Part 2

May 8, 2006 at 8:40 pm

Many pieces of the pain puzzle, such as how conditions like Wood’s develop, and how acute pain becomes chronic, have yet to be solved. However, pain specialists and clinicians have been able to unravel considerable chunks over the last 15 years thanks to advances in imaging technology, which have made it possible to see the brain in action without resorting to the scalpel. Canadians have historically been at the forefront of pain research.

Last year, a cross-Canada effort supported by the NeuroScience Canada Brain Repair Program discovered a key mechanism behind neuropathic pain. This debilitating form of chronic pain–RSD is one example–is caused by nerve damage and does not respond to any available drug treatment, not even morphine.

This discovery will help researchers develop diagnostic tools and drug treatments that could allow sufferers like Wood to become active again. It could not have come about, however, without a prior Canadian/British breakthrough. In the mid-1960s, Dr. Robert Melzack of McGill University in Montreal and his British collaborator, neuroscientist Dr. Patrick Wall, came up with an explanation of pain that revolutionized the field.

Until then, it had been believed that pain messages travelled on a linear path, from receptors in the skin, muscle, joint or organ via a nerve to the spinal cord, and then up to the brain. It was also thought there was a direct relationship between tissue damage and how much pain was felt–the more damage, the more pain. The experience of World War II veterans helped dispel this idea, as doctors found that some veterans were suffering more than could be explained by the tissue damage alone.

Melzack and Wall’s “gate control” theory held that pain perception depends on the interplay between the peripheral nervous system–nerves extending from the spinal cord to the skin, muscles or internal organs–and the central nervous system (the spinal cord and brain). Not only did they quash the idea that pain takes a one-way route, but they also explained that pain signals are changed by influences from the brain and from other non-pain signals from elsewhere in the body.

Though modified slightly over the years, the gate control theory still holds. Crucial to the theory is the fact that peripheral nerve fibres, which bunch together to form nerves, come in different sizes and conduct messages to the brain at different rates. Some nerve fibres respond to touch, pressure and temperature, while others end with receptors that detect tissue damage, called nociceptors. There are millions of nociceptors in the body, with the highest concentration being in areas prone to injury, such as fingers. Sharp, stabbing pain is transmitted along the speedy A delta nerve fibre, while dull, throbbing aches are transmitted along the slower C fibre.

In response to a harmful stimulus, such as the cut of a knife, the nociceptors relay pain signals–in the form of electrical impulses–along the peripheral nerve fibres to the dorsal horns of the spinal cord. Here, they meet with specialized cells that act as gatekeepers, filtering the pain messages on their way to the brain. With severe pain messages, such as when you touch a piping hot stove, the gate opens wide to allow the message to zip to the brain’s switchboard, the thalamus. The thalamus then sends the message on to the somatosensory cortex, the limbic system and the frontal cortex, which are responsible for physical sensation, emotion and thought, respectively.

While all this is going on, a series of reactions is taking place at the site of injury to cause inflammation, which brings on pain and swelling but also increases blood flow and promotes healing. The brain is meanwhile relaying messages of its own. Just what those signals are–such as ordering the release of the body’s own pain-blocking chemicals–depends not only on genetic makeup, but on age, gender, cultural experiences, upbringing and emotional state.

For instance, anxiety can amplify pain by provoking the body’s ‘fight or flight’ response, causing the hormones adrenalin and noradrenalin to circulate. “They actually increase pain transmission, particularly in a nerve that has been damaged,” says Dr. Patricia Morley-Forster, medical director of the interdisciplinary pain program at the University of Western Ontario’s Schulich School of Medicine and St. Joseph’s Health Care in London, Ont. “If you’re anticipating something’s going to give you a lot of pain, you’ll generally have more pain than if you prepare yourself that something is not going to hurt. The anticipation response is a physiological (process) of increasing your own pain-killing substances to block incoming messages.”

In her work, Morley-Forster is especially interested in harnessing the placebo response, which is a beneficial response to treatment that cannot be explained by the treatment alone. “Every therapy–whether it is touch, massage, acupuncture or pills–always has a placebo component that the patient brings to it. We should try to enhance it as much as possible and convince people that it is more their own natural healing capability. ”

To do that, “you have to try to find out what’s driving (the patient),” she says. “The more the patient feels the doctor understands what their goals are, the better the therapeutic response they will have.”

