1. < Neuropathy

Now what! Neuropathy in feet and ankles.. Numbness in hands and arms

Posted by hotfooted @hotfooted, Oct 4, 2020

I don't understand why all 4 limbs are getting neuropathy.. Is this still peripheral neuropathy?

Interested in more discussions like this? Go to the Neuropathy Support Group.

lorirenee1 | @lorirenee1 | Oct 21, 2020
In reply to @lorettat "I am sorry to hear that you feel so bad that you would consider ending your..." + (show)
@lorettat

I am sorry to hear that you feel so bad that you would consider ending your life that is so terribly sad to me. Physical activity just makes the pain worse for me and I can't breath and my heart rate goes off the chart. The worse is at night when I try to go to sleep. But I can't get anyone to take me seriously about it they want to give me a pill for nerve pain that doesn't work and I'm tired of it. Some of us don't like being a gynny pig for they're placebo's and cocktails just to appeise they're hunger to prove an addict is just that an addict and will do or say anything for drugs. I wouldn't wish my condition on anyone.

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@lorettat Thank you for your kindness and empathy. You too, are in terrible pain. I really don't know how we learn to handle this. I try my best, but get very overwhelmed. You obviously don't like the doctors very much. Neither do I. I have no answers, only empathy. Lori Renee

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sunnyflower | @sunnyflower | Oct 21, 2020
In reply to @jimhd "@patrick17 I suppose you've read my experience with scs. I have a Burst DR spinal cord..." + (show)
@jimhd

@patrick17

I suppose you've read my experience with scs. I have a Burst DR spinal cord stimulator, implanted in June of 2017. Surgery was no big deal. It was just frustrating that surgery was at the beginning of the very busiest time of year for yard work. The lawns were up to my knees when I was finally able to mow.

The stimulator has been doing nothing to treat my pain this past year. I found out that I had severe spinal stenosis, and had surgery for that 3 weeks ago. I was hoping that it would reduce the pain, having the nerves released from the grip of stenosis, but no such luck. I didn't have any adjustments to the scs since February, because I was waiting to see what effect stenosis surgery would have. The Abbott rep adjusted it Thursday, and the pain just got worse, so I've turned the setting down 3 notches in the past few days, so now the pain is pretty much what it's been all year. It's 6-7 during the day, and 8 or 9 when I lie down.

My neurologist agreed with me that a pain pump implant could be a reasonable next step. But then, the next day he learned that all of the doctors in my area who manage the medication in the pump have stopped doing it, and I would have to drive 160 miles to the nearest pain pump management doctor.

A dorsal root ganglion stimulator implant was in the discussion, but the surgeon who did my back surgery told me that it isn't designed for diffuse pain like mine. So, everything is up in the air now, including convincing my pcp to increase the dose of my morphine prescription back to what it was a while ago.

Isn't neuropathy fun?!! It's certainly a very unpredictable disease.

I've never heard of the Personage Turner Syndrome. I grew up in the parsonage and raised my kids in one. Probably not related to the syndrome. I deactivated my Facebook account more than a year ago and for the most part haven't missed it. I do miss the connection with my extended family and a few friends, and a couple of FB groups. The stress of the negativity on FB was having a bad effect on my mental health struggles, so I'm better off without it.

Before I wander any further astray, I'll just say goodnight.

Jim

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Jim, your journey is almost too much to take in! I can't wrap my mind around your suffering and all the logistics to try to manage it!!

I too have "severe" canal stenosis and have consulted with 2 neurosurgeons. I've lost almost all feeling in the area that would come into contact with a saddle were one to be riding a horse. I have textbook Sxs of equina cauda syndrome.

I 've lost some bladder and bowel functions and testing shows neuro etiology. I can't feel my thighs a lot and when I do, they feel extremely fatigued and won't take me where I want to go very easily.

The surgeons say they can see a tiny bit of fluid around my spinal cord nerves but agree with the radiologist's reading of "severe" stenosis. They tell me I'm very high risk for surgery bc of my poor health. So I don't know what will happen. I have an appointment on 10/29.

Then in November I have cervical and occipital injections on the 11th. Had a lumbar in September.

More stuff, different day. Being ill is a career. It consumes most of my time. Just counting out the handfuls of meds every day throughout the day and night is overwhelming.

No complaints, just info.

I 'm not on Facebook much anymore for the same reasons but stay on to keep in touch with friends and family.

Hope some blessings come your way today and that you get some relief!

Warmest wishes, Sunnyflower
@patrick17

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lorettat | @lorettat | Oct 21, 2020

Wow I feel like an ass! Compared to you I am in great shape and all I have done is bitch and gripe. I am sorry for my lack of empathy and common sense ,as well as, being aware of the other people that are going through hell them selves and I do apologize. Ease everyone forgive me I am truly sorry. And I am so sorry that you are going through so much pain and suffering. I hope and pray that something good will happen for you. Now I understand your earlier comments.

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lorettat | @lorettat | Oct 21, 2020
In reply to @lorirenee1 "@lorettat Thank you for your kindness and empathy. You too, are in terrible pain. I really..." + (show)
@lorirenee1

@lorettat Thank you for your kindness and empathy. You too, are in terrible pain. I really don't know how we learn to handle this. I try my best, but get very overwhelmed. You obviously don't like the doctors very much. Neither do I. I have no answers, only empathy. Lori Renee

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Since I don't have insurance and wasn't born with a silver spoon in my mouth; and since I am a drug addict I am not high on their priority list and they do not take me seriously. They act like I'm stupid and am making up how bad this shit really hurts and bothers me. They are suppose to be here to help us, listen to us, and give us their best educated professional insight on what they believe or what test say is wrong with us and figure out what we can do about it. I know I'm not the first to complain about this delima of being in so much pain and discomfort. So why do they look at me a s if I have a elbow growing out of my ass when I say something about needing some kind of pain management and not just a neurotion. I am just really pissed at the way I have been treated by a few not all but the few make it really hard on the others, and myself.

