Radiation induced peripheral neuropathy to arm and hand

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Fitz33
Fitz33 Member Posts: 243
edited March 2020 in Radiation Therapy - Before, During, and After

I was just diagnosed with this 9 years after rads. Is anyone else being treated for this? Most seem to have chemo related neuropathy and the doctor told me radiation caused is hardly ever seen and I can't find any studies being done, let alone past studies. The only treatment right now is physical and occupational therapy. Does anyone have any suggestions? Is this progressive?

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited October 2019

    How are you sure it's neuropathy? Could it possibly be a different source, like a pinched nerve?

    I don't know anythign about this but I have a friend who had a problem in her brachial plexus that presented in her arm and hand... though rads can damage that area too...

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  • marijen
    marijen Member Posts: 3,731
    edited October 2019

    Hi, yes, I was dx’d with same in July, three years out from radiation. Radiation can cause neuroathy, I also have nausea with it. Please read this article on low dose naltrexone.
    https://selfhacked.com/blog/top-22-scientific-heal...


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  • Fitz33
    Fitz33 Member Posts: 243
    edited October 2019

    I was diagnosed after having nerve conduction tests called EMG/NCS. Two years ago I was diagnosed with pulmonary fibrosis due to radiation but that is under control and is being treated by a pulmonary doctor so I’m in good shape with medications. I just wish there would be something for this latest diagnosis. I would not have turned down radiation if I had known of these possibilities because after all it did save my life. It’s just such a shock to have this happen.

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  • SimoneRC
    SimoneRC Member Posts: 419
    edited October 2019

    My sister developed radiation induced plexopathy 5 years after her treatment for colorectal cancer. Turns out we have a pathogenic mutation of the ATM gene which makes us more susceptible. Have you had genetic testing? Sorry that happened to you. It does stink! Hers is lower extremities so not the exact same. She has small fiber and motor neuropathy. Hopefully you shall fare better! Sorry you are dealing with this!



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  • Fitz33
    Fitz33 Member Posts: 243
    edited October 2019

    I didn’t have genetic testing and I’m sorry to hear that it can run in families. I can’t even write my name or numbers and may have to learn to write with my non-dominate hand. Hopefully there will someday be more of an improvement for your sister, me and others this has happened to.

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  • SimoneRC
    SimoneRC Member Posts: 419
    edited October 2019

    Sending strong thoughts Fitz33!



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  • miss302
    miss302 Member Posts: 34
    edited March 2020

    hi

    I developed RIBP 12 years out from diagnosis. But I now know I have had it longer. It really sucks. I am luckier then fits33 as it is in my non dominant hand. It still makes life more difficult at times not having 2 fully functioning hands.

    I have a collagen disorder called hypermobile Ehlers Danlos that may be increasing my RIBP. Plus I have mold illness that can also affect nerves. Triple whammy! Too bad I don't win any prizes!


    J

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  • Fitz33
    Fitz33 Member Posts: 243
    edited March 2020

    miss302, I haven’t updated in awhile and so much has changed. It’s been about a year now or maybe a little longer since my problems started. It took many months before I was diagnosed with RIBP but I’m now doing well. It’s unbelievable to me but I have my arm and hand usage back. My hand will always be a bit of a problem but I can live with it. I take gabapentin and that has helped a lot with the neuropathy. You have to take it very slow in figuring out how much you can take. I’ve gone to physical therapy 3 times a week for almost a year, weekly for pt and weekly that didn’t work for once a week for OT for my hand was increased to twice a week and that really helped enormously. I did all of the home exercisers, ought from Amazon several of the tools and it all helped. This all started with my arm completely at my side and my hand also not being able to move. The key has been the medical care and pt and OT. The gabapentin really pushed it along and the shooting pains are not there very much now. I’ll always have neuropathy and I exercise my hand every day because I live in fear it will come back. My OT also told me to do that. Please let me know if there is anything I can answer for you. If you don’t have insurance coverage perhaps I can tell you some of the exercises I had to do. I would be only too happy to help anyone who has questions on this horrible disease which is rare.

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