Neuropathy When A Picture Says It Better

Have you ever wished you just had the right image to send to someone who'd just sent you yet another e-mail asking how you are and noting how well you looked the last time they saw you? You need the image that says more than a thousand words right? Now neuropathy is not normally a laughing matter but there are a few 'lighter' images out there you might want to send, without any explanatory text, or long explanations. Given the choice between strangling your well-meaning friends, or firing a humour-bullet...one of these may fit the bill. If you know of more...let us know..they just might make someone's day a tiny bit better.

I've Got Neuropathy...Deal With It!
Dave R April 2016

 

www.neuropathyandhiv.blogspot.com

Were You Relieved When You Were Diagnosed With Nerve Damage

Today's post from themighty.com (see link below) reflects, by means of a personal story, what millions of neuropathy sufferers across the world feel before they receive their definitive diagnosis. It seems astonishing in this day and age that we have to jump through hoops of disbelief, suspicion, inaccurate evaluations and faulty diagnoses before a medical professional finally comes up with the answer but it still happens continually in 2016. Naturally, the more neuropathy hits the news, the more patients will have light bulb moments and emerge from the darkness but is the medical profession ready for it? Not by a long chalk! Not only are we prescribed the same medications that were issued 30 years ago but the time scale between symptoms and diagnosis is unforgivably long. Add on to that the general lack of expert knowledge among doctors and you have patient frustration on a massive scale. That said, it is changing and the medical profession and pharmaceutical companies are finally waking up to the problem and working on solutions but hey...it's about time! The author of this article's patent relief at being given a diagnosis is therefore perfectly understandable. Do you recognise yourself in her story? I have a feeling you will.
 

Why I'm Happy I Received Diagnoses of Neuropathy and Myopathy  
11/19/16 By Jen Hardy Contributor I write about Hereditary Neuropathies
 
Let me start by saying I do not want to be sick. I am not lazy, or trying to get attention. What I do want is a diagnosis, so medical professionals can treat my symptoms, and if possible, heal me. There are so many people who do not understand people with chronic illness and why we want a diagnosis so badly. I want to share my story so I can help other people understand how difficult it is to live with unidentified health issues.

As a young girl, I spent a lot of time during my non-school hours in bed and on the couch. My parents chalked it up to me being a lazy person, but when I would get bursts of energy, I’d be out doing all I could, and I didn’t feel lazy! In middle school P.E., I would always stop running because of sharp pain and a burning sensation in my chest. Again, I was labeled as lazy and told to work through the pain. (Twenty-five years later, we would discover I had asthma.) My parents had me in soccer and softball for several years, but I would get worn out quickly, begging to be benched after a few quarters or innings. As you see, there was a pattern. High school went on the same way, only with the emergence of back pain on top of everything else.

I started falling down in my early 20s. People just thought that was funny. “Look how clumsy she is,” they said. Everyone thought I was both lazy and clumsy. I had x-rays and all the standard blood tests, but nothing was showing up. After I had a couple of children, my energy plummeted, but after seeing a variety of doctors, and with a chart thicker than a Harry Potter book, I still had no diagnosis. The medical and family consensus was that I was fine, lazy, and maybe a little depressed. I was a little depressed; my body was betraying me and I didn’t know why. Not only that, but no one who was close to me believed what I was saying.

In my 30s, the pain became more intense. It was difficult for me to get around, and I was becoming more unsteady. My pain was mostly in my back, but slowly creeping in a little bit everywhere else too. “Where did it come from? Why was it there?” Those were my questions. What answer did I get? “You must want drugs.”

Through all of this, I would argue with anyone who told me to take so much as an aspirin. I was so anti-any-medicine that wasn’t absolutely life-saving that taking strong pain killers was out of the question. I wanted a permanent solution, not a temporary fix. Again and again and again I was asked, “Why do you want something to be wrong? Why do you keep looking for something to be wrong with you? Why can’t you just do what you’re supposed to do like everyone else?”

I was told by those close to me, “Obviously if the doctor says nothing is wrong, then nothing is wrong.” And, “I’m certainly not going to help you get things done when you are perfectly capable of doing them yourself. Stop being lazy and snap out of it!” But more symptoms kept emerging, and I just kept asking questions, and going to doctors, and not giving up. It’s not easy to keep that up when you feel miserable.

