There are some nights when
sleep plays coy,
aloof and disdainful.
And all the wiles
that I employ to win
its service to my side
are useless as wounded pride,
and much more painful.
I have an appointment next Monday with Dr. Cuervo at the Neurodiagnostic Laboratory here in Lakeland. These are the tests that the scheduler mentioned the doctor may be wanting me to take:
An electromyogram (EMG) measures the electrical activity of muscles at rest and during contraction. Nerve conduction studies measure how well and how fast the nerves can send electrical signals. Nerves control the muscles in the body by electrical signals (impulses), and these impulses make the muscles react in specific ways. Nerve and muscle disorders cause the muscles to react in abnormal ways.
Measuring the electrical activity in muscles and nerves can help find diseases that damage muscle tissue (such as muscular dystrophy) or nerves (such as amyotrophic lateral sclerosis or peripheral neuropathies). EMG and nerve conduction studies are often done together to give more complete information.
Why It Is Done
An electromyogram (EMG) is done to find diseases that damage muscle tissue, nerves, or the junctions between nerve and muscle (neuromuscular junctions). These disorders may include a herniated disc, amyotrophic lateral sclerosis (ALS), or myasthenia gravis (MG). Find the cause of weakness, paralysis, or muscle twitching. Problems in a muscle, the nerves supplying a muscle, the spinal cord, or the area of the brain that controls a muscle can cause these symptoms. The EMG does not show brain or spinal cord diseases.
Nerve conduction studies are done to find damage to the peripheral nervous system, which includes all the nerves that lead away from the brain and spinal cord and the smaller nerves that branch out from those nerves. Nerve conduction studies are often used to help find nerve disorders, such as carpal tunnel syndrome or Guillain-Barré syndrome.
Both EMG and nerve conduction studies can help diagnose neuropathy.
How To Prepare
Tell your doctor if you:
I have one question about this article that I would like comments on... the article calls for community-based teams of health providers consisting of occupational therapists, physiotherapists, psychologists, nurses and social workers asking them to work alongside GP’s. But then it goes on to mention that fibromyalgia is a chronic central nervous system problem. Doesn't that mean a neurologist should be included in the team?
The American College of Rheumatologists developed diagnostic criteria for fibromyalgia in 1990, the culmination of many years of debate and disparagement of the existence of this pain problem. At the time, it was thought that it was a rheumatic complaint due to the presence of body pain and soft tissue tenderness, so the diagnosis and management of it was firmly in the rheumatologists camp. Research over the last few years shows that it is in fact a pain syndrome centered in the nervous system. Two rheumatologists now suggest that fibromyalgia should no longer be managed by rheumatologists and it should be handed over to…primary care physicians.
The information above is drawn from an editorial by Shir and Fitzcharles, in The Journal of Rheumatology 2009; 36:4. What does this startling suggestion mean really?
There are several points that this editorial makes:
1.Fibromyalgia is no longer a diagnosis of exclusion, and diagnostic accuracy by GP’s has improved significantly (at least in the US)
2.Exclusion of serious rheumatological or other disorders seems to be carried out quite effectively by GP’s
3.Few investigations are needed to increase diagnostic accuracy
4.‘Successful management necessitates approaching the patient as a whole biopsychosocial being, with treatment strategies directed towards physical and psychological complaints within the context of family and society.’
I’m not going to argue with these points at all, but I am going to suggest that leaving the management of fibromyalgia simply to the family physician might not be the best thing for the person with FM. I don’t doubt the clinical skill of GP’s, and I think they are the best group to diagnose FM – but managing FM isn’t a single-clinician job.
While GP’s certainly know how to diagnose, and can prescribe the majority of medications used to manage fibromyalgia, my worry is that the rest of the management is not a medical task. In fact it’s a biopsychosocial problem, as the 4th point above makes. IMHO GP’s don’t have time or access to services in the community to help people with fibromyalgia to live well, it takes a team to do this.
If I had a wand, or the ear of a health funder, I’d be suggesting the formation of community-based teams of health providers consisting of occupational therapists, physiotherapists, psychologists, nurses and social workers. I’d be asking them to work alongside GP’s, (perhaps even in the same buildings!) so that people being seen by the GP could then be included in a team approach to help them develop active coping strategies to live well, despite their health problems.
