Friday, 18 May 2018

What Does Neuropathy Mean To You?

Today's post from (see link below) is another personal story of life with neuropathy, inspired by Neuropathy Awareness Week and if there's one thing that week does, it results in accounts of real people's experiences with nerve damage appearing all over the internet - ideal for raising awareness (but still a drop in the ocean). Nevertheless, every story counts and will be read by someone who's never heard of neuropathy and in that sense these stories are very necessary. Many of you will identify with elements of this person's experiences but in the end, neuropathy remains a disease that is unique to every individual - not so much in the symptoms (they're pretty much standard), or even in the treatments and therapies, but in the way each person's life is taken over by neuropathy. You'll read things here that you've also experienced but will also have many other things in your locker that may help someone if you put your own story out there.

Peripheral Neuropathy Awareness week 
May 12, 2018 Nikki

It is peripheral neuropathy awareness week (May 6-12).

I almost missed it because I swore up and down it was in November, but someone on my Facebook Page mentioned it. So here we are!
My story

So I have had peripheral neuropathy for years. I’d say it is idiopathic because they just speculate about the cause. However, I do have fibromyalgia and that is pretty comorbid. The neuro speculated it was caused by the status migraine I had. But that is bull. Because while a status migraine is risky… it raises the risk of stroke and heart attack. It doesn’t cause permanent nerve damage. So I call it idiopathic since no one looked into it. Or treated it. Or did anything at all aside from telling me what it was. Bravo! Docs.

I had this status migraine that lasted for more than a week. I was feeling rough, man. I went to bed… and woke up with half my right hand numb. Like a thick numbness. Not a migraine aura… to deep. Starting at the pinkie and going to mid-finger… through the palm and down to the wrist. I ignored it. Because maybe from the wicked persistent migraine? And over the course of a week, it spread, just seeping across my hand. By the time it had reached the last finger… it was also starting on the left hand.

But it then stopped getting worse. So my left hand, got a bit better actually, it is just extremely sensitive on the two fingers and part of the hand it affected temperature wise. But the right hand? Well, it is completely affected and the two first fingers that got hit first actually have some motor damage and don’t work well anymore. The rest of the hand is numb, prickly, and if I use it a lot, it hurts like hell. Now the feeling is more ‘glove-like’ and less this deep numbness. I am, of course, right-handed so this was just awesome. My writing, which always has been messy, is pretty much illegible now. And I had to learn how much pressure to put on things. I would pick up a can of pop but since I can’t feel well, I’d drop it. Ironically, this all developed While on Lyrica (for fibromyalgia)… so so much for that helping.

My mom has peripheral neuropathy as well. But in her case, not idiopathic, but from chemotherapy treatments. She has it in her feet which isn’t a fun place because that is one area always having pressure on it. As a result, she cannot wear socks and has a real problem with most shoes. The prickling pain for my mom is pretty bad. For me, it was severe but has diminished over time. Maybe from the B12 I take, maybe just random. But if it is the B12, it took years to help. But I take a good bit of it now.

Here are the symptoms of peripheral neuropathy

That glove-like sensation. Or sock-like sensation.
Burning sensation or a cold, sharp pain
Tingling, prickling sensations
Sharp, electrical-like pain (common for me when I use my hand for writing and what-not)
Sensitivity to touch. Just really hyper-sensitive
Muscle weakness and loss of coordination. As well as muscle cramping.
Abnormalities in blood pressure, and/or pulse.
Unusual sweating
Hot and cold sensitivity
Like my hand, you can have motor damage along with weakness.

It can be idiopathic peripheral neuropathy, like my case. It can be from cancer treatment, like my mom. But also with diabetes, Alcoholism, B vitamin deficiencies, as well as inflection or autoimmune diseases. And, generally, it affects both sides. I have no idea what caused mine to happen, let alone why it stopped when it reached the left hand so that only the pinkie and ring finger is affected.

I, personally, take B12 and do hand exercises for the hand peripheral neuropathy. I also take tramadol which helps with my FM, and also the hand. I test temperature with my left hand because the right has no clue what temperature things are. I don’t do dishes manually… the water is too hot. I really try to do everything on the computer rather hand handwritten. At work, they liked you to print forms and do them manually… but I couldn’t do it. For one, have to Really concentrate to write in a way people can understand. And even that, is far from neat. And doing that all day? Lot of pain. So I did everything on the computer. Now that I am in a part-time role as a bank teller… I have less of a choice in this and it makes it tricky. Especially with drafts that you have to fill out for the customer. And the customer gets ticked when you ask them to fill it out themselves. So I have to do it, and damn, so hard to write clearly enough. I know they can tell I am extremely slow at it, but slow is better than illegible.

The pain really fluctuates. When I use the had a lot, obviously, but other times for no reason at all.

Related posts:

Small-fiber neuropathy and fibromyalgia

small-fiber polyneuropathy and fibromyalgia

Paresthesia and Fibromyalgia

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