OnGoing Pain
Posted by Kelli on March 2nd, 2010
Posted by Kelli on March 2nd, 2010
Posted by Kelli on February 17th, 2010
International Women’s Day 2010 in Toronto The Power of Us: A Celebration of Women Join renowned youth activist Jessica Yee and celebrated Canadian artist and performer d’bi young for a special evening to celebrate International Women’s Day 2010. Tickets are $17.50 through UofTtix via 416-978-8849 or @ uofttix.ca
DATE:
Monday, March 8, 2010
TIME:
7 p.m. – 9 p.m.
TICKETS:
Tickets are also available at Women’s College Hospital, Ankh Gift Shop for $15 (cash and pickup only).
LOCATION:
Metro-Central YMCA
20 Grosvenor St., Toronto
(East of Bay Street, north of College Street)
Posted by Kelli on February 17th, 2010
Sexuality & Arthritis:
Problems pertaining to intercourse
[First a note: the source is the Canadian Arthriits Society who is a source of information all many form of arthritis & Fibromyalgia, in Canada, is considered one for these purposes..]
Adapted sexual positions
A number of problems involving joint pain are of purely mechanical origin, with the result that they can be solved by using coital positions that are more comfortable for the partner with arthritis.
Although we live in an era of sexual liberation, most couples use only one or two traditional positions. The positions illustrated below ( Figures 1 to 8 ) may help people with arthritis of the hip, knee, back or shoulder.
Like the oral and manual techniques discussed below, these positions are common manifestations of human sexual activity. However, you should try only those you and your partner are comfortable with. Most bookstores sell well-designed, illustrated books on sexual positions. These books can help you vary your positions and find those that suit you. Using cushions to support the joints enhances the comfort of the person living with arthritis comfort.
Man with back and hip problems
Side-by-side position with front entry.▼

Man on his back. The woman squats over him, facing him or with her back to him, and supporting her own weight. Useful in the presence of back problems, but also if the man is unable to support his weight with his arms and shoulders. ▼

Problems on one side only.Front entry.▼

Woman with problems in the lower limbs, especially the hips.
Side-by-side position with rear entry.▼

If the woman is unable to move her legs apart. Note that the man supports his own weight. Front entry.▼

If the woman has severe hip and knee contractures. Rear entry.▼

Standing position, with a piece of furniture providing support. Rear entry.▼

Kneeling position with rear entry. To be avoided in the presence of shoulder pain.▼

Reproduced with permission
Other methods of stimulation
Pain and the impact of the disease may be too severe for a mere change of position to eliminate the discomfort.
For many couples, manual or oral stimulation of the genitals is acceptable and satisfying. If the pain and the impact of the disease to the hand are too severe, using a vibrator can help. The use of these alternatives should be in line with both partners’ feelings and beliefs.
If there is no partner, self-stimulation is a common practice for meeting sexual needs. According to statistics, 92% of men and 62% of women practice self-stimulation, without suffering the harmful consequences promulgated by certain myths during the Victorian era!
Source: The Canadian Arthritis Society
Posted by Kelli on January 24th, 2010
Some days are pretty easy days. Nothing major to do around the house; no laundry, no vacuuming, no chores to run. You got to take it easy; making a dozen simple phone calls, doing a bit of prep for tomorrow’s dinner, surfing the web doing casual research, and so on.. With no major pain, no cramps or seizing, and no other real fibro symptoms. So at the end of your day after relaxing by watch your favourite show or two, you get up setting the dishwasher to go and turning out lights wishing every one a good night on the way to bed.
You are all well and good until you decide to dump yourself into bed. Bad move. Crashing into bed like that, so suddenly with everything finally completely relaxing at once and your walls are down, the onslaught of sensation is overwhelming.
It is at this point you realize there is no real “easy” day. Some days the pain is not so bad & on some of those days, we handle it better and think we are ok for a bit.
It is that time at the end of that “easy” day that you know you will always have some pain each and every day. Some days it’s nasty, some not so bad and some days we can handle it better than others – either emotionally, physically or with the help of medicine. We will always have pain, but we also look forward to tomorrow for another “easy” day. We also realize that while yes, we have pain each and every day but we also get through it each and every day. We survive and even thrive despite this disease and what it does to our minds and bodies.