Now, as it happens, I don’t have the wand or ear, but I can hope. As Shir and Fitzcharles state:
…the pathogenesis of FM is now firmly centered in the nervous system, and FM is not a musculoskeletal complaint. Optimal patient management requires attention to the many symptom components of FM in addition to pain management. Patients with FMwill also require prolonged care with continued tailoring of treatments, as symptoms are likely to change over time.
Maybe one day soon my dream of community-based interdisciplinary teams to help people be well despite pain (or other chronic health problems) will be realised. The sooner a biopsychosocial approach to managing these problems is adopted the better.
If you’re a person with fibromyalgia, some caveats about anything on the internet:
FM has been a wonderful thing for people who sell so-called ‘cures’. It’s such a diffuse problem, has been questioned for years by the medical community, is often not clearly diagnosed, and changes its presentation often – so people who are either unscrupulous, or are credulous can go about selling all sorts of potions, pills and gadgets for the ‘cure’ of the disorder.
FM doesn’t respond to very much, it’s a chronic central nervous system problem, and living with it means learning how to LIVE with it, not fight it, defeat it, or beat it. It won’t just disappear of its own accord, and it won’t disappear because of some herbal, crystal, magnetic Thing.
Be sceptical, ask for evidence and don’t accept anecdote or endorsements as evidence for the power of any treatment. Self management is really the only way to live well with FM, although some medications can help. Here’s a good site for learning about self management for FM, and here’s a brief overview of a study about how self management can improve the outcomes of exercise in FM.
SHIR, Y., & FITZCHARLES, M. (2009). Should Rheumatologists Retain Ownership of Fibromyalgia? The Journal of Rheumatology, 36 (4), 667-670 DOI: 10.3899/jrheum.08107
By ANNE UNDERWOOD
Fabrizio Costantini for The New York Times
Judy Robinson has been living with fibromyalgia.
Glenn Robinson was always physically affectionate with his wife, Judy. But after she underwent abdominal surgery four years ago, everything changed.
Long after the incision healed, Judy had pain in her hips, her lower back, her legs, her muscles, her skin. When Glenn tried to tickle or squeeze her, she would shy away. Hugs would elicit a grimace. “Don’t touch me; it hurts,” she would say, backing off. Glenn reacted the way any husband would. “I got angry,” he said.
The couple’s social life ground to a halt. Judy, 48, began begging off picnics, barbecues and trips to the boat races at Belle Isle Park in Detroit, where they live.
“We would make plans to get together with friends for dinner,” said Glenn, 50. “Come that day, beautiful weather, she wouldn’t want to leave the house.”
There were days when Judy didn’t even want to talk on the phone. And though she soldiered through eight-hour workdays in the shipping and receiving department of a leather company, she would take breaks to sit in the bathroom and cry.
The Robinsons became desperate to find out what could possibly be causing Judy’s pain. M.R.I.’s turned up nothing more than a herniated disc or osteoarthritis. Both can be excruciating, but neither could account for the pains Judy felt all over her body. Her doctor prescribed narcotics, but even those didn’t help. It hurt to wash her face. It hurt to raise her arm. It hurt to sleep. It still does.
“If you touch my back, it feels like it’s all bruised,” she said. “Lately it’s felt like electroshocks.”
In March 2009, after four years of suffering, Judy finally found a new doctor who could name her ailment: fibromyalgia.
If there is a circle of purgatory that Dante forgot, it might be the one reserved for fibromyalgia sufferers. The problem isn’t just pervasive pain. It’s the challenge of having a condition that is not well understood. It doesn’t help that there is no objective medical test to confirm it — no blood test, no cheek swab, no X-ray — just a patient’s subjective reports. Nor does it help that there is no cure. Many physicians don’t want to be bothered with incurable patients.
If doctors don’t sympathize, why would friends? How do you explain to people that you have no broken bones or burns or even infections, yet your body hurts all over? You look fine, yet beg off work and social engagements. Are you a malingerer? Are you just trying to claim disability? Are you simply crazy? And why don’t you get better?
