Excessive Physical Exertion Takes a Toll
March 21, 2017 at 8:55 pm
I’ve posted about physical exertion and toll it seems to take afterwards. The thing is, I’m still shocked as to how weak my muscle strength truly is at this point.
I put my recovery point during the first week of January when I received a week’s dose IViG. Since then, I’ve made continual improvements, while on Prednisone. While it is more like two steps forward, one step back, progress trends in the right direction.
While I’ve tried to avoid too much physical exertion at work, the bottom line, is that my job involves exertion and sometimes there is just no way around it. This Friday was a case in point. I was actually feeling the best I’ve felt in two months. But after a long day of lifting, moving, and heaving, I’ve had 4 days of misery.
I’d probably still be horrible, but I called my doctor and he told be to take 1200mg of Gabepentin for the next few days. That dosage actually knocked the neuropathy down a couple of points this afternoon.
My calf muscles feel like I went on a forced 50 mile fast hike. The muscles above and below my knees feel like they are going to buckle and the neuropathy pain down my legs, feet, and even hands feels like an 8 on a scale of 1-10. I still have full sensory and motor control, but along with the muscle weakness, the nerves just hurt.
Even today, I had to get down on knees to get something off the ground. I couldn’t get myself up until scooted on my knees and used a table to pull myself up! Had I been in an open field, I could have never gotten myself up! That’s how much Friday’s work took out of me!
I guess just two things come to mind:
1) The realization that CIDP has atrophied my muscles this much, despite physical therapy and exercising on my part is truly scary. I mean it has been almost 3 months since my turnaround from not being able to walk, and yet my muscle strength is a “paper tiger”!
2) Do you have such setbacks after hard or excessive physical exertion?
Basically, it seems to take me 4 or more days to recover from these episodes.
So, how long after your recovery point, did it take for you rebuild your muscle strength something close to normal–pre-CIDP?
Thanks for any insights or just commiseration. : )
March 21, 2017 at 9:44 pm
Thanks to GBS/CIDP/MFS I have a bad case of Axonal damage on top of Myelin deterioration. My legs and feet have never returned to anything close to pre-CIDP. My arms and hands have though. It took about three years.
There were many setbacks; many times the feeling of exhaustion was discouraging. My fingers wouldn’t straighten and I would tape Popsicle sticks (later tongue depressors) to them at night to hold them straight. I have many “helper tools” because I couldn’t even hold eating utensils for a few years. Now I can open a quart of soda with just my hands, without using one of my adaptive wrenches 🙂
The general rule of healing from CIDP is about three years. Most people continue to improve well after the first year and continue at that rate until the third. After the third, healing slows. In my case, Rituximab helped boost my healing and continues to do so nine years post affliction. But it’s not enough to repair my ankles and feet.
I’m encouraged that you are on top of this disease and still in the early recovery phase. You may never regain all pre-CIDP abilities, but you will likely heal better than many.
March 21, 2017 at 9:49 pm
Thanks for the pep talk. Didn’t realize that the healing process took that long. That is truly amazing and daunting. Is that the repair of the myelin or other things?
I’m glad to hear Rituximab has offered you some relief.
1 to 3 years. Simply wow. I guess I need to adjust my expectations.
March 22, 2017 at 1:29 am
Hi Jim, I’m in L.A. too. My doctor is Shalini Mahajan. She took over Dr. King Engel’s practice after he retired. I can tell you that one of the things that Dr. King Engel and Dr. Mahajan have told me is to NOT do intense exercise. It appears that you are finding that out. Don’t overstrain your muscles. Now, I only use 10-15 pound dumbbells instead of much more. Not too many reps. Not to failure. The one thing you don’t want to do is to overdo anything.
Just my understanding.
March 22, 2017 at 3:36 pm
Hi midilance, I tried to get into Dr Engels when I first got the disease. He was already in semi-retirement in 2008 and wouldn’t take me, even after I wrote him a personal appeal. I ended up with a Dr who had worked with him. Most recently I’ve seen Dr Lewis at Cedars.
I didn’t know Dr Engel’s practice was taken over. It’s good to know that there is still an option to use this great resource in LA, thanks for the update!
