Dealing with neuropathic pain

I had a useful visit to the pain clinic on Tuesday. Val accompanied me and I was interviewed by a pleasant team of three: a doctor (physiologist sort-of-person), an acupuncturist and a psychologist. They all agreed that they could help me and were impressed by what I was already doing to help myself. It was also agreed that the pains may or may not be anything to do with PD and that I might have something quite different - fibromyalgia was mentioned, with which I am familiar - as well as this odd parkinsonism, but that it didn't really matter what it was. Their job is to help me manage my pain, not to diagnose what's causing it; a very pragmatic approach which appeals to me.

The upshot is that initially, I will have a course of four 'Westernised' acupuncture (i.e. with an understanding of what is being done in terms of the nervous system rather than just traditional acupuncture points) treatments starting after my June holiday, since I has never tried it and was very open to the possibility that it could help. Thereafter, I will be supported according to my needs and what works. Mindfulness could be another helpful pathway which the psychologist will undertake, aided by 'guru' Val (who is very keen on meditation). And the doctor explained that, among other things, I can have small injections of anaesthetic into my principal aching muscles which can give relief for a while.

So all-in-all, a very positive and worthwhile visit. Well done the NHS! 

EXCELent way to portray drugs and their actions

I've discovered spreadsheets and the charts you can make from them. A picture, it is said, saves a thousand words. This is certainly the case here. The chart below is largely self-explanatory. Basically, it saves all the diary 'waffle' and is an attempt to digitise the way I feel from day to day. Here I present the first three months of 2013 and the main idea behind it is to see if I can spot a correlation between the drugs I am taking and my sleep, pain, motor control problems and slowness (bradykinesia). So far, one thing is clear: I have too many variables and so need to stick with the main drugs without changing the amounts. If I then introduce something new (like gabapentin) upon a constant background of dopaminergics, change should be obvious and directly related to the new introduction. See below for explanation of the key.

Graph showing relationship between drugs taken and perceived effects. Click for full-sized version

Left vertical axis

L-dopa = co-careldopa, 125mg 3 times daily

Pramip = Pramipexoles, 0.7mg 3 times daily

Amitryp = Amitryptiline (now discontinued; not helpful)

Gabap = Gabapentin (a muscle relaxant), titrating (=slowly increasing dose) to 300mg 3 times daily

Clonaz = Clonazepam, 0.5mg once per day

Horizontal axis is time.

Right vertical axis is my digitised perception of sleep quality, muscle (neuropathic) pain, motor control problems (fumbling because hands won't do what I want) and slowness (bradykinesia). 0 is normal and 10 is as bad as can be.

Once set up and understood by me (thanks to Dalmae, my daughter-in-law who knows spreadsheets inside out), these records are quick and easy to update and charts like that above will be the core of this blog from now on.

Conclusions so far: need to stop short-term experimentation with doses and persevere with main drugs, adding or subtracting other hopefuls from time to time. Short-term stopping and starting (see February, above, when I became convinced that the meds weren't helping!) are a mistake. At present, I am titrating gabapentin to a higher dose, as agreed with Dr Rhys Davies, my neurologist whom I saw last week. This may be having a useful effect. Time will tell. I have - at last - got an appointment to visit the main hospital Pain Clinic where they may have some useful advice to offer on pain management. Meanwhile I continue muscle-stretching exercises (an eclectic mix of qi gong, pilates and standard physiotherapy) which I have been doing almost every day for over 2 years. And, of course, there's hard physical work to be done on the farm which I continue to find helpful. Inactivity, particularly sitting, remains problematic. Hacking out hundreds of bramble roots is a current favourite as is getting massive branches of ivy out of the poor trees.

So what neuropathic disease do I have? The best we can do at the moment seems to be a form of Parkinsonism but clearly not Multiple Systems Atrophy in which decline is rapid. My condition seems to be stable on my regime of drugs and exercise. Not ideal but I can live around it. 

Diary: February 2013

2/2/13 L-dopa dose too low so increase to night and one in morning (125 mg). Pains on 1/2/13 as bad as ever been, partly because of spending hours on knees painting roof?

