Living with Neuropathy - Welcome to the group

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

@catro

My name is Charlie. I go by Catro. I am almost 82 and have had PN more than 10 years, but recently it has gotten worse having moved from my feet up my legs and into my hands and arms. The mystery is why I can feel fine during the time I am awake but about 2 hours after I go to sleep I wake up with my feet, legs and hands burning. This sleep wake cycle goes on until I finally get up and move around. It gradually subsides and I have a good day with little or no pain. Then I go to bed and it starts all over again. Does anyone experience this? Does anyone know what is going on in my body while I am asleep that is doing this to me. I’ have been off of sugar, alcohol, and anything high glycemic for several months.

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@catro

I usually have pain in my feet which a spinal cord stimulator implant and a few medications keep the pain down to a tolerable level, but as soon as I lie down the pain instantly jumps to 6-8. I don't know why it happens. The same thing is true when I put my feet up in my recliner. But it hurts when I sit up with my feet on the floor, too.

I had 6 sessions with a pain therapist and I use a couple of things she told me. But otherwise it was a waste of time, at least it was for me.

I have this question on my list of things to ask my doctors about.

Jim

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I had this article delivered to my inbox from Medscape today. Hopefully the link allows others to read it. It's called 'A Clinician's Approach to Peripheral Neuropathy'

https://www.medscape.com/viewarticle/920379_1

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@iceblue

I had this article delivered to my inbox from Medscape today. Hopefully the link allows others to read it. It's called 'A Clinician's Approach to Peripheral Neuropathy'

https://www.medscape.com/viewarticle/920379_1

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HI there @iceblue. I hope you had joy and laughter yesterday a day full of good memories. Thanks for the Medscape link. It went right to the article. Very thorough and a challenge to absorb. Did you find it definitive for you? If so, in what way. Be happy…be safe. Chris

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@johnbishop

@constitution thank you for the article identifiers – here is the links you mentioned for @catro.

Psychotherapeutic Approaches in the Treatment of Pain
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3000182/

Psychotherapeutic approaches in the treatment of pain.
https://www.ncbi.nlm.nih.gov/pubmed/21152145/

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John, Thx for finding the links. Hope they are helpful.

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@iceblue

I had this article delivered to my inbox from Medscape today. Hopefully the link allows others to read it. It's called 'A Clinician's Approach to Peripheral Neuropathy'

https://www.medscape.com/viewarticle/920379_1

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Wonderfully informative article that strained my knowledge of medical terminology (gained while working in the pharmaceutical industry) to the breaking point! For me the comments on lumbar sacral radiculopathy as a co-morbidity were helpful. If I understand it correctly, nerve entrapment (and stenosis?) can cause symptoms that can overlap with or even be confused with the symptoms of peripheral neuropathy. This makes differential diagnosis (including testing). VERY important.

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@marazion

Wonderfully informative article that strained my knowledge of medical terminology (gained while working in the pharmaceutical industry) to the breaking point! For me the comments on lumbar sacral radiculopathy as a co-morbidity were helpful. If I understand it correctly, nerve entrapment (and stenosis?) can cause symptoms that can overlap with or even be confused with the symptoms of peripheral neuropathy. This makes differential diagnosis (including testing). VERY important.

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@marazion – I spend a lot of time looking up medical terminology when reading articles like this, but I also spend a lot of time depending on context to help inform the meaning of some words. The article really caught my attention because until I was diagnosed with SFN, I firmly believed the pain was caused from something going on in my sacral area because I have a low level ache going on in that area almost all of the time….

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@artscaping

HI there @iceblue. I hope you had joy and laughter yesterday a day full of good memories. Thanks for the Medscape link. It went right to the article. Very thorough and a challenge to absorb. Did you find it definitive for you? If so, in what way. Be happy…be safe. Chris

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@artscaping – I wouldn't say I found it 'definitive' – but it did sort of confirm something I have believed about my own situation. I just don't know what to do about it….

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@iceblue

@marazion – I spend a lot of time looking up medical terminology when reading articles like this, but I also spend a lot of time depending on context to help inform the meaning of some words. The article really caught my attention because until I was diagnosed with SFN, I firmly believed the pain was caused from something going on in my sacral area because I have a low level ache going on in that area almost all of the time….

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@iceblue – I have frequent pain in my SI joint. My daughter, a physical therapist. keeps encouraging me to follow an exercise regime. (I hate execise!) She also points out that I probably have PN stenosis scoliosis and sacral arthritis all at the same time, which makes diferential diagnosis and a treatment plan challenging! You might have a similar complex of conditions? And my chiropractor friend keeps reminding me that pain in say the foot is just as likely to reflect a back problem as it is a foot problem. In plain language we are statistically unlikely to get a comlete diagnosis or a complete treatment plan unless we are very lucky in our choice of Dr. or Specialist. I have tried injections, medical marijuana, chiropractic and accupuncture to no efect. Ibuprofen helps but The long term side effects are risky so I limit myself to 400 mg perhaps twice in a month. Mindfull meditation, weight control, cycling and a healthy diet have helped me to a) to reduce pain from say 8 to 4 on average…and b) to "accept" my condition with a consequent reduction in stress, anxiety, depression. ( previously depression and anxiety relating to my condition caused more problems than the physical conditions!)