“Divorce is a big problem,” said Sharon Waldrop, head of the Fibromyalgia Association of Michigan.
And yet, this is a huge improvement over the situation a few decades ago. Until 1990, when the American College of Rheumatology published diagnostic criteria, fibromyalgia was routinely dismissed as the imaginary sufferings of hysterical, middle-age women.
Muhammad Yunus, a rheumatologist at the University of Illinois College of Medicine at Peoria, has been a pivotal figure in the field. He published the first scientific study describing clinical characteristics of the disease in 1981 and the first genetic linkage study in 1999. But when he expressed his initial interest in fibromyalgia in the late 1970s, his mentor discouraged him. “ ‘You will ruin your academic career by dealing with these crazy people,’ ” he said his mentor told him. “ ‘They’re women. They’re complainers. They’re lazy.’ ”
Today, research is validating their suffering, showing that people with fibromyalgia really do process pain differently. The syndrome is recognized by the World Health Organization, the Centers for Disease Control and Prevention, the American College of Rheumatology, the Arthritis Foundation, and the National Institute of Arthritis and Musculoskeletal and Skin Diseases. The Food and Drug Administration has approved three drugs to treat it — Lyrica, Cymbalta and Savella are the brand names — and fibromyalgia has its own diagnostic code for insurance forms.
“Insurance companies don’t have a code number for a disease unless it’s real,” said Dr. Mark Pellegrino, founder of the Ohio Rehab Center in Canton and the author of 15 books on fibromyalgia.
Doctors today have a much better idea of how to treat the ailment — not only with drugs, but also with exercise and measures to improve sleep. And though the suffering never totally goes away, it is possible to vastly reduce the pain and learn to cope with what remains.
Minnie Lee, 37, a financial planner in Playa Del Rey, Calif., is one who has managed successfully. Once bedridden with stabbing pains in her back, she now exercises regularly and has completed half a dozen triathlons. She even writes a fibromyalgia blog that offers encouragement to other sufferers.
Yet there are still rampant misconceptions, even among physicians.
“A year ago, a doctor told me only women had fibromyalgia,” said Randy Wold, 58, a drag racer and retired auto mechanic from Cypress, Calif., who has suffered from fibromyalgia since the early 1990s. Today he races his 1979 Z 28 Camaro and 1989 Pontiac Firebird with the logo for the National Fibromyalgia Association emblazoned on them and makes an announcement that if there is a man there with pain, he’s willing to talk. Without such support, he says, it can be hard for a man to get a diagnosis.
And no matter what gender the patient is, struggles with insurance companies are common. Lynne Matallana, president and founder of the National Fibromyalgia Association, says many members have complained that insurers make it difficult to receive the approved drugs for fibromyalgia.
“Since these drugs are new, there is no generic version,” she said. “But insurance companies often require that doctors prescribe generics first.”
As a result, patients have to demonstrate that they have failed to respond to cheaper drugs, prescribed off-label for fibromyalgia, before they get the ones that work best.
To Judy Robinson, such complaints are minor, compared with the stress and frustration of living with an undiagnosed disease.
Now that she has finally put a name to her ailment, she has found the right drug to treat it. Equally important, knowing the name of her condition has led her to her local fibromyalgia association, where she and Glenn have gotten emotional support and extensive information.
“Before this,” Glenn said, “I never really understood before what Judy was going through.”
I have to say I know exactly what this woman has been through, and I'm sure you do too. I love the reference to Dante's circles of purgatory, it's so true. I couldn't have said it better about not wanting to be touched. My husband can certainly empathize with her husband. Maybe there should be a support group for husbands, wives, and families of this disease. I am sure my husband could use someone to talk to who would understand,, like the support group I have. I too cringe at being touched. I used to love to snuggle. When we first met we would lay on the couch snuggled together for hours, just watching tv, my husband's arms around me. Now, I can't take the weight of his arm, it causes pressure. Pressue = pain. No, before you ask, sex is not an option. I've told my husband he can leave me, find someone who can give him the affection he craves, the physical needs he has. But, luckily for me this amazing man says our relationship has never been about the physical aspect.