March 22, 2017 at 12:38 pm
I realize you are still working so how much you cannot do, that is, limits on your performance, seem a little out of your control.
If you have sensory involvement it’s expected you would feel that damage and the corresponding recovery and relapses.
There are probably several things going on simultaneously with your neuromuscular situation. First of all is the damage to the nerves themselves. This may take the form of simple myelin damage, or it may progress to include axonal damage and, sadly, axonal loss. I think of it as rats chewing on the wires to my motors. In the sections where the rats ate all the way through, my motor is not going run.
Secondly, I do not mean that p/t is not useful rather it has similarities to a spinal cord victim. The signal will not go through. That section of muscle is not going to respond because the signal is gone, at best, not correct. Imagine the muscle fibers with good nerve conduction still working trying to do what it is you could do before. Not gonna happen because not all the muscle fibers are firing correctly yet.
Thirdly, You’ll self-discover your limits. Keep track of them and try not to exceed them. Whenever I did I paid a bad, severe cramping and increased fasiculation price. From finger cramps to leg cramps to muscle failure your body will yell at you when you’ve done too much.
Recovery is time and treatment dependent to the extent there is not irreversible axonal loss. Myelin and axonal recovery takes time. It occurs sequentially from your core out, not concurrently everywhere at the same time.
Same as Jim-La I have a list of things I was previously unable to do. Turn a key in the ignition, pull zippers, do buttons, hold chopsticks, open a water bottle, hold a pencil, open those stupid little packs of pretzels or peanuts on the airplane and on and on.
I am able to do most of those things now. As Jim stated, little by little over at least 3 years. And, same as Jim, I have areas of loss that will never recover.
March 22, 2017 at 2:46 pm
Hey Brian, Jeff here. Wow, sounds like I wrote your post. I had been feeling pretty good after last ivig infusion, in fact had a couple of days of feeling next to normal only to be followed by days of increasing muscle pain and more nerve activity below the knees. Not nerve pain but just annoying nerve movement. The muscle weakness was the big shock. Having been without a doc for nearly 2 months I have relied on my infusion nurse to keep me grounded as the mind can really do a number on you. Luckily my jobs is mostly at a computer so not as taxing as yours but it just gets frustrating to be on this roller coaster. When I feel at my worst, a 59 mg. Tramadol seems to work on both muscle pain and calming the nerves. It lasts about 8 hours but enough for a good nights sleep and just a break from the mental wondering. I did get a new neurologist but not seeing him until mid-April. I have to keep telling myself that this is a long slow process so ups and downs seem pretty common but at least some light at the end of the tunnel. Thank you Jim for your constant insights. Bryan, ask your neuro about starting ivig treatments, couldn’t hurt if you get approved. I like following your journey as we started with this at about the same time. You also might try coconut oil as a carrier oil followed by Sombra cream for the thighs, knees, and calves. I apply morning and night with noticeable relief.
March 22, 2017 at 3:03 pm
Thanks for the replies. They validate my suspicions and the 2-3 year window sets some new expectations. I’ll work on setting some new limits at work. BTW, I’m finally starting to feel better today. So it took 4 days to basically recover from over-exertion.
March 22, 2017 at 4:05 pm
It’s good to know about Dr Mahajan and that she is a neuromuscular specialist trained under Dr Engels (Professor of Neurology and Pathology, Keck School of Medicine, USC). This may be an option for some seeking a good Dr in the LA area. Info about her practice at the Los Angeles Neuromuscular Center can be found at the link below, they even take Medicare:
March 22, 2017 at 8:25 pm
Hi Jim. I have always felt fortunate to have been Dr. Engel’s patient. That feeling has continued with Dr. Mahajan. I was diagnosed in early 2008 and have been on IVIG ever since. My CIDP problems are minimal compared to many others’. It took out partial use of my left hand. Fortunately, I have had no pain.
