And Break In The New!

Today's post from everydayhealth.com (see link below) looks at finding the best solutions for your burning, tingling or numb feet. That requires finding shoes that will provide the best support and the most comfort - no easy task. If you, like me, are still wearing the same sneakers you bought 5 years ago, even though they're falling apart but are so damned comfortable, your conscience will be pricking you that it's really time for a new pair. That's a big step for the neuropathic foot - literally because new shoes can provide all kinds of torture to the healthiest of feet until they're broken in. This article gives some excellent tips - both practical and with the nerve damaged feet in mind. 
 

Shoe Shopping With Diabetes 
By Mary Elizabeth Dallas, HealthDay News
Medically Reviewed by Farrokh Sohrabi, MD
 
If you have diabetes, choosing the right shoes can help protect your feet from injury. Learn which styles could put you at risk for complications.

If you are living with diabetes, shopping for shoes is more than a matter of style. By following some simple guidelines to ensure a good, comfortable fit, you can prevent potentially serious foot problems.

Even minor foot problems, like calluses or blisters, can lead to serious diabetes-related complications. Diabetes can cause poor blood flow to your feet, making it more difficult for wounds to heal, sometimes resulting in infections and possibly amputation. Complicating matters, poorly controlled diabetes can also lead to nerve damage called peripheral neuropathy. This may cause you to lose sensation in your feet, so you may not feel potentially harmful cuts or blisters. To help protect your feet and overall health, it's important to know what to look for in diabetes shoes.

"It's all about prevention," said Katherine Dux, DPM, a podiatrist at Loyola University Medical Center in Maywood, Ill., who treats patients with diabetes. "Any friction in the shoe could lead to irritation and possible blister formation. This could lead to trouble down the road."

Before you shop for diabetes footwear, it's important to have your feet evaluated by a podiatrist to determine your risk for infections or complications, said Dr. Dux. Based on this assessment, the doctor can recommend exactly which types of shoes will be best for your feet.

What to Look For in Diabetes Footwear

Even if your diabetes is under control and your feet are healthy, there are a number of factors you should consider when selecting shoes. By looking for certain characteristics and avoiding others, you can protect against irritation, infections, ulcers, and potentially worse foot problems.

First, look for a shoe that has a large enclosed front, as well as a closed back and top. Shoes that expose your toes or heels increase your risk for injury and infection. You may love slip-on shoes, sandals, clogs, and mules, but they could trip you up when it comes to diabetes foot care.

Other good shoe features for a person with diabetes include:

Adjustable Closure. Look for shoes that have laces or Velcro. The built-in flexibility allows you to tighten or loosen your shoes depending on whether or not your foot is swelling.

Wide Toe. Steer clear of shoes with narrow or pointed toes. "It's best to stay with a shoe that has a wider toe box area as well as something with increased depth to the toe box," advises Christina Sigur, DPM, a podiatrist at Wake Forest Baptist Medical Center in Winston-Salem, N.C. Shoes with a round or wide toe box provide your feet with more room and are less likely to cause irritation.

Low Heel. Flats or shoes with heels less than two inches high are a better option than shoes with higher heels. Lower-heeled shoes reduce the amount of pressure applied to the ball of the foot.

Soft Material. Choose styles made from soft materials, such as leather, mesh or a pliable synthetic fabric. Since feet tend to swell throughout the day, these softer fabrics will give and allow for swelling. Breathable fabrics will also prevent the build up of moisture within the shoe, Dux added.

Cushioned Inner Sole. It’s important to choose footwear with a good amount of cushioning inside the shoe. This added support helps reduce foot pressure and the risk for developing foot ulcers, or sores, and other complications, Dr. Sigur noted.

Hard Outer Sole. Although the inside of your shoe should provide support with cushioning, the outer sole of any shoe you select should be hard. This will help protect your feet from rough or sharp objects and provide shock absorption.

