Now, doctors have found that Lyrica also seems to be helpful for people who live with restless legs syndrome. According to the NIH, restless legs syndrome is:

a neurological disorder characterized by unpleasant sensations in the legs and an uncontrollable urge to move when at rest in an effort to relieve these feelings. RLS sensations are often described by people as burning, creeping, tugging, or like insects crawling inside the legs. Often called paresthesias (abnormal sensations) or dysesthesias (unpleasant abnormal sensations), the sensations range in severity from uncomfortable to irritating to painful.

Although it’s not known for sure, estimates range from 5 to 10% of adults in the United States live with RLS. Disorders and problems that interfere with sleep can have severe consequences as a result of the sleep deprivation. So while RLS may not seem like a serious problem, it is.

Researchers from Spain reported last week that they had success in treating people with RLS using the medication Lyrica. According to their findings from the 58-patient study, three-quarters of those who had RLS and who took Lyrica experienced relief of symptoms – in other words, the symptoms went away. Of the remaining quarter, 66% experienced an improvement in their symptoms.

The group of patients who took the placebo instead of the Lyrica didn’t do as well. In fact, their symptoms worsened by 29%.

There are a few cautions however. First, the study is a small one. It’s hard to take serious results from a study of only 58 patients. The other issue is that this is an off-label use of the medication, which means it’s not FDA approved for this purpose.

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images: morguefile.com

Post from: Blisstree

Off-label Lyrica for restless leg syndrome

I really don’t know what to think about this. Read the blog entry, Battered Woman Imagery in Pfizer’s New Fibromyalgia Ad, and tell us what you think? Is this a good approach? Or just another way to try and sell the Lyrica that is targeted for the fibro market?

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Post from: Blisstree

Yikes – Pfizer’s ad for fibro awareness

It’s difficult enough to find treatments for diseases that are undeniably present, it must be incredibly difficult to find treatments for diseases and disorders that don’t have that benefit. Another illness that falls into this category is chronic fatigue syndrome, or CFS.

If you want to read the article, you can find it here: Lyrica Reduced Pain of Fibromyalgia in Patients Regardless of Symptoms of Anxiety or Depression.

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Post from: Blisstree

More positive Lyrica news for fibromyalgia

This week, we speak with a retired surgeon from the mid-west USA.

Can you tell me about when you first started experiencing the pain and what kind of pain it was? What were you told?

I started having arm pain around five years before I had to retire. At first I thought it was just a pulled tendon or a bruise. It felt like my elbow and hand were being crushed, or sometimes like a fire breathing rat was gnawing on my bones. Sometimes it feels like I’m being crucified. It would last a few days and be gone for months. I started avoiding certain swinging motions which seemed to exacerbate the problem such as playing catch or badminton with my children. As a physician, I worked with other doctors all the time and they all said it was “tennis elbow, just rest it. Take some Tylenol and aspirin.” I did and it seemed to help, at least in the beginning.

Then one of the doctors noticed me stretching my arm in an unusual fashion and when I explained it seemed to help with the pain he did an electromyelogram [EMG] and said there was nerve damage. He sent me to a regional hand specialist who insisted there was nothing wrong with me and said that the other physician simply had an outdated EMG machine which was unreliable. The pain would come and go. Gradually the pain episodes were more intense and longer lasting and the good spells became shorter.

I realize this now but each time I thought I was getting better was really the eye of the storm. I had more EMGs which were all normal. Gradually more and more of my hobbies were falling by the wayside and I was getting more and more exhausted by performing surgery. I started keeping bottles of aspirin and Tylenol in my desk and even started getting liver enzymes checked to be sure I wasn’t taking too much. I got a hot tub and soaked daily to help with the pain and started eating more hot peppers for the capsaicin which helped a little. On vacations I would drink alcohol for relief.

I started falling asleep while waiting between surgeries because the pain had kept me awake the night before. My children complained that I didn’t think anything was funny anymore. We’d rent movies; I couldn’t laugh even when I said I thought something was a good joke. Still all the tests were normal. All the other doctors said I was fine.

Five years later I suddenly got dramatically worse. I started to drop things. The pain would keep me awake for up to a week at a time. I stopped doing surgery on my own. For several months I had already been shipping all but the simplest of cases out because I just felt too exhausted to do them. I didn’t want anyone to have to tell me it was unsafe. I only did office work and then only half days a few days a week while I continued to worsen and still more tests were pending and then officially “normal” and finally my right hand was paralyzed one day. Muscles in my hand started to waste, and finally the EMGs showed diffuse progressive nerve damage with evidence of demyelinization. Realizing that once muscles atrophy they don’t grow back, I retired. This was obviously not something that a leave of absence would fix and a surgeon needs two good hands. A good doctor protects the patients, even if that means protecting them from himself.

Gradually the same thing happened in my other arm and it’s beginning in my legs. I’ve had a few surgeries which have helped somewhat with pain and slightly with function. There is a huge difference between 10% function in a limb and no function. Interestingly the neurosurgeon says that the EMGs are very different when the nerve is tested directly as opposed to with skin and muscle covering them. Apparently I have electrically insulating skin which gives false negatives on the tests. Maybe that’s why I survived a lightning strike as a child. Whatever.