A good personal support system helps not only physically, but emotionally as well. When I was 40, I married a soldier. He not only fought for our country, but he fought for me. He went to doctors with me and explained things when I couldn’t, he helped me to remember to take my medicine when I was too tired to remember by myself, and he always had faith that we would find help and I would get better. With his help, I found a pulmonologist who discovered that I have asthma and sleep apnea. Treating those helped some of my symptoms, but there were still several things going on with my body that no one could figure out.

In my early 40s, my husband got sick with what we thought was a cancerous kidney tumor. I didn’t want to tell him that I’d fallen down the stairs twice in one week, but my sister-in-law did. He immediately sent me to the doctor, where I got an MRI of my back, and they finally found something. Ironically, they didn’t actually find it, they said it was still there! A diffuse atrophy that was found in my back seven years earlier that no one ever mentioned to me. The muscles outside of my lower spine had completely atrophied and been replaced by fat. How could this have happened? Why? We didn’t know, but it explained the pain, weakness, and falling I’d been experiencing for years.

I saw several neurologists. My second one actually told me I had too many symptoms and had to pare down my symptom list for him to be able to help me. “Which symptoms are the right ones?” I cried, but he didn’t know, so it was time to find another neurologist. It is so important for patients to keep searching until they find a doctor who listens to them. If I had listened to the first doctors, I might not be here today. I was misdiagnosed and put through risky treatments that didn’t help, and even a major surgery I didn’t need.

I finally went to a new doctor, my eighth neurologist, who sent me to another neurologist 300 miles away at a medical center that specializes in rare neuromuscular diseases. Finally, the wrong diagnosis was officially ruled out. We also found out answers to the health questions I’d had for years. I don’t have one neuromuscular disease, I have two: neuropathy and myopathy. That’s why I had too many symptoms. That’s why none of it made sense. That’s why no one believed that I was telling the truth. It seemed like too much. Like I was making it up.

We now have names for four out of five of my main diseases: asthma, arthritis, sensory neuropathy, and sleep apnea. The fifth is idiopathic myopathy for now. That means I have a muscle wasting disease and no one knows the cause. I’ve had medical testing, the likes of which I wouldn’t wish on my worst enemy, to get to the root of it, but we’re still waiting for the final results. If they’re negative, it means my disease is so rare, it hasn’t even been discovered yet. But my ninth neurologist has done the testing necessary to know I have a serious disease. My body is like a snowman in February; the thaw is coming, we don’t know when, and little bits of me melt away as we wait.

I don’t want to be sick. I don’t want to have an illness. But I do. And because I have fought to find someone to believe in and help me, I have found answers and now I have help managing my pain and fatigue. I still don’t know what’s causing my muscles to atrophy, but in July 2016 I found out that I have neuropathy and myopathy. That’s where most of my system-wide pain is coming from, that’s why I fall, and the muscles that are left work so hard I get fatigued doing the most mundane things.

I’m very happy to finally have a name for what’s been happening to my body for years. I’m not happy because I’m chronically ill. No one wants to be chronically ill, but we do want to be helped. And that’s what a diagnosis does. It helps us get the treatment we need, and live happier, more productive lives.

https://themighty.com/2016/11/ive-been-diagnosed-with-neuropathy-and-myopathy-so-why-am-i-so-happy/

When Do Pregnancy Symptoms Begin

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Video embedded Learn the common early signs of pregnancy from WebMD. Skip to main content. So the fact that you notice some of these symptoms does not A woman can start .Video embedded Find out how early you may start to feel pregnancy symptoms and which signs of pregnancy Early signs of pregnancy: When will I feel symptoms don't begin .When do pregnancy symptoms start? The answer to that differs for every woman around. One woman might notice some of her pregnancy symptoms starting a week .Early pregnancy symptoms differ from woman to woman and pregnancy to pregnancy. is a pregnancy symptom which can also start as early as the first week after .Symptoms of pregnancy: What happens first. Do you know the If you're in your childbearing years and a week or more has passed without the start of an .When do pregnancy symptoms start? Menu. Parents. Follow. Facebook; Pinterest; Twitter; Instagram; Join/Login. Search. Not having pregnancy symptoms is not a .How early can pregnancy symptoms start in women under 18? The same as for anybody else! 2 weeks after is the earliest pregnancy symptoms would appear..You are here: Home - Pregnancy - Signs of Pregnancy When Do Pregnancy Symptoms Begin? by Katlyn Joy | February 19, one of the more common pregnancy symptoms.A Timeline of Early Pregnancy Symptoms. in particular your vascular system. During this stage of pregnancy, your heart may begin pumping faster and harder..How Soon Do Signs of Pregnancy Start? on . At around three to four weeks after conception, more obvious pregnancy symptoms should start to show up..