When to Use Therapeutic Diabetes Shoes

For some people with diabetes, a podiatrist may recommend therapeutic shoes. "People with foot deformities, such a hammer toes and bunions, are at greater risk for irritation from ill-fitting shoes," Dux said.

Therapeutic shoes are advisable for anyone with diabetes who also has a history of any one of the following:
An amputation of any part of their foot or toe
Foot ulceration
Calluses that lead to an ulceration
Neuropathy or nerve damage
A foot deformity such hammer toes, bunions, flat feet, or high arches
Poor circulation in their lower extremities

At the Shoe Store

If it’s time for some new kicks, consider shopping later in the day. Since feet tend to swell throughout the day, Dux recommends visiting the shoe store in the afternoon or evening in order to get a more accurate sizing of your foot.

And don’t forget to bring your socks. Experts recommend that people with diabetes wear socks to decrease the friction in shoes and soak up extra moisture to prevent infections. To ensure a proper fit, it's important to always try on shoes with the socks you intend to wear with them.

Finally, ask a trained sales professional to measure both of your feet. One foot is typically larger than the other. You’ll want to determine which one is longer and base your shoe size off of that foot to get the best fit.

Other Ways to Protect Your Feet

Consider Fit, Not Fashion. The type of shoes you wear should have less to do with fashion and have everything to do with proper fit. "Shoes should feel comfortable from the moment you put them on,'" Dux said. "There is no true break-in period for shoes." Dux adds that shoes should never feel tight, rub, or cause irritation.

Inspect Your Feet Daily. It's important to routinely remove your shoes and inspect your feet for problems or signs of irritation, such as redness or marks along the top, sides, or sole. This is particularly true when wearing new shoes. "Any areas of redness or marks that do not resolve in 10 to 15 minutes could be an indication that the shoes need to be addressed or adjusted," Dux noted.

Visit a Podiatrist Regularly. People with diabetes who do not have any foot problems should still be evaluated by a podiatrist annually. Anyone diagnosed with peripheral neuropathy — or those with a history of calluses or foot ulcers — should be reassessed more frequently, according to experts.

Know When to Buy New Shoes. Whether or not to replace a pair of shoes depends on how often you wear them. For everyday shoes, however, Sigur says a good rule of thumb is to change them at least once a year since the interior cushioning of the shoe wears down over time.

http://www.everydayhealth.com/type-2-diabetes/living-with/shoe-shopping-with-diabetes/

Tips For Living With Neuropathy

Today's post from dana-farber.org (see link below) is the transcript of a question and answer session regarding neuropathy as a result of cancer treatment BUT these questions and answers are extremely useful to all neuropathy patients struggling to understand what's happening to them and why. It's a shame that people ignore information about neuropathy that seems to be aimed at other people and conditions than themselves but although the causes may be different, the outcome, results, symptoms and effects are very often the same so sharing information across the board is important. This is a post written specifically for cancer patients but you will find that many of the questions and answers apply to your own situation too. Worth a read.

Tips for Managing Neuropathy
Dana-Farber Cancer Institute, 2015

How can cancer patients cope with the symptoms of neuropathy? Clare Sullivan, MPH, BSN, CRRN, hosted a live chat on chemotherapy-induced peripheral neuropathy (CIPN). Sullivan, who is the clinical program manager for Patient Education at Dana-Farber, answered questions about prevention, safety, and managing side effects. A transcript of the chat follows:

Q: What are the most common symptoms of chemotherapy induced peripheral neuropathy (CIPN)? Are the symptoms the same for every patient?

A: CIPN symptoms vary from patient to patient, but in general, side effects include: feeling of numbness or "pins and needles" in your hands and feet; difficulty picking up an object or buttoning clothing; ringing in your ears or loss of hearing; changes in vision; sudden, stabbing pains in your hands or feet; constipation/difficulty urinating; muscle weakness or cramps; loss of balance or having difficulty walking; and feeling heat and cold, more or less than usual.

Q: Does CIPN affect every cancer patient? Do certain cancer diagnoses increase risk for neuropathy?