I can type slowly but have trouble holding a pen or a toothbrush. I went almost overnight from a healthy active surgeon to being a near invalid. They seem to think now that it is some variant of or somehow related to Lou Gehrig’s despite no family history of such things. The geneticist raised the question of a possible “family secret” and that perhaps I’m not the person on my birth certificate. Again, whatever.

What have you tried to help you with your pain?

Pain medications, herbal remedies especially hot peppers, diet, physical therapy, rest.

Can you tell me a bit about what worked and what didn’t?

The pain medication Lyrica was by far the best, unfortunately I became allergic to it rather quickly. Everything else sort of helps a bit. The most important thing I’ve found is to not try to do things when I hurt. Narcotics give me more side effects than help usually. Dissociatives like alcohol seem to help in the short term but then tend to make you able to overexert yourself, thus worsening damage in the long run.

How does having this pain make affect you in terms of how you live your life?

I need help sometimes just with hygiene and eating. I can’t work or even take part in my former hobbies. I’ve been in and out of a wheelchair. Travelling is usually out of the question.

If you were to look back over what you have tried/haven’t tried, would you change anything? If so, what would you change?

Not really. I worked as long as I could safely. I stopped when I had to. I’ve done all the stuff they’ve told me and a few things extra on my own. This seems so far to have no specific treatment or even a specific diagnosis so far.

What would you say to someone in a similar situation who is just starting to try to find treatment and relief?

Get a bird feeder. Wildlife is more interesting than a soap opera. You’ll find out who your real friends are. Do not underestimate the need for sleep. Lack of sleep worsens everything. Do range of motion exercises daily, preferably in water. Water takes the weight of your limb out of the equation and if you can maintain range of motion it is much easier for you to do things yourself and for others to help you do the things you can’t. A frozen limb is worse than a limp paralyzed limb. You also don’t have to worry about falling over and breaking a hip if you are in water. Try not to be isolated. Email can be done at 2 in the morning without waking others up. Get a computer and type in your thoughts and learn to use the cut and paste function for anything you get asked more than once. Understand that when people avoid you it is out of their own fears of their own mortality probably at work. Labs and tests are not infallible. If you think there is something wrong, seek another opinion or a third or a tenth, but, understand that sometimes the best test is time.

Would you like to add anything?

You have to be alive to complain. Disability insurance may be more important than life insurance. Tylenol is metabolized into another chemical that can damage your kidneys before the liver. Liver tests aren’t the only thing to check if you are taking a lot of over the counter medications even under the advice of a physician.

Thank you for sharing your story with us. I think sometimes we forget that the caregivers can get sick too. I hope that stories like yours will help people realize that they’re not alone.

Post from: Blisstree

Company’s calling – a retired surgeon speaks about his nerve pain

Each Monday, I’ll be featuring someone who is living with or has lived with pain. I hope that their stories will help others find hope and, maybe, learn from each other. If you have a story to share, please email me and we can talk about it.

Our first guest is GT from Guelph, Ontario, Canada.

Can you tell me about when you first started experiencing the pain and what kind of pain it was?

I started to have excruciating neck and head pain a few years ago after an attack of ADEM. Acute disseminated encephalomyelitis (ADEM) is a neurological disorder characterized by inflammation of the brain and spinal cord caused by damage to the myelin sheath.

Did you seek help right away? 

I went for acupuncture the morning of the attack.  I thought that I had an inner ear infection causing me to have the headache, balance disorder, dizziness that started the day before. The acupuncturist was a Western trained doctor from China.  She privately spoke to my husband and thought perhaps I was having a stroke. My husband then got me immediate medical care first with a doctor on call at my GP’s office then later with a neurologist.

What did the doctors tell you when you did seek help?

I was told that either I had ADEM (never heard of it or knew what it meant) or an aggressive attack of MS [multiple sclerosis].  The residuals of the EM set in about two years later. My comments here refer to the fallout from the ADEM re head and neck pain.  I have as a result of the ADEM developed osteoarthritis, fibromyalgia, and acquired brain injury.

What have you tried to help you with your pain?

Regular off the counter pain medication Tylenol, Advil, at one time narcotics, regular acupuncture, heat, physio, Chinese herbs, vitamin supplements, hot tub, swimming, other prescription meds, and relaxation tapes.

 Can you tell me a bit about what worked and what didn’t

Because of the brain injury caused by the ADEM many things worked for awhile but it is the acupuncture that consistently helps. I go bi weekly now for treatment.  

How does having this pain affect you in terms of how you live your life?

I live my life to the best of my ability constantly adjusting or trying new things or ways of dealing with the pain.  I get exhausted very easily dealing with it more on some days than others.  I need a rest every day.  I cannot work. I am waiting to start a course in Mindfulness Cognitive Therapy. My neurologist has also prescribed a new drug Lyrica™ that might help.  But it is very expensive and my drug plan so far will not cover it.

What would you say to someone in a similar situation who is just starting to try to find treatment and relief?

Try everything…what works for one may not work for another.  Do not close the door on trying new things.  Some people find massage helpful, aromatherapy works as well.

Thank you GT for sharing your story. I had never heard of ADEM either and had to look it up to gain a better understanding. We often think of chronic pain being the result of ordinary issues, such as back injuries, or migraines; hearing your story helps us realize that there is a lot more that we don’t know yet.

Post from: Blisstree

Company’s calling – a guest discusses living with pain