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  1.4 Common questions.

Site presented by Bill Tillier


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The following questions appear over and over and therefore it may be helpful to address them here. These answers are based on the most recent research available.

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⧈ 1.4.1 Stem cell therapy.

⧈ 1.4.2 There must be a medication!

⧈ 1.4.3 Falls.

⧈ 1.4.4 Psychological acceptance.

⧈ 1.4.5 Pain.

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⧈ 1.4.1 Stem cell therapy.

⚀ Stem cell therapy: Patients often ask about stem cell therapy. The use of stem cell therapy holds great promise but, at this stage, has not yet been developed to the point where it can reliably help patients. Some patients resort to going to countries where the government does not regulate stem cell therapy. It should be noted that this approach exposes patients to unknown risks.

⚀ Today, in 2022, there is no stem cell treatment available that will help IBM. Work is being done to develop muscle stem cells and there is a possibility in the future that this will be successful. It is not clear if muscles damaged by IBM will be able to integrate new muscle stem cells and produce new muscle tissue that will be functional. There are two websites that are pertinent:
For general information see: Website.
Information on developing an IBM stem cell approach: Website.

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□ 1.4.2 There must be a medication!

Many patients try various medications, usually some sort of steroids. Many patients report being on prednisone and suffering side effects and not being able to get off the drug. Some patients report benefits from these drugs. Research has shown that these medications generally do not help in IBM. Today, in 2022, no medication is recommended for IBM patients. In some patients who have severe problems swallowing, medications or other procedures may be used to see if any improvement can be gained.

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⧈ 1.4.3 Falls.

One of IBM's early and consistent issues is unexpected falling. Muscle weakness in the legs causes instability in the knee. IBM patients experience two major types of falls: first, the knee may suddenly collapse, causing the person to fall straight down. These falls are sudden and unexpected, and you do not have time to grab onto anything. The second type of fall occurs when the person loses balance, the muscles in the legs cannot compensate, and the person slowly falls over. Fall prevention is essential as falls often lead to broken bones and head injuries. It may be helpful to use a knee brace or a cane, or a walker. Many patients put off using such assistance until they have had many falls. As well two other factors come into play in falls. The first is to create an exercise program under the guidance of a therapist to see if leg muscles can be strengthened. Second, people with IBM tend to move less, and therefore, it is critical to manage your weight to ease pressure on muscles—excess weight makes falls more likely.

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⧈ 1.4.4 Psychological acceptance.

IBM is a chronic and progressive illness that eventually may severely impair one’s normal activities. It is often difficult for people to understand that they have this disease. It is normal for people to be in denial initially and have anxiety about what the future will bring. Giving up normal life activities involves a difficult, ongoing adjustment calling for flexibility and adaptation. Some patients have reported experiencing this loss as a feeling of grief similar to that experienced when you lose a loved one. Again, losing functions and adapting is a slow and ongoing process that you must deal with over time. Generally, it is beneficial to communicate with other IBM patients who can give advice and context to the new patient. As well is often helpful to have some counseling to better come to grips with the diagnosis of IBM.

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⧈ 1.4.5 Pain.

⚀ 1.4.5.1 Overview.

□ Chronic pain is defined as either recurrent or constant, lasting more than three months and often resulting in disability, suffering, or physical disturbance (Urits et al., 2020).

⚀ 1.4.5.2 Using Cannabidiol (CBD) to Treat Pain.

□ Urits et al. (2020) stated: CBD products extracted from hemp contain less than 0.3% THC and can come in many forms, including oils, sprays, and food, among many other options. Since these CBD products do not contain greater than 0.3% THC, they do not require a prescription like typical medical marijuana, and their products are not regulated. They sometimes do not contain the same ingredients as marketed. (p. 7)
The authors continue:
While these products have shown some promising results as a treatment for chronic pain, the efficacy of CBD must be questioned since the product contains THC as well as CBD. Furthermore, the safety profile of current CBD products, specifically non-pharmaceuticals, should be questioned due to their false advertising and variable quantities of CBD in the product. Therefore, careful selection of a CBD product should be made by physicians and patients to ensure patients are taking a high-quality product. Despite these concerns, CBD is a promising area for treating chronic pain, and further studies need to be performed to evaluate the role of CBD in chronic pain management. (p. 26)
The research basis for using Cannabidiol (CBD) to treat pain is minimal and weak (White, 2019). Many patients use non–FDA-approved forms of CBD, exposing them to the highly variable quality and content control; CBD is often present with THC dosages, adulteration, and contamination (White, 2019). Boyaji et al. (2020) emphasize that CBD is difficult to research because it is often given with THC. “It is difficult to recommend the use of CBD in chronic management. It is also important to note that many companies sell CBD products as supplements, but they are non-pharmaceuticals and lack efficacy studies to support their claims” (Boyaji et al., 2020, p. 3). Schilling et al. (2020) completed a survey of patients using CBD-related products for pain management. They found that most reported positive outcomes but wanted more information about CBD and to get their CBD from their physicians.
References.

□ Take away: Using CBD for pain is not FDA approved, and there needs to be more research done to validate its use. There are major challenges in purchasing a chemically pure and accurately dosed CBD. Researchers state that it is a promising approach and patients suggest it works.

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