My CIDP has changed in character over time (and with treatment). The main worrying issue that sent me to emergency in April 2008 (aged 62 years) was sudden loss of balance. Balance is still a core issue that I have to manage daily but this has been overtaken by new ones shown in my CIDP symptoms development timeline. Pain is probably the most engaging symptom because it is with me constantly and needs continuous attention. The pain has spread from my legs upwards to arms and now my neck and face over the last few years. My legs particularly, but with progression also my arms, are like rocks with significant muscle atrophy. By feet have a constant "predisposition" to foot-drop. Certainly, the daily pain would be impossible to live with without the mitigating effects of IVIG therapy. The pain is exacerbated by constant fasciculations and numbness if I stop moving. However, breathing problems in 2015 remain top-ranked, while more recent upper body symptoms and "control system" (autonomic*) instability highly troubling, as I feel these are life threatening. Certainly a breathing seizure (however short) is very frightening (and indeed I did think my time had come when it happened in April 2012).
Since my early days with CIDP nearly ALL of my symptoms are worse when I am at rest. This means doctors do not observe me when I am at my worst and also most of the tests are conducted when I actually am most energized and some even when I am in motion? For example, my “sea-sickness” (like a whole body "electrified vibration" or buzzing) feeling can be extremely debilitating at rest but mitigate with movement. I have not seen others using the term "electrified vibration" but it is one that is very befitting my CIDP. The CIDP-induced "electrified vibration" is a horrible feeling which combined with waves flowing criss-cross through my body, and 24-hr fasciculations (muscle bubbling or huge worms under the skin) - visible and invisible - can become very painful in the extremities especially legs and since 2015 my hands & arms. So one of the most depressing aspect of CIDP for me is that it is very difficult to to relax due to the ongoing vibration. Yet any kind of motion feels unnatural and uncomfortable, especially when commenced. I do not feel like moving due to the discomfort but must due the vibration-feeling, numbness, cramping and pain. I get "strength-fade" when holding a weight still but maintain full strength on a 10km run. So I feel weak (at rest) but in fact am not weak (in motion)..
But on top of this I get periodic but frequent CIDP "episodes" of attack typically momentary or lasting several minutes and sometimes an event lasting hours. The episode attacks frequently are inexplicable excruciating pain episodes. I intermittently drop or knock-over things, stumble, etcetera. Also when standing or in motion it is comforting to me to hold or touch a fixed object as it dampens my CIDP symptoms especially my feeling of imbalance.
Sensory vs Motor Response- Early on in my case it was found that many of my symptoms were largely "sensory" [as opposed to motor] but all the same VERY real and debilitating to me. Sensory nerves reach the brain and motor nerves the muscle. The fasciculations are clearly visible in say the calf and appear like muscle bubbling / boiling-water or wave-like-twitching: You can feel and clearly see the muscles bubbling (often with a painful twitch) but there is are also invisible facilitations, "waves" and/or "vibrations" / buzzing sensations (in the individual muscles and even throughout your body). Doctors say I do not have an ataxic gait but I feel I wobble like a drunk! I struggle to stand for fear of toppling-over but to an outside observer appear quite steady and normal. Apparently sensory symptoms are ONLY felt by me and seemingly cannot be visibly observed by others (and only discovered with appropriate nerve conduction studies). Even though my CIDP is very sensory-dominant, it does seem that in 2015 my sensory response is "progressing" into more motor response over time. My strength loss is not yet serious but my intermittent stumbling (caused by sudden loss-of-control and perhaps temporary muscle weakness) is always a threat. Importantly, my strength loss has not been observable to me - I can still "run" a slow 10k and measurements on my arms show about a 15% loss in strength by 2018 compared to early 2015.
Some methods of testing symptoms of CIDP are questionable: • In one case, the electro-diagnostic technician for nerve conduction tests said she was getting faulty readings as my legs were not relaxed [the equipment itself signals muscle tenseness] - but "solid legs" is a core symptom of my CIDP and I was as relaxed as possible during the test. In another case, standard breathing tests are normal but my diaphragm seizes up when I run or even when I am relaxed! These breathing incidents are clearly NOT normal leading me to question the method & reporting for the breathing tests carried out at two leading pulmonary function laboratories. As I indicated earlier, I did not notice any strength loss in the first five years of my CIDP thus the focus by my doctors on strength loss as a diagnostic measure in my case I believe was misguided. Doctors kept telling me not to worry for eight years when I knew something was wrong! This is why I would urge doctors to pay more attention and be more believing of the patient's description of the symptoms as it may well be CIDP. Please see my symptom descriptions at bottom of this page.