March 30, 2017 at 8:10 pm
I have to agree with BryanF on this one…seems that the harder I push my body the harder the CIDP pushes back. I have days that I feel like I can tackle Hell itself with a bucket of water and the next…boom…down for the count for the next 3-4 days. Its been 1.5 years now approximately and I am still not even close to normal for me. It’s driving me nuts that things I was able to do and work hard seemingly only “yesterday” now are so far out of reach. Hearing about the 3 year recovery window kinda sucks honestly. I know I am not a patient person but dang it I want my life back.
March 31, 2017 at 6:39 am
CIDP just seems to be full of surprises.
I finally went to see my neurologist on Monday.
He cut the steroid dosage which seems to have cut down on some negative side effects, including the weakness in my legs.
But, because of the numbness in my hands, arms, legs and feet, plus a bit of motor control loss in terms of walking, I’m starting a 5 day course of IVIg on Monday.
I think I was hit by 3 things over the last month.
– CIDP hits back when you push too hard or when you are run down by the flu or a cold.
– Prednisone dosage was too high for too long and it was sapping my strength and in general making me feel horrible. At 20 mg I feel stronger, my thinking is clearer….
– I’m now in the midst of a relapse.
I’m hoping with a tolerable dosage of prednisone that the immune system still stays suppressed and the IVIg gives me the needed boost.
April 28, 2017 at 8:28 am
Hi Bryan F,
Yes, I am the same way right now. Whenever I over-do it, or seem to have another physical illness, my CIPD acts up. I was feeling good up until a week ago. I then did a bunch of yard work over 2 days… my allergies acted up (my eyes were so swollen) and then came the calf/feet twitches, fatigue and painful, weak hands. So now I am trying to relax and get better. I was originally diagnosed with CIDP since my symptoms ran through my body over 10 weeks, but then my LP was fine, so they switch did to GBS. I think it is still TBD. I have never had any treatments, so I’m wondering if CIDP ever just remits on it’s own. All I know is that it’s been consistent that the more I use my hands the more they hurt. Stay positive! It’s a tough road to travel, but you are not traveling it alone!
April 28, 2017 at 4:14 pm
Hi JenD, You seem to be struggling with what you may have. GBS usually peaks in 4-6 weeks and then begins to improve on its own. GBS is almost always a one-time event and will rarely reoccur. However, GBS can return as RGBS or in the chronic form CIDP. There are other peripheral neuropathies/variants too that are similar. Charcot-Marie-Tooth disease (CMT) and Diabetic Peripheral Neuropathy (DPN) are commonly misdiagnosed as GBS/CIDP. Here is a summary about the various autoimmune disorders:
The length of time it takes to heal from GBS varies greatly by individual and the severity of demyelination. Residual symptoms may last for years after most of the healing is done.
CIDP can occur again multiple times over the course of months or years. Most doctors agree that CIDP is indicated when there are 2nd and 3rd attacks similar to the original GBS attack. The severity of additional attacks varies by individual and, like GBS, CIDP symptoms differ greatly between those of us afflicted.
CIDP can usually be distinguished from GBS through the following key tests:
• Diminished or absent deep tendon reflexes.
• A spinal tap, to analyze cerebrospinal fluid for elevated protein levels.
• A Nerve Conduction Velocity Study that measures how well individual nerves can send an electrical signal from the spinal cord to the muscles.
• Complete Blood and urine tests.
CIDP rarely remits without treatment and nerve damage usually worsens and becomes more permanent if not treated. More info about CIDP can be found here:
CIDP can be a difficult affliction to diagnose exactly. Even assessing the results of an NCV is a bit of an art. Usually, all the tests must be made to confirm the presence of CIDP. Neurologists that have specialized in treating CIDP know this and the signs to look for. Other tests can be found in the following publication and may help you and your doctor better understand the disease, its variants, and how to treat it:
With GBS/CIDP, it is best to seek care from a neurologist well experienced in treating the disorders. Is there a Center of Excellence near you?
April 28, 2017 at 5:21 pm
I learn something every time you post. Thanks.
As far as exertion goes. This month is the “busier” season where I work. I went in at 3am and left at 2:30 pm this afternoon.
My IVIG treatment from April 2-7 finally started to kick in last week. If lifted the horrible feeling of fatigue and I regain a lot of stamina, but numbness and a bit of motor control issue still remain (hoping next week’s treatments work on these areas).