We are strong.
This post started one way in my head at 1am but my fingers decided differently. If & when my mind and fingers ever decide co-operate, I will get to that post that I meant to do. Hopefully it doesn’t stay in my head all night half written *laugh*
Posted by Kelli on January 21st, 2010
An Exerpt from
Tennis Ball Massage for Fibromyalgia Pain
A Fibro Tip
by Tami Brady
Mar 2, 2009
An Inexpensive Massage for Fibromyalgia Sufferers
Regular massages are extremely useful tools for Fibromyalgia pain management. The problem is that often such treatment is not readily available or the costs are simply beyond the reach of the average person`s budget. In these cases, the tennis ball massage is an inexpensive and somewhat useful alternative.
The tennis ball massage is easy to do. Simply take a tennis ball and rub it back and forth around the area of the painful muscle. If the pain is on the surface, gently rub the ball over that location. If the pain is deeper, use a bit of pressure.
It is important to never push hard enough to cause damage. If the amount of pressure exerted causes more pain or sharp pain, then immediately reduce the pressure. This localized massage is meant to help not cause more pain. In this way, if it causes more discomfort, stop using this method immediately.
Tennis Ball Massage for the Back
The tennis ball massage works very well for muscle groups that are easy to reach. Places like the back can be a bit tricky, especially for self-massage. The best solution for these problem areas is finding a support like a wall or the floor. Then, the tennis ball can be placed between the wall or floor and the body part. Automatically, any body movement also moves the ball and the amount of pressure can be easily modified as desired.
Massage is wonderful for relief of localized muscle pain associated with Fibromyalgia. However, often having regular treatment is not a viable option. The tennis ball massage can be an inexpensive alternative.
To read the entire article, go to Tennis Ball Massage for Fibromyalgia Pain: Fibro Tip
Posted by Kelli on January 21st, 2010
They just don’t get it
How to explain chronic fatigue syndrome & Fibromyalgia to friends and family
By Kelli Ellis
Not having support from your family and friends will put a strain on these relationships impacting your stress level which can affect greatly both negative and positive on your health. Explanations need to be simple and straightforward. Tell someone about fibro without all the jargon so that healthy peoples eyes don’t glaze over two minutes into a conversation. You do not have to explain in extreme detail to produce an accurate picture or evoke an appropriate response.
Without a good explanation many people perceive persons with Fibro & CFS as not being sick but to be thought of as “lazy,” “a hypochondriac” or a “whiner.” We are none of these.
Here are several descriptions:
What healthy people need to realize is that, we don’t want to be this way and if we could change it, we could. Would I trade living day after day in pain & exhaustion, taking seemingly limitless amount of medications for a healthy body but a 10 work day, 6 days a week with no meds?? God! Yes!
While we may “look” healthy, that does not mean we are feeling healthy. For women, makeup can hide a multitude of sins, including pale skin, tainted skin colour, bags under the eyes, and a general lackluster. Clothing choices and the way one presents oneself may no be for show, but for need. I may not use my cane cut it would be too painful in my shoulders to use it, but it does not necessarily mean I feel well.
Well meaning friends and support people have said “I’ve had that too!” And they may have, for a few hours, waking up improved the next day and well the day after. But it truth, No, she or she has not. They have bouts of being tired or sore from whatever over exertion they experience. They do not deal with the chronic day after day extreme fatigue, pain and many other accompanying symptoms and syndromes. They think think they know because of one day’s experience – they don’t.
There are some who believe that because we with FM do not follow their well meaning advice, that it is our own fault we are sick. Horse-pucky! Don’t put that BS guilt trip on anyone, let alone a fibromite. The last thing a person with FM needs is to feel blamed for being ill. It is not our fault.
Some tips when discussing fibro and what it is: Be honest. Beware of your audience – what a 10 year old understands, an adult may dismiss. Do not use excessive jargon – the biggest word should be fibromyalgia not neurotransmitters. Know what symptoms you what to emphasize. Recognize how much, if anything, they want to learn.
For those who would be interested in further explanations, there are many resources around. To start, I recommend the “Spoon Theory”.The author has lupus, a sibling condition with many overlapping symptoms.
Another resource is “the Letter to Normals”.