Mailis-Gagnon, whose popular science book, Beyond Pain, explored the connection between mind and body, advocates a ‘biopsychosocial’ approach to pain. “You have to look carefully at the (whole) person. The emotional component (to pain) is so huge. This is how people with the same physical pathology have very different reactions. People from certain cultures are much more stoic in presenting their problems, while others from different cultures are more flamboyant.”

A person’s environment, how much attention they give to their pain, as well as previous memories and experiences all colour their response to pain. When diagnosing her patients and determining a course of action, Mailis-Gagnon takes into account the gamut of physical, psychological and social factors. Often, a combination of medication and psychological treatment is required.

While not all cases are as difficult to decipher as Wood’s, chronic pain is a fact of life for between 20 to 30 per cent of Canadians, according to a wide-ranging 2002 study by neurologist Dr. Dwight Moulin of the London Health Sciences Centre in Ontario. The rate climbs to almost 40 per cent in adults 55-plus, in forms such as back pain, arthritis and cancer pain. Besides the toll on individual lives, including social isolation and inability to carry out daily tasks, the economic cost is massive; the Canadian Pain Society estimates it to be $6 billion a year, including missed work days and increased use of the health-care system.

Until the last five years, chronic pain did not get much attention at medical schools either, dismissed–for all the wrong reasons–as being “all in the head.” While this attitude is changing, the health-care system still has a ways to go in providing adequate attention to chronic pain.

Part 2

May 8, 2006 at 7:32 pm

Senior Member
Registered: May 2004
Location: Burlington, VT
Posts: 154
Just wanted to chime in that there is hope. In my case, the IVIg worked very well. After a year of treatments, my doctor has declared me in “complete remission.” I have no symptoms, and I can do all the activities that I did pre-CIDP.

I agree that a relatively early diagnosis was key. The literature that I’ve read suggests that, if CIDP is not treated early enough, the damage goes beyond the myelin to the nerve axons themselves. I guess the axons cannot regenerate as well as the myelin can.

The fact that you’ve been diagnosed early, are young, active and healthy otherwise are all points in your favor. I would be very optimistic.

Of course, the word “remission” is not the same as “recovery.” This is a chronic illness and we can, and will, have relapses. I’m sure others who post on this board who’ve lived with CIDP longer than me can speak about relapses.

Hang in there.
Brian Sullivan
Burlington, VT
hermit crab
Registered: Nov 2004
Location: sask. canada
Posts: 95
I may be wrong BUT
My guess is that MOST that recover to near 100% just get to busy
living and leave this forum. Guess we can’t really blame them in a way, but it would encourage the ones new to this if they posted
the success stories.

Registered: Mar 2005
Location: ca
Posts: 30
time and patience

Its a hell of a thing to go from being “regular” as I like to say to being..different. I miss hiking so much and watched a commercial where some dumb lady was running for her credit card and all I saw was..she was running.. I was never fond of running but boy do I get what it is not to be able. I did pp treatments, chemo, steroids.. every pain pill they can give you.. Now I take neurontin religiously it eases the electric shocks and helps me cope. I am somedays good to go meaning walk like a dork but walk and sometimes in a wheelchair for months. I found ivig worked well for me when its every 30 days and it took 4 months to find that.. A small inconvienence. My doc said no I wouldnt get better..he also said I wouldnt get worse. I would have good days and bad ones. I didnt eave sad I left feeling at least I would have good ones. Please try hard to see how good those good ones are and to find one thing, just one thing, in your day that is amazing. I find this helps me a ton. I am 43 and happy to be living. I get scared like you must . Here we hold each other up. Somehow it makes it less frightening. Dont you ever be afraid to say you need a shoulder. We all have someone but having those who GET what your saying means a ton. It did for me and I know it did for so many others.

