The Care and Handling of Your Achy Crabby Friend …by Fibro in your FACE

newhairThis is from Fibro in your FACE. It made me laugh…and we all need that:

Congratulations on your purchase of a friend with fibromyalgia! With gentle care & small considerations, you will have a friend for a lifetime. Please take a moment to read these care instructions, & refer to them any time your friend appears to be fraying or wearing out.

1. Friend With Fibromyalgia can provide a lifetime of laughs and insight, listening & loving. It cannot necessarily do all these things on a given day or week, however. You may go an entire month without being able to get your Friend With Fibromyalgia to work properly. Please do not return it to the manufacturer; ask it if it needs anything or leave it alone. It will eventually return to factory specs.

2. You can help prevent Friend With Fibromyalgia from breaking down. When enjoying an outing with it, do not hijack it for extra quick trips or keep it sitting in one spot for longer than is comfortable. “Can we stop at this divine little cafe before we go home?” is a perfectly valid question, but remember that Friend With Fibromyalgia may have a limited number of times it can get in & out of a car before it starts to malfunction. “Let’s stay for another movie” or “Come on! Let’s dance!” might also be answered with a gentle “No”, lest it go into flare. It does not matter if Friend With Fibromyalgia could dance or go into 87 boutique shops last week. The weather has changed/the work week was rough/God only knows happened & now it cannot participate. Let it go home.

3. If Friend With Fibromyalgia is in flare, or is going into flare, even texts are difficult. Your Friend wants to help you & loves you very much, but your Friend also hopes they will die very soon to be rid of the pain & fatigue, so unless something very serious is happening (death, dismemberment), please do not ask Friend for assistance. Have you ever had the flu while several bones in your body are broken? Would you want to hear about work woes or significant other gripes while dealing with that pain? Your Friend With Fibromyalgia might be too polite to say, but it is not capable of dealing with First World Problems today. If it does not respond, it is simply not functioning today. It does not hate you; it hates being alive.

4. You can’t fix that. Don’t worry about it.

5. Sometimes Friend With Fibromyalgia will say or text garbled messages such as “Zgdbr83!!” or “I think I’m an hour outside of town but I don’t know where I am I probably won’t make it.” The first instance might be fine motor stuff; the second is cognitive fog. In the first case just let it go; in the second case ask Friend With Fibromyalgia to please text you when they get home to let you know they’re ok. Do not be alarmed if they forget that, too. They get lost a lot.

6. If you can drive Friend With Fibromyalgia, especially long-distance or multiple-stop trips, that’s a very good idea. It will be able to do more with you. Let it get out & stretch if it needs to. You can tell because it will start twitching or doing weird things with its arms or neck.

7. No matter how adorable & supple your Friend With Fibromyalgia appears, it’s not a bad idea to treat it like your 87 year old grandmother, even if it’s a child. If your 87 year old grandmother could sometimes walk 3 miles on the beach or dance for two hours, wouldn’t that be awesome? Think of your Friend that way.

8. Your Friend can’t eat fast food. Consider meals with your Friend an opportunity to explore freshly prepared cuisine with no mystery ingredients. Friends With Fibromyalgia cannot be fueled by anything with more than 3 syllables American & 2 syllables English*

*Say “strawberries” to yourself first with an American accent, then an English one. A real one, not Dick Van Dyke. There you go.

9. Your Friend With Fibromyalgia does enjoy hugs. It does not enjoy being compressed enthusiastically, shaken, or clapped/pounded on the back. That’s why it doesn’t go to sports bars despite really enjoying screaming about what a fricken piece of crap loser Eli is. Suck on the failure, Eli! SUCK IT!

10. Go easy on the commercial cologne. Your Friend has a highly tuned nervous system & can smell you from 7 blocks away even if you’ve just had a 5 minute shower with unscented soap. A spritz of your cologne is delightful. A cloud will cause Friend With Fibromyalgia’s head to explode.