If you have any other suggestions, please feel free to post them here or email me.
“I have treated more than 2,000 AIDS and CFS patients in my career. And the CFS patients are MORE sick and MORE disabled every single day than my AIDS patients are, except for the last two months of life!”
– Dr. Marc Loveless
(infectious disease specialist and head of the CFS and AIDS Clinic at Oregon Health Sciences University, in Congressional Testimony, CFS Awareness Day, May 12, 1995)
Posted by Kelli on December 21st, 2009
Coping With The Holidays
By Kelli Ellis
I am my own worst enemy. Like many others with Fibromyalgia and Chronic Fatigue, I find the holidays a highly stressful and painful time of year instead of the joyful and happy time it should be. I am too focused on the perceived expectations of others instead of the reality of my limitation and restrictions.. I know many of us want to accomplish what our bodies are simply not capable of, so we have to adjust our outlook and re-evaluate our priorities. The holidays are all about spending time with those we love most – keeping time and energy for what we hold most precious and dear. Doing so will help reduce the stress and thus the pain and emotional issues that crop up at Christmas.
Pace Yourself..
When you think “I’ll just visit 1or 2 more shops, go up 1 or 2 more aisles, wrap 1 or 2 more presents, bake 1 or 2 more trays of cookies or do that 1 or 2 more things.” – Don’t! Stop before you get to that tired or hurt point. Don’t deal with a fibro or cfs flare, prevent one.
Decorate, but not too much..
Have a smaller tree with few decorations. I have invited over the nieces in past and we made an afternoon of putting up the tree. Have someone put up the outdoor lights. Get a nativity scene that is pre-made as one unit and/or lightweight, so you don’t have to lug many pieces. I have a smaller plastic Precious Memories one (which the kids love to play with) and a small water fountain of Joseph, Mary & baby Jesus.
Celebrate
Choose carefully to go only to 1 or 2 holiday parties, don’t accept every invite. If you can, spend time with those you hold dear, not those who will cause stress. Plan ahead how long you plan to stay and stick to it. Always keep a supply of regular meds on hand, in case.
Delegate
Pass on some of the holiday chores to others so that while everyone shares the joy, they also share responsibility.
Cooking
Share these responsibilities or making an easier selection. Do a pot luck dinner. Choose a one dish dinner to limit the number of dishes. Choose easier recipies. Prep or make whatever can be done beforehand and refridgerate or freeze. Keep to your normal eating habits as much as possible & do not overdo it on sweets and other foods.
Baking
Do a holiday cookie/snack exchange. Bake cookies in stages – many recipes require overnight in the fridge. Cheat – buy your cookies.. I know, not the same, but nothing’s the same anymore, is it?
Shopping
Online/catalogs/mail order gifts. Gift cards & gift certificates. Plan ahead, make a list & write it down. Organize your trips into several short shopping trips. Shop in the morning, or later in the evening when the crowds are thinner. Start early – once I started on Dec 26th. Take regular breaks to rest. if you use a mobility device (cane, crutches, walker), take it with you even if you don’t need it yet Use a shopping cart for stability, to carry parcals & outterwear. Use a coat check if your mall has one so you don’t have to worry about your jacket. Get salespeople for help if you can find them. Always keep a supply of regular meds on hand, in case.
Wrapping Presents
Wrap using gift bags & tissue paper. Take advantage of on-site wrapping services – many are for charity.
Holiday Cards
Do them well ahead of time like October or November, Make labels so you’re not writing address after address, if even it’s ony the return address.
Above all – KISS! Keep It Sweet and Simple!
Posted by Kelli on November 11th, 2009
Prescription Painkiller Addiction: 7 Myths
Experts Debunk Myths About Prescription Pain Medication Addiction
By Miranda Hitti
Reviewed by Louise Chang, MD
Prescription pain medicine addiction grabs headlines when it sends celebrities spinning out of control. It also plagues many people out of the spotlight who grapple with painkiller addiction behind closed doors.
But although widespread, addiction to prescription painkillers is also widely misunderstood — and those misunderstandings can be dangerous and frightening for patients dealing with pain.
Where is the line between appropriate use and addiction to prescription pain medicines? And how can patients stay on the right side of that line, without suffering needlessly?
