Reply To: Your top signs that your CIDP is coming back/getting worse

Hello and thanks for everyone sharing information about their experiences with CIDP. This is something I have not done until now. I’ve not met anyone with a diagnosis of CIDP either, but then, I don’t get out much anymore. I am still walking, albeit slowly and unsteadily – this is especially true if I sit just a little bit too long.
My diagnosis of CIDP was back in October 2004. I don’t recall when symptoms started, my CIDP experience has been one of mostly very slow progression. I used to lift weights and had a surplus of strength – so this helped delay my awareness after I stopped lifting regularly (around the same time, but due to change in jobs and other things). One day in 2001 I was out mowing the yard and ran over a ground hornets nest. I was attacked and stung and tried to run. I fell, got up and fell again. Fortunately, I was on a 40% incline hill in the front yard and I thru myself downhill the third time I got up to run. I rolled to the bottom and laid still – about 80 feet away – the attack was finally averted. This was how I discovered that I could no longer run. This was not enough information for my doctor to act! The next big thing for me was noticing that I was helping myself stand from a seated position using my arms. There was no numbness in my legs, only loss of strength. My brother (3 years younger than I) was beginning to show signs of a foot-drop problem. I panicked and had my PCP send me to a neurologist. The neurologist was amazed at how strong I was and even though I told him repeatedly every 90 days for one year – I was still stronger than he was, so there could not be a problem. Infuriated by this, I discussed this with a new PCP. He could not change my neurologist directly. He filed this away and waited for the right (indirect) opportunity. I began to show signs of atrial fibrillation (heart missing beats) and had nerve pain in my diaphragm area, just above the rib cage under the sternum. The nerve pain was a tingling, sharp pain that was there all the time; but got worse-better-worse again over time and felt like it was circular in shape. This triggered concern as it could be heart related. I was put into a hospital to have tests on my heart and while I was there, a new neurologist wanted to do an interview and examination. (This was the indirect move by my PCP to call in a near-the-hospital neurologist that was available to come right away (the other neuro was not). The heart tests returned normal and the circular nerve issue passed to the new neurologist – who set me up appointments for spinal tap, blood work, EMG, etc. This was September 2004. All tests in the hospital were suggesting CIDP possibly and surgery was done to remove my sural nerve on my right leg. The EMG was helpful in understanding that my nerve issues were everywhere – on my head and face, shoulders, arms, chest, legs and feet. My neuro suggested that what he was seeing was the my body was fighting the nerve damage and the nerve damage was winning slowly. He diagnosed me as having CIDP in October 2004 and I began a high dose of prednisone and azathioprine. I am still taking this today as we issue in 2018 tomorrow. I can feel CIDP slowly winning as I do more things over time and realize that I can’t anymore. They are so slow for me that I cannot determine it is happening until I learn I can’t the next time I try something I don’t do frequently – example: prolonged sitting in a car or using muscles too long for an hour or more. I have muscle cramps – I’ve tried calcium & magnesium, vitamin E and B-100 without help. I have also tried Baclofin (spelling), muscle relaxers, heating pads, special socks – nothing helps. I have noticed that when I exercise, do yard work, do regular work, or walk (for exercise) – I have muscle cramps every single night. I get up after three attempts to get to sleep fail. These are cramps from the groin-to-knee, calves on both legs or just one, feet, etc. I also have cramps in my hands where my fingers distort into odd positions and I have to use the other hand to straighten them (this happens when I spend a bit too long handwriting). When I attempt to flex a muscle, it cramps – arms or legs. Doctors don’t know what is causing this – and my new neuro says it is CIDP and you are over 60… nice.
The past 2 months, I’ve changed my hours working (more hours, same job) and I have more cramps during the day and at night. I also added taking my son to work occasionally – and end up in the car over an hour each time. It becomes hard to stay in the car due to leg pain, cramps and joint pain. So – my hope was to change jobs, but I now I find more limitations than potential jobs.

Oops! I failed to mention stamina earlier – yes, that is another one to watch. Stamina diminishing is also a slow moving issue. Push yourself to see if you still can do this or that – something you don’t do often, but also something that doesn’t require a regimen of exercise to maintain. Time yourself and gauge how hard it is to accomplish.

How long to recover after expending your daily allocation of stamina? That is another point to learn about. This one is tricky for me. Some days – especially hot days in the summer – it is easy to get into trouble. I can’t even walk at a descent pace and end up sitting in the shade for 20 to 30 minutes and then heading for bed. After 4 to 8 hours of sleep, I can return to normal walk in the house, but still feel tired. This is what happens when I push too hard doing physical tasks anytime – hot is worse than cooler weather. However, if you push in cooler weather – that stamina fall off is still there and if I keep pushing – I am headed for bed (totally exhausted feeling).

Any new sensations? How about an area that was tingling and numb, but now has the added sensation of cool to cold running water going down my leg? Yep, another sign the disease is active (for me) and I’m slowly losing the battle.

Genetically speaking, I’ve had tests that have determined I have both receptors for tolerating Thioprine – in my case, Azathioprine used for my treatment along with Prednisone (low dose). I’ve been taking this over 14 years now. I consider myself lucky – only a small percentage of people have both receptors working to tolerate this. (At least, this is – like most things – gauged with what is known at this time).

Well, I need to break off here and hit the bed one more time again. Perhaps I’ll get 1 to 2 more hours of sleep. Next time – I stay up. It is like baseball – 3 strikes and out.

Best wishes to everyone, Happy New Year 2018 and God bless!

So – now I change up what I do, how long I do it – just looking for comparative views and a noticeable failure that continues. One more for the log book.

I also have issues with balance – sensing things around my legs and feet – clumsy walking, limping gait walking, my hearing has worsened significantly (I need hearing aids for both ears – volume and frequency issues. Also the balance issues started at the same time. I went for hearing test and then asked doctor for assistance with balance issues – they teach you how to compensate).