I don’t imagine many people read my blog, but since these go to Facebook I figure some people will see this at least… and I know a lot of you have been wondering for years so I figure I’ll just explain it once here so you don’t have to ask and I don’t have to explain it for the umpteen-millionth time and have you staring at me like you didn’t get it anyway.
What’s wrong with me? Why do you see me walking one day and in a wheelchair the next? Why am I always on about my arm not working when I’m clearly using it while you’re talking to me?
Odd as it may seem almost no one I know asks me that. I know everyone wants to know… the kids ask (nearly every time I spend time with them) but the adults almost never do. When someone does ask I think the answer is ignored more often than not. It gets frustrating for me and on bad days I’m likely as not to just give an exasperated sigh and spout off a bunch of long medical terms that you won’t understand, knowing you’ll respond by going "oh" and walking away.
So here it is, in more-or-less plain English. I’ll bullet-point it so it’s easier to read.
What’s been wrong all along…
- My immune system is eating my nerves – not my brain or my spinal cord but the little nerves that tell the muscles in my limbs and elsewhere to move.
- My nerves keep trying to repair themselves by rebuilding the lining, only to have my immune system attack again. This means my nerves look like someone chewed them up and spit them out. They are a mess of scar tissue and rather resemble what happens when a dog tries to devour an electric cord.
- As a result, the signals that my nerves try to carry to my muscles get messed up. Think of plugging in that electric cord the dog just chewed up – the electricity might arc outward and spark a fire, it might not get to the device it’s supposed to feed at all, or the signal might be sporadic. Consequently commands from my brain telling my muscles to move may get lost along the way (if I try to move my foot chances are my leg will want to move first), cause spasms, and arrive very late (compared to normal ppl).
- Since nerves carry pain signals back, as well as sending commands out, this means I have constant pain caused by this damage. I also have constant pain caused by the cramping that’s a result of lost messages. The less I try to move though, the less cramping I’ll have.
- If I use my nerves too much the damage gets worse. This is why my hands started to atrophy in college (when I was using my wheelchair 90% of the time and playing w/c basketball). Carefully avoiding overusing any nerves is why I, more or less, have no strength issues right now.
- After years of taking nothing but Ibuprofen, and after many more years of experimenting with every drug on the market I found that a combination of a seizure med (which helps to stem the constant overflow of pain signals coming in) and a muscle relaxant (to help keep my muscles from reacting to the signals that weren’t intended for them e.g. my leg cramping when I’m trying to use my foot) were able to help me get the pain in control enough to function on a normal basis.
What happened to my right arm:
- A few years back the latest round of damage/repair to my nerves caused scar tissue to build up too much in a little tunnel that the nerve in my arm runs through near my elbow (that’s the guess for the cause anyway) and I woke up one morning, in excruciating pain, unable to use my right arm.
- Because the amount of damage my nerves already have, doctors are unwilling to do the simple surgical procedure that would open up that passage and unblock my nerve (is similar to the procedure done for carpal tunnel syndrome). Since they won’t do that, the only solution is to take massive doses of anti-inflammatory drugs (ibuprofen) — the eating/repairing of my nerves causes constant inflammation around the nerves themselves — which shrinks the nerve just enough that it’s not being pinched and I get function of my arm back.
- If I use my arm at all the muscle starts to tighten around the tunnel and causes the nerve to be pinched again. I can handle about 15 minutes light use of my forearm muscle before this happens and my arm stops functioning. Once this happens, I have a removable full-arm cast that I put my arm in overnight to force the muscle to relax completely — sometimes it takes more than one night of this before function returns.
How all this affects my day-to-day life:
- When I remember my meds on a regular basis and I’m careful not to overuse any nerves I can more or less depend on my legs and arms functioning for daily activities. On good days I can walk around the house almost normally, write about a paragraph, and fix a few meals for myself without any real problems. In the past year or two I’d say I’ve had good days about 2/3 of the time.
- On bad days I may have problems even standing, I may not be able to hold a pencil – let alone write with it, I may not be able to lift a pan. I almost never leave my house on these days. Most people probably don’t even know that I have them. I’m often in so much pain I can barely put a sentence together. These can happen when I’ve missed a dose of my meds or just out of the blue for no reason I can find.
- Thankfully even on bad days I can usually type well. I cannot type on a keyboard that has ‘soft’ keys, but as long as the keys have enough spring to hold my fingers up when I’m not pressing down, and to push my finger back up after I’m done pressing, I do not have trouble. The exception to this is when that nerve in my arm is trapped – then I can only type left-handed, and the effort of moving around the keyboard with my left hand tires it out very quickly.
