My crucial CIDP Management - How I manage daily life with progressive CIDP: Exercise + Infusions + Diet & Drugs for Chronic Inflammatory Demyelinating Polyneuropathy

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. Surprizingly, in 2024 I am finding my left foot is someone improved - even regaining some of its shape!.

 

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. Now in 2024 I rely almost entirely on the hoody to dampen my nighttime eye-fasciculations.

 

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.

• Nightly (or indeed anytime) stretching about 15 minutes: Stretching BY FAR provides the most potent method of relief for leg tightness, cramping and pain! Indeed, sometimes during a stretch I actually feel the muscles resetting themselves (even though the process is painful). Stretching makes it far less likely that I will have a cramp while sleeping. I focus on my feet and legs. I have various types of leg stretches that I have found useful. I also do crouch stretch of my feet and find circling each foot while sitting (holding ankle resting on top of other knee) very effective. I found it essential to hold each stretch position for a count of 100. By the end of the fifteen minutes my legs feel a whole lot better!
• Running 10 km in about 80 minutes 2016 at age 70!: I have run as an amateur for more than thirty years and will never stop if I can help it! I switch to "auto-pilot" when I run and get quite remarkable relief from my CIDP symptoms both during and afterwards. My CIDP has slowed my pace especially due to a breathing issue that can develop both as a result of a jerk or sudden movement and speed. I run at least twice a week and three times if I can always keeping the same pace from start to finish. Sometimes I do a fast 6 km walk too between runs especially in the days immediately following a IG infusion
  Mid-2017 I am running 10km every second day but I am finding that sometimes I do not get the normal pain relief. I mean the unique neuron-pain not regular muscle pain (which I do not get). In these few cases it seems that the running may actually exacerbate day-to-day nerve pain. By 2019 (age 73) I "run" 10 km twice a week but at a jogging pace of about 7 km per hour.
• Alternate stand-sit Position for desk work: I have customized my work desk so that I can stand or sit while working. My computer can move to the required height and everything can adjust to multiple positions allowing me to change position frequently. Although the pain is still there, frequent re-positioning definitely helps.
• Exercise Intolerance: There is some talk of exercise intolerance with CIDP. CIDP is for me inherently linked with exercise intolerance and it is true that keeping very still helps with pain and perhaps cramping. However, I believe this is short term and definitely short sighted as the overall benefit of exercise is absolutely definite for me. There are difficulties for me but I count myself lucky compared to some others with CIDP who are paralyzed. Exercise does temporarily cause stiffness and very tiring nowadays if not exhausting. BUT again for me this is absolutely not an excuse for not doing the exercise and there is no doubt in my mind that my exercise (indeed any movement) is essential to the good management of my CIDP!

  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) -

  • Gluten Free Diet: I have found that I do better on a gluten-free diet. This is an inconvenience but I have tried on-and-off gluten and think I fair better without.
  • Low Fat, Meat and Sugar Diet: I eat twice a day. Breakfast at noon is invariably whole oats oatmeal, with few raisins and skim milk. Best evening meal is vegetables with legumes or rice or quinoa. I have meat twice a week on average.
  • Low Alcohol consumption: I sometimes take a small wine with dinner or occasionally the odd brandy with coke. I cannot tolerate much alcohol and know that it tends to dehydrate and cause cramping.
  • Digestive Assistance: I take three teaspoons of psyllium husks each morning and four tablespoons of freshly ground (gold & brown) flax seed twice weekly. Lately mid-2017 I realized I need to take a full glass of water with the seed as well. This regimen keeps the digestion working quite well and lessens digestive discomfort caused by CIDP. I changed this regimen in 2018 as I found that I needed to reduce potassium consumption. (Potassium in the blood can increase as a side effect of IG). Instead I take a large bowl of whole oats with zero potassium almond milk. This is a good substitute to my previous approach to digestive assistance. Entering 2024 I found it important to be on the lavatory frequently even though I do not feel any need: this policy, plus exercise, has greatly improved my digestive comfort.

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.

• Night before the IVIG Infusion: All I do is drink plenty of liquids the night before. No alcohol and no drugs. I used to take one Benadryl the night before but dropped it when I realize it is not useful. I do my nightly stretching and also maximize sleep time to get a good night sleep.
• The day of the IVIG infusion: I drink a whole lot coffee, coke, water etc from the time I get up. I take in my laptop to work but get up and walk around several times during the infusion. I take two Benadryl and one Tylenol while at the clinic before the infusion commences. For six years I insisted on a slow infusion rate of 150 mL/h max as this was supposed to reduce side-effects. I found in the Panzyga trial in 2018 that a very high infusion rate of 620 mL/h is actually better and minimized many of the side-effects in my case. (I now infuse at a high rate even for sub-Q scig)
• I walk around (even go for a coffee while connected) as much as possible during the infusion as sitting for four hours causes pain and cramping.
• The day after the IVIG infusion: I continue to drink liquids. I have stopped taking any drugs as on balance I found they do not help and indeed may make it more difficult to handle the situation.
• For ten days following the IVIG infusion: I feel the side-effects of the IVIG infusion for about ten days. IVIG side-effects for me include a mild flue-like symptoms in the first ten days after each infusion, painful body scabbing rash lasting fifteen days, disfiguring large lip scabs, occasionally inflamed red eyes and eye-lids lasting about five-days and in the past inside mouth sores for five days (the latter at first was severe but no-longer as I seem to have got used to it after four years of IVIG). I take no drugs and take it somewhat easy for ten days, trying to keep a normal workload and activities. I do regular stretching and fast walking but no running.
• My IVIG caused lip-sores: Finally a Solution in 2019 The lip-sores are similar to the bodily sores or spots I get (and have no similarity to the herpes virus lip-blisters) starts with inflamed lips on the sixth day after my low-dose IVIG GAMUNEX infusion. On the 9th-day the blotches appear, turning into scabs through the 12th-day. Take a look at the actual photo on right - my CIDP lips with scabs - pretty ugly! After this time the lip-sore tissue mends and by the 16th-day I am clear. My lips though are now very "delicate" having had a few years suffering monthly peeling. In addition my lip-edges are bumpy / crevices / lined and getting worse. If anyone can offer a solution, I would love to hear from you.

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 IVIG caused reaction cycle 2017: While on this subject I note the overall IVIG (adverse) reactions I experience in the four week cycle of the maintenance dose regimen -

1. Day One - On the day of the IVIG infusion, I get some immediate relief from my CIDP symptoms, but I feel groggy, sometimes a little dizzy and usually have an increased propensity to have a muscle cramp
2. Day two through five - Feel return to "normal" or average on-IVIG symptoms (much better than off-IVIG of course!)
3. Day six to fifteen: Lip-sore issue begins as described in the above paragraph titled "My IVIG caused lip-sores: Any Answers?" Other symptoms about average level.
4. Also around the above time range: May start having a few bodily sores on torso. This used to be severe when I first started IVIG 2011 but since about 2013 the torso blisters became only a minor issue. (However, I do have very noticeable discoloration blotches on my skin as a reminder of those days)
5. Day sixteen to twenty-four: Usually feel lower than normal on-IVIG CIDP symptoms - that is much better than were I to be off-IVIG but also have low-level cold symptoms such as a running nose. Also have a tendency to have nose bleeds.
6. Day twenty-five symptoms start getting worse and I begin "craving" by next IVIG infusion that occurs day twenty-eight.

After developing an adverse reaction toimmunoglobulin "IgG", as of February 11, 2021, I am off ALL CIDP drugs.

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: January 24, 2024 I tested poasitive for Covid despite five vaccine jabs! See CIDPlog COVID-19.

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