Hi Dr Nikola
My Dad wrote the following as a summary which I hope may help explain his situation. I also have a disk containing his MRI and CT scan pictures, its a shame I cant post these as well. Thanks once again for taking a look, any advice would be appreciated.
How disabled are you ?
I use a fully adjustable bed with side rails to assist in getting into bed and getting up, and turning, which are otherwise extremely difficult. I can only lie on my left side or back, due to the painful condition of my right hip.
I cannot put any weight on my right leg without severe pain, and can only walk with either crutches or a walking frame. However, as advised by Dr Shaji, when walking I do use my right leg in order to try to preserve mobility. Pain limits me to approximately 50 yards at a time.
I sometimes need help to sit or stand due to a combination of
the painful right leg, a somewhat weak left leg, and a painful right arm. I have yet to find a comfortable chair, since sitting inevitably places painful upward pressure on the thigh muscles.
I need assistance to bathe, sit on the toilet (I have a raised seat),
to dress, to lift anything even moderately heavy, and to pick up anything from the floor, since I can only partially bend down. I do not need assistance for meals. Getting into and out of a car is impossible unless it has a wide nearside front door (approx. 39”) and fully reclining seat. Help is then necessary.
I have, but seldom use, a wheelchair due to the uneven nature of most areas, pedestrian pavements, entrances to shops etc with steps.
I cannot legibly write more than a few words.
The reach of my right arm is severely limited to the rear and above horizontal in that direction.
I am occasionally depressed, cannot concentrate for very long, and tire easily, dozing while reading or watching t.v., for example.
I try to stay off my bed during the day.
Sleep is reasonable helped by mild sedation, but is interrupted on average every 2 hours by need to pass urine. No problem with bowels beyond occasional constipation.
How much pain do you have ?
I have 24/24 severe pain focused on my right hip, right knee, and the intervening muscles, with less pain extending to my right ankle joint through the calf muscles. The pain reduces when in bed but sharply increases when I move in any way, however slight.
Similar pain radiates up my right side and into the base of my neck. and across my lower back.
Separate pain, which I ascribe to Parkinson’s, focuses on my right shoulder, and down to and beyond my elbow joint. This has arrived in the last 2 months or so, and seems irrespective of use, or rest or application of heat.
Daily exercise as directed by physiotherapist is painful in the areas above. Daily massage and a hot bath help a little.
Muscular cramps and spasm are now less than earlier and not a major problem.
Present medication for pain.
I am currently taking no pain medication whatsoever, neither analgesic nor NSAID, and have not done so for many months, due to inability to find an effective medicine or one which did not cause fluid retention.
Note re. Analgesics:
The following drugs have not been effective during the last 5 years or so. Morphine (c. 2002) was found to give early undesirable side effects and little relief. Tramadol was taken intermittently for perhaps 3 years, gave little relief, and was discontinued on medical advice. When resumed (2007) gave no relief. Fentanyl administered via spinal infusion during distraction of femur & pelvis (2005) gave no relief. Paracetamol
at below maximum dose gave no relief (2007) but resulted, for the first time, in fluid retention.
Pregabalin (2007) and Gabapentin (2007) have also resulted in fluid retention.
A Kidney Function test (2007) was normal in all respects.
Note re. NSAID’s
I have been taking Indomethacin intermittently since around 1970 for lower back pain following lifting injury, without any adverse effects until recently (?2005 when a neurologist in Coimbatore prescribed Ropinirole to supplement Carbidopa/Levodopa. This combination has been continued by my present neurologist. I mention it in case there may be felt to be a link – apart from this we have no clues). Since about that time the following drugs have all resulted in immediate fluid retention: Diclofenac, Ibuprofen, Naproxen, Piroxicam and Rofecoxib (Prior to its removal from the market.)