My Dad has suffered from Parkinson’s for around 15 years. He does not suffer tremors but his main issue is chronic pain linked to both Parkinson’s and problems following a Girdlestone operation (removal of hip joint) around 5 years ago. The pain is not linked to infection.

He can only lie on his left side or back, due to the painful condition of his right hip area. He cannot put any weight on his right leg without severe pain, and can only walk with either crutches or a walking frame.

He suffers 24/7 chronic pain focused on his right hip, right knee, and the intervening muscles, Similar pain radiates up his right side and into the base of his neck. and across his lower back.

Separate pain, which he ascribes to Parkinson’s, focuses on his right shoulder, and down to and beyond his elbow joint. This arrived in the last 18 months or so, and seems irrespective of use, or rest or application of heat.

He is currently taking no pain medication whatsoever, neither analgesic nor NSAID, and has not done so for many months, due to inability to find an effective medicine or one which did not cause fluid retention.

He has tried Morphine but this was found to give early undesirable side effects and little relief. Tramadol was taken intermittently for perhaps 3 years and gave no relief. Fentanyl was administered via spinal infusion during distraction of femur & pelvis but gave no relief. Paracetamol
at below maximum dose gave no relief but resulted in fluid retention.

Pregabalin and Gabapentin have also resulted in fluid retention. As have the following NSAID’s: Diclofenac, Ibuprofen, Naproxen, Piroxicam and Rofecoxib

Have we run out of options or is there anything out there which anyone can suggest as the situation is desperate and we would appreciate any help anyone can provide.

Many thanks

Ettie
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replied May 28th, 2008
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Muscle pain can be present in Parkinson disease (PD) but it is not so typical symptom for PD like tremor, muscle stiffness and slow movements. Joint pain and muscle pain are rather due to other conditions than PD.
Pain in the right hip and knee can be due to osteoarthritis. Why was his right hip replaced? Has he ever made X-ray image of the right knee?
Pain in his right leg and lower back can be due to spondylotic spine damages that cause pressure on spinal nerve roots that come out from the lumbar and sacral spine. Has he ever made X-ray image of the lumbar-sacral spine to confirm/exclude spondylosis?
Spondylosis of the cervical spine can cause the pain in the neck and right arm. Has he made X-ray image of the neck spine?
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Users who thank Dr. Nikola for this post: Ettie 

replied May 28th, 2008
Hi Dr Nikola

Thanks for your reply.

Yes, he has had numerous x rays and full body scans but there has been little feedback on teh cause of the pain. I have his full health report and information and a copy of his scans. He has seen many specialists but he is just desperate to get some relief from his 24/7 pain. Nothing seems to ease it so any suggestions would be gratefully received.

Many thanks

Ettie
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replied May 30th, 2008
Doctor
You can't treat some pain successfully without knowing its cause. Painkilers may calm the pain but won't cure it. Can you rewrite those reports in a post so that I can see them?
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replied May 30th, 2008
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.)
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replied June 4th, 2008
Doctor
Can't speculate about any possible treatment without precise diagnosis. It is obvious that painkillers are not efficient any more.
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