PsA, pain, me and my mind.
I have benefited enormously from joining this site and reading everyone’s stories. I’m 65 and I have probably had the disease since I was about 35 when strange, unexplained injuries and pain stopped me playing football, tennis and other physical activities. Over the years, until I was about 55 and was diagnosed with PsA, the pain increased, I felt constantly ill and tired and I had both knees replaced, an Achilles tendon repaired and regularly had deformed toe nails fall off. The enormous amount of inflammation and pain eventually affected my heart and I experienced atrial fibrillation. This was despite having taken various drugs including methotrexate and lefluminide. Enbrel has been a wonder drug for me but I still suffer constant severe pain from my damaged right shoulder, left hand, five severely damaged vertebrae in my lower spine and enthesitis in my legs from knee to toes but my heart rarely fibrillates now.
After feeling so much better after taking Enbrel, some 6 months later, I became depressed from the ongoing severe pain and fatigue caused by fighting that pain.
I do not want to go onto additional drugs and face the possibility of side effects and the pain still being there. Many of the support group’s member’s stories seem to me to indicate this pattern.
After watching a program about a man who had ongoing pain from a phantom limb after amputation and how his mind could be manipulated to overcome this I have investigated more stories of this type and I now feel that my inability to deal with my pain comes from that pain hijacking the link between brain/mind and the body. It goes from being a two way link to a one way link with the pain/body controlling the brain/mind.
I am not saying the pain and illness is in the mind, obviously this is not so. However I do think too little time is used to consider the correlation between mind and pain control. It certainly has not been mentioned to me by any doctors yet the effect of placebos on pain control on injured soldiers when morphine was unavailable is well documented.
I am now convinced that, for me, the following approach is helping me to a better quality of life.
1. I accept I have a weird disease and that am disabled by it.
2. I accept that there is currently no drug solution that will either cure me or take away the pain for good although the careful use of drugs like Enbrel help by slowing the disease and reducing the pain.
3. I accept that to live with others I have to make myself number one priority a lot of the time even though it seems selfish.
4. I have developed a pattern of actions to deal with the pain and flareups.
My action plan is:
Use my drugs wisely. I take Enbrel regularly and the maximum daily dose of osteo paracetamol. I take Celebrex (nasiad) when pain and inflammation increases and until it reduces. When I become overwhelmingly fatigued from pain and lack of sleep I take a morphine based drug, Endone, before going to bed (about once a month) and the deep, peaceful sleep has a wonderful effect on mind and body. The occasional use of this drug doesn’t allow the body to become used to it or me depend on it and maintains its efficacy.
I have a low impact exercise program worked out for me by a sports physiologist and physiotherapist. This is done in a gym, exercises and stretches at home and using a swimming pool. I can’t use my right arm to swim so I have flippers, float on my back with arms by my side and paddle up and down the lane. The combination of exercise, weightlessness and warmth is great. (Being retired from work and a grownup family obviously gives me the advantage of time)
And finally I do a form of meditation where I lie on my bed and use my mind to search my body for the pain areas, to isolate them ( I imagine locking them up in a tin!) and then I think about the things I can do and will do. I also do this when I wake up in the morning and the first thing I become aware of is PAIN. I plan my day in my mind to do things I want to do.
I would love to know if anyone else has followed this path.