But after almost 12 hours on my feet, the numbness in my hands, calf muscles, and feet have been dial up to an 8. Walking and gripping right now are horrible. Over doing it is a bad thing. The problem is balancing that with the need for money and insurance ; )
I’ll probably hit the hay by 6:30 tonight and hope a good night’s sleep fixes things. Since the IVIG’s effects have kicked in, I do seem to recover quicker during the last week and a half.
Now that my new doctor is going to give me a maintenance dose of IVIG every 4-5 weeks, it will be interesting see how the disease and recovery now progress.
I can tell you that going without IVIG for 3 months definitely made me feel run down, fatigued, and of course the numbness and motor control issues came back with a vengeance.
April 28, 2017 at 8:38 pm
Thank you SO MUCH for your message. It answered a lot of questions I have had: 1.) Can CIPD get better w/o treatment? I certainly feel better than I did 6 months ago, and I have had no treatments. Unless you count the 1 week of a tapering high-dose of Prednisone. I went to see a spine physician when I had the tingling at the beginning – she thought some vertebrae were compressing nerves, so hence the Prednisone. I don’t know if that somehow affected the speed of which things happened. I have had an extensive work-up… everything from MRI’s/CT scans, blood work… no Lyme (tested 3 times) the only thing coming back positive was the NCS, think it showed a conduction block and other things I can’t remember. I’m a fairly health 39 year old, no diabetic issues, my neurologist looked at the arches of my feet briefly and didn’t say a word, so I do not think it is CMT. I do feel like I fall within no category though based on the timing. 2.) What defines CIDP? That was so helpful to read. I specifically asked about that and never heard an answer that made sense. I have had some symptoms reappear when I over-do it, but they are not even close to what happened to me 6 months ago. My ankle reflexes have been almost absent, but my knee reflexes have been fine. LP was normal (think it was a 19) and all blood work has been fine.
The only thing I have read about that I may never get an answer to is Progressive Inflammatory Neuropathy. I shared this with all of my doctors and they disregard it, but my symptoms started a few days after I hand mowed over some ginormous decaying mushrooms while doing yard work. I was literally in a cloud of purple/black dust for a minute, inhaling who knows what. I knew it was bad when it happened, I forgot they were there and I had some people out to aerate and seed our lawn the week before. I don’t know if they sprayed the mushrooms with anything. Anyway, since I don’t seem to fit into any typical diagnosis, I always have it in the back of my mind. None of my doctors seemed to know how to test for toxin exposure, and my thoughts are they didn’t feel like they had to. Just in case, I have taken charcoal tablets and I take clay baths. I will do anything to feel better! Jim, do you know anything about that? It seems to me like the timing is too coincidental.
I appreciate your prompt reply and am happy I joined this group. I’m sorry to hear that you have gone though GBS/CIPD/MFS. You are providing a great deal of help to those of us going through this since most people in the health care community are fairly unfamiliar with it.
April 28, 2017 at 9:10 pm
Bryan, Thank you so much for your active participation in these forums and your willingness to share your experiences to help others!
April 28, 2017 at 9:44 pm
Hi Jen, Prednisone IS a treatment for GBS/CIDP, so yes, you had some treatment. Corticosteroids treat inflammation (from myelin damage) and reduce the autoimmune system response (fewer bad antibodies produced). Since taking it was at the beginning of your infection, it may have very well contained some of the more serious affects of the disease.
Trauma to the body (the flu, an injury, shingles, anything else that gets the auto-immune system to take action, like a fungal infection from mushroom spores) can trigger our systems to produce antibodies to rid us of the invaders. Those of us that have had GBS/CIDP have an auto-immune system that knows how to produce antibodies that can attack “self”.
While you may be waiting for definitive treatment definitions from your doctors, I suggest you begin taking Alpha Lipoic Acid. ALA is an over the counter “vitamin”. Not all ALA is alike and the one I take is here:
ALA dosage should be 1200MG – 1800MG per day to be effective. ALA was the subject of a CIDP Clinical trial started in 2015 and being conducted by the University of Oregon. I haven’t heard the results.