Wishing you all good things,
Dick S
Senior Member

Registered: Apr 2002
Location: Foothills of NC
Posts: 1481
Hermit crab may be right. If I remember reading some data correctly, 5% of cases go into spontaneous remission. Complete recovery, never see it again. The rest of us are in the 95%. DocDavid hit it on the head, two types. But among the two types, the severity varies greatly. You could be relapse/remitting who doesn’t relapse but every six months or so. Or you could be every three weeks. Your relapses could be so minor you might hardly notice them, or they might put you in the hospital. That is the part that is so confounding to the Doctors, why it is so different among everybody.

Early intervention does lead to less damage. Less damage keeps you healthier. Basically CIDP results from a foul-up in your immune system. Your immune system wants to attack your myelin sheath (the covering around your peripheral nerves). When this happens, the signal the nerve carries becomes lost or fouled up. It gets reported as pain, burning, numbness, tingliness, etc. Or if it is a muscular nerve, the muscle won’t work. You have cells in your body called Schwann cells that will repair the damaged myelin, if the immune system would quit attacking long enough. Hence relapse/remitting. Whenever the immune system gets the orders to “attack” The battle commences. It will continue until either a medical intervention, or your body figures a way to shut it off. In CIDP’s case, unless you are that 5% that goes into complete spontaneous remission, you will always go through the cycle. There is no cure.

That’s the hard news, the good news, is that if your relapses are light, and your treatment effective, your life can be fairly normal. I think Neurologists consider CIDP to be a treatable neuropathy.

I am on the other side. Mine is the progressive kind. It isn’t cyclical, it is just “on” all of the time. Fortunately for me, it is “on” slow, and the progression has taken years. But, I learn to live with it the best I can, as you will too. You will learn to recognize changes that will indicate relapses, etc.

Other things will come at you as time goes by, so don’t be a stranger. One thing we have done here is lived with CIDP. We can help you with that.

Dick S
If it is to be, it is up to me.
Fred Martin
Registered: Jun 2005
Location: Outside Atlanta, GA
Posts: 85

Hermit Crab is probably right about the postings tailing off as recovery progresses. Being new to the discussion board, I have not had a chance to see but a few new situations posted and then follow their progress. It is interesting to see some of the older postings and compare them to my case and others posting.
It has been a real eye opener to read about the diagnostics in other parts of the country, and world. The good news is that many of the treatments work for many of the CIDP’ers, and new treatments are in trial as we speak, so it is encouraging to see some progress being made with our illness.

I don’t know what type work you do, but one of the things my employer allowed me to do when I was having trouble walking and standing was to let me bring my small electric scooter to the office as I did not have enough upper body strength to use a wheel chair. I got a small fold up four wheeler that weighs only 65 pounds including the battery. Will go up to 10 miles on a charge and fits easily into the car trunk. Recharge only takes a couple of hours. Put a bike bell on it for blind corners in the office and was able to zip around with no problems. It kept me mobil until my recovery reached the point where I could work without it. Only needed it for a few months, but still use it to go to car shows, antique/flea markets, etc.

Hope your are making good progress with your treatments and recovery. Stay positive.
Registered: Jun 2005
Location: Richmond, Tasmania
Posts: 50
I guess you can see by the postings, everyone has a different degree of stabilty, even in case of the chronic/progressive.
In my case, I nearly died from IVIG in hospital (it seems I was allergic and they didn`t think to check) so there is a lot that has to be considered, with your early diagnosis, you have the upper hand and a good one at that, DO NOT allow them to take a biopsy, for if you have a positive outcome, you will no longer have that nerve, besides, they only use it to further the ends of study and the cost to you would be great.
Secondly, don`t treat the Doctors as if they know what they are doing, ask questions, be sceptical and always post your procedures for advice from all of us who have been through this, storys will vary, but that is the nature of this curse and NEVER forget, that your metabalisim (immune system) is not the same as the guys in the next bed or posting.
Stay positive because you are young and obviously fit, I was 44 when I found out I had CIDP and had been as fit as a bull, but this curse has a way of leveling the playing field regardless and the fatigue is probably your worst nightmare as it is with us all.
Take comfort from the people on this site, as they will speak from raw experiance and the heart.
Think positivly and never give up hope.