If you do not believe you can comply with the care & handling of Friend With Fibromyalgia, it’s ok to just enjoy their online presence & Like or Favourite their many amusing comments. Your Friend doesn’t want to be a pain in your ass any more than you want to deal with someone who is over sensitive in the most literal, physical sense.

Bonus care tip: Friends in Flare don’t want to be pitied. They do want to laugh or be distracted from their pain. Absurd is best; it’s an absurd disease.

A Fine Line Between Pleasure and Pain

New research indicates that a disruption of brain signals for pleasure and pain contributes to increased pain sensitivity, known as hyperalgesia, in FM patients.

Results published in Arthritis & Rheumatism, a journal of the American College of Rheumatology, suggest that this altered brain processing might contribute to widespread pain and lack of response to opioid therapy in such patients.

“In patients with fibromyalgia there is an alteration in the central nervous system pain processing and a poor response to topical pain treatments, trigger point injections and opioids,” said lead author Dr Marco Loggia from Massachusetts General Hospital and Harvard Medical School in Boston. “Our study examines the disruption of brain function involved in the individual experience of pain anticipation and pain relief.”

For this study, the research team enrolled 31 patients with fibromyalgia and 14 healthy controls. Functional magnetic resonance imaging (MRI) and cuff pressure pain stimuli on the leg were performed on all subjects. During the MRI, participants received visual cues alerting them of impending pain onset (pain anticipation) and pain offset (relief anticipation).

brain_3Results show that during pain anticipation and relief, FM patients displayed less robust response within brain regions involved in sensory, affective, cognitive and pain regulating processes. The ventral tegmental area (VTA)—a group of neurons in the centre of the brain involved in the processing of reward and punishment—displayed activation during pain anticipation and stimulation, but deactivation during anticipation of relief in healthy controls. In contrast, VTA responses during periods of pain, and anticipation of pain and relief, in FM patients were significantly reduced or inhibited.

Dr Loggia concludes, “Our findings suggest that fibromyalgia patients exhibit altered brain responses to punishing and rewarding events, such as expectancy of pain and relief of pain. These observations may contribute to explain the heightened sensitivity to pain, as well as the lack of effectiveness of pain medications such as opioids, observed in these patients. Future studies should further investigate the neurochemical basis underlying these dysfunctions.”

 

Young and Hard

A new study reveals that young and middle-aged FM patients report worse symptoms and poorer quality of life than older patients.

The study included 978 FM patients who were divided into three age groups: 39 and younger, 50 to 59, and 60 and older. The younger and middle-aged patients were more likely to be employed, unmarried, smokers, have a higher education level and lower body-mass index (BMI). They were also more likely to have a history of abuse.

(And you might say obviously) The younger and middle-aged patients had FM symptoms for a shorter length of time than older patients, the study authors said.

chronic comic 181“Among the three age groups of young, middle-aged and older, symptom severity and quality of life differs,” study senior author Dr Terry Oh, a physical medicine and rehabilitation physician at the Mayo Clinic in Rochester, Minn., said in a clinic news release.

The findings were surprising, because older people generally have poorer quality of life and physical health than younger people, Oh said.

The researcher noted that female FM patients in all three age groups reported a lower quality of life than the average U.S. women, and that the difference between their physical health and that of the average woman was more significant than mental health differences, particularly in young patients.

Because the studies were presented at the American College of Rheumatology annual meeting, the data and conclusions should be viewed as preliminary until published in a peer-reviewed journal.

Lyrica(l) Depression

Pregabalin (Lyrica®) can significantly improve FM pain in people who also are being treated for depression, according to research presented at the American College of Rheumatology (ACR) Annual Meeting in San Diego. And my recent slow tapering off of Lyrica, and then returning to it (after way too much pain) confirmed this to me.

chronic comic 189I also suffer from depression. In fact, 50 to 70 per cent of people with FM report a lifetime history of depression, and approximately 25 per cent have a history of taking antidepressants.

