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General HD topics Open forum for all other issues concerning Huntington’s disease

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Old 14-03-18, 06:36 PM   #1
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Allan's Avatar
Join Date: Sep 2012
Location: Hastings, East Sussex, UK
Posts: 1,155
Default Pain and Huntington’s disease: Guess work - here, there and everywhere

So what is HD-pain and how can it be resolved?
  1. A highly unpleasant physical sensation caused by illness or injury.
    synonyms: suffering, agony, affliction, torture, discomfort, soreness.

  2. Mental suffering or distress.
    synonyms: sorrow, grief, heartache, sadness, unhappiness, desolation, misery, despair, desperation, emotional suffering, trauma.
I wonder if it’s as simple as that? Mental pain gets confused with physical pain - and they do a swap.

I’ve been doing a little bit of amateur research on HD and Pain as there isn’t much in the scientific literature. It seems that some HD-individuals may damage themselves physically, by accident, and are unable to express it as pain because the message doesn’t get transmitted from the area of pain impact to the relevant area of the brain.

Alternatively, some HD-individuals always seem to be “in pain” in specific areas of their body or limbs and can be extremely vocal about it. It’s suggested below that this “pain” could be caused by the brain misinterpreting pain for irritability, anxiety or depression. Because the neurons are dying and the synapses, the “wiring”, is becoming disconnected but just, by chance, finding mismatches to cling on to - hence causing told and untold issues of major concern.

My son had a severe stomach, hunger pain for over 4 years along with several bouts of inexplicable vomiting and other gastro issues. The vomiting has now ceased and he hasn’t asked for Gaviscon or other medication for over 2 years now. I asked him the other day about his stomach pain and he looked at me as if to say, “What pain?”

I find this too with Peripheral Neuropathy - which means that “mixed messages” are reaching my extremities, legs, feet and toes. In the case of my legs, I often have a raging localised itch - high, low, back or front but never all over; then there is the occasional but excruciating trapped or pinched nerve - anywhere between upper thigh and foot of either leg. My feet and toes, though, think they are in a bucket of ice - but it’s all mixed messages, so I’m told. Is this predicament, then, similar to the HD and Pain scenario?

What is pain?
Often the cause of pain is obvious - a fracture, a cut or a bruise, etc. But there are times when the source of pain is unseen, internal and it’s very difficult to find the exact cause of an HD-person’s pain.
  • Short-term pain is Acute Pain, eg a sprained ankle.
  • Long-term is Persistent or Chronic Pain, eg arthritis.
  • Pain that comes and goes is Recurrent or Intermittent Pain, eg tooth ache could be one.
Many acute pains are like an alarm telling us something is wrong. Most minor ones are easy to treat; others may be a sign of something more serious. For example the pain of a sprained ankle will make us rest the leg until it heals. Here the pain is helping.

Persistent pain often serves no useful purpose. The messages from the warning system linked to a long-term condition like arthritis are not needed - just annoying. Over time, it may affect what we can do, our ability to work, our sleep patterns, etc.

Pain signals use the spinal cord and specialised nerve fibres to travel to the brain. These fibres also work to process the pain signals and together they work like a very powerful computer. Sometimes this computer system can go wrong. The messages get confused and the brain can’t understand the signals properly. It can lead to chronic or persistent pain, which can be very difficult to repair. Unfortunately, we can’t just re-boot the system.

Part of this process is linked directly with the emotional centres in the brain. This means how we are feeling has an effect on our pain. If we feel angry, depressed or anxious, our pain will be worse. The opposite is also true. If we are feeling positive and happy, our pain can seem to be less. We are able to cope much better. It shows that pain is never "just in the mind" or “just in the body” - it is a complex mix involving our whole being and how our brain interprets the signals. This can change from one day to the next.

Sometimes, the pain can begin in a short and intermittent way. But then the signals quickly increase and flow along the network. It’s like a “Mexican wave” in a large gathering. It only takes one person to start the wave motion, but very quickly all the spectators have joined in. This is known as “wind-up” and is one of the reasons why chronic pain does not go away easily. The “wave” can last for hours, days or even years. This can lead to a long term, distressing problem which requires skill, time and patience to resolve.

