My name is Judith, I am almost fifty-six, married with two adult children. I was a Registered Nurse/Counsellor for many years but retired in my early forties due to chronic pain. I have been in pain for thirty years now. I have been labelled 'Fibromyalgia', I also have Osteoarthritis and chronic back pain and a newer diagnosis of LAPS which stands for Limbically Activated Pain Syndrome. Don't ask me what it is, I still cannot get my head around it but it's basically that my brain is hypersensitive to pain. I am now taking Lyrica to calm it down (Lyrica is a anti-seizure mediation called Gabapentin) which seems to help somewhat.
But - I AM NOT MY DIAGNOSIS!!! I only start with this here because I'm on the pain website, I am so much more interesting that the pain this body is in. I say 'this body' because the 'I' that I am, resides in this body that feels pain but 'I' am not in pain. Does any of this make sense? I think it helps to realize that I feel pain yet I am not the pain, it helps to separate myself from my pain so I can still be me. Other crazy people will get it, I just know it
When I was a nursing student in 1979 my tutor said "Pain is whatever the person says it is"...how often I have thought of her words over the years. We must advocate for ourselves and for each other and not give up!
I had bad tension headaches for two years, after I got my computer twelve years ago. I eventually found out that when I was typing online, I did not realize how incredibly tense I was and all the muscles around my neck went into spasm, hence the headaches! Important you change position regularly and take breaks frequently.
It's important to really go and visit as many GP's as it takes until you find 'the one' because there are some good ones but it can take detective work to find them! The GP's I have now (I have two at the same surgery so I can always get my scripts) have taken a load off me, they know me and I can break down - and frequently do - yet I feel OK because I have their support. They have advocated for me with 'the powers that be' regarding my medication and I also advocate for myself. I took it upon myself to visit all my specialists and get them to give me a written letter about their opinion of me. I gave all these letters to my pain specialist, including ones from my GP's and asked him to use them to validate my pain and it worked!
I have found that one needs to be proactive at all times, never lie down or give up, but fight for yourself and what you know you need. No one understands your body or your pain, like you do. At times it is hard to do this, especially when going through a difficult patch, but in the long run it is worth it. I do for myself whatever I need to do to make my life better and easier if it is within my ability.
I believe we can learn from each other and that we can become stronger, growing in wisdom by expressing our feelings and being caring toward others in need of kind words and concrete knowledge of this thing we call Pain. However I do think we have more power as part of a group rather than as an individual which is why forums like this are great therapy!