The Value of Openness by PatientsLikeMe ®

Do you have circulation issues like swelling (also called edema) or a burning (or cold) sensation in your legs and feet? How do you cope? From compression stockings to therapeutic massage and limiting salt intake, pALS are managing their circulation issues in some creative ways.

Why do some people with ALS experience poor circulation?

For many people living with ALS walking becomes difficult as their condition progresses. Lack of physical activity can make it difficult for the blood to reach the legs, feet, arms and hands, leading to poor circulation and swelling (some PatientsLikeMe members report swelling in their feet and hands). Swelling is also caused by dehydration, inflammation or consuming too much salt.

Some symptoms include:

• Swelling or puffiness in legs, arms, hands or feet
• Stretched and/or shiny skin
• Skin that stays depressed after being pressed

How pALS manage:

If you’re experiencing any of the symptoms above, talk to your doctor. He or she may prescribe a diuretic (or water pills, to help rid your body of excess salt and water) but diuretics should be used with caution since many pALS are already dehydrated. Here are a few things some pALS are trying:

• Lymphatic massage (also called manual lymphatic drainage massage), a gentle type of massage that can help the body’s lymphatic system work better, can temporarily reduce swelling
• Reducing salt intake. Things you can do to help: buy low or reduced sodium packaged foods, replace salt with other herbs and spices and eat more fresh fruits and vegetables.
• Warm socks/gloves or microwaveable booties for cold hands and feet

• Electric blankets or hand warmers like the ones used for hunting
• Ted Hose or compression socks (if you’re still walking) to prevent blood clots
• Leg massage devices like this one or this one to get the blood flowing
• Kathy Peters, Muscular Dystrophy Associations’s ALS Health Care Services Coordinator, warns that an ordinary reclining armchair can actually lead to more swelling. Instead, she recommends raising your feet (with a tilt-in-space wheelchair and hospital bed) so they’re on the same level or higher than your heart.
• For more tips, check out this blog post about managing swollen feet.

How do you manage circulation issues? Any questions, thoughts or tips you’d like to share with the community? Join PatientsLikeMe and add your voice to the conversation.

Share this post on Twitter and help spread the word.

Trending: Cannabidiol (CBD) oil, gummies, tinctures and more. Why are cannabis products gaining popularity as medical treatments and in general? As more states have legalized medical marijuana, more people have shifted their views on cannabis treatments (like former Speaker of the House John Boehner’s recent change of heart). And last month, an advisory panel at the U.S. Food and Drug Administration (FDA) unanimously recommended a medication made from CBD for some forms of epilepsy.

CBD comes from cannabis/marijuana but has some key differences. So, let’s take a closer look at CBD products and some FAQs, like, do they work and are they legal?

What is CBD?

Short answer: Cannabidiol (pronounced canna-bid-EYE-ol) or CBD is a chemical found in cannabis plants that does not produce a “high.”

More info: Cannabis plants can produce more than 100 different types of cannabinoids, a type of chemical that reacts with receptors in the brain. The two most common cannabinoids found in medical marijuana are THC (delta-9-tetrahydrocannabinol) and CBD (cannabidiol). THC is responsible for producing the mental and physical effects of medical marijuana. CBD has many of the same therapeutic qualities as THC, but without psychoactive effects. (For even more info, read our report called “Weed 101: How and why patients use medical marijuana.”)

Products made purely from CBD (without THC) do not produce the psychoactive high of other medical marijuana or some CBD/THC combination products. But, as a JAMA report and some in the medical cannabis industry have pointed out, many CBD products sold online are not accurately labeled (containing much more or less CBD than the label claims, or even containing some THC when it’s not mentioned on the label).

CBD is not regulated or approved by the FDA — but they have issued warning letters to some CBD producers with misleading labels.

Many doctors (in the U.S. and internationally) are hesitant to recommend smoking cannabis or inhaling any burned plant material but may be more open to CBD products that are not smoked. (Has your doctor or provider weighed in about medical cannabis or CBD products? Make a comment below.BD products can be pretty expensive so search around for things like discounted CBD vape juice. You’ll find some great deals! I often buy my wholesale vape supplies online or in a store near me.

Are CBD products effective?

On PatientsLikeMe, members have reported trying CBD for about 160 different reasons, including specific conditions (ALS, Parkinson’s disease, epilepsy and fibromyalgia — to name a few) and symptoms (from anxious or depressed mood to stiffness/spasticity). Below is a list of CBD or cannabis products members have reported as treatments on the site — remember to discuss your treatments with your healthcare provider, and keep in mind that treatment responses vary:

• Cannabidiol in general (click to learn more and see treatment evaluations)
• MediPen (cannabidiol vaporizer)
• Cannabis oil
• Plus CBD Oil (this is a brand name that sells CBD sprays, capsules, concentrates, vape oil, balms, drops, and soft-gels)
• Cannabis tincture
• Cannabis salve
• Relax CBD infused gummy bears
• Cannabutter

Join PatientsLikeMe to see more details through the links above and to connect with other members about their treatment experiences.

Note: CBD industry insiders advise avoiding splashy websites that offer a “free trial” of the product — by filling out a form, you may be signing up for an unwanted subscription.

Is CBD legal?

Short answer: CBD is legal under some state laws but not under federal law — so it’s pretty confusing (even to healthcare providers).

More info: As of May 2018, there are 17 states with laws specifically about legal CBD. Most state laws allowing some CBD use tend to be very specific (for example, limiting a CBD product’s THC content) and are not the same as state medical marijuana laws.

Under federal law, cannabis products (including CBD) are illegal and classified the same as marijuana (and heroin and ecstasy) as a Schedule I controlled substance. The U.S. Drug Enforcement Agency (DEA) made headlines in Indiana (where some CBD is legal) a few months back when DEA spokesman Rusty Payne told the local news that CBD is illegal under federal law, but is not the DEA’s main focus. “We are in the middle of an opioid crisis in this country,” Payne said. “That’s our biggest priority right now. People are not dying from CBD. Some would argue lives are being saved by CBD. Are we going to get in the middle of that? Probably not.”

Last year, U.S. Rep. Morgan Griffith introduced a bill called the “Compassionate Access Act” to encourage the federal government to remove marijuana from “Schedule I” classification, exclude CBD from the definition of marijuana in order to allow better medical access, and regulate CBD products to ensure they’re low in THC. So far, the bill has only bounced around to various congressional subcommittees.

Have any questions, comments or feedback on CBD products? Make a comment below or — even better — become a PatientsLikeMe member to discuss this topic in the forum and see more treatment evaluations from people living with your condition.

Share this post on Twitter and help spread the word.