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lorettat | @lorettat | Oct 24, 2020

Does anyone have severe restless body syndrome, or is that a real condition? It's like RLS but it goes through out my entire body.

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Mentor
John, Volunteer Mentor | @johnbishop | Oct 24, 2020
In reply to @lorettat "Does anyone have severe restless body syndrome, or is that a real condition? It's like RLS..." + (show)
@lorettat

Does anyone have severe restless body syndrome, or is that a real condition? It's like RLS but it goes through out my entire body.

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@lorettat - There is another discussion that you may find helpful. I believe it may be what you are referring to for restless body syndrome.

Periodic Limb Movement Disorder: https://connect.mayoclinic.org/discussion/periodic-limb-movement-disorder/

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sunnyflower | @sunnyflower | Oct 24, 2020
In reply to @jimhd "@johnjames I looked at the suicide discussion and saw your message. Are you doing ok? Agent..." + (show)
@jimhd

@johnjames

I looked at the suicide discussion and saw your message. Are you doing ok? Agent Orange is surely playing havoc with your health.

I need to get offline, so I won't start telling you about where my mind has been lately. Too much going on. When I get overwhelmed, I get back into the suicide mode. I'm not suicidal, but I'm experiencing the feelings that go with it. So, prayers would be appreciated.

Jim

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Jim and @johnjames, how are you two doing? So many of us struggle with suicide ideation. Pain definitely can cause us to fight for our sanity!

Please know that all of us care deeply about your well-being and are here to support, inspire and encourage you.

I am praying God bathes you in His comfort and peace through Christ which surpasses human understanding, and that you experience the sacrificial, deep, vast, boundless, unmerrited, free, and unfathomable love of Christ.

Hang on dear ones, Sunnyflower

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sunnyflower | @sunnyflower | Oct 24, 2020
In reply to @lorirenee1 "@jimhd Terrible to say, but I cannot imagine handling brutal pain without suicidal thoughts. I have..." + (show)
@lorirenee1

@jimhd Terrible to say, but I cannot imagine handling brutal pain without suicidal thoughts. I have them all the time. On top of it all, I was a veterinary technician for a few years, and watched first hand, the kindness of euthanasia. I watched suffering ended immediately, and without trauma of any kind. It's called being humane. Something that never really caught on for us humans, except in a few states. Will I ever committ suicide? If I could be guaranteed to do it correctly, perhaps. That is maybe a terrible thing to say. I don't know. But what is the point in living this way? I am sorry you are so very low. I have no idea what to say, other than that I truly understand it. I do know that I am at least able to take my Kratom and distract myself from pain. Like you, physical activity helps a lot. But is this a life? I have no idea. Lori Renee

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Hey Jen @bustrbrwn22, Jim @jimhd and Lori Renee, when I am begging God to take me now bc my pain is intolerable and causing me to fight for my sanity, I think of how my grandkids, with whom I am very close to, would feel if I took my life and then I think, well, they wouldn't want me to suffer either. My mind won't stop analyzing, it's a problem!

Being a Bible-believing Christian, I don't believe we should take our own lives. I want to be clear, there is NO JUDGMENT HERE! !

I know God well enough to know that He has a purpose in our suffering. There are many bible verses that confirm that. And that a believer in Christ won't lose their salvation and will be forgiven if they take their life.

I want you to know how much I appreciate all of you and your support, encouragement and inspiration. Thank you!!
Sunny 🤗🌹

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notborntoburn | @notborntoburn | Oct 24, 2020

oh sweet Sunny my heart is with you,unfortunately I suffer with you too. Romans 15:13 May the God of hope fill you with all joy and peace in believing ,so that the power of the Holy Spirit you may abound in hope. I know how hard this pain is,morning,noon and night.Taking my grandchildren to the park and walking home is a climb to mt.Everest with no less burning when the day is done. I find myself begging God during the night in the morning and all thru the day to give me some relief or a glimpse into why,but God is quiet I know He doesn't have to explain anything my part in this mystery is to trust,some days I can and other days I can't all I know is He doesn't let go of me even in the darkest valley we will see the God's glory. You are not alone. Marianne

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sunnyflower | @sunnyflower | Oct 24, 2020
In reply to @johnbishop "Hello @eleanork, I would like to add my welcome to Connect along with @jesfactsmon and other..." + (show)
@johnbishop

Hello @eleanork, I would like to add my welcome to Connect along with @jesfactsmon and other members. There are some other discussions on Connect you may be interested in reading and following:

- IVIG Infusions: https://connect.mayoclinic.org/discussion/ivig-infusions/
- Hashimoto's Thyroiditis and IVIG Treatment?*: https://connect.mayoclinic.org/discussion/hashimotos-thyroiditis-and-ivig-treatment/
- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

Are you considering IVIG infusions to help with the neuropathy?

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John, again and again you bless me as you take the time and effort to share your wealth and knowledge of the resources we all need. Thank you from the bottom of my heart ❤️

@eleanork, a big warm welcome to you to this blog! I am certain that you will find wonderful support, encouragement and inspiration here bc we care very much about your well-being.

Many blessings, Sunnyflower 😊

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