For answers, WebMD spoke with two pain medicine doctors, an expert from the National Institute on Drug Abuse, and a psychiatrist who treats addictions.
Here are seven myths they identified about addiction to prescription pain medication.
1. Myth: If I need higher doses or have withdrawal symptoms when I quit, I’m addicted.
Reality: That might sound like addiction to you, but it’s not how doctors and addiction specialists define addiction.
“Everybody can become tolerant and dependent to a medication, and that does not mean that they are addicted,” says Christopher Gharibo, MD, director of pain medicine at the NYU Langone Medical School and NYU Hospital for Joint Diseases.
Tolerance and dependence don’t just happen with prescription pain drugs, notes Scott Fishman, MD, professor of anesthesiology and chief of the division of pain medicine at the University of California, Davis School of Medicine.
“They occur in drugs that aren’t addictive at all, and they occur in drugs that are addictive. So it’s independent of addiction,” says Fishman, who is the president and chairman of the American Pain Foundation and a past president of the American Academy of Pain Medication.
Many people mistakenly use the term “addiction” to refer to physical dependence. That includes doctors. “Probably not a week goes by that I don’t hear from a doctor who wants me to see their patient because they think they’re addicted, but really they’re just physically dependent,” Fishman says.
Fishman defines addiction as a “chronic disease … that’s typically defined by causing the compulsive use of a drug that produces harm or dysfunction, and the continued use despite that dysfunction.”
For instance, someone who’s addicted might have symptoms such as “having drugs interfere with your ability to function in your role [or] spending most of your time trying to procure a drug and take the drug,” says Susan Weiss, PhD, chief of the science policy branch at the National Institute on Drug Abuse.
“Physical dependence, which can include tolerance and withdrawal, is different,” says Weiss. “It’s a part of addiction but it can happen without someone being addicted.”
She adds that if people have withdrawal symptoms when they stop taking their painkiller, “it means that they need to be under a doctor’s care to stop taking the drugs, but not necessarily that they’re addicted.”
2. Myth: Everyone gets addicted to pain drugs if they take them long enough.
Reality: “The vast majority of people, when prescribed these medications, use them correctly without developing addiction,” says Marvin Seppala, MD, chief medical officer at the Hazelden Foundation, an addiction treatment center in Center City, Minn.
Fishman agrees. “In a program where these prescription drugs are used with responsible management, the signs of addiction or abuse would become evident over time and therefore would be acted on,” says Fishman.
Some warning signs, according to Seppala, could include raising your dose without consulting your doctor, or going to several doctors to get prescriptions without telling them about the prescriptions you already have. And as Weiss points out, being addicted means that your drug use is causing problems in your life but you keep doing it anyway.
But trying to diagnose early signs of addiction in yourself or a loved one can be tricky.
“Unless you really find out what’s going on, you’d be surprised by the individual facts behind any patient’s behavior. And again, at the end of the day, we’re here to treat suffering,” says Fishman.
Likewise, Weiss says it can be “very, very hard” to identify patients who are becoming addicted.
“When it comes to people who don’t have chronic pain and they’re addicted, it’s more straightforward because they’re using some of these drugs as party drugs, things like that and the criteria for addiction are pretty clear,” says Weiss.
“I think where it gets really complicated is when you’ve got somebody that’s in chronic pain and they wind up needing higher and higher doses, and you don’t know if this is a sign that they’re developing problems of addiction because something is really happening in their brain that’s … getting them more compulsively involved in taking the drug, or if their pain is getting worse because their disease is getting worse, or because they’re developing tolerance to the painkiller,” Weiss says.
“We know that drugs have risk, and what we’re good at in medicine is recognizing risk and managing it, as long as we’re willing to rise to that occasion,” says Fishman. “The key is that one has to manage the risks.”
3. Myth: Because most people don’t get addicted to painkillers, I can use them as I please.
Reality: You need to use prescription painkillers (and any other drug) properly. It’s not something patients should tinker with themselves.
“They definitely have an addiction potential,” says Gharibo. His advice: Use prescription pain medicines as prescribed by your doctor and report your responses — positive and negative — to your doctor.
Gharibo also says that he doesn’t encourage using opioids alone, but as part of a plan that also includes other treatment — including other types of drugs, as well as physical therapy and psychotherapy, when needed.
