Feeling Like Dr. Jekyll & Mr. Hyde With Chronic Illness

Personality changes are common among people with chronic illness. Because of chronic pain, extreme fatigue and exhaustion and just the severity of the illnesses can take a real toll on patients mentally along with physically.

I personally feel like Dr. Jekyll & Mr. Hyde and I’m sure that many people over the years have wondered who the real Sandy is because of this. I have always basically been an upbeat, happy person who smiles big and loves life and gets really excited about new adventures. But when I am having a bad day or a severe flare, I need to be left alone. I don’t want to talk to anyone, I don’t want anyone around me, and I am not very friendly. Every little thing annoys me and I become a recluse. Going back to work a few hours a week has helped this somewhat because it forces me to get out but it can be very difficult working with the public when I am having a CFS, Fibromyalgia and/or IC Disease flare.

I have always felt like I needed to hide how bad I really feel and, as long as I am not feeling extremely bad, I can usually put on a smile, turn on the charm and do what I need to do while I’m in public.   Once I get in my car or get home, I burn out and there’s nothing left.  I try to put on a happy face at home, especially for my son, but there are times when that’s not even possible.  I can say just one word to my son and he will know I’m not well.  He will say, “I can tell you’re sick, Mommy.  Your voice sounds funny”. 

Back when I first became sick, I learned how to force feeling well and acting well because I believed that if I pretended that I was healthy, I would become healthy.  Now after being sick 20 years, I know that thinking myself well is only making me more exhausted and sicker some days because it takes a lot of energy to try and be  like the person I am when I feel well.  I can’t seem to stop doing it, however.  I think it’s because when I am having a really bad day and it’s noticeable to others, I don’t like the attention.  I don’t like hearing that I look bad, tired, sick, exhausted and all of the other comments that I get.

Even around my family (parents, in-laws, etc.) I will try to hide how I feel a lot of the time when I am around them.  I will turn on the smiling face, try to crack a few jokes while the whole time I just want to be in bed because my body is screaming for me to go there.  When I know that I am too bad off to be able to fake it, I just stay away.  I know it’s hard for them to understand and none of them possibly can because they don’t live in my body. 

Personality changes because of chronic illness affect our daily lives and relationships with family and friends.  How have you learned how to cope with your Dr. Jekyll and Mr. Hyde times?  Let me know in the comments!

Are You Getting the Flu & H1N1 Vaccine?

I am curious to know if any of you readers out there with CFS, Fibromyalgia, IC or another chronic illness has gotten the H1N1 vaccine.  I took my son to get it because of his age and the fact that H1N1 is going around the local schools but I didn’t get it myself.   I normally don’t get the seasonal flu shots either but I did get it this year just because I was already at the doctor’s office for my sinus and ear fluid issues and they said they would give me one.  I have always been afraid to get the seasonal flu shot due to the fact that it can cause flares with our CFS and FM symptoms.  As far as I know, I didn’t have any problems with this flu shot but I’ve been so sick from my sinuses I guess I probably wouldn’t know anyhow if the vaccine was causing me problems.

I have read different theories on whether or not it is safe for us to get the flu vaccine and/or the H1N1 vaccine and it really has to be a personal decision and your doctor should be consulted if you’re not sure.  We each have to decide for ourselves whether or not we fear getting a reaction from the vaccine in the form of a flare, or whether getting the illness itself will take more of a toll on our bodies.

Personally, even though I normally don’t get the flu vaccine, I would fear getting the flu or H1N1 more than I would fear flares from the vaccine.  In my own situation, getting the flu, a cold, or any type of seasonal sickness, causes total havoc with my body and it takes me an extremely long time to recover.

Have you gotten the flu vaccine or the H1N1 vaccine yet this year?  Do you plan to get it?  Let me know in the comments!

ME/CFS & Fibromyalgia Around the Web

Weathering the Flu With Fibromylaiga or Chronic Fatigue Syndrome

I think we all know a few people who’ve been hit with the flu this year, both the seasonal one and H1N1 (swine flu). It’s kind of a no brainer that the flu would hit those of us with fibromyalgia and chronic fatigue syndrome harder than it does most people — what doesn’t?

