A 25-year-old woman of African descent with NF1 presented to our clinic complaining of chronic pain, depression, and anxiety. She was diagnosed with NF1 at puberty but had reported symptoms since childhood. She was unaware of a family history of similar conditions. She has Lisch nodules on her iris bilaterally and 10 café-au-lait patches across her body. The patient also has numerous subcutaneous neurofibromas on her face (plainly visible and causing some facial disfigurement) and in several regions of her body. These caused her chronic, intermittent, sharp pain of varying intensity but averaging 6/10 on the 10-point pain scale. She has tried many OTC pain medications with limited benefits. She has had over 20 surgical resections and multiple laser treatments for the neurofibromas with limited success as they often recurred after treatment. She reports pain from both the treatment and the tumors themselves. The neurofibroma tumors have also caused her cosmetic issues. She reports being withdrawn, stressed, and anxious, especially in social situations when she feels that people are staring at her. She reports low energy and had lost interest in most activities. Furthermore, she reports that her condition has interfered with finding employment and leading a normal life. She states that her mood is low, and she has frequent crying episodes. Her general practitioner (GP) has prescribed multiple antidepressants that were not tolerated due to the side effects. Consistent with NF1 common symptoms, she reports having migraine headaches. She averages around 15 episodes per month varying in intensity between 5/10 and 10/10. She has reportedly used OTC pain medications for the migraines unsuccessfully.
Neurofibromatosis type 1 (NF1) is a common genetic disorder. Pain is a major symptom of this disease which can be secondary to the development of plexiform and subcutaneous neurofibromas, musculoskeletal symptoms (such as scoliosis and pseudoarthrosis), and headaches. Visible neurofibromas add significant psychosocial distress for NF1 patients. Along with the chronic pain, psychosocial distress contributes to associated mood disorders, such as depression and anxiety. Cannabis has been the focus of many studies for treating multiple conditions, including epilepsy, multiple sclerosis, Parkinsonism disease, and many chronic pain conditions. Cannabidiol (CBD) is the major non-psychotropic component of cannabis. CBD has shown anti-inflammatory and analgesic properties, as well as having mood stabilizer and anxiolytic effects. In this report, we present the use of cannabidiol (CBD) for the management of chronic pain and concomitant mood disorder in an NF1 patient.
CBD has been showing positive results in alleviating chronic pain. A large meta-analysis by Whiting et al. and other studies showed that cannabinoids are effective with neuropathic pain, fibromyalgia, cancer, and diabetic neuropathy, refractory pain due to multiple sclerosis and other neurological conditions, including rheumatoid arthritis, noncancer pain, central pain, musculoskeletal problems, and chemotherapy-induced pain [15-16]. Its efficacy with migraines and mood disorders has been consistently noted in the literature as well [17-19]. A recent preclinical study demonstrated effective neuropathic pain and comorbid anxiety and depression reduction through its interaction with the serotonin 5-HT1A receptor . It is speculated that this might be the physiological model responsible for the noted improvement in the case study. Similarly, a study on the mechanism of pain in NF1 patients proposes that modulation of ion channels, specifically sodium channels, might be one of the pain pathways in these patients . Giving the effect of CBD on these channels, it is postulated that the CBD might be modulating pain via this mechanism, as described above.
At the three-month follow-up visit, the patient reported starting with 4 mg (0.2 ml) BID of cannabis oil with CBD to THC ratio concentrations of 20 mg/ml to 1 mg/ml (CBD: THC 20:1). This was gradually increased by the patient (self-titration) to 8 mg (0.4 ml) BID. During this period, the patient reported that her pain was significantly reduced (from an average of 6/10 down to 1/10). She reported being less emotional and feeling calmer. She said that her anxiety dropped from 9/10 down to 3 to 4/10 and that her mood had stabilized. Also, as an added benefit, she reported that her migraines had improved. She reported fewer episodes per month (five per month down from 15 per month before starting the CBD oil) and that she was able to decrease her dependence on OTC anti-inflammatory pills for pain relief. Overall, a significant improvement in her quality of life was evident by the change in her demeanor and a novel enthusiasm for seeking employment.
