Carly Barton has been suffering from the chronic pain condition since suffering a stroke in her early twenties.
The former university lecturer began using cannabis illegally around two years ago.
The 32-year-old opted for cannabis after the strong opioid drugs, including morphine and fentanyl, she was prescribed left her feeling "zombied" while still in pain.
Last month, she was prescribed medicinal cannabis by Greater Manchester-based private pain specialist Dr David McDowell in what they believe is a UK first.
The three-month prescription will cost her around £2,500.
Doctors have been able to prescribe cannabis products to patients in the UK since November 1 after the drug was rescheduled.
But Ms Barton, who lives in Brighton, says interim guidelines, which make it difficult for NHS doctors to prescribe the drug, are "prohibition under a different name".
"The guidelines they have produced aren't working. In the month that they have been produced, no doctor has felt guided to write a prescription," she said.
"Those guidelines need setting on fire as far as I'm concerned, and the NHS specialists need to be made to feel comfortable about making a clinical decision."
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