I've also cried in the bathroom at work from the pain, slept in the stall from sleep apnea (before I was diagnosed), even fell asleep in the middle of a phone call with a customer, and broke my car in half in a total Dukes of Hazzard jump over 2 fences and a ditch. Landed in a cow pasture, luckily for me the cows were in the other pasture that day. Might have been cool to see, if I weren't sleeping. I wasn't hurt thank goodness, and neither were any cows. Unfortunately the gorgeous red firebird my brother gave me was broken in half, unrepairable. Sorry about that bro.
I did call Lilly Pharmaceuticals today and my application for prescription assistance was approved. This means cymbalta for free, what a relief. We have a limited insurance plan through my husband's work so it is not covered. And, with only him working we couldn't really afford it, but it helps with the pain. I missed a few days this week, because I was running out. I could barely crawl out of bed, I was so stiff and sore. This will cover me for a year. Every drug company is different. I know for a famiy of 2 I believe Lilly was a maximum of 44,000 a year. Which is pretty high. The website link is http://www.lillycares.com/index.jsp. The medication is shipped to your doctor. If your doctor is better than mine they may actually call and tell you it's there. Good thing I have an appointment tomorrow!
Today I recieved an email from a lovely woman in Ontario, Canada. She searched for neuropathy information and found my blog. She has been diagnosed with neuropathy but not has diabetes. The doctors do not know how she got neuropathy. I hope she doesn't mind if I show you this excerpt from her email:
"Have been struggling with this for about 7 years now. Doctors here don't seem to know how to treat this. I have been on many kinds of medications. (Lyrica, gabapentine, celebrex ect) nothing seems to work. At the moment I am on oxycodone 1 tablet 3 times a day. This is far from being enough. It doesn't even take 1/4 of my pain away. On a scale of 1 to 10 my pain is usually 9 ... I have told this to my neurologist but she doesn't think it is that bad. I am so frustrated with all these doctors. I totally understand their concern with addiction but I was told by a doctor at a pain clinic in Toronto that I would probably be married to narcotics for the rest of my life. The report was sent to the doctor who referred me to this clinic and yet she doesn't think I'm in that much pain."
This is part of my response:
"Unfortunately this is all too common for someone with a chronic pain condition. The most important thing I could tell her is not to give up.
The problem with the amount of pain we are in is it is pretty rare, something like 4-7% of neuropathy patients. So then doctors think we are drug seekers, at least the bad doctors. It sounds like you need a new neurologist. Don't give up because when it comes to chronic pain conditions usually you have to see many doctors before you find the right one. I found this link for you http://www.neuropathy.org/site/PageServer?pagename=phy_int_ca_ontario . Those doctors might be able to help. It is important to keep a pain diary. Include what u are capable of doing and not capable of doing. Make a list of what you need to ask the doctor. Unfortunately the frustration you are going through for someone in chronic pain is not abnormal. It is also not abnormal to have some fog, like short term memory problems. And, no depression is not uncommon. How can you be in so much pain all the time and not be depressed? My doctor put me on cymbalta and it helps with the pain too ..
Have any of the doctors run any tests on you like EMG or other neurological tests? "
Tomorrow is my turn for the doctor. Gotta stand up for myself, get a referral to a real neurologist. I also need to remember to call about my application to receive cymbalta for free. Must do that now before I forget again. Soft hugzzzz to all.
Also, please feel free to email me anytime. Any questions, concerns, frustrations, or if you just need to talk to someone who understands. You will find me at email@example.com. Also, I am on MSN chat under firstname.lastname@example.org. I look forward to hearing from you... chele
8 cups (half-gallon) of milk (I used whole milk, but I'm told you can use 2%, maybe next time)
1/2 cup store-bought natural, live/active-culture plain yogurt as a starter. I used plain Dannon yogurt.
1 packet plain gelatin
Plug in slow cooker and turn to low. Add the milk. Cover and cook on low for 2 1/2 hours. Turn off the slow cooker. Leave the cover on, and let it sit for 3 hours.
