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General advice:
Toxic medications: https://www.cmtausa.org/living-with-cmt/managing-cmt/neurotoxic-medications/
Toxic medications: https://www.cmtausa.org/living-with-cmt/managing-cmt/neurotoxic-medications/
General advice
General advice
To avoid
To avoid
Pressure on the nervous system
Leaning on elbows
Sitting with legs crossed (also tailor style)
Overstretching the nerves in general
Sit or lie down on a hard surface
Sitting in the same position for a long time
Kneeling (f.e. when gardening or reaching for something)
Working with hand power tools. (f.e. try to avoid vibrations)
Carrying bags by the handle (f.e. groceries in plastic bags)
Holding something tight (f.e. phone)
Tying shoes too thigh
Wearing high heels
(you can wear them, but make sure you have an extra pair of sneakers with you)Gym/fitness:
- Don't use monkey bars in the gym: this could break your plexus nerve!
- Avoid repetitive movements
- Be careful for pressure!Carrying backpacks: make sure the backpack isn't that heavy on the shoulders.
Check out ergonomic backpacks that don't lean on your shoulders.
(Source: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3076297/:
Recovery of brachial plexus lesions resulting from heavy backpack use: A follow-up case series): Nylund T, Mattila VM, Salmi T, Pihlajamäki HK, Mäkelä JP. Recovery of brachial plexus lesions resulting from heavy backpack use: a follow-up case series. BMC Musculoskelet Disord. 2011 Mar 24;12:62. doi: 10.1186/1471-2474-12-62. PMID: 21429232; PMCID: PMC3076297.
Stereotypic repetitive movements
Stereotypic repetitive movements
Examples:
- exact repetitive movements when
- walking
- running
- cycling
- swimming
- weight lifting
- knitting
- writing
- chewing
- using scissors
- Typing (use a speech-to-text device)
- Using computer mouse (use different mice - left/right and ergonomic)Advice:
variate and change movements frequently
when walking it is beneficial to walk on different surfaces (grass, sand, stone ...). In this way you avoid the repetitiveness.
Stretching
Avoid stretching since this can damage our myelin
Keep in mind that using a monkey bar is also stretching, you could break the plexus nerve.
Toxicity
Alcohol
Chemotherapy for cancer treatments
Diabetes
Nitrous inhaler: recreational use can cause palsies in the entire body
Vitamin C is an important vitamin. However, it is advised to avoid vitamin C in high doses (Vitamin C has been shown to reduce PMP22 expression by suppressing PMP22 transcription (sources: https://bestfoot4wardblog.com/2020/02/20/hnpp-the-latest/ and https://n.neurology.org/content/82/10_Supplement/P7.089 - Our results suggest that patients with HNPP should be cautioned when taking large doses of vitamin C ).
Make sure you don't have a vitamin B12 deficiency! Make sure you don't have a magnesium deficiency! These are important vitamins for the nervous system. You can have your blood checked for these vitamins.
Stress/anxiety
Avoid stress, since some members report an increase in symptoms when being stressed out. Seek psychological help when feeling anxious.
Rapid weight loss
Rapid weight loss apparently triggers symptoms
Avoid repeteated injury
It is important to avoid REPEATED INJURY, because this could lead to permanent nerve damage. Recovery from palsy episodes is usually complete at first with numbness and weakness going away entirely. So, at first, the nerves are damaged and eventually heal completely. Over time, with repeated injury, the nerves are damaged and only partially heal. And with further injury, the damaged nerves again only partially heal. This continued partial healing leads to the generalized neuropathy symptoms of permanent numbness and weakness. (Source: hnpp.org)
To do
To do
Maintain muscle strength
avoid overdoing
take it step by step
contact a physiotherapist that is willing to read up on your condition
gentle stretching
gentle movements (swimming, tai chi, pilates ...)
Don't stop moving. Look into sports that you can still do. See: Staving active.
Braces
A lot of resources talk about wearing braces on arms and legs. Make sure you consult with a medical specialist before trying braces, since they can make the pressure worse and worsen your condition.
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