The risks and benefits of using cannabis for her condition were discussed in detail. She was advised to start a three month trial of sublingual CBD oil at 4 mg (0.2 ml) twice per day (BID) and titrate upwards to 10 mg (0.5 ml) BID with a maximum increase up to 20 mg (1 ml) BID if no response. She was advised to try and hold it in contact with the buccal membrane for at least 90 seconds . The recommended formulation had low amounts of tetrahydrocannabinol (THC) at less than 1 mg per 1 ml of oil. The low levels of THC reportedly assist CBD in reaching the receptors, having a synergistic benefit .
As a bona fide alternative treatment option, medical marijuana has been proven as a remedy for patients who seek pain relief time, anti-inflammatory effects and the treatment of Neurofibromatosis. It is already known that marijuana can stimulate the appetite of patients. But researchers have learned that cannabinoids, in addition to having palliative benefits in cancer therapy, have been associated with anti-carcinogenic effects, which are responsible for preventing or delaying the development of cancer or tumor spread. Additionally, medical marijuana has been responsible for slowing tumor growth rates and shrinking them in size.
There’s currently no known cure for neurofibromatosis. Therefore, treatments are focused on controlling your symptoms. No standard treatment exists for the condition because NF symptoms vary so widely from individual to individual. Some symptoms, such as freckling and cafe au lait posts, don’t require treatment. When treatment is necessary, your options could include:
How/Why Marijuana is an Effective Treatment for Neurofibromatosis
There are many strains of pot on the market nowadays. Each strain has its own therapeutic profile and varying levels of CBD to THC. Because of this, the best strain for you will depend on your NF symptoms.
It’s natural to feel numb and shocked when you’ve been given a life-changing diagnosis. Some people experience anger and denial, and you might, too. You may isolate yourself from others and have no interest in activities that you once enjoyed. You may be worried about whether or not to have children as the condition is often inherited. Given all these factors, NF can cause an emotional burden to you and your partner or family.
Your doctor diagnoses NF1 first by conducting a physical examination. Your physician checks your skin for cafe au lait spots (hyperpigmentation lesions) using a lamp. In addition to a physical examination, having a family history of the condition is a major component of an NF2 diagnosis. Your physician might recommend genetic tests, imaging tests (CT scan, MRI and/or X-rays) and an eye and ear exam as part of the official diagnosis.
These are some of the symptoms of neurofibromatosis that CBD can help speed up:
In addition, CBD has been responsible for slowing tumor growth rates and reducing their size.
– Pain, mood and sleep. Many people use CBD to treat chronic pain and inflammation. It can also help you rest well at night. Depending on the dose, it is even useful to elevate the mood.
Some people experience anger and denial, and you can too. You can isolate yourself from others and have no interest in the activities you once enjoyed. You may worry if you have children or not, since the condition is often inherited. Given all these factors, NF can cause an emotional burden for you and your partner or family.
Living with neurofibromatosis is a challenge. A study published in Genetics in Medicine discovered higher stress levels, more symptoms of depression and lower levels of self-esteem in a group of 248 people with this condition.
Neurofibromatosis, also known as NF, affects almost every organ system in the body. It´s a series of complex genetic disorders in which tumors grow in the brain, spinal cord and nerves throughout the body. Half of the people diagnosed with neurofibromatosis have inherited the condition. However, it is also possible that spontaneous cases occur through mutations in the genes.
Each person reacts differently to the diagnosis of NF. When you have neurofibromatosis, you are likely to experience strong emotions. You may be afraid of what the future holds. Also, you can worry about possible changes in physical appearance and how others might react. You will also fight with feelings of isolation and perhaps fear. It is natural to feel numb and shocked when you have given a life-changing diagnosis.