Unfortunately,
many doctors have the misconception, based on outdated and archaic information
and data, that pain is a not a symptom and does not exist in patients who have
Periodic Paralysis. This is a serious issue because these doctors refuse to recognize
Periodic Paralysis and refuse to diagnose individuals who desperately need to
be diagnosed because they experience pain.
Last year we created and carried out a series of four surveys attempting to gather as much information as possible in order to create a set of criteria that doctors could use to aid in diagnosing patients. Ninety-five percent of the participants indicated that they experience pain regardless of their diagnoses; Andersen-Tawil Syndrome, Hypokalemic Periodic Paralysis, Hyperkalemic Periodic Paralysis, Normokalemic Periodic Paralysis or Paramyotonia Congenita. It was the same whether they were diagnosed genetically, clinically or still seeking a diagnosis.
It
was discovered that the pain can be experienced before, at the beginning,
during or after episodes or it can be intermittent or chronic (all of the
time). The pain was described in many ways such as achy, burning, sharp, constant,
tenderness, sudden, cramping, rigidity, contractions, tightening, stiffness,
charley horses, growing pains or spasms. It was reported as only involving one
limb or body part, partial body, the trunk, several body parts or the entire body.
The
pain results from several natural ways depending on the type of Periodic
Paralysis or genetic mutation. In some cases it is from the swelling of the
muscles when they fill up with fluid as the potassium shifts. Some of the pain
is from the rigidity and contracting of the muscles. A third cause can be the
shifting of sugar with the potassium. A fourth cause may be from low magnesium.
Cold can create rigidity and pain for some. Metabolic acidosis, which can often
develop in Periodic Paralysis, causes pain in the bones and chest pain.
A fifth cause and huge issue that can cause us great pain is as follows...
We must never push ourselves when in an episode or coming out of an episode because our muscles are very weak and the connective tissue (ligaments, tendons, cartilage, adipose) and other organs have to take up the work of our failing muscles, which is not their job. This puts great stress on them which can cause damage to them and creates great pain for many us.
Waiting until your body is ready to move, etc. is something that we should/must do...most of us are in paralysis during our sleep and many of us wake up still paralyzed or partially paralyzed, so not pushing ourselves in the morning (or any other time) is important. You will know you are in an episode or coming out of it if in the morning (or any other time) you are weak, having trouble breathing and/or speaking or keeping your eyes open, among other things.
You should also not be moved, if possible in an episode for the same reasons.
***Please Do Not Push Yourself, Or Try To Push Yourself Or Let Others Push You Or Move You When You Are Weak, Having Symptoms, Or In Partial Or Full Paralysis.***
A fifth cause and huge issue that can cause us great pain is as follows...
We must never push ourselves when in an episode or coming out of an episode because our muscles are very weak and the connective tissue (ligaments, tendons, cartilage, adipose) and other organs have to take up the work of our failing muscles, which is not their job. This puts great stress on them which can cause damage to them and creates great pain for many us.
Waiting until your body is ready to move, etc. is something that we should/must do...most of us are in paralysis during our sleep and many of us wake up still paralyzed or partially paralyzed, so not pushing ourselves in the morning (or any other time) is important. You will know you are in an episode or coming out of it if in the morning (or any other time) you are weak, having trouble breathing and/or speaking or keeping your eyes open, among other things.
You should also not be moved, if possible in an episode for the same reasons.
***Please Do Not Push Yourself, Or Try To Push Yourself Or Let Others Push You Or Move You When You Are Weak, Having Symptoms, Or In Partial Or Full Paralysis.***
Other conditions or diseases can co-exist causing permanent or intermittent
pain such as Ehler-Danlos Syndrome (EDS), arthritis or fibromyalgia. These may
be aggravated when an individual with Periodic Paralysis is in an episode or
paralysis. Intermittent paralytic episodes can damage organs in the body,
including the muscles. For some individuals the pain becomes permanent and may
be misdiagnosed as fibromyalgia, or other medical issues like rheumatoid
arthritis. Pain may also be caused from other unnatural means. The off-label
medications typically prescribed for Periodic Paralysis or other drugs such as statins may create pain.
The
best method to avoid the pain during the episodes is to avoid the episodes by avoiding the triggers and maintaining a balance in diet, rest, hydration and
other natural methods.
Some people with Periodic Paralysis may be able to take medications to ease the pain but many people cannot handle medications. It is advised that the pain be treated with natural means such as eating certain foods, herbal teas, heating pads, warm baths, ice packs, relaxation techniques and massages. Many more ideas can be found on the Internet.
http://beyondmeds.com/2012/10/03/natural-pain-relief/
Until later...
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