3/2/13 2×125 mg L-dopa in the morning. Very uncomfortable during day unless working outside pruning raspberries. A sense of desperation as I search for some way to relieve the constant tensions in my major muscles. Spend some time last night searching for information on muscle relaxants.In general, not sleeping as well as previously and I suspect amitriptyline is no longer working. It certainly doesn't seem to have any effect on my aches and pains. I read during my research that clonazepam ceases to be effective if used for long periods. Over the last week I have generally taken clonazepam and amitriptyline early in the evening followed at bedtime by L-dopa only. I am still trying to find the optimum dose of L-dopa.
4/2/13: reduce clonazepam to 1 in evening and amitryptiline to 25mg. L-dopa 125mg morning and early evening.
6/2/13: increase L-dopa (syn, for co-careldopa) to x3per day. Muscle cramps quite bad and fumbling noticeable. Sleep adequate.
8/2/13: Sleep v poor with constantly tensioning muscles in legs and shoulders. Drugs as 6th. Symptoms of fumbling worst in late morning during and after exercises presumably coincide with max L-dopa blood concentrations? Prompts Q yet again: is L-dopa making me worse? It has no effect on muscle cramps which are seriously lowering my life quality. Do I need Dantrolene for chronic muscle spasm? (http://www.patient.co.uk/medicine/Dantrolene.htm)

Some conclusions

It seems to me that I'm thrashing about in the wilderness of not knowing what drugs do help and what drugs don't. 

• One thing seems to stand out: amitriptyline at a 50 mg dose does really seem to help me sleep comfortably. 
• Furthermore using voice recognition software as I am really is good for making me speak clearly. Its really good speech therapy!
• I remain suspicious of L-dopa: I don't think I've got the dose right. Reading around the literature makes me feel that the less dependent I am, the better. Increasing the dose seems to induce side-effects – dyskinesias -- after a year or so of  use.
• Pramipexole seems to be a little or no value in my case. Does that mean that all dopamine agonists are of no use in my case? What should I try others?
• Doctor Mclean has referred me to the pain clinic at the Bangor Hospital and I filled out a long questionnaire from them about what is troubling me. So this is an avenue which may become useful to me: learning to deal with my pain. The clinic is multidisciplinary and even includes an acupuncturist which I should be happy to try if it could help.It continues to be true that if I undertake hard physical work, I generally feel better rather than worse afterwards, but the aching muscles soon return.
• I find that lying flat on the floor in the Pilates rest position for 20 minutes is very resuscitating. And using the practice of whole-body scanning, picked up from meditation procedures, in which I systematically relax muscle groups is helpful. Trouble is within in a few seconds, many of the muscles re-tension. My guess is that much of the pain is due to major muscle groups pulling against each other (because of incorrect messages from the brain?) So it is not surprising that I feel as if I've climbed a mountain the day before. I haven't, of course, but my muscles think I have!

Diary: January 2013

Continued from 2012 diary
2/1/13: still sleeping well but very tired-feeling in morning. Not wanting to get out of bed. So reduce amitriptyline dose to 1×25 mg +1×10 mg (35 mg) at bedtime. He is amitriptyline causing me to put on weight? Up to 79 kg from my usual 75 kg!

3/1/13: blood pressure reading taken before breakfast
Lying – 105/57 64 bpm
sitting 133/78 64 bpm
standing 120/92 86 bpm

6/1/13: start taking 200/50 mg SR L-dopa, one at night to see if better than 2×125 mg per day.

8/1/13: pain same as usual. Reduced dose of amitriptyline to 25 mg. Awake more often but generally good sleep. Rather more 'doddering' than hitherto but can make myself walk normally with swinging arms. Is it too much or too little L-dopa?

9/1/13: worst night for weeks though not so bad as they used to be. Returned to 2 times daily L-dopa as SR type doesn't seem to agree with me. At night, 1×25 mg amitriptyline only. No L-dopa or clonazepam.

10/1/13: Poor night. Cramps and aching muscles and interrupted sleep. Take 1×125 mg L-dopa in morning as usual. 45 mg amitriptyline +2 clonazepam as usual.

11/1/13 much better night's sleep. After a lot of bramble cutting in the afternoon, and absence of medication today so far, muscles particularly in legs ache badly and bradykinesia affects my manipulations of things with my hands. Capitulate and in the evening take 1×125 mg L-dopa, clonazepam and 50 mg amitriptyline.


13/1/13: sleep quite well and very reluctant to rise in the morning. Feel noticeably more doddery and fumbling than ever. We will continue at 3×125 mg L-dopa per day.

14/1/13 rather poor night. Usual lakes and shoulders, arms, groin. Still fumbling.

15/1/13 night as above. Increase L-dopa to one and a half 125 mg 3 times per day.

18/1/13 much the same though better night. Increase L-dopa to 2×125 mg 3 times a da

22/1/13: nights reasonable, but have to repress tendency to writhe: make unwanted jerking movements of the body and neck and purse lips/pull the lower lip down when concentrating on task like writing this. Reduce L-dopa to 125 mg times per day starting at 1400h.

23/1/13 much improved at present. Dyskinesias more or less gone. Muscle pains/aches seem to be unconnected. Much the same as usual.

28/1/13 as above though with muscle cramps and aches. Take clonazepam earlier. Short lie down helps. Take L-dopa times one in the evening since dyskinesias apparent during day. One dose at night might work better.