Scoop out 2 cups of the warmish milk and put it in a bowl. Whisk in yogurt and gelatin. Then dump the bowl contents back into the slow cooker. Stir to combine.
Put the lid back on the cooker. Keep it turned off, in fact I unplugged mine, and wrap a heavy bath towel all the way around the slow cooker for insulation.
Go to bed, or let it sit for 8 hours.
Line a colander with cheesecloth and put it over a bowl in the refrigerator. The extra moisture will drain off, thickening the mixture. Your yogurt will last for seven to 10 days. Save 1/2 cup as a starter to make a new batch.
Yogurt is excellent for an easy morning breakfast or a nutritious late night snack. Pair it with some fresh berries. I love this with some artificial sweetener and strawberries. I also like to put the yogurt with fruit in the blender for a smoothie to go.
Plus, the enzymes in live yogurt are terrific for your digestive system. I'm hoping if I eat some everyday it will help with my irritable bowel syndrome.
Tip 1 - make a list of items you have been meaning to ask, or mention to, the doctor, like I did.
Tip 2 - bring someone with you who will speak up for you when you won’t do it for yourself. Sometimes. I don’t mention something to the doctor because I forget, sometimes, I don’t for other reasons. I think it is an insecurity that comes with invisible illnesses like fibromyalgia and neuropathy. You don’t want to say something to the doctor for fear of them looking at you or just overall treating you like you are nuts (or even worse…. A hypochondriac!). For me this is my friend, and the big sister I always wanted, Nan. She’s a bulldog.
Here are some important questions to ask your doctor:
I have a doctor’s appointment this Friday with my PCP (primary care physician). In order to prepare myself for the appointment I have made one of my famous lists. No this one doesn’t remind me to take a shower, brush my teeth, or “scoop shit” as my truck driving husband so profoundly calls cleaning the cat litter box. This one is a lot more important. This is a list of the symptoms, questions, and problems that I need to discuss with the doctor. This is important for so many reasons. First, I forget to ask about symptoms or problems I’m having. For instance, I had an x-ray of my left shoulder last year. The x-ray was fine, so I just let it go. Of course it still hurts, but it’s hurt for so long I just take it as a part of my life. The problem with ignoring things is they just get worse. Not only does the shoulder hurt but when it is the worst, the pain goes all the way down the left arm to my finger tips making them number then usual. The problem is probably just a pinched nerve, and even more probably even an easier problem to fix rather than to ignore it for several YEARS as a part of life. Ridiculous, no?
Second, for about the past six months I am getting a scalp rash whenever my body believes I have overdone it. Now yesterday I did extremely little: I took a shower and gave the dog one with me. I have a seat in the shower so it is pretty easy, and she is extremely well behaved. Plus, she’s only 13 lbs so she doesn’t take too long! Then hubby and I ran to 3 stores to pick up groceries. I know it sounds crazy but soda is cheapest at the Dollar General, produce cheapest at Aldi, and meat has to come from either Publix or Sweetbay. We were home in an hour and a half and I used the electric cart at Publix which is very big in comparison to the other stores. Apparently my body thought I overdid it. So about one a.m. my scalp started feeling like there were bugs crawling on it, then a little scratching and then severly itchy. What I do when this happens is take a shower, conditioner and cold water help sooth the scalp enough so I can fall asleep. Now tonight, I can tell you already I overdid it. I should have made baked potatoes, but I had to get fancy and cut up potatoes to grill them. Also, I was determined to make my sugar free blueberry muffins before the blueberries went bad, and I have been promising my friend to make her cinnamon rolls for, well, about 6 weeks now. She bought splenda and a hot roll mix that long ago, and it is really easy to do. And, it’s her 25th wedding anniversary so when she asked me to do them I figured what the hell. The problem is I stood when I was cutting the potatoes and onions, I unloaded and loaded the dishwasher myself, standing, and made the rolls standing. I did pull the walker my husband brought home for me into the kitchen to do the muffins, it has a seat and he pointed out that it would make a good “stool” for when I am in the kitchen. I can tell you though my scalp is already starting to itch. *&*#^$#*&^$@ (krippers!!).