About.com: FM & CF

Cupar woman writes fairytale to raise ME awareness

A CUPAR woman has written a fairytale to help publicise a national campaign. Andrea Mardon penned ‘The Princess and the Ogre’ to encourage donations to the ‘Just Four Quid’ appeal in aid of biomedical research into ME, or chronic fatigue syndrome.

Fife Today

5 Steps to Fight Chronic Fatigue

Chronic fatigue syndrome (CFS) can leave you feeling unmotivated and devoid of energy. However, there are several steps you can take in everyday life to combat your fatigue and regain your energy. Regular participation in mild to moderate physical activity prevents deconditioning, improves the ability to cope and reduces the risk of other health problems, such as heart disease. It’s especially important, however, for individuals with CFS to avoid overexertion because excessive physical activity may worsen the condition.

iVillage Health

Fibromyalgia treatment needs more research

Dear Dr. Gott: The recent article on the difficulty in treating fibromyalgia (FM) reinforces the urgency in making available sibutramine hydrochloride monohydrate (Meridia) to FM sufferers. Some doctors have found it to be successful in treating this widespread disorder. An 83 percent success rate was noted in an article in the September 2002 issue of Arthritis and Rheumatism journal. The article concluded that “controlled, prospective, long-term studies are needed to further evaluate the clinical utility of sibutramine in the treatment of fibromyalgia.” FM sufferers who read your column may want to consult their doctors about this medication.

The Times News

More on XMRV as possible cause of fibromyalgia and chronic fatigue

XMRV is believed by the researchers to be a possible cause of chronic fatigue and fibromyalgia, but also some forms of autism. It is a “simple” retrovirus, therefore treatable. Research is already underway for determining causality and possible treatments, based on AIDS research and drugs developed to date. Here, Dr. Judy Mikovits, the lead researcher, and Annette Wihittemore, founder, of the Whittemore Peterson Institute, discuss this research.

Politics In the Zeros

Changes in Hippocampal Metabolites After Effective Fibromyalgia Treatment

The Clinical Journal of Pain just published a case study that evaluates the impact of fibromyalgia on hippocampal brain metabolite ratios. Researchers at the Department of Family Medicine, Anesthesiology and Psychiatry at Louisiana State University’s Biomedical Research Institute based this case study on the results of previous studies that used single voxel magnetic resonance spectroscopy (1H-MRS) to reveal an association between fibromyalgia and disruptions in hippocampal brain metabolite ratios in fibromyalgia patients with no psychiatric conditions.

Fibromyalgia Research Blog

Musculoskeletal manifestations in patients with malignant disease

To detect and describe the incidence of musculoskeletal manifestations in different malignant diseases as well as their relation to the treatment received whether by chemotherapy or radiation therapy. Sixty patients with different malignant diseases were included in this study, 45 with solid tumors and 15 patients with hematological malignancy.

Springer Link

HealthyWomen Raising Profile of Fibromyalgia Pain

Fibromyalgia isn’t typically what comes to mind when you talk about women’s health, but about 96% of us who have it are women. On top of that, researchers are learning more about gender differences and pain in general, which point to far more pain problems in women than in men.

About.com

Is it just me? Forgetting Just How Bad the Pain Can Be

Some­times, even after over a decade with fibromyal­gia, I have to be reminded just how bad things can get. Some­times, I for­get how every­thing can hurt. Some­times, I am sur­prised by how quickly the pain flares up. Some­times, I am pleas­antly sur­prised by how quickly the pain fades away. Today is not that day.

My Life With Fibro

Putting the Holidays Into Perspective With ME/CFS & Fibromyalgia

Tuesday as I was driving home from work, the radio announcer mentioned that there are only 40 days left until Christmas and I immediately felt myself start to panic and stress.   It has been a really rough few months and I haven’t even started or began to start thinking about Christmas shopping and everything else that goes along with the holidays.  Once I heard that announcement, however, my old Type-A personality kicked in and I started thinking to myself everything I needed to do:  shop, wrap presents, make Christmas cookies, put up the Christmas tree, send out Christmas cards, plan a Christmas day meal – you all know the routine us women put ourselves through.

