Life issues with GBS and CIDP-part 1
These are my notes on some of the talks given in November 2008 at the Symposium. Please note the Disclaimer at the top of the thread.
[B]Life issues with GBS and CIDP[/B]
This is much under-recognized and under-treated feature of GBS/CIDP.
Reports say between 15 to 85% of people have this. Probably 50-60%.
The wide variation in reports is likely because this is not a question asked enough, there is variability, and there are a lot of other vital things to worry about at the time like breathing. It also probably indicates how poorly understood pain in GBS is.
[B]Pain can occur at four times.[/B]
1.Pain can occur at the same time as the paralysis/weakness or even predate it.
In as many as a third to half of the people, pain may be the first symptom.
The initial pain is nociceptive– not neuropathic. This means it is like regular post-operative-like pain, not like the latter burning pain of neuropathy.
It can happen in the lower back, hips, and bottom and seems like a deep, aching pain that sometimes is associated with cramping or stiffness. The pain is typically not severe and is often proportionate to the weakness. This kind of pain typically peaks in a few days to a week. The treatments of choice are traditional pain medications. One needs to be careful about narcotics if there is a good deal of autonomic instability or respiratory compromise. This has to be balanced with the fact that it hurts and that pain causes additional autonomic instability itself. Steroids will not help the GBS but can be of benefit to the pain, if used judiciously.
2. Pain can occur as a consequence of immobility.
The best ways to help this are to minimize pressure—perhaps with an egg-crate or air-mattress, to do frequent changes in position, and to do physical therapy.
3. Pain can change or worsen as the paralysis improves
This is more likely due to axonal damage. It also is typically proportional to the weakness. It is different from the above kinds in that it occurs in the periphery (feet and hands) and seems to be more on the surface rather than deep. It is also typically described as burning, tingling, hot or cold. It can be worse at night or after exercise during the resting phase.
4. Pain can occur or change in association with rehabilitation.
This is typically the classic neuropathic pain.
[B]Medications for pain[/B]
Neurontin (gabapentin) or Lyrica (pregabalin)
Cymbalta (duloxetine). This is FDA approved for diabetic neuropathy, but it was said that it can definitely help some people with GBS/CIDP.
Other serotonin/norepinephrine reuptake inhibitors such as Effexor (venlafaxine)
Tricyclic antidepressants—amitriptyline, nortriptyline, desipramine, etc.
Combinations may work when single drugs do not. This physician said one of his choices is Cymbalta and neurontin. Another combination talked about was amitriptyline and oxycodone and gabapentin.
Narcotics—especially longer acting ones like oxycontin.
This can be significant. There is often fear of loss of control, fear of dying and fear of relapse/recurrence. ICUs are not the best at personal dignity maintenance. Often there is depression because of life changes and alterations and stressors in the structure of the support system.
There was discussion as to why pain is worse at night. This may be, in part, due to distractions in the day and greater fatigue at night, but it also may be affected by body steroids and body changes at different times of the day (circadian rhythms).
There was discussion about cold feet. The most important first thing to figure out is whether the feet are really cold to another persons touch as sometimes they may not be actually cold in temperature, but just feel that way to the person with the neuropathy.
This is a much under-appreciated part of GBS and CIDP but seems to occur in the majority of people if asked.
This is extreme tiredness and weariness.
Fatigability is slightly different—in this the more that is done, the harder it is to do it.
There are several potential causes and one should think about all of them and address the relevant ones.
Increased energy requirements in a demyelinated axon. Demyelinated nerves are ineffective in conduction nerve impulses—it takes a lot more energy.
Neurologic fatigue resulting from a weakened body (brain, nerves, neuromuscular junction, and/or muscles)
Inflammation and pro-inflammatory cytokines. ( This is a big reason that often one feels fatigued with the flu.)
Deconditioning (weakness from lack of use of muscles after being paralyzed or bedridden.)
Central fatigue (in the brain). This is rare in GBS/CIDP, but classic for MS
Other coexisting medical concerns—infection, diabetes, thyroid problems, heart, or kidney problems, etc.
Modafinil may be of benefit. It is expensive. Amantadine does not help in the fatigue of GBS/CIDP—only central fatigue.
Consider changes in medications and treat other illnesses.
Treat pain and depression.
Consider a sleep study with specific treatment based on results
Supervised PT and careful exercise.
Energy conservation and planning of activities of the day.
[B]When to rest[/B]
There was discussion about whether to keep working if fatigued or to rest. It was answered that this is complex. One will feel better in the short term if you rest, but the goal is to get stronger, so one has to push a little to keep making steps forward. It helps a lot to have a physical therapist with experience to help.
The goal is the best quality of life possible and feeling terrible from overexercising will not help recovery. It is not expected to worsen the GBS, but it will impede progress toward recovery. One physician said the typical saying is “no pain, no gain”, but in GBS, the saying should be “Pain, no brain”. It is better to do little bits often than to over tire.
The indications of fatigue that should lead to stopping were
Recurrence/worsening of paresthesias
Muscles twitching (if this happens you did way too much—back up and do less next time)
[B]Finding a physical therapist that understands GBS/CIDP and the fatigue associated with them.[/B]
There was discussion to ask at rehabilitation hospitals, to look for physical therapists that are neurologically certified specialists (NCS), and to ask the physical therapists about their experience. The same issues are relevant in MS and myasthenia gravis as in the rarer GBS and CIDP, so the physical therapist might have experience with MS patients.
Exercise clearly improves recovery and helps decrease disability and fatigue.
There was discussion about yoga especially “senior” yoga that might be good for people with neurologic problems because many of the exercises are modified to be less strenuous.
There was discussion about shoes. A few audience members advocated rocker bottom shoes to help push off the foot to compensate some for foot drop. Two companies mentioned that make these are Dansko (available at theWalking Company) and MBT (available on the web).
It is important to realize that the greatest sexual organ is the brain and how one feels about oneself and your body. Features associated with GBS/CIDP that may affect sexual intimacy are weakness, sensory loss, pain, fatigue, sadness, changes in the family structure, and some medications.
Things that may help are communication with your partner—focusing on the positives not the negatives, positioning such as support with pillows to reduce energy needed, resting, timing, and planning. If one can only do a limited number of things in a day, one has to choose what gets priority and do extra resting in preparation for activities that need greater energy expenditure.
There was a survey of about a hundred patients with GBS. Most were young, more than 2 years after diagnosis, and the majority had had reflexes return. Still ¾ reported residual weakness and even more disability. About 40% had sexual dysfunction in their sustained relationship and this was not due to depression or stress in the relationship. Discussion of this will be clearer when it is published which should be soon.