Since Dec 2011, I've had some difficulty breathing. Little did I know how the body operates. The CIDP has impacted my abdominal muscles. Those operate the diaphragm as I understand it. The diaphragm works sort of spotty. Most of my breathing is just from the chest and I get plenty of air sitting around. Stairs, a long walk, (like the length of a city block, the most I can still do before sitting) and I notice the 02 problem. If I yawn, the diaphram fires off and I get a deep breath. If I put a hand over my stomach and concentrate it will usually fire off too. It seems like the voluntary response isn't working too well.
When this first started I was pretty panicked and stressed about it. Now I know what is happening and just need to sit and rest and it will all work out. I'll see my nero this week and will talk to him about it. Plus checking to see if I can get a venilator. I'd feel much better about the condition if I had that on hand as a safety net and anti anxiety agent. Ha.
Anyway, just another petty problem of my CIDP. I'll keep the breathing problem if I could get my sense of balance back to swing a golf club. LOL, you should see me pick up a golf club and try to swing it now. Only random chance of hitting the ball but a big chance of falling down. Reminds me of a three stooges skit. Ha.
Hi Joe, I read your other post about your wife also being ill and your attitude is very inspiring. I know this disease is hard and depressing. I have Crohns disease as well as CIDP and when I told my gastro that I had a hard time catching my breath, he said he never heard any Crohns patient complain of that before. Then when the numbness, burning pain and falling down like a clown came along, my neuro thought it could be MS. There is something called an MS hug that makes it hard to catch your breath. Well, obviously it wasn’t that either. My current neuro has only CIDP patients & she still said no one has complained of breathing issues except for me. You are the only one on the boards to mention it also but I haven’t specifically asked. I was dx in December and just finished my 5 day intensive treatment. By the end of the second treatment, I felt about 70 percent of my burning and numbness dissipate. Amazing. Felt very tired but good for the 4 days but on day five started w slight headache that by Saturday morning had me almost screaming; nausea & vomitting kept the headache company so it wouldn’t be lonely. May not happen to you. They give you Benedryl & Tylenol preventitively, but I would take it every 4 hours after the procedure from now on. I wish you good luck. I think that after your first week of treatments, you will get much of your balance back & will be able to play golf. As watching TV was my favorite sport before CIDP, I don’t have to worry too much. Keep your good attitude as much as you can, but don’t beat yourself up when you inevitably have bad days. Best, Jo
hello Joe, Just recently my Plumb (lung) doctor after finding out I had this sensory Polyneropathy made my doctor have a "awha" moment. See back when I had a small heart attack and they install a stint in 08. The doctors fig out I had a breathing problem. Like you Joe I notice I would have out of breath doing things. But I never memtion anything to anyone. Oh I'm on oxygen 7/24 and do use a portable one when I go out....gee it's what it is if you want to live according to my lung doctor he told me. I do want to live so I use the oxygen.
Well they tested me said I had COPD, but wait a min. Joe I never smoke, truely. They say you can have COPD without smoking I'm one of those people. My doctors don't understand call it enviormental reasons, or too many times I had colds etc. Or the type of work I did/ But still never knew why. they also never told me...not until a few weeks ago did my Plumb (lung) doctor do the AWHA thing.
Well.....he thinks and drew on my body how the nerves go and how they could cause my breathing problems, etc. even my chest pains I experiencing. Which has all my doctors thinking I am a kookie or something always telling them I'm having my chest pains! So they want to keep me on med's for being nervus....which is silly I think....I don't lie and I feel like I am not as nervus....they just couldn't fig out why....I have had 3 angograms and I'm normal. So the AWHA might be the answer that you came up with with your doctors. What does this have to do with breathing, everything. All the parts to our body are hook together and with the Poly thing it can effect all parts of our body is how it was explain to me. OK whatever. Just don't ever let them tell you it's in your head.....always be proactive with your health.
I do hope you get some help with the golf clubs like a cart or another person to help you.....becareful breathing is important of course, but it can cause more problems with other functions like the heart.
I know this all too well.
I understand the falling down......I am not suppose to fall down, right hmmm...ok Neuro I got me a scooter to help me outside getting around so I don't fall down as much.
But I have been doing this falling down for years and I always thought it was weak ankles....and never said anything about that condition either.
I hope you don't do what I have next time.....please take care of yourself....
I hope you do keep swinging......
and maybe find a way of sitting and hitting? I don't golf so I don't know how to help you....just wondering there's got to be a way for you.
Both myself and my friend have breathing problems on exertion and believe it is related to CIDP. Much worse when it is hot and humid. There have been many times that I have felt as though I was going to collapse but managed to get to a chair before I did. Just another crappy symptom of CIDP
Waiting on results from the sleep study. With all the wires hooked up and sleeping in a strange bed it's a wonder I got to sleep at all.
the night before last as I sat up in bed to roll over (I can't sleep on my back because of the breathing) I had my first pain from CIDP. The abdominal group that goes across the top of the V at the rib cage fired off. I had moderate pain but visually I saw, in my minds eye, a fine criss-crossed mesh of orange lightning about 1" wide and 7" long. I corrected my posture and sat up straight and the pain and visual went away. Last night the same thing happened. The pain was minor and this time the visual was 1" wide and only 3" long to the left of the same area starting at the edge of the right rib at the V. Funny the images the mind can make. It looked like what it felt like. Odd wasn't it? About the time I woke up this morning, I rolled over a bit on my back to pet my cat. I noticed then that I was breathing pretty good lying down. My breathing has been fine ever since. Not 100% like it used to be but I'd say 96% normal. I can lie on my back and breathe. One thing I noticed is that when lying on my back and breathing, my stomach goes in and out as I breath normally. For the past several weeks when I laid on my back and breathed, the stomach area didn't move and the area below my ribs was depressed in.
Hope all is going well with you guys. Let me know if I can help!
I've an appointment with my current Neuro on Monday. My breathing problem comes and goes right now. It seems when I lay down, even on my side, I'm not resting well. The past two nights I've only been sleeping 30-50 minutes at a time. Then roll over to the other side and do it again. It's not that's I'm not sleepy, it's that I can't stay asleep. I was so fatigued at work today I had to take a 15 min so-so nap in the morning and at lunch did an hour of so what sleep. I don't know what's up with the sleep business. I've asked my GP for a referral to the Vanderbilt Medical Center Neuro group as I don't feel my current neuro is as concerned as I am about my comprised breathing or simply taking care of me.