Then while my heart was beating faster, and I was imagining another major CFS flare happening because of the holidays, I had a lightbulb moment.  Why am I getting so stressed out?  Who says that we have to do all of these things we wear ourselves out over year after year?  Who says you have to bake cookies?  Who says you have to buy gifts and worry about getting them wrapped?  Who says you have to mail out Christmas cards?  The older I get, the more I start to realize that all of these things are what we’ve been conditioned to do because somewhere, someone told us that these were all things that have to be done in order to enjoy the holiday season.

This year instead of buying a bunch of gifts, I’m giving gift cards.  If I do give a gift, it’s going in a gift bag with tissue paper.  If it’s that important for Christmas cards to be sent out, my husband can do it.  We can go out to eat instead of me working for two days in the kitchen and having myself worn out from trying to prepare the perfect Christmas meal. 

To me, Christmas is about seeing my son happy and enjoying the holiday and if that means I have to give up a lot of other stuff so I can enjoy him that day, then so be it.  It’s just not worth it anymore to me to do all of this stuff that doesn’t do anything but make me sicker.  I have talked with  a lot of CFS & Fibromyalgia patients and it doesn’t surprise me how many do not enjoy the holiday season.  While Christmas is supposed to be about celebration, family, joy and love, for us sick ones it becomes more about stress, flares, and complete exhaustion.

I don’t want to feel that way anymore.  While I always enjoy my son’s enthusiasm and love of Christmas, I want to really feel that for once.  I don’t want to be so exhausted that all I can think about on Christmas morning is how I can’t wait for the next few days so that I can do nothing but rest and recover.  I don’t want those feelings this Christmas or future ones to come. 

So if you are getting stressed out and feel a flare looming because of everything you think you have to do for the holidays, just remember this post and that you don’t HAVE to do a lot of it.  There are ways to make all of these traditions we put ourselves through every year a lot easier and we deserve to enjoy the holiday season thoroughly!

ME/CFS & Fibromyalgia Around the Web

Hemispherx Biopharma responding to FDA’s Ampligen questions

Hemispherx Biopharma said Monday its plans to “complete all outstanding queries” from the Food and Drug Administration regarding the company’s new drug application for Ampligen this month and next. The Philadelphia biotechnology company is seeking approval to market Ampligen as a treatment for chronic fatigue syndrome.

Philadelphia Business Journal

Editorial: Researcher’s discovery gives new hope to Chronic Fatigue sufferers

The importance of the discovery of a retrovirus that may be the cause of Chronic Fatigue Syndrome by a researcher at the Whittemore-Peterson Institute at the University of Nevada cannot be overstated. The discovery, reported in the journal Science earlier this month and detailed by the Reno Gazette-Journal’s Lenita Powers on Page 1 of today’s newspaper, is of critical importance to the one million Americans who are believed to have the disease, of course.

RGJ.com

PatientsLikeMe Adds Online Community For People With Chronic Fatigue Syndrome

PatientsLikeMe, the leading online community for people with life-changing conditions, announces the expansion of its fibromyalgia community to welcome patients with chronic fatigue syndrome (CFS), also know as myalgic encephalomyelitis (ME). By sharing information about their experience with CFS, patients can now find others just like them, including other patients who may have the newly discovered xenotropic murine leukemia virus-related virus (XMRV). The purpose of this expansion is for PatientsLikeMe to research the impact XMRV has on CFS patients.

MediLexicon News

Medical breakthrough puts Reno in spotlight

Judy Mikovits remembers that “eureka” moment when she realized that she and her team of researchers at the Whittemore-Peterson Institute in Reno had discovered a new retrovirus that could lead to a possible treatment, even a vaccine, to combat Chronic Fatigue Syndrome.

RGJ.com

Chronic Fatigue Patients: No Longer Fakes?