When Neuropathy Shocks You Into Action

Today's post from georgeschofield.com (see link below) is the personal story of an educated man taken by surprise by a neuropathy diagnosis. He had none of the 'normal' neuropathy symptoms of tingling, numbness etc but found himself falling over at unexpected moments and for no apparent reason. Many neuropathy patients will be able to identify with what he says and the way he says it and maybe his best piece of advice is not to put your physical problems down to old age!!

A TROUBLING DIAGNOSIS
 
Feb 2 2016 George H. Schofield, PhD

I have to admit I took it badly. Not for long but badly nonetheless. You’d think I could simply test out of the emotional part of this. After all, I’m a professional counselor, a psychology PhD, an author and expert on human behavior and adaptability.

Wrong!

What set this in motion was the shocking number of times I tipped over. Once, after turning around quickly in a walk-in closet. (How is it that I can repeatedly ride my new bike for 30 miles without incident but just fall over in my closet?) Then, getting out of a car on my way to an important meeting. Then again in my closet. And again. My own diagnosis: doing too many things at once; distraction. My doctors’ diagnosis: peripheral neuropathy.

Peripheral what? I’d never heard of it.

That may be because it’s most commonly associated with diabetes, which I do not have, and as a side effect of chemotherapy, which thankfully I haven’t ever needed. Peripheral neuropathy (PN) is a condition that affects more than 20 million people in the US. It usually involves pain, numbness or tingling (or some combination thereof), but in my case I don’t have any discomfort whatsoever. It’s just that my brain doesn’t seem to know where my feet are when they are in close proximity to one another, especially when they’re turning.

There’s no cure for PN, but for some people—especially those with pain and tingling—a drug (sometimes Lyrica) is prescribed and may help with symptoms. For me, the treatment is physical therapy and better shoe support. That’s for my feet. For my head, I needed some other things, which I’m recommending to other PN sufferers:
Get Educated. A good source of information is the American Chronic Pain Association, ACPA.org. There also may be support groups in your area. There’s no PN support group where I live, but it is discussed at diabetes support groups, so I may try those.
Inform and educate your family and friends. Let your loved ones know about your diagnosis. They already will know something has changed just by observing you, but may not know the cause. In the case of PN, stumbling can be mistaken for having a drinking problem. Help your loved ones worry about what’s really going on and let them know how they can help.
Have a heart-to-heart talk with your life. I often say that there are a minimum of five of us living in my house at all times: my wife, me, our marriage, my life, and my wife’s life. Each of them needs nurturance. Each doesn’t always see eye to eye with the other. My wife and I were already in agreement. My life and I had some decisions to make. What do we want our quality of life to look like going forward? How dedicated to being active and vital are we? What kinds of limitations does this diagnosis place on us and what do we want to do about it?
Work seriously at whatever treatment process you choose. I’d never had physical therapy before, and was surprised at how much work it is. After the first few sessions, it’s easy to see progress and even easier to slack off. Kind of like dieting. Stick with your treatment for the long run, even for the rest of your life. You and your life (not to mention your family and friends) deserve it.

I also now know from experience that there is one thing NOT to do. With temporarily runaway emotions, I made the leap from a troubling diagnosis to OLD AND SLIDING DOWNHILL, which, of course, made it just that much more difficult for me to get centered again. So:
Do not succumb to the drama of the moment and translate your diagnosis into a confirmation that it’s the beginning of the end. It’s easy to do. This is where items 1-4 above come in. They are all essential.

