Mon, 1. May 2017
Living With Chronic Pain
Twenty years ago my Wife Joan fractured her left elbow in a fall which also jarred both arms & shoulders, neck, back, hips and knees. As a direct result of these injuries, she went on to develop Complex Regional Pain Syndrome (C.R.P.S.), also known as Reflex Sympathetic Dystrophy (R.S.D).
Whilst the initial injuries themselves eventually healed, the onset of nerve pain and muscular symptoms crept up on her – spreading throughout her body - and she was forced to give up her profession due to the pain and other side effects of CRPS. Later I also retired early because she was not coping.
She was in excruciating pain, particularly in her upper body. As the diagnosis became more apparent, the pain medication prescribed to her improved but was never adequate. She has good medical care but it was to be several years before a pain specialist prescribed weekly morphine patches. These masked a higher percentage of the pain but they always lose strength before the week expires, so Fridays have become a particularly difficult day for her.
Due to CRPS, the symptoms she suffers in all parts of her lower body, arms, shoulder, upper back, shoulder blades, and feet can vary from day to day but those which I have noted include:
- Constant chronic nerve pain.
- Episodes of incapacitating pain throughout her entire body, exceeding labour pain in intensity.
- Varying degrees of either searing/stabbing heat or ice cold sensations in various parts of her body, sometimes both at the same time.
- Sore shoulder blades, ribs and other parts. Intense muscle spasms.
- Painless stomach spasms Oesophageal spasms involving pain and difficulty swallowing.
- Breathing difficulties and oxygen deficiency.
- Weaknesses in the arms and legs. Pain, discoloration and swelling of hands and feet.
- Joints locking up.
- Clumsy hands, causing her to either drop things, knock things over or burn herself.
- Fluttering sensations in her upper back mainly in her shoulder blades.
- Loss of use of arms after repetitive action.
- Embarrassing perspiration.
- Dehydration.
- Severe headaches, bringing nausea, fuzzy head and fatigue.
- Skin sensitivity, feeling like a burn or nasty graze.
- Reduced cognitive capabilities.
- Poor concentration and co-ordination, listing and over-balancing, which has caused falls, fractures and a severe burn.
- Mood swings, depression, anxiety and episodes of being unable to cope.
These have lasted for twenty years and the disease is incurable.
Even full strength morphine medication doesn't relieve her pain completely. The supplementary medication can make her dopey and unable to drive or cope properly; and despite the morphine patches, she is in daily pain; but - in addition - flare ups sometimes occur and might take weeks to settle down, requiring further medication, gentle exercise and relaxation therapy.
Flare ups of additional pain are brought on by every day tasks such as housework, gardening, shopping, lifting, and repetitive actions; also cold temperatures and anxiety are contributing factors. She is unable to do anything that requires lifting, reaching or repetitive actions, without repercussions.
For example, even holding a phone for extended periods provokes lasting pain in the muscles of the areas used.
Her capacity to open cartons, cans and bottles etc. is compromised and she can only drive very short distances because holding the wheel is difficult.
The severe burn that she suffered (CRPS was a contributing factor) has also left her with complications, as have fractured vertebrae and Non-Hodgkin's Lymphoma - which is thankfully on hold but requires an avoidance of chemicals and reliance on pure bottled water.
Joan is a very stoic person and she has always refused to allow this dreadful incurable condition to dominate her. Through her own inner strength she maintains a positive facade and she hides the symptoms from everyone (me included) by dosing up prior to outings and family gatherings, giving the false impression that she is better than she really is. She will always participate with a smile but will then sometimes collapse in pain and exhaustion after everyone leaves.
She is my hero.
Here is a link to CRPS on Wikipedia; and a recent article in the Sydney Morning Herald about a woman who contracted the disease which probably explains some of the effects of this incurable disease better than I can.