When I had a rare fungal infection requiring neurosurgery to remove it, I was seeing an infectious disease specialist. The drug I had to take was extremely expensive and the only reason my Insurance company paid for most of it was because my fungal infection was life threatening.
If you continue to feel that the exposure to spores and other agents (toxins) may have compromised your health, you should seek out an Infectious Disease specialist near you. They know how to test for toxin exposure. The one that came recommended to me was:
Hope this info helps.
April 28, 2017 at 11:10 pm
Jim, unless my information (from Parry and Steinberg) is obsolete, steroids are not given for GBS, only CIDP.
April 28, 2017 at 11:19 pm
Jim, the study of ALA that you mention was being done at Oregon State University at the Linus Pauling Center.
April 28, 2017 at 11:22 pm
Jen, I agree with Jim that you may have neither GBS not CIDP, particularly as you say the spinal fluid test was negative (although that is not definitive). Neuropathies are difficult to diagnose and there is a lot of variation among cases classified as CIDP.
April 29, 2017 at 12:59 am
Thanks GH, according to Jen, she was not given Prednisone for GBS/CIDP. Her doctor’s intended use of it was to treat a vertebrae compression issue. However, the drug has known influence over the immune system and tissue inflammation. It’s possible to have slowed her immune system from producing CD20-positive B cells (bad lymphocytes that attack myelin).
My memory was off regarding the university name; it’s time-consuming to look things up when the forum search function doesn’t always work properly. Thanks for correcting my typo, but I was close lol..
April 29, 2017 at 8:23 am
So sorry to hear you had a fungal infection as well. You’ve been through so much.
Thanks for saying that the steroids may have slowed down my immune system. I have always thought that too. And yes, they were given for what the HCP thought was a compressed spine. I have read about ALA and actually bought some a few weeks back. I have not taken it yet though, bc I feel like I am taking so many other supplements. I will start to work it in. One more question for you, every time I look to see what causes demyelination, I see GBS/CIDP. Do you know of anything else that would? This past weekend when I did yard work I sprayed a bit of round-up (which I feel guilty for using bc it’s so bad for the environment). I then had my eyes swell up and the twitching started again. Not sure if it’s a direct correlation. I started taking charcoal tablets and semi-fasting about 6 weeks ago. I think that’s when most of my twitching stopped. I almost feel like I may have had a toxin exposure. Possibly exposed to something that had GBS like consequences? I hope for an answer one day. I’ll ramp up the charcoal again this weekend and see if I can get the rest of my twitches under control. I did ask my PCP for a referral to an ID, but it was for Lyme and they would not take me since I had tested negative 3 times, 2 antibody and one western blot. I could ask again for the toxin possibility.
If you would’t mind sharing, how did you know you had a fungal infection? I have had 2 MRI’s, one 5 months ago and one 3 weeks ago. They were fine, the last one showed I had some mild scattered mucosal thickening. I worried it may be a fungal thing, but I don’t know if something like that is more obvious.
April 29, 2017 at 6:05 pm
Jen, my fungal infection was in the upper sinus track, near the brain. I noticed continuing vision loss and headaches, not common for me. Initially I thought it was my MFS acting up. The cause was revealed by an MRI and I had two Neurosurgeries to clean out the fungus. Then I had to take the expensive meds I mentioned for several months to make sure the fungus was out of my system.
Regarding demyelination, here is a listing of other things that can cause it:
May 2, 2017 at 4:03 pm
Hi Jim Thanks very much for the info you have given me. I will read up on your suggestions as to where to read for me to get an under standing of everything. I am currently living in South Africa. I suppose this won’t have bearing on anything, thought I would mention it. I appreciate your effort in helping me. Thank you very much but I will still follow up on this site of yours. I will mention this to my Specialists.
May 2, 2017 at 4:35 pm
Here are some contacts in South Africa. They may be able to offer referrals to good neurologists near you:
SOUTH AFRICA (GAUTENG)
011 849 6349 home
083 450 2026 cell
Uitenhage, Eastern Cape
27 41 9661845
(KWA ZULU NATAL)
Umhlali, KwaZulu Natal
+27 32 5258272
+27 83 282 3898 cell
27 21 556 5157
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