Click this link to listen to the broadcast – BBC – Inside Health
Listen from 14:33
Great to see the BBC raising awareness of the rare condition I have. I am totally shocked at the figure stated for those who heal in the first 6 to 12 months, only because that leaves me in the 15 percent that suffer lifelong with this condition. I often wonder if a quicker diagnosis and specialist physiotherapy would have put me in the 85 percent who heal completely in the first year. We will never know.
Also the information about medication is interesting especially as there are no good studies on medication and CRPS. Dr Cathy Stannard talks about clinical trials and that the drugs used to treat CRPS only work in two or three out of ten people and in real life they are working in one in ten or fewer. Dr Andreas Goebel discusses the effectiveness of the drugs used in CRPS saying that medication used for neuropathic pain might have a mild effect and rarely might have a stronger effect but generally it is specialist physiotherapist is needed. This has made my mind up about coming off regular medications. I have been considering it over the last few months, not because my pain has improved, purely because I am unsure if they are actually working. This broadcast has confirmed my thoughts and I will be following this up with my doctor.
I have always thought that it’s not just nerves involved in this condition and that the autoimmune system plays a part. It was good to hear doctor Andreas Goebel discussing this too.
I don’t post for sympathy, or “oh woe is me”, I post to raise awareness and so you can recognise symptoms if it ever happens to you. There are still a lot of medical staff out there who have never heard of this condition and as you can hear from the consultant Andreas Goebel from Liverpool in this broadcast there are still a lot of unknowns about why CRPS is caused and how to effectively treat it.
Please take a listen to find out more and check out the links below for further information.