The way a pain signal jumps along our internal system is by the release of Neurotransmitters. There are good neurotransmitters and there are bad neurotransmitters. The bad ones make the pain worse; the good ones can help block the pain. Again, the way we feel, our emotions are involved. But doing something we enjoy, having a good laugh or exercising, we can strengthen our “good” neurotransmitters and so limit the pain. However, if we are depressed or moody, lack motivation and are not active we strengthen our “bad” neurotransmitters and the pain gets worse.

All HD-pain seems to arrive in a blatant, forceful calamity; it hangs around for a while causing distress and mayhem - and then it just fades away.

Huntington’s disease and pain

The prevalence of pain in Huntington’s disease is unknown. An initial case report describes severe pain in two patients with this condition: Somatosensory Phenomena in Huntington’s Disease

In a more recent study, 11 of 19 patients with Huntington’s disease had pain, with altered pain perception to pinprick, touch and temperature in some subjects: Huntington’s Disease

In Huntington’s disease, alterations in peripheral tissue (muscle) may be due to alterations in mitochondrial dysfunction and energy metabolism. Exercise-induced muscle pain has been described in a marathon runner who subsequently developed Huntington’s disease, suggesting that it may be an early unrecognized symptom of the disease. Significantly, there is a 10–25% prevalence of diabetes in patients with Huntington’s disease; diabetes is a relatively common cause of neuropathic pain in a subset of diabetics, but we are unaware of any reports related to how this may impact Pain in neurology patients with Huntington’s disease. As discussed above, pain and depression are frequently co-morbid conditions; the prevalence of severe depression is twice as high in Huntington’s disease as in the general population, reportedly as high as 40%.

The basal ganglia are involved in both acute and chronic pain processing and have a prominent role in sensorimotor integration, which is altered in Huntington’s disease. So it wouldn’t be surprising if the compromised function of the basal ganglia in HD led to alterations in pain processing. It’s known that experimental lesions of the caudate impair pain avoidance, indicating impaired pain processing.

The basal ganglia seems to be the leader or coordinator of the brain for transmitting messages. The caudate appears to be responsible for informing us that something is not right and we should do something about it: Wash your hands! Lock the door! As these examples are meant to suggest, obsessive compulsive disorder (OCD) is likely to involve an overactive caudate. On the other hand, an underactive caudate may be involved in various disorders, such as ADD, depression, aspects of schizophrenia, and lethargy. Ad (HD) infinitum …

Pain in Neurodegenerative Disease: Current Knowledge and Future Perspectives

Pain and psychological factors in Huntington’s disease and Parkinson’s disease

… pain severity was significantly predicted by participant-rated anxiety and depression. Clinician-rated anxiety, depression and irritability also significantly predicted severity of pain after controlling for confounding variables.

Conclusion: This research has confirmed that pain is indeed an issue for people with HD, particularly during the later stages of the disease. Caregivers and health professionals should consider the possibility that people with HD might be experiencing pain, particularly if they are showing signs of anxiety, depression or irritability. Better treatment of pain may help to improve mood, reduce feelings of anxiety and irritability and ultimately improve the quality of life for people with HD and pain.

But I still don’t get it. I know it’s like an electronic gadget’s memory. Something goes wrong and parts of it don’t work - but other parts continue to function reasonably well. If it was a super-computer or a robot it would have been programmed to repair itself in the event that something didn’t function correctly. We know that minor physical damage or injury will repair itself.

So, with a different outlook to the norm, could bypassing pharmaceutical medication and using naturally grown products, possibly help to resolve some of these HD-brain mishaps, crashes, meltdowns and breakdowns.

We’ve trialled: CBD oil in capsule format; Lion’s Mane Mushroom capsules; Ashwagandha capsules; and we’ve just started trialling CBD oil (2 drops under the tongue twice a day) … part of the 5-a-day regime.

New Day; New Outlook; New Challenges; New Possibilities; New Outcomes; New Successes
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