It’s likely that this won’t be the only opportunity I will have to react to a medical/social/financial/professional announcement. I’m starting to think of it as practice for the ups and downs of life. I’ve found a lot of meaning in a song performed by the wonderful Christine Lavin, with apt rollercoaster metaphors. Be sure to watch Christine’s face as you are listening. Music and lyrics by Matt Alber. https://www.youtube.com/watch?v=Z8xgoa04SNY

http://www.georgeschofield.com/a-troubling-diagnosis/

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When Does Nausea Start In Pregnancy

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When Unqualified Government Affects My Neuropathic Pain Relief

Today's post from painnewsnetwork.org (see link below) looks at the current medication abuse debate from a slightly different angle. It seems that government itself (at least in the States) is ganging up on chronic pain sufferers who rightly receive strong drugs to control their symptoms. US senators claim in a recent letter that patients get their pain-relieving drugs far too easily in hospitals, thus by definition laying the blame on the patients themselves rather than the prescribing doctors, who's job remember, is to treat patients' complaints. What is going on in the States? If it's true that there's a prescription drug crisis leading to addiction, criminality and turning the whole nation into slavering junkies, then what role do the doctors have to play in this and why aren't they arguing their case that chronic pain is a feature of our age and they have to treat it with the best means available? Because that is the case. It will be a tiny minority of health professionals who give out too many opioids and fail to maintain close observation of their patients; the vast majority prescribe drugs according to the severity of the complaint. So what's behind the current hysteria and daily headlines of a drug-addicted populations trawling the internet for criminal drugs? Can it really be money? We know that health costs are spiralling out of control and in this sort of crisis, the first reaction is to look for a scapegoat. As patients, we also know that the real problem lies with the greed of pharmaceutical companies who are stretching health budgets to snapping point by continually hiking up the price of their drugs but nobody in government dares take them on. As a result of these and other pressures, it's very easy to pick out one group of easy targets and take the spotlight away from what the real problem is. This article concentrates on the current opioid argument and features the genuine patients who are suffering as a result. Worth a read.

Senators Seek to Silence Pain Patients 
By Pat Anson, Editor February 10, 2016

We’ve run several columns recently about the poor quality of pain care in hospitals and how many pain sufferers are treated as drug seeking addicts. Emily Ulrich’s column about her mistreatment in hospitals (“The Danger of Treating ER Patients as Drug Seekers”) really hit a nerve, generating hundreds of comments on our website and Facebook page from readers who shared their own hospital horror stories.

This makes a recent letter from over half the U.S. Senate all the more striking, because it seeks to silence hospital patients who are unhappy about their pain care.

In the letter to Health and Human Services Secretary Sylvia Mathews Burwell, Sen. Susan Collins (R-Maine) and 25 of her colleagues claim that many pain sufferers get opioid pain relievers far too easily in hospitals.

“For millions of patients who are suffering from illness or injury, prompt delivery of pain control which may or may not include opioid pain relievers is proper and humane,” the letter states. “Yet inappropriate use of opioid pain relievers does not provide any clinical benefit and may actually pose a risk of harm. The evidence suggests that physicians may feel compelled to prescribe opioid pain relievers in order to improve hospital performance on quality measures.”

At issue is a Medicare funding formula that requires hospitals to prove they provide quality care through patient satisfaction surveys. The formula rewards hospitals that provide good care and are rated highly by patients, while penalizing those who do not.
 
Collins and her colleagues asked Burwell for a “robust examination” of the patient surveys – and strongly suggested that questions about pain management be eliminated. The Medicare survey has 32 questions for patients asking about their hospital experience, including two that deal specifically with pain management.

“Currently, there is no objective diagnostic method that can validate or quantify pain. Development of such a measure would surely be a worthwhile endeavor,” the letter says. “In the meantime, however, we are concerned that the current evaluation system may inappropriately penalize hospitals and pressure physicians who, in the exercise of medical judgment, opt to limit opioid pain relievers to certain patients and instead reward those who prescribe opioids more frequently.”

Some doctors agree with that sentiment.

“I’ve just had conversations with several physicians in the last week and they were saying they felt pressured by patient satisfaction surveys,” Andrew MacLean, deputy executive vice president and general counsel of the Maine Medical Association, told the Portland Press Herald. “This type of inquiry would be helpful and we applaud the senator’s efforts.”