Gharibo says he tells patients about drugs’ risks and benefits, and if he thinks an opioid is appropriate for the patient, he prescribes it on a trial basis to see how the patient responds.
And although you may find that you need a higher dose, you shouldn’t take matters into your own hands. Overdosing is a risk, so setting your dose isn’t a do-it-yourself task.
“I think the escalation of the dosage is key,” says Seppala. “If people find that they just keep adding to the dose, whether it’s legitimate for pain or not, it’s worth taking a look at what’s going on, especially if they’re not talking with the caregiver as they do that.”
4. Myth: It’s better to bear the pain than to risk addiction.
Reality: Undertreating pain can cause needless suffering. If you have pain, talk to your doctor about it, and if you’re afraid about addiction, talk with them about that, too.
“People have a right to have their pain addressed,” says Fishman. “When someone’s in pain, there’s no risk-free option, including doing nothing.”
Fishman remembers a man who came to his emergency room with pain from prostate cancer that had spread throughout his body. “He was on no pain medicine at all,” Fishman recalls.
Fishman wrote the man a prescription for morphine, and the next day, the man was out golfing. “But a week later, he was back in the emergency room with pain out of control,” says Fishman. “He stopped taking his morphine because he thought anyone who took morphine for more than a week was an addict. And he was afraid that he was going to start robbing liquor stores and stealing lottery tickets. So these are very pervasive beliefs.”
Weiss, who has seen her mother-in-law resist taking opioids to treat chronic pain, notes that some people suffer pain because they fear addiction, while others are too casual about using painkillers.
“We don’t want to make people afraid of taking a medication that they need,” says Weiss. “At the same time, we want people to take these drugs seriously.”
5. Myth: All that matters is easing my pain.
Reality: Pain relief is key, but it’s not the only goal.
“We’re focusing on functional restoration when we prescribe analgesics or any intervention to control the patient’s pain,” says Gharibo.
He explains that functional restoration means “being autonomous, being able to attend to their activities of daily living, as well as forming friendships and an appropriate social environment.”
In other words, pain relief isn’t enough.
“If there is pain reduction without improved function, that may not be sufficient to continue opioid pharmacotherapy,” says Gharibo. “If we’re faced with a situation where we continue to increase the doses and we’re not getting any functional improvement, we’re not just going to go up and up on the dose. We’re going to change the plan.”
6. Myth: I’m a strong person. I won’t get addicted.
Reality: Addiction isn’t about willpower, and it’s not a moral failure. It’s a chronic disease, and some people are genetically more vulnerable than others, notes Fishman.
“The main risk factor for addiction is genetic predisposition,” Seppala agrees. “Do you have a family history of alcohol or addiction? Or do you have a history yourself and now you’re in recovery from that? That genetic history would potentially place you at higher risk of addiction for any substance, and in particular, you should be careful using the opioids for any length of time.”
Seppala says prescription painkiller abuse was “rare” when his career began, but is now second only to marijuana in terms of illicit use.
Exactly how many people are addicted to prescription painkillers isn’t clear. But 1.7 million people age 12 and older in the U.S. abused or were addicted to pain relievers in 2007, according to government data.
And in a 2007 government survey, about 57% of people who reported taking pain relievers for “nonmedical” uses in the previous month said they’d gotten pain pills for free from someone they knew; only 18% said they’d gotten it from a doctor.
Don’t share prescription pain pills and don’t leave them somewhere that people could help themselves. “These are not something that you should hand out to your friends or relatives or leave around so that people can take a few from you without your even noticing it,” says Weiss.
7. Myth: My doctor will steer me clear of addiction.
Reality: Doctors certainly don’t want their patients to get addicted. But they may not have much training in addiction, or in pain management.
Most doctors don’t get much training in either topic, says Seppala. “We’ve got a naive physician population providing pain care and not knowing much about addiction. That’s a bad combination.”
Fishman agrees and urges patients to educate themselves about their prescriptions and to work with their doctors. “The best relationships are the ones where you’re partnering with your clinicians and exchanging ideas.”
Source: http://www.webmd.com
Posted by Kelli on November 7th, 2009
New CFS Blog…
http://standup2me.blogspot.com/