In 1982, Cynthia Toussaint, a 21-year-old North Hollywood, Calif., ballerina and actress, had a hamstring injury that wouldn’t heal. Her leg pain was so severe, it was like “being doused with gasoline and lit on fire.” As her symptoms grew worse, the muscles spasms contracted her right arm and leg so tightly that her limbs “folded up.”

ABC News

Superfood Profile: Discover the Many Health Benefits of Chlorella

Chlorella is an astounding package of complete nutrition, considering it is such a simple life form, which is probably why it is often referred to as nature’s multivitamin. The synergistic nature of chlorella’s nutrients is undeniable. All of its natural properties function together in a way individual supplements can’t touch. Chlorella is famous for providing a vast array of benefits while fighting numerous diseases and conditions.

Natural News

Fibromyalgia presentation with Dr. Kocharla Nov. 12

Tendercare Health Center of Albion will be hosting an event for Lakshim P. Kocharla, MD, who will be speaking on Understanding Fibromyalgia. During this presentation, Dr. Kocharla will cover the various aspects related to fibromyalgia such as potential causes, who is typically affected by this condition, what are primary symptoms and current approaches in treatment.

Battle Creek Enquirer

XMRV Lab Tests: Should Chronic Fatigue Syndrome Patients Get Tested?

It certainly doesn’t take long for things to come out of the woodwork on the heels of reported scientific breakthroughs. Already, some labs are offering very expensive tests for XMRV, the retrovirus researchers have preliminarily tied to chronic fatigue syndrome and possibly fibromyalgia. Now a lot of people are asking, “Should I get tested?”

About.com: FM & CF

Using What’s In Your Kitchen to Alleviate Pain & Inflammation

More and more people are trying to find more natural and less invasive methods of treating pain and illness these days.  With all of the problems we hear routinely regarding prescription & OTC medication side effects and problems they cause, it isn’t any wonder people are using more natural ways of treating their problems. ChicagoHealers.com Practitioner, Dr. Steven Arculeo, DC, says this about NSAIDs:

Each year, the use of NSAIDs (Non-Steroidal Anti-Inflammatory Drugs), account for an estimated 7,600 deaths and 76,000 hospitalizations in the United States. NSAIDs include: aspirin, ibuprofen, naproxen, diclofenac, ketoprofen, and tiaprofenic acid. Researchers are now linking inflammation to an ever-wider array of chronic illnesses such as hay fever, heart disease, depression, diabetes and colon cancer.

Arculeo recommends ridding these items from your kitchen as they may cause inflammation:

• Soda
• Processed foods
• Alcohol
• Hydrogentated/trans fat
• Red meat
• Caffeine
• Sugar

Replacing the above food items with fresh vegetables, fresh fruits and lean meats may decrease inflammation which in turn may help reduce illness and pain.  Here are some food items Arculeo suggests:

• Apples & Blueberries: these fruits are packed full of nutrients and are natural anti-inflammatories
•  Kale: contains over 80 nutrients per serving
• Fish: one of the most powerful anti-inflammatory foods, fish contains heart healthy and anti-inflammatory Omega-3 fatty acids. Choose cod, salmon or tilapia instead of the fatty deep water bottom dweller fish such as shrimp or catfish
• Ginger: aids in digestion
•  Garlic: lowers hypertension and cholesterol
• Basil, Parsley, Rosemary, Turmeric, Thyme, Chili Peppers & Cinnamon: all are proven to have anti-inflammatory properties
•  Oil: use cold pressed extra virgin olive oil to aid in decreasing inflammation

ME/CFS, Fibromyalgia & Strategies For Improving Intimacy

I have written before on Fighting Fatigue and I have also read elsewhere that the divorce rate involving a chronically ill partner is 75%.  That is extremely high and my first marriage failed in part due the lack of support I received from my ex-husband.  He didn’t believe I was really ill and that lack of support and trust was a huge factor in me falling out of love with him. 