I also have to remember to tell him how stiff my neck and shoulders have been. I swear it doesn’t hurt, but it does feel like my head is attached to someone else’s neck and shoulders.
Lastly, I have to ask for a new neurologist recommendation. Can you believe I am not under the care of one? I have seen one at the medical center I go to. I can tell you this… I really like my primary care doctor. His name is Dr. Estupinan and he is a straight shooter. I am a pretty blunt person and like the same, especially from doctors. But, I don’t like the neurologist they have there at the medical center, and the medical center doesn’t like for you to change. I’m not going to give you the neurologist’s name as I don’t want to be sued, but I can tell you, two things. The neurologist is one of those type of doctor’s who when asked a question gives a non answer. Second, I am not the only patient who doesn’t care for him.
Ok, I’m really hurting badly so I am going to ask you to consider this part one of two. Tomorrow some tips and tricks for going to the doctor.
One of the problems with neuropathy is it not only damages your nerves, which in turn limit your activity with the affected areas. Limiting the activity weakens the muscles of the area. Here are some simple exercises that will strengthen your hands, feet, and ankles:
Exercises for neuropathy involving the hands and fingers
Don't undermine your worth by comparing
yourself with others,
It is because we are different that each
of us is special.
Don't set your goals by what other people
Only you know what is best for you.
Don't take for granted the things closest
to your heart
Cling to that as you would your life, for without
them life is meaningless.
Don't let your life slip through your fingers by living
in the past or the future.
By living your life one day at a time, you live all the
days of your life.
Don't give up when you still have something to give
Nothing is really over … until the moment
you stop trying.
Don't be afraid to admit that you are less
It is the fragile thread that binds us to each other.
Don't be afraid to encounter risks,
It is by taking chances that we learn how to be brave.
Don't shut love out of your life by saying it's
impossible to find.
The quickest way to receive love is to give love.
The fastest way to lose love is to hold on too tightly,
And the best way to keep love is to give it wings.
Don't dismiss your Dreams. To be without
dreams is to be without hope.
To be without hope is to be without purpose.
Don't run through life so fast that you forget
where you've been,
But also know where you're going.
Life is not a race, but a journey to be savored
every step of the way.
Posted by chelekell at 11:53 PM
Find yourself a little lacking in short-term memory? Me too! Here are some tricks I use…
I have to be honest and tell you that sometimes this really does suck. The last couple of days have been pretty rough. Saturday I wasn't feeling great I wanted to get things done around the house and help my friend hang a couple of pictures. I did extra chores and I helped her. That night I was in immense pain, nauseous, and exhausted. Also, whenever I overdo it my scalp breaks out in a very itchy rash. Sunday wasn't any better. Plus my neck has been incredibly stiff. I haven't been able to turn it in a week and a half. Today, I received my Unkers pain relief in the mail. (Thank you to my best friend Debbie) My husband dutifully spread it on my shoulders and neck. About 20 minutes later I could turn my head. But, about an hour later my right hand blew up. By blew up I mean my knuckles and fingers became swollen and extremely painful. I think I started crying because it felt like I had traded one pain for another worse one. As if my body said "oh no you don't". Unfortunately, my Unkers helps my muscles but not with the neuropathy.
You may be wondering if my hands are so bad why am I typing? To be honest, I'm not. I'm dictating. I have Dragon naturally speaking voice recognition software. I really like it. I can type e-mails, obvioalways can type my blog, I can even instant message. I am having a hard time with editing. The program takes a while to learn your voice. But I will figure it out eventually as with all things. That's it for now. I know it's not my usual post. But, I felt like I should be honest especially during this invisible illness awareness week. And, I'm not telling you this to feel bad for me. But, I do want you to to aware. After all. That's what this week is about. Today, I'll do something I really hate to do, I'll ask for help. I'll ask him my neighbor, friend, and sister I always wanted to come over do the dishes, unload the dishwasher and refill it, wash my hair, and help me make something to eat.