In this following table I am ranking my CIDP symptoms according to how threatening & intrusive to my every-day life as at 2015 (which is four years after my definitive CIDP diagnosis). The most serious symptom first (Weighted out of 30 points total and used in an Indexed 2015 = 100% to measure the progression of my CIDP shown on another page:
|Description of most Threatening & Intrusive CIDP Symptoms|
|Severity*||CIDP Symptom Complaint as at 2015|
|1||6.0||Breathing Issue||Complex issue of a heavy diaphragm feel, "reset" gasping events, real & imaginary stop breathing, and diaphragm / chest / abdominal muscle or nerve pain between 2012-2017|
|1.1||2.0||gasping events||Sudden involuntary breathing "reset": during normal breathing an inexplicable involuntary catch-breath inhale or exhale ("breathing-hiccup") episodes. Gasping episodes occurring while awake in normal activities whether active or relaxing. In extreme case breathing-seizure event ("respiratory arrest") of windpipe or diaphragm muscles|
|1.2||1.0||running||Sudden difficulty breathing episode or event when running long distance 8.5-10km at pace that was without any effort or elevated breathing prior to CIDP. Occurs at slow speed too brought on by jerk or twist.|
|1.3||2.0||punched-in-stomach||Feeling of being punched in the stomach and winded causing breathing tightness and central chest pain. Sore diaphragm. Weakness in whole abdominal area, yet muscles feeling solid.|
|1.4||1.0||diaphragm pain||Peculiar acute pain occurring particularly in left-side diaphragm muscle directly at rib-cage. Diaphragm tightness and pain.|
|2||2.0||Neck Swallow-throat-voice||Difficulty swallowing, food not descending to stomach. Voice changing tone, clarity and weakness. General neck area weakness. In 2015 back of neck pain.|
|3||3.0||Legs solid, pain & cramps||Legs like rocks, stinging, electrified, and shooting pains. Periodic major both leg cramping. Frequent (single-muscle) mini-cramps. Numbness and leg cramps, mostly lower leg and feet, at any time but more likely at rest, pointing feet, or jerking. By 2015 lower legs & feet in continuous pain|
|4||1.0||Right Foot Pain||Intermittent pain on top of right foot, internal pain, ankle weakness: restricting ability to walk.|
|5||1.0||Left Leg Use & Pain||Excessive pain and cramp tendency in left leg, especially knee joint, ankle, butt and hip. Sometimes leading to need to limp and feeling weak.|
|6||3.0||Upper-body 2015||Upper body weakness, intermittent pain, control loss.|
|6.1||2.0||hand pain & weak||General hand & wrist weakness and pain.|
|6.2||1.0||arms & shoulders||General arm & shoulder weakness and pain.|
|7||3.0||Eye Wave / Vibration||Real (motor)/sensory eye fasciculations like unstoppable waves or minute vibration, especially with eyes closed and prior to sleep. Internal eye-ball pain.|
|8||3.0||Fasciculations - Muscle Bubbling and Vibration||Muscle waves, vibration, bubbling or twitching real or sensory affecting whole body especially legs (motor!). Also stomach and face, eyes, chest (sensory?) muscles. Bodily "electrified vibration". Very visible and apparently continuous muscle fasciculations 24 hrs in legs (especially at rest).|
|9||2.0||Pressure Sensitivity||Pressing on skin causing feeling of bruising of the area. Tight belts or clothes uncomfortable. Touch by others uncomfortable. Skin feels better when covered.|
|10||4.0||Balance Average||Real (motor) and sensory imbalance with desire to hold or touch reference point. Persistent feeling of drunkenness.|
|10.1||2.0||motion difficulty||Legs feel they do not want to move. Intermittent sudden tripping, or colliding. Limbs & body pain reducing mobility.|
|10.2||1.0||disoriented||Wave/s of disorientation or light-hotheadedness - momentary or lasting hours - feeling of loss of connection to surroundings. Wave often involves spontaneous multiple symptoms|
|10.3||1.0||near fainting||Momentary faint flash episodes, feel like passing out or collapsing from lack of control, quick onset of extreme exhaustion.|
|11||1.0||Sea-Sick Feeling||Flue like symptoms - mostly low level but sometimes truly debilitating requiring bed rest and LONG (12 hr) sleeps. Muscle numbness or whole body stiffness|
|12||1.0||Digestive Discomfort||Slow digestive movement, unpredictable and poor bladder & bowel muscle control. Some bloating & choking. Recent 2014 abdominal muscle weakness.|
|▓||30.0||OVERALL LOG||This is a subjective evaluation overall of how the symptom severity compared to prior to onset of CIDP|
|*"Severity Weight" subjective criteria weighting as at 2015 used to calculate points for severity index|
NOTE: Symptoms change over time as well as progress. For example, the first ranked symptom "Breathing Issue" did not exist in 2011 and has resolved almost completely by 2018.. And at end 2017 Pain is by far the most highly ranked but is hidden above as a sub-issue. Also note that the symptom descriptions assume no IVIG treatment - during the IVIG campaigns the symptoms are significantly mitigated (except for pain).
CIDP & Autonomic- Autonomic "Control System" - CIDP has somehow affected my autonomic nervous system of which breathing, digestion / micturition (bowel and bladder), swallowing, eye control (pupillary response) is dependent. I have significant issues with all these - and lately 2016 temperature (with night sweats) and blood pressure - suggesting some autonomic involvement (autonomic neuropathy / dysautonomia). August 9, 2021 in Portugal on the advice of an excellent specialist in autoimmune diseases, I started comprehensive immune-system blood tests (Euro €1900).
Concepts for My CIDP Symptoms: Chronic Inflammatory Demyelinating Polyneuropathy CIDP feeling, what happens CIDP, effect of CIDP, CIDP signs, indications for CIDP, warning signs for CIDP, cidp fasciculations, diagnosis of CIDP, test for CIDP, find out about CIDP, peripheral nerves CIDP, myelin sheath for CIDP, nerve pain in CIDP, paresthesia, weakness in CIDP, paralysis from CIDP