More people suffer from chronic pain than heart disease, diabetes and cancer combined, and pain is a major reason why people even seek admission to a hospital; so the senators are proposing that the opinions of a large number of hospital patients be ignored, not that it isn't happening already. Pain patients often tell us they go without appropriate pain treatment in hospitals because they are quickly labeled as drug seekers. Some have horrific stories of mistreatment.

“My sister had Complex Regional Pain Syndrome (CRPS/RSD), went to 3 different hospitals was treated the same way. Finally she got a doctor that did his job, only to find out she had stage 4 cancer. She died less than 2 months from the time she got diagnosed,” wrote Melissa.

“My 13 year old daughter went in with chest pain and they told me she was having an anxiety attack. They did nothing. Two days later we found out from the children's hospital that she had a hole in her heart and could have died. ER doctors are the absolute dumbest, cruelest people I have ever met,” said Shannon.

“I used to work in an ER. Patient came in with tremors, talked of pain. She was quickly diagnosed as a pregnant drug addict who received no care and was sent home,” wrote another reader anonymously. “Two days later her husband brought her back demanding treatment. Doctor wanted to put her into rehab when she went into labor along with seizures. It wasn't drugs it was meningitis. She and the baby BOTH died.”

“I take Norco for chronic back pain. I go to the ER for a different medical issue and I get the looks and nothing to relieve my pain. I recently herniated a second disk in my back and was given nothing in the ER. I refuse to go to another one. If I am bleeding out or literally dying I don't know if I would go into another ER. All they do is judge because they can't feel my pain,” wrote Mistye Staten.

“Last time I was in the hospital and asked for medicine to control the pain I was told no. I said I at least wanted Ibuprofen and the nurse yelled at me to stop asking for narcotics,” said Amanda Hunt.

A recent study at Temple University Hospital in Philadelphia found that the rate of opioid prescribing dropped by about a third, after tougher guidelines were adopted to discourage doctors from prescribing the drugs.

Only 13% of the doctors believe patients with legitimate reasons for opioids were denied appropriate care. A large majority – 84% of the doctors -- disagreed or strongly disagreed that patients were denied appropriate pain relief. Ironically, the researchers did not ask any pain patients what they thought about their hospital care.

http://www.painnewsnetwork.org/stories/2016/2/10/by6zy0jfl3gd41mp6zxh2aiex41lh5

When To Take Pregnancy Test

Emily Meade My Soul To Take

Diabetes latest statistics New Drugs For Diabetic Neuropathy :: diabetes latest statistics - The 3 Step Trick that Reverses Diabetes Permanently in As Little .What's in a Name? What Every Consumer Should Know About Foods and Flavors; 4 Medication Safety Tips for Older Adults; FDA: Cutting-Edge Technology Sheds Light on .2016 Viacom International Inc. All Rights Reserved. Teennick and all related titles, logos and characters are trademarks of Viacom International Inc..

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2016 Viacom International Inc. All Rights Reserved. Teennick and all related titles, logos and characters are trademarks of Viacom International Inc..Diabetes latest statistics New Drugs For Diabetic Neuropathy :: diabetes latest statistics - The 3 Step Trick that Reverses Diabetes Permanently in As Little .What's in a Name? What Every Consumer Should Know About Foods and Flavors; 4 Medication Safety Tips for Older Adults; FDA: Cutting-Edge Technology Sheds Light .

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Printables, coloring pages, recipes, crafts, and more from your child's favorite Nickelodeon and Nick Jr. shows..Medical news and health news headlines posted throughout the day, every day.TODAY Parents is the premiere destination for parenting news, advice community. Find the latest parenting trends and tips for your kids and family on TODAY.com..

Acupuncture And Pregnancy

Helen Flanagan Baby Bump

TODAY Parents is the premiere destination for parenting news, advice community. Find the latest parenting trends and tips for your kids and family on TODAY.com..Printables, coloring pages, recipes, crafts, and more from your child's favorite Nickelodeon and Nick Jr. shows..Medical news and health news headlines posted throughout the day, every day.