A new support group is being set up to help people with “invisible” illnesses such as lupus, rheumatoid arthritis and fibromyalgia.
Hayley Mason, who runs the Ely Cambridgeshire Fibromyalgia Support Group, is currently seeking funding for the “overarching support system”, while running her existing group.
The new group will be called Cambridgeshire Invisible Illness Support (CIIS) and will encompass all people with invisible illnesses.
Fourteen people, including three family members of people suffering from fibromyalgia and “two ladies with invisible illnesses” met up at Cafe Skylark in Soham recently to discuss new developments.
Also called fibromyalgia syndrome, fibromyalgia is a long-term condition that causes pain throughout the body.
Hayley said: “We discussed that nearly everyone’s fibro has been trigged by a trauma, accident, stress, high adrenaline situation… We discussed that a few of us are hyper-sensitive to medication and have actually stopped taking pain medication due to the side effects.”
The group also talked about helpful cushions and “the feeling of not wanting to get out of bed in the morning”.
One of the barriers some members experienced was the “high cost” of acupuncture, Hayley said. The group is hoping that local acupuncturists may offer a discounted rate to members in exchange for promotion opportunities.
Other topics mentioned during the meeting included the possible benefits of using herbal supplements, aloe vera gel and herbal vitamins. The “benefit and enjoyment of gardening” was also raised.
Future meet ups have been arranged at Cafe Skylark in Soham from 6pm to 9pm on June 16 and The Copper Cup in Littleport at 1pm on June 27.
The fibromyalgia group will be represented at Ely Aquafest on July 3, The Chicken Shed in Fordham on July 8 and Soham Pumpkin Fair in September.
For more information see https://www.facebook.com/elycambridgeshirefibromyalgia/
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