I just read some great advice last night on strategies for improving intimacy when ME/CFS & Fibromyalgia is involved by Bruce Campbell, PhD.  Dr. Campbell is a recovered ME/CFS patient and former consultant to self-help programs for chronic illness at Stanford Medical School. His nonprofit site (www.cfidsselfhelp.org) offers articles, low-cost online Self Help courses in moderated discussion group format, and free follow-up programs & support.

Thanks to ProHealth, part of Dr. Campbell’s series on “Recasting Relationships & Building Support” has been posted and this section includes the six strageties for improving intimacy. This is what Dr. Campbell found in his series from patients:

When CFS or fibromyalgia enters a marriage, one casualty can be intimacy between the partners. Pain, reduced energy, reduced interest, health problems of the partner, and increased responsibilities for the healthy spouse can all affect a couple’s sex life.

But, like other aspects of long-term illness, intimacy problems can be reduced as well.

When we asked people in our Self Help program to describe the effects of their illness on their sexuality:

• All those who responded said that illness had reduced their sexual activity.

• Many people mentioned having a much lower level of sexual desire than before, due to factors like ongoing fatigue and pain, and the side effects of medications.

• Other causes of sexual problems included the effects of menopause, relationship strains, and the medical problems and/or impotence of their partner.

Even though people said that they had either reduced their sexual expression or given up sex, most also reported using a variety of strategies that have either enabled them to adapt their sexual life to their illness or to connect with their partner in other ways.

One thing I would like to add that I know may cause intimacy problems is certain medications, particularly antidepressants in women.  Many of us take antidepressants for CFS and/or Fibromyalgia and certain antidepressants can cause a woman to not orgasm which can lead to sexual frustration and tension in the bedroom. 

Here are Dr. Campbell’s six strategies he recommends for improving intimacy.

Talking.  Dr. Campbell reports that several people stated their relationship improved with their spouse after they talked openly about their reduced interest in sex.  Couples started talking about the reasons why their sex drive has diminished or disappeared and let the other know it was not them personally.  Also, talking about what sexual positions caused pain and discomfort helped the couples also.

Alternative Activities, In Bed and Out.  Patients reported using other means of showing affection besides intercourse – cuddling, and satifsying their partner in other ways.  Hugging, kissing, holding hands, manual stimulation, and oral sex are all alternatives to regular intercourse if the sick partner is not up to it.  Finding other ways to satisfy each other can be a new adventure.

Planning for Sex.  Planning for sex allows the sick spouse to rest up for it.  We have to prepare and plan for everything else so why should sex be any different?  Sometimes we may just need to forget about the laundry for the day, not run the sweeper, and save that energy for our spouse.  By planning a date, it allows us to also know what we need to do that week to reduce work levels and other activities.   Taking advantage of what your best time of day is may be the time you want to plan your “sex date” with your spouse.  If you feel better in the morning, plan for then.  If you feel better in the afternoon, plan a time for then.

Flexibility and Experimentation.  Dr. Campbells says, “Given the often unpredictable course of CFS and FM, it helps to be flexible about when sex occurs and what positions and activities are involved.”  Try the different times as discussed above and different positions to see what works best.  One couple said that having sex in the shower made her feel better because of the heat.

Addressing Pain and Hormone Problems.  “Several people reported that their sex lives improved after treatment of pain and hormone problems. People reported treating pain by the use of pain pills, topical ointments, massage, and heat and by adapting how intimacy occurs.”  Using medication safely and as directed is most important, but he recommends:

• take pain medication when it will be at its peak effectiveness when you plan to have sex.
• you may want to avoid narcotics or tranquilizers so that your senses aren’t dulled.
• reduce pain by taking a bath before sex, getting a massage, and stretching.
• reduce pain by choosing positions that are comfortable and often changing positions. 
• use the pain control approach of distraction and meditation.

Emphasis on Caring. Dr. Campbell reported that: “A number of people distinguished between intimacy and sex, and said they and their partners focused on closeness and mutual caring.”  Sex is important in a marriage but couples can also focus on other areas of their relationship to remain close, caring and loving.

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