Have a happy new year!

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@marazion

@iceblue – I have frequent pain in my SI joint. My daughter, a physical therapist. keeps encouraging me to follow an exercise regime. (I hate execise!) She also points out that I probably have PN stenosis scoliosis and sacral arthritis all at the same time, which makes diferential diagnosis and a treatment plan challenging! You might have a similar complex of conditions? And my chiropractor friend keeps reminding me that pain in say the foot is just as likely to reflect a back problem as it is a foot problem. In plain language we are statistically unlikely to get a comlete diagnosis or a complete treatment plan unless we are very lucky in our choice of Dr. or Specialist. I have tried injections, medical marijuana, chiropractic and accupuncture to no efect. Ibuprofen helps but The long term side effects are risky so I limit myself to 400 mg perhaps twice in a month. Mindfull meditation, weight control, cycling and a healthy diet have helped me to a) to reduce pain from say 8 to 4 on average…and b) to "accept" my condition with a consequent reduction in stress, anxiety, depression. ( previously depression and anxiety relating to my condition caused more problems than the physical conditions!)

Have a happy new year!

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I completely agree. I have been chasing a diagnosis (cure actually) for years, and suspect it is highly unlikely that I will ever find out the underlying cause of my pain. I am not a fan of 'exercise' either. It seems so much like work. I used to walk a LOT because I really enjoyed it – but the pain in my feet has eliminated that joy from my life…

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Hi. I'm Robyn. 6 months ago I was hospitalized because of low magnesium and potassium. My hands were numb and hypersensitive. 2 years before I was hospitalized for low potassium and water weight gain.

I lost nearly 100 pounds of water weight during the 7 day stay. Only discharged me when my K was normal.

They said that I had neropathy this last time due to my drinking. 6 months later, the neropathy has gotten worse even after I stopped drinking. My magnesium and potassium are normal. BP normal. BS normal. B counts normal. Heartrate still high.

I have lupus in my family (Systemic and Discoid), my tests came back as borderline as did my mothers.

Is there any hope for me?

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@roxye

Hi. I'm Robyn. 6 months ago I was hospitalized because of low magnesium and potassium. My hands were numb and hypersensitive. 2 years before I was hospitalized for low potassium and water weight gain.

I lost nearly 100 pounds of water weight during the 7 day stay. Only discharged me when my K was normal.

They said that I had neropathy this last time due to my drinking. 6 months later, the neropathy has gotten worse even after I stopped drinking. My magnesium and potassium are normal. BP normal. BS normal. B counts normal. Heartrate still high.

I have lupus in my family (Systemic and Discoid), my tests came back as borderline as did my mothers.

Is there any hope for me?

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Btw, I am only 44.

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@roxye

Hi. I'm Robyn. 6 months ago I was hospitalized because of low magnesium and potassium. My hands were numb and hypersensitive. 2 years before I was hospitalized for low potassium and water weight gain.

I lost nearly 100 pounds of water weight during the 7 day stay. Only discharged me when my K was normal.

They said that I had neropathy this last time due to my drinking. 6 months later, the neropathy has gotten worse even after I stopped drinking. My magnesium and potassium are normal. BP normal. BS normal. B counts normal. Heartrate still high.

I have lupus in my family (Systemic and Discoid), my tests came back as borderline as did my mothers.

Is there any hope for me?

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@roxye Have you spoken with a neurologist? We can share our experience with regard to the things you wrote, but it would be inappropriate for anyone in this discussion to give you medical advice or diagnosis, and you probably wouldn't want us to. The subject of the relationship between alcohol and neuropathy is being discussed in one of the Living with Neuropathy discussions, and @johnbishop is active in it.

I'm sorry you have been through a difficult time with health issues, as many of us have. It's a very real challenge to sort through multiple signs and symptoms, medications and diagnoses, seeing multiple doctors. I can attest to the fact that the process can be overwhelming and frustrating.

I hope that you will find responses to your note helpful.

And, yes, there is surely hope for you.

Jim

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@roxye

Btw, I am only 44.

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@roxye

I was around 50 when I started noticing signs of neuropathy, beginning in my feet. I'm still ambulatory at 69, so neuropathy isn't a death sentence.

Jim

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Hello @roxye, I would like to add my welcome along with @jimhd and other members. I definitely agree with Jim that there is always hope. Staying positive is a big help. Here is the other discussion Jim mentioned that you might want to read through and post any questions.

> Groups > Neuropathy > Small fiber peripheral neuropathy and alcohol
https://connect.mayoclinic.org/discussion/small-fiber-peripheral-neuropathy-and-alcohol/

As Jim mentioned, have you seen a neurologist yet or had any tests done to diagnose neuropathy?

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Hello. This is my initial post and my main question is: Are there patients on this platform who have idiopathic progressive peripheral neuropathy? I have had testing and do not know where to go next! Thanks in advance for any helpful information
Larry

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