A: Neuropathy does not affect every patient and symptoms can differ depending on the chemotherapy type, dosage, frequency, or other pre-existing health issues.

The risk for neuropathy depends not on the diagnosis, but the type of treatment used to treat the cancer.

Q: What are other risk factors for developing CIPN?

A: Specific types of chemotherapy, radiation, and surgery can cause damage to nerves that can lead to neuropathy Patients with pre-existing conditions, such as diabetes or peripheral vascular disease, may already have neuropathy as a result of these diseases. If you already have neuropathy and are starting cancer treatment, speak to your team about your specific symptoms.

Prior to treatment, it is important that all patients talk with their oncologists about any diseases or conditions they may have.

Q: Are there certain chemotherapy drugs that are more likely to cause neuropathy?

A: Yes. The chemotherapy drugs linked to CIPN include:
Carboplatin
Cisplatin
Oxaliplatin
Taxotere (docetaxel)
Jevtana (carbazitaxel)
Velban (vinblastine)
Vincristine
Vinorelbine
Etoposide
Ixempra (ixabepilone)
Thalomid (thalidomide)
Revlimid (lenalidomide)
Velcade (bortezomib)
Pomalyst (promalidomide)
Halaven (eribulin)
Kyprolis (carfilzomib)

Q: Are there medications to treat neuropathy?

A: There is no clear treatment for neuropathy that will improve nerve damage, but a combination of pain medications, vitamins, lotions and exercise can help you manage symptoms.

Q: Does neuropathy happen right away, or soon after chemotherapy treatment? Or, is it possible for patients to get neuropathy years after treatment is finished?

A: Neuropathy can happen at any time during or after your chemotherapy treatment (it is drug specific). While it is rare, it is possible for symptoms to develop several years after treatment.

Q: Is neuropathy genetic?

A: There is a genetic type of neuropathy that is called I-A Type and is linked to auto-immune diseases. The type of neuropathy we are discussing today is related to specific chemotherapy medicines.

Q: Is there anything patients can do to prevent neuropathy?

A: The most important prevention tip is to be attentive to your symptoms and to report any concerns to your doctor right away. Your cancer team will be able to create a treatment plan that will protect you from injury and possibly prevent your symptoms from worsening.

Q: Aside from medications, what are some tips for managing the numbness, tingling or pain patients experience with neuropathy?

A: Physical therapy is one of the most effective treatments for neuropathy — it can help with balance, strength and safety. Occupational therapy can also be beneficial and can help patients improve fine motor skills like buttoning shirts. In both cases, it is very important for patients to advocate for themselves by asking their doctor or care team for a referral to a physical and/or occupational therapist.

In addition to these therapies, low-impact exercise like swimming and biking, as well as acupuncture, relaxation techniques, meditation, and guided imagery exercises can all help with the side effects of neuropathy.

Remember, there are lots more options than just taking a pain pill.

Q: You mention exercise is one way to reduce the numbness and tingling of neuropathy – what type of exercises do you recommend?

A: Low-impact exercises are best; swimming and biking are two examples. For leg and/or foot neuropathy, patients should try calf stretches, ankle circles, gentle walking, leg lifts, and balancing exercises.

For neuropathy in the hands, patients can try finger taps (tap each finger to the thumb, one at a time) or finger rolls (bend fingers, one at a time, into a fist).

More information on exercises to help neuropathy
 
Q: Are there ways to modify my diet to prevent or manage symptoms of neuropathy?

A: There is some evidence that a well-balanced diet can help prevent or reduce symptoms of neuropathy. It is also important to avoid alcohol and smoking, as they can make neuropathy worse.

Q: Do you have any recommendations on how to deal with neuropathy pain?

A: Commonly used medications include Lyrica, Neurontin, Cymbalta, Celebrex, Elavil, and Lipoderm Patch. Remember, it the combinations of medications, vitamins, lotions, and exercise that may be most helpful.

Q: Are there certain vitamins or supplements that could help with neuropathy?