I found this article on About.com and really liked it so I thought I would share. I can especially relate to hyperalgesia (of course, I wouldn't have fibro if I didn't), tactile allodynia, paresthesia (the crawling is really grose,and creepy), voodoo doll pains (these are the ones I've had since I was a child), randomly roving pain, and rattling nerves. I think rattling nerves also comes when you are in a great deal of pain. For instance tonight, my hands are killing me, my toes are killing me, and everything in between hurts bad. This level of pain comes with extreme exhaustion and naseau. Email me and let me know which of these you have!
You hear a lot about "fibromyalgia pain," but really those of us with fibromyalgia (FMS) experience several kinds of chronic pain.
Medically speaking, only a few of the fibromyalgia-pain types I talk about here have actual names and definitions. But just as Eskimos have several words for snow, I feel like we need to have several ways to name, define and categorize our pain. I've created some of my own categories, based on my own experience and on conversations I've had with other fibromites. My hope is that understanding the medical terms will help us communicate better with doctors and other healthcare providers, while my categories will help you understand your illness and let you know you're not alone in feeling these things.
Types of Fibromyalgia Pain
The first 3 types of fibromyalgia pain are medically defined:
The next 4 types are my own creation, which will be obvious by their names. I don't recommend using these terms in a doctor's office (unless you want to be seen as crazy), but these labels may help you get to know your body's quirks, triggers, patterns, etc.:
•Knife in the Voodoo Doll
•Randomly Roving Pain
First, the medically defined types of fibromyalgia pain.
Hyperalgesia & Fibromyalgia
"Hyper" means excess and "algesia" means pain. Hyperalgesia is the medical term for pain amplification in FMS. Our brains appear to take normal pain signals and "turn up the volume," making them more severe than they would normally be.
Most of the drugs used for managing FMS pain are aimed, at least in part, at reducing hyperalgesia.
Allodynia & Fibromyalgia
A symptom that perplexes a lot of us, especially when it's new, is allodynia. That's what it's called when your skin hurts to the touch, and when mild pressure from clothing or gentle massage causes pain. A lot people describe allodynia as similar to a bad sunburn. Allodynia is a fairly rare type of pain -- other than FMS, it's only associated with a handful of conditions, including neuropathy, postherpetic neuralgia (shingles) and migraine. Allodynia is believed to be a hypersensitive reaction that may result from the central sensitization associated with FMS. The pain signals originate with specialized nerves, called nociceptors, that sense information about things like temperature and painful stimuli right from the skin.
Allodynia comes in 3 forms:
1.Tactile, which is pain from touch or gentle pressure
2.Mechanical, which is from something moving across your skin
3.Thermal, which is pain from heat or cold that's not severe enough to damage tissues
Some drugs that work for some people with allodynia include:
Some people also get relief from topical pain creams (capsaicin, Tiger Balm, Aspercreme, BioFreeze). Paying close attention to the way you dress can help alleviate allodynia as well.
If you have allodynia, massage therapy may make it worse. If you feel other aspects of your health would benefit from massage, be sure to discuss allodynia with your doctor and massage therapist and keep track of how treatments impact this symptom.
Painful Paresthesia & Fibromyalgia
Paresthesias are odd nerve sensations that can feel like crawling, tingling, burning, itching or numbness. Sometimes, these sensations can be painful. Paresthsias are also associated with peripheral neuropathy, chemotherapy drugs, multiple sclerosis and migraine.
Many common FMS treatments can help alleviate paresthesia-related pain, including selective serotonin reuptake inhibitors (SSRIs) and serotonin norepinephrine reuptake inhibitors (SNRIs). Some people also have good luck with vitamin B12, capsaicin cream, massage and acupuncture.
My Own Fibromyalgia Pain Categories
Once again, the following categories are not medically recognized -- they're things I came up with to fill a gap in how we classify different types of pain. They're intended to help you track symptoms, gauge effectiveness of treatments, and to let you know you're not alone.
Knife in the Voodoo Doll
Sometimes, out of nowhere, I'll get an intense stabbing pain that seems to cut through my body. I've also described this as a fireplace poker in the ribs or being impaled on a spear.
