• Nerve Pain: Is This a Thing?

    Posted by bailey-anne-vincent on November 9, 2020 at 1:42 pm

    I obviously was feeling sick and infected last week (still awaiting COVID results but I’d bet actual money it’s not), but I’m also worrying a little bit about my nerve pain this week.

    I know the “why” of my nerve pain- which shoots down my left left and into both feet- but that doesn’t make it go away. I am on a new medication for it, which I do believe is helping some, but I keep asking myself: “Is there every going go away?”

    I don’t know how long after surgery nerves should calm down, but I hate that mine hasn’t even slightly yet (ask me to touch my toes right now and I’d cry). So I was wondering:

    Has CF ever impacted your nerves?

    Some of my friends have had some nerve pain and damage from surgeries throughout the years, so though I know it’s not common… I was wondering if anyone (or anyone’s loved one) has had experience with this?

    And if not, has any other physicality been impacted by CF in a way that surprised you?

    paul-met-debbie replied 3 years, 5 months ago 3 Members · 2 Replies
  • 2 Replies
  • jenny-livingston

    November 10, 2020 at 1:24 pm

    I’ve sustained nerve damage as a result of sinus surgery. We’d discussed the possibility of this happening before surgery, but I was under the impression that “nerve damage” might feel like numbness or tingling. I didn’t expect pain. Sometimes, it was so severe that it severely impacted my daily functioning. It took a full 9 months to determine that it was nerve pain. I’ve been on medications for it ever since. This was over 2 years ago, and honestly, if I miss my nerve meds, the pain comes back (though not to the same extent).

    I would imagine there’s a difference between nerve irritation and nerve damage. For instance, when a nerve bundle was irritated during a PICC placement once, I experienced a ton of pain that got better almost immediately after the PICC was removed. I still felt a ZING for a year or so afterward when my arm twisted just right, but that experience was different from my sinus nerve damage.

    All this to say, I’m sorry this is happening. Nerve pain is peculiar to me — it feels different than other types of pain. I hope you can find a resolution soon!

  • paul-met-debbie

    November 11, 2020 at 2:24 pm

    Nerve damage/pain is a thing. I don’t know if CF impacted my nerves or the medication I took – but nerve damage has been done, that’s for sure. I contribute this to the medication, and especially I suspect the high doses of continual antibiotics I have had to take over many years. It’s also possibe that the ion-channel aberations in cf started to play havoc on the nerve- and muscle potentials (voltages). I have no clue to be honest. Neither did the neurologist I consulted several years ago.

    So far it shows itself in a sensation of numbness in my feet and lower part of the legs, and in the fingers, and a certain tightness of the chest and muscles. It has been confirmed by testing and labeled peripheral neuropathy (without a specific established cause), which is not saying anything really. Also in the feet there can be very sudden painful sensations that resemble an insect bite or a needle going through a toe, that last for about 10 seconds and then slowly fade out. It started around 10 years ago and got worse in the next 5, after which and until now it seems to have stabilized. Perhaps the diclofenac I take helped it stabilize.

    These 10 second shoots of pain in the feet are very suitable for examining the difference between the sheer sensation and the interpretation that the mind immediately tries to add to it. If I look at this proces with full attention, the mind will stop labeling after an initial short attempt (“pain”) and what’s left is something competely different and almost neutral. Just “some sensation of tightness” which is much more bearable. It never stops to amaze me.

    I don’t take specific medication against it (is there any?), it is not serious enough for that in my perception. I have found out however that diclofenac helps to lessen the sensation, so mostly I take that at night to loosen up the chest-tightness a bit and keep my feet quiet. If it were to impede on my sleep, I would consider trying special medication. I have heard that Tramadol might work on nerve pain, but of course this has other side effects as it represses the general nerve system considerably.

    It made my walking a bit less stable and slowed me down a little, but then my lungs are quite capable of slowing me down as well on their own. And in piano playing of course it doesn’t help if the touch of the fingers on the keys is less sensitive. But I manage by increasing the feedback that my ears give me and by playing a bit slower with more initial muscle control. And it provides a good excuse for strange things that happen in my playing sometimes. In Mozart there is no hiding from it, but in Schoenberg it simply blends in and becomes part of the interpretation 🙂 Music is always benevolent to me.

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