My CIDP Management: Other than CIDP I have always had excellent health. As a 30 year veteran of 10k running I am very aware of changes happening to by body, and certainly did not expect to experience CIDP symptoms. Now I realize that CIDP is to be with me for ever I have found that good management is absolutely crucial to my daily life and that if I give-in to the challenges, it will be much, much worse than it already is! Exercise, especially running, may be the best non-medical treatment for my CIDP. My ability to still run 10 km amazes my doctors (and even myself actually)! I have an excellent diet which is gluten free and this has reduced my CIDP-induced digestive discomfort. I do not take drugs or vitamins other than IVIG therapy (and testosterone patch). I avoid exposure to chemicals especially those at home including perfumes/lotion. I try to keep up my busy lifestyle as a global traveling business person but I have found it more-and-more difficult to maintain. Sitting (and standing) at a desk or in a plane is in 2016 becoming highly problematic due to the pain of non-movement and deleterious effect it has longer term. The pain has escalated through 2018. Entering 2020 I believe I have made progress in my management of my CIDP: I am pleased that I still do not need drugs for pain and I am able to do most daily activities despite more than a decade of CIDP.
After so many years I have found that FREQUENT all body movement throughout EVERY DAY combined with a daily muscle-stretching routine is my underlying best approach to managing my CIDP!
My Pain Management for CIDP: To an extent I am in a hard place as at end 2015 with frequent excruciating pain in my legs and lately arms has become a dominating CIDP management issue for me. Regular sitting in a chair is particularly problematic. I have not found a good solution for CIDP induced neuron-pain (which is quite different from muscle pain) - and my doctors do not recognize its significance the huge issue it is! Even more disturbing, my doctors do not seem to understand the uniqueness of this CIDP "neuro-pain" - it feels almost continuously like I am bruised all over (particularly by legs, arms, shoulders and back) and that various positions immediately exacerbate the pain. As 2016 began and now still through 2017 I was stuck with the knowledge that frequent movement is really the main ongoing way I have found to reduce the general pain caused by my CIDP. I avoid the (painful) normal sitting position opting for cross-legs, one leg up, crouching etc. I have also recently found it astonishingly helpful to avoid allowing my feet, legs, hands / wrists and neck to get cold. (Cold extremities is a core symptom of my CIDP all year round and winter is very challenging as I feel crushed by the the bodily pain). I now wear thick socks (three layers) in the house and importantly in bed (including winter gloves). I bundle-up to keep warm to excess when outside. Indeed, I find it quite effective to "overheat" the feet, legs and hands / wrists for sleep and also keep the whole body at what I would previously have considered way too hot. For me the pain reduction benefits vastly outweigh the discomfort of being hot. On the flip side to movement, I have found that keeping absolutely still in a comfortable lying position or sleep (see below on sleep) also offers relief from pain. This October 2017 I experimented with cannabidiol CBD oil extract (click on link for details on my experiment) from Cannabis Marijuana as a CIDP pain-killer but found it ineffective.
My Positioning for CIDP "foot-drop": Related to the above is the major problem of dealing with the tendency of the front of both of my feet to push-forward exacerbating muscle tightness (in the foot and lower leg) and the resulting pain and cramping. It does not feel to me that weakness is directly causing this tendency as one would think based on symptoms typical of CIDP, but rather an overall lack of control of all the leg muscles. To counter the push-forward tendency I sleep in bed with my feet lightly against the wall (sometimes with cushioning) although trying not to actually push and put pressure on the feet. Similarly when sitting I will always try to have my feet against an object so as to lift the ball (and toes) of the foot in relation to the heel. In the last year I have discovered that the best approach is to use my own leg and foot muscles to pull-back the front of my foot. I have found surprisingly that I can keep the lift position but also feel relaxed. The lift action provides a mild muscle stretch providing quiet a bit of pain relief. Since I discovered this approach I do foot-lifts throughout the day in any position - probably numbering more than fifty times a day even though my left foot (in 2019) is somewhat deformed possibly caused by a neuromuscular effect of my CIDP.
My Sleep Management for CIDP: Sleep is both an enemy and friend in my management of my CIDP. Due to the constant exhaustion caused by my CIDP, I have been sleeping more than twelve hours a day! The sleep of course directly brings immediate relief from the CIDP symptoms and the relief lingers somewhat after waking. Lying completely horizontal and still (with front of feet pulled-back) definitely relieves pain. However, I do not like sleeping half the day (or longer) and I know it is critical to keep moving for my long-term mobility. In December 2019 I resumed the testosterone patch which seems to provide some boost to my energy level. I also drink lots of caffeine-containing coffee & tea and push activities that keep me away from sleep. I have not found a way to manage the eye-flutter and bodily fasciculation surge I get when I close my eyes for sleep. Since the main onset of my CIDP in 2009 it has never been relaxing to close my eyes and this, with related eye issues, remains one of the most uncomfortable symptoms I experience. Since I stopped IgG in October 2020 I have had a surge of (mostly sensory) eye-fasciculations that is no less than traumatic (and may be the root cause of the mini-seizures I am having). A year later October 2021 I am managing eye-fasciculations by keeping a bright light on to get to sleep (like sleeping with the eyes open), keeping my head warm with a hooded sweatshirt, and sometimes placing a heavy pillow on my head.
My Exercises for CIDP: Most of the time I do not feel like moving due to the discomfort of my CIDP: But I force myself as I know the discomfort will be FAR worse without it. I do daily stretching to alleviate cramping and I find frequent all muscle movement an essential treatment for my CIDP. At first I found that the some exercises were impossible due to extreme muscle tightness or immediate pain or cramp. However, I found with perseverance it can be done and it is well worth it. For example, I can hold touching my toes for a count of 100 without difficulty now: This is a good leg and back stretch. Also I do not give up in the face of potential dangerous symptoms but rather adapt. I can develop breathing issues or muscle pain on a run but will absolutely continue the run to completion if at all possible! I maintain my weight, indeed cut 10 kg when my breathing issue suddenly became more serious in April 2013. Less weight is helpful for nearly all my CIDP symptoms.
My Diet and Drugs for CIDP: I have an excellent diet which is gluten free and this has reduced my CIDP-induced digestive discomfort. I do not take drugs or vitamins (other than IVIG treatment which is a blood product) -
My IVIG Infusions for CIDP: After six years of IVIG infusions I have found out by trial and error the approach that works best for me.
As of June 1, 2018 I began I three-month trial of very high "pulse-dose" dexamethasone corticosteroid aimed at suppressing the adverse effects of IVIG infusions in general. While the lip-scabs was the trigger: my doctor is also hopeful I will have less pain and also potentially cut back on the IVIG dose I take every four weeks for my CIDP. December 2018 I switched to sub-q CUVITRU IgG. This has pretty much solved my lip scab issue. (I did have one attack that lasted a month but since then only slight lacerations occasionally).
My CIDP Management of COVID-19 coronavirus pandemic: March 2020 I decided to add a COVID-19 webpage to CIDPLog about how I am coping with the added burden of Covid-19 coronavirus on CIDP I believe I am at elevated risk due mainly by (mostly resolved) breathing issue as well as my ongoing chronic CIDP symptoms: See CIDPlog COVID-19.
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