For me, the voodoo doll pain is often my body's early warning system -- it tells me that I need to stop what I'm doing and rest. Other times, I have no idea why it strikes. I generally get this pain in my chest or abdomen, but some people say they get it in other parts of the body. It can be so intense that it can double me over and make it hurt to breathe. It usually goes away as after a few minutes. I have no idea how to prevent this type of pain, other than by pacing myself. (If only I could find that darned doll....)
Randomly Roving Pain
This is one of those things that reminds you FMS just doesn't make a lot of sense. A lot of us get pain that migrates around the body, sometimes moving between certain places, sometimes striking in new areas. If you also have myofascial pain syndrome, it can be especially hard to tell randomly roving pain from the referred pain caused by trigger points.
For me, this pain responds to treatments about the same as hyperalgesia.
One 4th of July, when I was young, I hung onto a sparkler for too long and some sparks hit my hand. They caused tiny pin-pricks of pain almost identical to sensations I now get regularly. They make me jump, and scratching them triggers tactile allodynia. These sensations usually just last a few seconds. I have no idea what triggers them or how to prevent them.
Most people won't understand why I call this a type of pain, but I'm sure most fibromites will get it. Certain things tend to get my whole body on edge, jumpy, and feeling rattled. It makes me ache all over, and sometimes I get nauseous, dizzy and anxious. Things that rattle my nerves generally involve sensory or emotional overload, such as:
•Certain sounds (repetitive, loud, shrill, grating)
•Visual chaos (crowds, flashing lights, busy patterns)
•Stressful situations (busy traffic, confrontations, fibro-fog induced confusion or disorientation)
When my nerves are rattled, I try to get out of the situation as quickly as possible and relax, preferably somewhere quiet.
by Adrienne Dellwo, About.com
Updated: July 22, 2009
About.com Health's Disease and Condition content is reviewed by the Medical Review Board
I made these for dinner, and I should have taken a picture. They were delicious. Thanks to hubby for helping!
1 lb jumbo or large shrimp, peeled, deveined
1 lb bacon
3/4 c. apricot / pineapple preserves or jam
1 can pineapple chunks in juice
1/3 c juice from can of pineapple
2 tbsp soy sauce
veggies for kabob... onions, multi colored peppers
Soak bamboo skewers in water for 1 hr. This will keep wood from catching on fire. Lay bacon in pan, partially fry it. Light brown, but not cooked through all the way, it will finish cooking on the grill. Wrap shrimp with bacon. Easiest way is to wrap a piece of bacon around shrimp till ends of bacon overwrap, then cut bacon. Pierce shrimp with skewer, skewer will hold bacon on the shrimp. Alternate shrimp, onion, pineapple, pepper, repeat. You will probably be able to get several of each on one skewer. I did make some for hubby with no veggies or pineapple, just the shrimp.
Glaze: mix jam with pineapple juice and soy sauce.
I let my kabobs marinate in the glaze while I lit the grill, and let the charcoals burn. So, about 1/2 an hour. Grill about 5 mins each side or until shrimp are pink.
I am really loving this website stumbleupon.com! I found more information on painful diabetic neuropathy on this one site than I have been given from my Doctors in a year.
Neuropathy or nerve damage due to diabetes can present as insensate neuropathy (sensory loss) or painful neuropathy. The majority of people have the insensate type and the consequences and management of this are discussed extensively in this web-site. However approximately 4-7% of patients with diabetes suffer chronic, often distressing symptoms of pain, pins and needles or numbness in their feet.
Why do people get painful neuropathy?
This question is yet to be fully answered and is the subject of ongoing research. People with poorly controlled diabetes for a long time are more likely to get chronic painful neuropathy. However, many patients with relatively well controlled diabetes also develop it.
Painful symptoms can be transient, eg less than 12 months duration. These symptoms are often associated with periods of high blood glucose levels, or paradoxically, when the blood glucose level rapidly improves. In these acute situations, once the blood glucose has stabilised for a few months, the symptoms often spontaneously disappear.
Once symptoms have persisted for more than 12 months, they are less likely to disappear on their own. Although good blood glucose control is important for many reasons, striving for very tight blood glucose control is less likely to make the painful symptoms get better when they have been present for this length of time.
A number of theories have been suggested as to why chronic pain or symptoms develop. It is thought that: