Personal Account Of Living With Neuropathy

Today's post from trialx.com/curetalk (see link below) illustrates that although the causes may be very different, the effects of neuropathy are pretty much recognisable to all. This lady has chemotherapy-induced neuropathy and she clearly has severe problems. It's important to realise that not everybody ends up with such life-changing neuropathy (for most people, the symptoms are much milder) but many do and daily life becomes a struggle just to get through. She looks for the plusses and makes the very best of her condition - a lesson for us all.

Peripheral neuropathy (PN) revisited – Part One

Pat Killingsworth December 22, 2012
Yesterday I noted how “my peripheral neuropathy (PN) is off-the-charts lately.”

There is no denying that my PN is getting worse. I don’t notice it much because of the carefully balanced series of drugs and supplements I take to help control my symptoms.

I slept-in today. NICE!

But I payed for it. If I stay in bed too long in the morning, that means I haven’t taken any anti-PN meds for over eight hours.

My legs below my knees begin to feel hot and tingle. My feet feel like they are on fire. And my hands are so stiff and painful I often drop the pills that will help control my symptoms later that day.

Sunday we stayed in bed and watched the news shows on TV (we are both political junkies) in protest of losing an hour for daylight savings time.

By the time I tried to get out of bed I could barely walk. Every step was excruciating!

But like a miracle, within 20 minutes the pain and discomfort were under control. And an hour later I was out with Pattie, walking the dog along Pine Island Road, watching fiddler crabs scurry back into their holes at low tide.

There are two threads I would like to cover here. My worsening PN, and the way I am able to manage the symptoms so effectively.

I have written a number of times about tips various readers have shared with me to help control PN symptoms over the years.

Last June, I wrote one which featured a half dozen or more links to Myeloma Beacon columns and other articles I had read or written on the subject over the years:Tips To Help Minimize The Pain And Discomfort Caused By Peripheral Neuropathy From The People Who Know Best: Our Fellow Patients

Disregard the lines that you will see struck-through the Myeloma Beacon links. I checked them and they still work.

One of the most interesting articles I mention in that post covered an experience I had at the ASH meetings in 2010.

I was asked to participate in an IMF focus group about PN. It was a wonderful experience and I learned a lot. I will never forget the struggle several of my fellow patients had with their extreme PN symptoms. One poor woman could barely walk. Another couldn’t wear shoes because her pain was so bad–she wore slippers to the event.

I never dreamed that might be me! But lately I’m not so sure…

In the post I describe my worsening PN:

“Last week I finished my third of four scheduled RVD (Revlimid/Velcade/dexamethasone) chemotherapy cycles. The first two, three week cycles didn’t seem to cause much increase in my PN.

But there were hints my twice a week Velcade infusions might be leading to a PN problem.

One day I had a cramp or “stitch” in my side which lingered for hours. Another morning I experienced sharp pains on the bottom of my feet. Both issues resolved themselves without further incidence.

That is, until the start of cycle number three.

BAM! Mid-week my hands became so stiff I could barely bend my fingers. One week later, I experienced what I can best describe as “full body neuropathy.” My body felt like a tuning fork for days. One morning I woke-up and my face was numb for hours. And in the meantime, my hands and feet became increasingly numb. It was becoming difficult to walk. My PN now reached above my knees, with hot flashes shooting down my right leg very few hours. Freaky, disarming–and more than just a bit inconvenient.”

Fortunately, something as simple and groundbreaking as switching to sub-q Velcade helped a lot. For the most part, it put an end to my “full body neuropathy” and also improved the amount of tingling I felt in my feet.

But unlike a majority of myeloma patients, my PN seems to be aggravated by Revlimid. And unfortunately, once my symptoms worsen, they rarely improve very much–even after I stop using Revlimid for a while.

This is a rare week-off of my RVD (Revlimid/Velcade/dexamethasone) therapy. No Velcade or Revlimid this week. Today is Thursday. My hands are exceptionally stiff, even after taking my meds. It even hurts a bit to use the keyboard.

My feet are numb and feel like they are asleep. It is time I admit to myself the reality that my PN is becoming more difficult to manage.

Tomorrow I will rummage-through my medicine cabinet and list all the anti-PN meds and supplements that I am currently taking. I will also share some of the suggestions I have been receiving from readers to help.

By working to improve my worsening PN symptoms, maybe others who are suffering from PN can improve their quality of life as well. Worth a try, right?

Feel good and keep smiling! Pat

http://trialx.com/curetalk/2012/03/peripheral-neuropathy-pn-revisited-%E2%80%93-part-one/

Personal Story Living With Neuropathy Vid

Today's short video from dailymercury.com.au (see link below) is a personal account from one Australian woman living with neuropathy. It will strike a cord with many people. Worth a look over your morning coffee.

Penny Curnow suffers from Neuropathic Pain

Penny Curnow talks about Nerve Pain and Relationships Report.

http://www.dailymercury.com.au/videos/penny-curnow-suffers-neuropathic-pain/17817/

Living with HIV and Neuropathy

Today's post is a moving five minute video from a man describing his experience of being tested and subsequently living with HIV and Neuropathy. It will be uncomfortably recognisable to many and is also a reminder that not everybody can just take the meds and live a 'normal' life. (See Transcript and link below)



Transcript

Michael Silvas: I am Michael Silvas and this year I turned 50. I became positive in 1993 while I was diagnosed positive with AIDS. I should have known and should have been tested prior to that denial so weird. The very first person who gave me, who -- I should've known I had AIDS was my dentist. And it was another person I worked with, referred patients with and all that, and he was very good. He had said to me, he said, "Michael, when was the last time, you know, you had an HIV Test?" that should've told me, I'd better get down there and get an HIV test.The first symptoms that I was feeling with unaware for AIDS and maybe someone else can relate to is the reason why I am going through this detail. I would come home -- I was teaching Inclusive Marketing at the time with IBM, and my feet --I remember on Fridays I would come home and my feet would just be killing me and I thought it was the wing-tip shoes because with IBM we wore -- back in my day, we wore dark suits and wing-tipped shoes and etc. And I thought it was me being on my feet all the time, I thought it was the style of the shoes. I never-never would have thought that it was actually a disease or a medical condition.And I didn't even; in fact I had already been diagnosed with AIDS for several years, before I knew that it was actually the medical condition that that there was a thing called Neuropathy. When I was tested, I went down with a friend of mine who I knew was going to get it, you know who had it, I just knew he had it and he has been talking about getting tested but he wouldn't go because he was scared. And so I said -- well, you know, he asked me to go with him and I said, "Sure, I'll go with you" because I wasn't worried that I was going to come out, you know, positive.And now it shocked me! I don't advice anyone to do that, you know. If you really don't want to share your information with a friend, don't go with a friend. It is a big -- it does change your life in a dramatic way and you might not -- you might have a different perspective once you get the diagnosis as to who you want to share it with. I remember getting back in the car and just expecting that they were going to be positive, and then you know I saw that he didn't have a packet and I did and then I had to explain it to him. It just -- I don't know! It was like kind of takes your breath away. When I get asked, you know, how were you infected? It has to be sex!And I felt like I was at the top of my game when I became very sick one week and all of a sudden my stomach started swelling up and getting bigger and bigger. And I started losing controls of my bowels, the lack of better words shitting all over myself and vomiting and vomiting. I went in the emergency room and I remember we called my therapist because I had already started going -- I had already been diagnosed with AIDS but I hadn't been sick and so I started therapy, Psych-therapy. And so I called her as when I was going in the emergency room, she was in there with me. And I remember so clearly that I was there dying on the bed in the emergency room and no one would get near me, no one would -- everyone was scared to touch me.My Doctor at the time, who was an Immunologist was on vacation and his backup never showed, never came. The nurses didn't want to touch me, no one, no doctor wanted to attend me, even with my therapist there advocating for me. What they ended up doing was giving me a shot of a Demerol and sending me home without any examination, without anything -- seeing my stomach just ended, you know, big. Kind of like you see the African babies with the swollen babies when they're starving, it was like that. And so pretty much I went home to die. But at least I wasn't in as much pain for at the moment.I was living -- and it is so funny because I was living in a complex who accepted rental assistance, I had broken out with Shingles really bad. And I understand that normally shingles you get only on one side, but I had it on both sides and it looked like I had been whipped. You know all across my back and all of my legs; it just looked like they've been whipped with sores. I mean it was awful. And I had decided that I was going to not be ashamed, it was part of me trying to cope with my diagnosis and I wore shorts and that was a mistake.I came through -- as I was coming through the complex and walking by the pool, people noticed that there was something, you know, wrong with my legs. And they became aware and they started talking and then they started snubbing me and then they started harassing me and they would do things to me to -- to force me to move.Female Speaker: Wow!Michael Silvas: I take two in the morning, two in the morning and two at night!Female Speaker: And that's also for HIV?Michael Silvas: Yeah! I have to take these together. Along with -- when I take both, I have to take Tenofovir which is a booster. This is a really -- considered a really wonderful break through. For the first time with this medication I had the first undetectable test however it didn't last long.Female Speaker: Okay!Michael Silvas: And now these really aren't really functioning -- I think that if you're considering going into any type of relationship, in fact I do know of people who were in going into a relationship before having sex, especially unprotected sex, they test. And that's almost a way of life now and it should be everyone's way of life. You don't hear enough about that.


http://www.freehealthvideos.net/8837/living-with-hiv-michael-silvas.html

Living Longer With HIV And Neuropathy

Today's post from webmd.com (see link below) looks at how living with HIV in 2015 can mean living a long and normal life, although there are problems that can crop up thanks to either the virus or the medication - (neuropathy is one of them). It's pretty much aimed at the success stories with HIV - those on regular treatment, who have achieved an undetectable status. However, many millions across the world do not live in this luxurious position and are denied treatment and exposed to vicious stigmas and our thoughts should always go out to them. Worth a read both for those living with HIV and those who are lucky enough not to.

