“Tender points fibromyalgia svg” by Sav vas – Own work

Fibromyalgia (FM) is a medical condition characterised by chronic widespread pain and a heightened and painful response to pressure. Symptoms other than pain may occur, leading to the use of the term fibromyalgia syndrome (FMS). Other symptoms include fatigue, sleep disturbance and joint stiffness. Some people also report difficulty with swallowing, bowel and bladder abnormalities, numbness and tingling and cognitive problems, Fibromyalgia is frequently associated with psychiatric conditions such as depression and anxiety. Not all people with fibromyalgia experience all associated symptoms.

This page from this Molly’s fund website (our friends in Portland, Oregon) gives lots of helpful information about Fibromyalgia and information about its links to Lupus.

After a short formal meeting at the Jubilee library, we had a great coffee and chat this month at The Courtyard Restaurant, Brighton. Seven of us came along to catch up with each others news. It was a very relaxing and enjoyable morning. Amongst many other things we discussed having the flu virus vaccine.

Melanie Rees held a Bottle Top Marathon on Thursday 20th August at the Green Centre, which took place from 7am until 7pm when she and the Green Centre volunteer team sorted bottle tops for an incredible 12 hours!  They sorted 72bags- that’s an amazing 395.5kgs of bottle tops!!! The funds raised from recycling the bottle tops will be donated to Lupus Brighton and Hove and LupusUK. Thank you to LBH members Terri and Serena for going along to support the Bottle Top Marathon and to Melanie and the Green centre volunteers for all their hard work. The Crowdfunding sponsorship page for the event is now closed, but you can still support Melanie and her wonderful team by donating on the Green Centre’s website 

If you’ve been put on steroids in the form of Prednisolone tablets, you should have been given one of these blue steroid cards to carry. This is because if you’ve been on steroids for 3 weeks or more it’s dangerous to suddenly stop taking them. These blue steroid treatment warning cards can be got from your prescriber or your dispensing chemist.

The adrenal glands which produce your body’s own steroids shuts down when taking a dose of 5mg or more of Prednisolone and they need time to gradually start working again. This means that when stopping a course of steroids after taking them for a long time, you will reduce the dose slowly over a period of months.

If you are currently taking corticosteroids, or have taken them in the last year, it’s also important to tell everyone involved in prescribing you medicines and giving you medical treatment. This includes your doctor, dentist, nurse and pharmacist. You must make sure that they all know about your corticosteroid treatment.

It’s also important (when on taking steroids) to keep away from people who have chicken pox or shingles, if you have never had these illnesses, they could make you very ill. If you do come into contact with someone who has them tell your doctor or nurse straight away.