A: There is no clear CIPN treatment that can improve nerve damage, but a combination of vitamins, supplements, pain medicines, adaptive techniques, and complementary therapies may help reduce symptoms. Many vitamins or supplements have little scientific evidence but many patients use them and to find relief. Work with your cancer team to create a treatment plan that works for you.

Caution: There are many devices and supplements advertised for neuropathic pain that are experimental. Before making a purchase, discuss with your cancer team.

B-Complex vitamins, Folic acid, Vitamin E, D, and some Fish oils are the most common, but you should not begin any supplements without first consulting with your cancer team, because many are contraindicated during treatment.

Magnesium potassium and tonic water (with quinine) can also help specifically with cramping.

Q: Are there any topical treatments I can use to manage neuropathy symptoms?

A: You can use cocoa butter or menthol-based creams twice a day, or olbas oil.

Q: In addition to reducing symptoms, safety is also a concern for patients with neuropathy — especially those who have lost feeling in their hands or feet. Do you have any safety tips to prevent accidents?

A: It is very important for patients with CIPN to protect their hands and feet from injury. Some suggestions:

Use gloves to protect your hands when doing yard work or household repairs.
Be extra cautious with sharp objects.
Use well-padded potholders when cooking.
Inspect your fingers and feet regularly for cuts and scrapes.
Check the weather and wear gloves and warm socks in cold weather.
Wear shoes with a rubber sole both inside and outside.
Always use cold water first and gradually move to warmer water — you can also check the water temperature with another part of your body.

Other safety tips to consider:
If you cannot feel the gas pedal or brake, do not drive.
Avoid walking on uneven surfaces.
Keep floors clear of throw rugs, cords and other obstacles.
Consider handrails in stairways or grab bars in bathtub or toilet.
If you need one, use a cane, walker or wheelchair.
Set the water heater in your home between 105-120 degrees.
Keep dark areas well lit and use a night light as needed.

Q: Is CIPN permanent? Is there a cure?

A: Unfortunately, there is no clear cure or treatment that will repair nerve damage. In most cases, CIPN will go away. It will depend on upon the dose, but usually the symptoms will dissipate over time. Sometimes it takes a few months after treatment. In some rare cases, it is permanent.

Q: What other, important discussions should patients have with their doctors if they are experiencing neuropathy?

A: Neuropathy can cause other side effects, such as constipation and sexual health issues, so patients should speak with their doctors about care plans for these specific problems, should they arise.

Q: Has there been any recent, promising research on neuropathy and treating its side effects?

A: There are several clinical trials looking at new treatments for neuropathy. One trial is looking at the combination of Duloxetine and Tetrodotoxin and another is looking at electro-chemical therapies. Both have had some success, but patients with CIPN should make sure to speak with their doctors about any other clinical trials looking at new treatments for neuropathy

Q: What is the difference between chemotherapy induced neuropathy versus diabetic neuropathy? Should both types be managed similarly?

A: Symptoms for many neuropathies can be similar, but important parts of the treatment plan will differ depending on the root cause. Cancer patients who are also diabetic should work with their oncologist and endocrinologist to make sure they are on the right complement of treatments for both diabetes and cancer. It is also important that patients keep both doctors informed of any signs of neuropathy.

Q: Are there support groups or other ways to connect with patients who have neuropathy?

A: Support groups can help you connect with others and you can share ideas and strategies for managing symptoms. There are many support groups throughout the country, and you can find a list through the Neuropathy Support Network. Locally in Massachusetts there is a group at the Orleans Senior Center in Orleans, the Council for Aging in Salem, and the Council for Aging in Weston. Remember, just because these groups are held at senior centers or a council on aging doesn't necessarily mean you have to be older to attend; they can be helpful for all ages.

More information on managing neuropathy:
Alleviating Peripheral Neuropathy Symptoms
Glutamine for Peripheral Neuropathy
Lebed Method: Simple exercises for cancer patients
 
http://www.dana-farber.org/Health-Library/Tips-for-Managing-Neuropathy.aspx?track=neuropathychat