Colchester Fibromyalgia support group founder speaks out

Lisa, a mum-of-three, has fibromyalgia, a long-term condition which can cause a person to have more than 200 different symptoms, including pain all over their body.

Other common symptoms are sleep problems, fatigue, memory problems and often emotional and mental distress.

The impact of the condition has been dramatic.

Lisa went from being a psychotherapist to having to close her business due to medical retirement caused by the condition.

She said: “Our daily lives at home have been affected in every way imaginable, my physical strength and ability is much less and I need support wherever I go both mentally and physically.

“My children were young carers and have had to learn that the mum who was always able and dependable was much less so now.

“My husband is now married to a disabled woman who can no longer work or support herself. When we were first together I was someone who could do it all.”

Loving support - Lisa with husband and carer James

She said she has “relentless pain” which leaves her exhausted and frail, her words are often slurred and she is hypersensitive to sound, light and temperature.

Although, there is no definite cause, symptoms usually show after physical trauma, surgery or a significant psychological event.

Lisa cannot be sure of what caused her fibromyalgia, however after having multiple surgeries and going through childbirth she said that her body “never really quite recovered”.

But Lisa also wants to help others affected by the condition and with her husband, James, has set up a support group which is now celebrating its first anniversary.

Lisa Taylor, 41, from Manningtree, has suffered with fibromyalgia for over ten years.

She originally started a support group in 2015 but had to close it in 2019 because, at the time, the family became homeless from Lisa being unable to work and her husband being her carer.

All set up - the group at christmas

After getting housed and settled, in April 2021 she re-launched the group because of the huge lack of support and information for people with the condition.

The Facebook group, Fibromyalgia Support Group Colchester, now has nearly 200 members and holds monthly meetings at the Greenstead Community Centre in Colchester.

It has marked its first anniversary ahead of International Fibromyalgia Awareness Day tomorrow.

The group is part of the Fibromyalgia Action UK charity, who helps them with information, research, support and advice.

Ms Taylor said: “Particularly during such difficult and lonely times during the pandemic, the friendship element has been a big part of the joy in running this group for myself and many others.

“Having people in our lives who understand this complex, painful condition where there is often no support, limited medical consistent care and sadly no cure can be the difference to coping.

“Depression is often a part of fibromyalgia and I have had many years not feeling able to carry on.”

With help from a small team of the group members she said: “We give something back to the community whose fibro warriors continue to support me as much as we support them.

“I have made the most wonderful friends and am amazed at their strength and resilience with such a life changing, debilitating condition.

“Many who suffer take their own lives because it can feel unbearable but it can be a good life with good people you just have to adapt and not go through it alone.

“It is why I try so hard to keep the group running because these wonderful people have kept me going and still do so it’s vital to be there for them also.”