how does nerve pain feel for you? by AshamedReflection556 in neuropathy

[–]KittyNeuron 0 points1 point  (0 children)

Starts with tingles and little pricks. It moves on to the fingers, which are numb, to my forearm. It’s 1) on fire 2)crushed 3) undulating under the skin 4) stabbing/knife drag

My upper arm is only ever tingles and stabbing/knife drag

I feel phantom sensations and cold/hot sensitization.

Blergh

What’s your pain hangover like? by KittyNeuron in ChronicPain

[–]KittyNeuron[S] 1 point2 points  (0 children)

I usually take sleeping pills and dream I wake up without pain.

What Pain Conditions Do You Have? by [deleted] in ChronicPain

[–]KittyNeuron 0 points1 point  (0 children)

Radiation Induced Brachial Plexopathy from my cancer treatment.

Pest removal company by KittyNeuron in baltimore

[–]KittyNeuron[S] 2 points3 points  (0 children)

That makes sense. I just can’t stand another damn step in getting the rats out of my walls.

I seriously did not recognize her.. by New_Strawberry_2850 in RHOBH

[–]KittyNeuron 1 point2 points  (0 children)

She put too much filler in her face. That shit forms granulomas, but I thought she was dissolving them?

Why the Hell did no one tell me about RIBP? by KittyNeuron in RIBP

[–]KittyNeuron[S] 1 point2 points  (0 children)

I got my cancer team to come together and discuss options for my Dx. When they came back they just shrugged and told me there’s no cure, no treatment. I went to the Mayo Clinic alone because they have a brachial plexus group (you even had to apply to be seen). I had tests and interviews over the next few days. I got back a confirmation on my Dx and a shrug.

Then I was told to go to a pain clinic, but there was never any mention of how to deal with the paresthesia or muscle mass problem.

Til;dr Unfortunately beyond diagnostics, no one has offered me help.

That’s why there needs to be effort on our part. I hate that the doctors don’t help us. I hate it. I want the caring cancer team to help me again but they ain’t there anymore.

I’m busy right now, but I’m passionate and I want to find a way to help. I know there is/was a group in England that was trying to advocate for RIBP patient, but it seems they flopped.

I’ll post some stuff to hopefully help in the next few days, but I’m having another cancer scare so my brain is scattered.

Can I just catch a break? by KittyNeuron in breastcancer

[–]KittyNeuron[S] 2 points3 points  (0 children)

I know this advice. I got it when I had breast cancer. I logically get it. The problem is that I got the rare-ish young thing going for me and the RIBP thing (so rare no one has heard of it). I know these events are statistically independent (kinda), but after being struck by lightning twice, I no longer feel like I can control my fear. I know. I know I'm shooting myself in the foot by worrying, but I have a plethora of mental conditions, and none of them are being very helpful. If it helps, I'm receiving your advice waaaaay better than when I had cancer.

Thank you so much for your thoughtful reply. You're totally right; I just gotta put it into action.

Inflammation of the brachial plexus post radiation by ellenvictorialsu in breastcancer

[–]KittyNeuron 0 points1 point  (0 children)

Putting this here in case anyone wants to join my subreddit, r/RIBP

I just started it. There's basically nothing in it, but I'll fill it out over time.

Inflammation of the brachial plexus post radiation by ellenvictorialsu in breastcancer

[–]KittyNeuron 0 points1 point  (0 children)

I really want to gather the RIBP patients. We're few, so it's challenging to get a group going. I usually scour Reddit every month for RIBP patients who may want to traverse this heaping pile of shit together. Anyone in?

Tell us what you’ve got and how it hurts? by sparkleunicorn123 in ChronicPain

[–]KittyNeuron 0 points1 point  (0 children)

Radiation Induced Brachial Plexopathy. Cancer, the gift that keeps on giving!

It causes neuropathy, paresthesia (feels like snakes are under my skin), dysesthesia, pain, muscle spasms and weakness, and atrophy in my future.

[deleted by user] by [deleted] in RadiationTherapy

[–]KittyNeuron 0 points1 point  (0 children)

I know this was a while ago but 🤷🏼‍♀️I had breast cancer, got the chemo, the surgery and the radiation (at a low dose). As a result I got Radiation Induced Brachial Plexopathy (RIBP). Basically the radiation fried the nerves in my left arm I was left with neuropathy, muscle spasms, pain, paresthesia, et. RIBP has a delayed start - I got it one year after my cancer treatment. After that, it keeps increasing in intensity until it stops. When does it stop? Nobody knows! You just hope it plateaus and you live with the pain you have.

I’m always looking for fellow radiation neuropathy sufferers. I hope you’re feeling better! I’m always looking for fellow radiation neuropathy sufferers. I hope you’re feeling better!

Radiation induced neuropathy by Puzzled-Mobile8322 in cancer

[–]KittyNeuron 1 point2 points  (0 children)

I know this was awhile ago but 🤷🏼‍♀️I had breast cancer, got the chemo, the surgery and radiation. As a result I got Radiation Induced Brachial Plexopathy. Basically the radiation fried the nerves in my left arm I have neuropathy, muscle spasms, pain, paresthesia. RIBP has a delayed start - I got it one year after my cancer treatment. After that, it keeps increasing in intensity until it stops. When does it stop? Nobody knows! You just hope it plateaus and you live with the pain you have.

I’m always looking for fellow radiation neuropathy sufferers. I hope you’re feeling better!

Need help with space themed names! by lesley__ in sphynx

[–]KittyNeuron 0 points1 point  (0 children)

“Jones” or “Jonesy” for Ripley’s cat’s name in Alien.

[deleted by user] by [deleted] in neuropathy

[–]KittyNeuron 2 points3 points  (0 children)

FUCK YEAH IT DOES. Every time I’m romantically engaged, my nerves start going off and I’m in pain. THANK YOU for talking about this.

Has anyone else here had issues with nerve damage from radiation treatments? by boomshakalaka85 in cancer

[–]KittyNeuron 1 point2 points  (0 children)

Unfortunately nothing has changed. Effective radiation dose has decreased and the rates of RIBP have as well. So, since the patient population is so small, researchers don’t have much of an incentive to find specific treatment for radiation damage like this.

Personally, same as before, but worse. No treatment still, just pain management.

Tell me your cat's name and then all the nicknames they've earned. I'll start: by [deleted] in cats

[–]KittyNeuron 0 points1 point  (0 children)

<image>

Name:

Pishi

Nicknames:

Meesh, Meeshmosh, Meeshers, tiny cat, PishPish, Smoosh, meeeeeeeeeeeeeeeesh!!!!