Any of you that have been following me for a while will know that I have ME and Fibromyalgia, which in lay mans terms means I am permanently exhausted and have constant chronic pain (with lots of other symptoms but the list is too long to mention!).
I was diagnosed in 2009 and after being initially referred for a 12 week management program in London at the start my Borough decided they would not pay for me to go out of borough for treatment even though there was nothing similar in my area. So, after being diagnosed I was then left with no input apart from pain relief from my GP. I spent years on Tramadol until my body totally adjusted and they were having absolutely no effect. Last year when the pain became to difficult to handle my GP switched me to Morphine (slow release) and Oramorph for breakthrough pain during the day. Again as my body adjusted they had less and less effect and the dosages where increased to a point where my GP could not authorise another increase without referring my to a Rheumatologist.
This was probably the best thing that could have happened. I had an appointment in February and she confirmed 18 tender points of Fibro around my body alongside all over body tenderness ( that means my body feels bruised so wearing clothing/ shoes etc all hurts as though someone is pressing directly on a bruised piece of skin!). From there she referred me to the Fibromyalgia clinic and I had that very long appointment yesterday. It takes all afternoon as you see three separate specialists in different areas who all work together to approach the illness from different angles.
I came out feeling amazingly positive after speaking to three separate specialists who not only believed I was in pain but understood how it affects my daily life and had input in how they could, together as a team, help me manage my pain better and help me restore some normality back to my life.
THIS IS HUGE!! For years I have been left to cope with only inadequate pain relief ( turns out opiates are useless in treating the pain I have-typical!) with people finding it hard to actually believe I am in CONSTANT pain. I know I am my own worst enemy as I do not allow anyone to see how it affects me. If I go out no-one would even think for a moment that my body is screaming out in pain, I will smile and chat and completely mask it ( hence some people think it’s not possible to be in pain ALL of the time). My only visible show that something is wrong is that I use a walking stick, not because I bloody enjoy people
looking staring at me but because the pain in my ankles is sharp and knife like and can literally knock you off balance when out walking around.
This denial, or masking my issues seems to be part of the problem. If people think I am OK I will carry on as normal doing things I know will knock me off my feet the next day just so no- one sees I cannot cope! Apparently I need to learn to say ‘No’ and totally understand how to pace activity. This is new to me too as I totally live my life the ‘boom and bust’ way, that means on days where I am more able I will do WAY too much just to catch up etc which then pays me back with several days not able to do anything at all.
So, after an extremely long hospital visit to the clinic yesterday they offered to put me on a 7 week pain management course which looks at all these issues alongside getting a combination of medications that actually work with a routine of pacing.
This is the most help I have had in all the years I have been diagnosed. I feel positive with everything they were telling me and I now have to just wait to hear when the course will be starting. Although it is 7 weeks long it is only 1 day a week at reasonable times with lots of breaks etc. I will meet other people in the same position who actually live in my area too which could end up being a bonus socially.
I have been on support groups online throughout having the illness but I tend to find they become quite depressive with people venting every little aspect, pain, new symptom and bad day they are having. I too have those days where it can bring you right down in mood, but that is not how I want to live my life- it is restricted enough without wallowing in what’s wrong instead of concentrating on what is going well. So, although I remain on these groups I tend only to comment on positive posts because I do feel that sometimes when I am feeling OK they can have a draining affect on your mood as you start to think ‘Oh God is that how I am going to become’. I am not running these groups down they do provide people with daily contact and reassurance and generally are a good thing, however, it can become a bit of a pity party some days and that’s not how I want to look at my illness. I know some people will say they have been on the course I have been offered and it did nothing for them and that’s fine, but because a lot of how you manage pain can be down to mindset as well I do not want to go in with any negative attitude- otherwise what is the point?
So, I will keep you updated when I do start and let you all know what happens. But for now I am very happy I am getting any help at all and we have to be prepared to help ourselves as well as the illness is complex and cannot just be fixed with a particular medication or procedure. So send loads of positive thoughts please, I am feeling that my outlook is going to be rosy.