HIV as You Get Older
By R. Morgan Griffin WebMD Feature Reviewed by Melinda Ratini, DO, MS

By 2013, almost 30 percent of all people with HIV were age 50 or over. This greying of the HIV population shows how well today’s HIV treatments can work.

HIV makes aging itself more complicated. But plenty of people have had HIV for years, even decades, and are doing well.

"These days, we fully expect that someone with HIV will live a long, healthy life," says Christine A. Wanke, MD, professor of medicine and director of the nutrition and infection unit at Tufts University School of Medicine. "But that means they have to plan ahead and adopt the healthy habits to stay that way, just like anyone without HIV." 

HIV and Aging: 5 Common Challenges

As you get older with HIV, you may face issues including:

1. Other conditions. Just like anybody, getting older means you're more likely to have health problems, and HIV seems to bump up the risk even more. "HIV accelerates the aging process and magnifies its effects," says John G. Bartlett, MD, professor at the Johns Hopkins School of Medicine and director of its AIDS service. So HIV may make you more likely to get heart disease, diabetes, cancer, osteoporosis, kidney problems, and other conditions.

2. Drug interactions. Since you’re already taking medicines for HIV, additional drugs for other conditions can increase the chance of interactions.

3. Loss of support. Some people become more isolated as they age. That happens more often to people with HIV, who may also be dealing with embarrassment about the condition or strained family relationships. If you're alone and disconnected, you're more likely to get depressed.

4. Changing roles. Like many people without HIV, you may be caring for your aging parents. That can add emotional and financial pressures.

5. Difficulty adjusting. "I talk to people with HIV who say, 'I didn't expect to live to middle age,'" says Brad Hare, MD, director of the HIV/AIDS clinic at San Francisco General Hospital. "'But now I'm middle-aged and I'm probably going to live another 30 years.'" Many people who got HIV long ago didn't plan for a long life, and adjusting can be a challenge. For instance, you might not have saved for a longer life.

7 Steps to Take

1. See an HIV expert. The more your health is complicated by age and other conditions, the more crucial it is to have an expert overseeing your HIV care.

2. Get good routine medical care. Specialty HIV care is not enough. Because your risks of other medical problems are higher, keep on top of your general health, says Hare. Get your annual physicals, keep tabs on your blood pressure, cholesterol, and other tests your doctor recommends.

3. Avoid drug interactions. Make certain every doctor you see knows about every medication and supplement you take, including prescription drugs, over-the-counter products, vitamins, and natural products. Doctors may adjust your medicines, dosages, or schedules to prevent interactions.

4. Improve your lifestyle. To enjoy life as you age, stay fit. Exercise regularly, and if you smoke, stop.

5. Eat a healthy diet. Go for lots of fruits and vegetables, lean proteins, whole grains, and healthy fats. "Eating a heart-healthy diet makes sense for everyone," says Bartlett. "But because people with HIV have higher risks of heart disease, it makes even more sense for them."

6. Seek support. Having a support system of family and friends is key. Make an effort to stay connected. If close friends or family have died or moved away, work on making new friends. You might also connect through a support group.

7. Get help. Call your local health department to learn about local resources for people with HIV, says Hare. Your local Council on Aging is a good place to start; it can point you toward programs and services that could help. A financial planner may also help you work on savings and expenses.

http://www.webmd.com/hiv-aids/features/hiv-and-aging?page=2

Strategies For Living With Neuropathy Vid

In today's video from beatingneuropathy.tv (see link below) Dr. John Hayes gives some very useful advice for people living with neuropathy, chronic pain and other related diseases. He stresses the importance of having a strategic plan for getting the best out of your situation and that involves considerable input on your part, especially relating to lifestyle. Worth a watch.


Episode 49: Do YOU have a REAL Neuropathy and ChronicPain Treatment Strategy?  
Posted by John Hayes Jr Friday, March 7th, 2014

Do YOU have a REAL Neuropathy and Chronic Pain Treatment Strategy? Has anyone ever suggested an organized and focused treatment plan? Well in this video Dr John Hayes Jr talks real about what you must know to make informed care choices and Neuropathy treatment decisions!




 http://beatingneuropathy.tv/2014/03/episode-49-do-you-have-a-real-neuropathy-chronicpain-treatment-strategy/