PsA, pain, me and my mind

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.

Wonderful post hamishhead! I’m so glad you are getting a lot out of the network!

I’m a yogi so I love meditation too!

Great post. I think PsA has some common traits and yet, it attacks each person differently. However, the best thing that you posted is that you have developed a game plan and you have you become an advocate for your illness–great job. I am not there at this point, but slowly getting there. Hopefully, we can learn from each other.

Hi Hamish,

I am from Wales, UK and was diagnosed with PsA in April 2010 my dad had Ankylosing Spondylitis

Having now tried Sulfasalezene and Methotrexate in addition to Prednisalone, ompeprozole and etoricoxib 90mg

- I have just been started by my Rheumatologist on Enbrel 50mg p/w , - I noticed the media coverage with (Phil Michleson)

mixed feelings as I am aware of the risks - but really haven't had any option but to try as I cannot walk with the swelling and sig pain in my feet - (side and underside of feet) Ankles and Knees

This is such a debilitating disease that lets all hope modern treatments will come good and offer a fellow sufferers respite

My dad would always say that he had AS not that the AS arthritis had him - that is something I also live by, it is hard though when the pain, fatigue and general feeling rough hits home

Sorry for the ramble - I have also started to feel numbness in my legs and arms sometimes - i too hope this isn't a sign of nerve involvement?

- I have experienced numbness in the eve and in the morning - only just joined this forum and hope we can all be here as a support and knowledge base for each other

I am not there wrt accepting this condition and know that I have a long way to go - it seems so unfair / wrong etc.... to have this condition as i am sure we have all felt at times

I was a very active rugby player and have had to stop all sport at the moment as my flare ups are really severe

:-( I read your post with interest and hope to help stay positive and use meditation and such techniques also



It seems to me the risks from Enbrel are much, much less than the drugs you have been on. I saw the affects of prednisalone on my brother before he died after taking it for years and I have refused it except for very short periods when I was at my worst .Here in Aus they make you take the other drugs before you can be prescribed Enbrel. Methetrexate had severe side affects on my liver and I wasn't on that for long. I've been on Enbrel for a fairly long period now, nearly 12 months, without any side affects.While I still get chronic pain, the flareups have been greatly reduced and are quickly squashed by enbrel. I feel much better generally. After feeling better for about 6 months I started to think it wasn't working as well any more because of the pain but now realise that it is working fine still. I still feel much better generally and the pain levels are the same but the swelling has gone; I had just hoped that Enbrel would also make the pain reduce or go away. I strongly believe that sufferers of PsA, and probably other chronic diseases, need to work on the mind game as much as the body to survive.

Good luck with your battle with it.

Hi all :slight_smile:
I self-talk a lot and focus time on appreciating what I have in my life that is positive. I do this to keep myself from getting too down about the pain and the fact I have recently had to take early retirement. I am also going to start water therapy with light exercise and engage in some meditation. Keeping your mind in healthy shape is imperative, given the nature of this damning disease.