- In an effort to not overuse my nerves I opt on the side of caution as often as possible. If there’s even a chance I may have to walk far or stand for very long I take my wheelchair. If I know I’ll have to be on my legs much I’ll wear my leg braces. If I know I’ll be sitting for a long time I take my wheelchair (my chair is custom-fit to keep my legs and feet at angles that lessen the spasming and pain).
- Because my arm is messed up now I cannot use a cane as much as I used to, and I almost never can use my crutches. I have a left-handed cane (I have to use canes with special handles or my wrists get too stressed) but have trouble using it much because I’m not coordinated with my left hand lol.
- Between the meds I take and the work my body is doing constantly attacking and/or repairing my nerves I require a lot of sleep. I probably average 10 hours/night but when I’ve overused my nerves sometimes I’ll sleep 2 days straight. This isn’t really predictable, though I know if I overdue it I’ll have to sleep a lot the next day or two, sometimes I’ll sleep for 16 hours with no clue why (I just wasn’t capable of waking myself up).
- Sometimes I will "crash" in the middle of doing something. Usually this happens if I’ve ‘overdone it’ but sometimes it’s completely random. I have fallen asleep at work, in the shower, at friends’ houses, at dinner, etc. It doesn’t happen very often, and is usually accompanied by a slight fever. I can recognize it’s coming and have just enough time to stop what I’m doing and go lay down (or pull over to the side of the road if I’m driving). Thankfully I usually can wake myself up after 15 minutes or so when this happens, but it’s very awkward if anyone else is around.
- I know my chair is an inconvenience for other people. Most people I know do not have wheelchair accessible houses, and riding with others is a real hassle if I have to take a chair along. For this reason I generally avoid doing anything unless I know I’m having a really good day and can afford to walk and/or use my cane, I know my pain levels are low enough that I can be sociable, and I’m well-rested enough that I probably won’t "crash".
So there’s way more than you ever really wanted to know. And now you see why I always try to give a short answer and you’re left wondering what’s really wrong anyway.
4 Responses to What the heck is wrong with you anyway?
There’s been some debate (by the dozens of neurologists I’ve seen) as to the precise definition of the disorder – mostly because it doesn’t follow the right pattern for any of the standard neurological disorders. It’s most likely a mixture of two different ones, or a cross-over between two types. Most agree it has to be genetic but since there’s no family history it’s most likely a mutation… here are some of the names lol
Hereditary Peripheral Neuropathy – no real debate on this one, very generic term
Charcot-Marie Tooth Disease – this is the most common HPN, but some of my pathology doesn’t match up, and no positives on the 9 or so genetic tests they’ve pinned down for var. forms of this disease
Chronic Inflammatory Demyelinating Polyneuropathy – my symptoms mostly match, except this should be an acute non-genetic problem and should respond to treatment – mine doesn’t
Hereditary Spastic Paraperesis w/Peripheral Neuropathy – IMO the most accurate diag. to date – my current neurologist does not agree though – he thinks my spasticity may more likely be caused by a mild undiagnosed from of Cerebral Palsy (I was born with the cord wrapped around my neck so this isn’t entirely implausible) and favors an undocumented form of CMT for the peripheral neuropathy
Oh, and the arm thing is called PINS…
Posterior Interosseous Nerve (Compression) Syndrome
Wow! Thank you for sharing your touching story. I know that took a lot out of you to bare your soul to the world like you did, but I know it probably changes lives. I took care of a Lady once with MS she had loss the use of almost her entire body, but she was amazing. Out of all my clients she had the best reason to complain, but never did, I loved working for her. Every day we started our day with me reading the Bible to her, because she couldn’t even hold the Bible, and she sand to me while I did house work. We prayed over our meals that I fed to her, and after her nap she had me dress her in her best gown and the one thing I would see her struggle to do, burt she did it some how shemade her arms work to brush her hair and put her make up on for her husband before he came home from work. I could tell she stuggled to do it, but in her mind it was her wifely duty, and she did. She was such a blessing! Reading your post on Facebook has reminded me of her. I can’t wait to meet you! God Bless!
Thank you for being open.
Great blog Tammy, I’m glad I spotted this on your facebook page. I will be reading from now on.
You have strong faith & great courage. Not many people have to face such struggles on a daily basis & I commend you on having such a caring spirit & living your life to your fullest.