Pregabalin is approved for the treatment of FM in the United States, Japan, Australia and other countries. But, because prior studies excluded the use of antidepressants in treatment, information about the effectiveness and safety of pregabalin for the treatment of pain in people with FM who are also being treated with antidepressants for their depression is lacking.

“Depression is common in patients with fibromyalgia,” explains Lesley M. Arnold, MD; professor of psychiatry and behavioral neuroscience; University of Cincinnati College of Medicine, Cincinnati, Ohio; and lead investigator in the study. “Many patients present to their doctor for treatment of fibromyalgia pain already taking antidepressants for their depression. This is the first study to evaluate the efficacy and safety of pregabalin for treatment of fibromyalgia pain in patients who are also taking antidepressants for depression.”

288. rate your painWith this in mind, researchers completed a study to determine if pregabalin would affect pain levels in people with FM who were also being treated for depression. The study included 197 patients who were, on average, 50 years of age and overwhelmingly white females. To join the study, patients had to meet the 1990 ACR Criteria (including manual tender point exam), have an average pain level of at least four out of 10 on the Numeric Rating Scale, (0 = no pain and 10 = worst possible pain), have a documented diagnosis of depression and be taking a stable dose of an antidepressant medication — either a selective serotonin reuptake inhibitor (such as Celexa®, Lexapro®, Prozac®, Paxil® or Zoloft®) or a serotonin-norepinephrine reuptake inhibitor (such as Cymbalta®, Effexor®, or Pristiq®). The antidepressant treatment was continued throughout the study.

Patients were on study treatment for a total of 14 weeks. There were two six-week treatment periods when patients received either pregabalin or placebo, with a two-week break in between these periods. Each patient was randomly assigned to receive either pregabalin in the first six weeks, then placebo in the last six weeks, or to receive placebo first, then pregabalin. None of the patients knew which treatment they were receiving at any point in the study. Pregabalin was started at a dose of 150mg per day, and increased to 300-450mg per day, based on each patient’s response; this dose was continued for the rest of the treatment period.

Chronic Comic 157At the beginning of the study, the average pain score amongst participants was 6.7. The average pain score dropped to 4.84 after treatment with pregabalin and to 5.45 after treatment with placebo. Pregabalin treatment significantly improved patients’ pain compared to placebo.

Side effects were reported in 77.3 per cent of those on pregabalin and 59.9 per cent of those on placebo. For pregabalin treatment the most common events were dizziness (28.2 per cent) and drowsiness (19.9 per cent). A total of four serious adverse events were reported; however, the researchers concluded these events were not related to the treatment.

“The results of this study demonstrate that pregabalin is safe and effective in reducing fibromyalgia pain in patients who are also taking an antidepressant to treat their depression,” says Dr Arnold.

Could YOU be our Next Covergirl/guy?

Today, the latest issue of our E-Mag LIVING WELL with FIBROMYALGIA came out.

And for the first time, we had our first cover-girl with Fibromyalgia…

cover

So, I started thinking (again!) and guess what? I’m asking YOU to submit your own cover photo…

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Entries will only be accepted at contributions@fibromodem.com between September 1st 2013 and November 1st 2013.

Please have a look at the terms and conditions and get clicking!

Tips for Coping with #Fibromyalgia

Most of us need reminding of all of this…

9 Tips for Coping With Fibromyalgia

Accredited Member

From Fibromyalgia, an accredited member of FCK – THE blog directory for people about & with Fibromyalgia
  1. De-Stress – try yoga, exercise, sleep, meditation, breathing deeply and exhaling slowing can also help, do activities that you enjoy or that make you feel better.  For me, I like gardening, walking, taking pictures of nature, and spending time with my 2 year old.
  2. Write everything down – if you have noticed you have been forgetting things on a regular basis, you are probably suffering from “Fibro Fog”.  Life will be so much easier if you keep a pad with you at all times or one on your nightstand and desk.  I have a pad on my main counter in the entry way and then one on my nightstand.  I also use Google Calendars that syncs with my phone.
  3. Exercise regularly – regular, low-intensity exercise, such as walking or water exercise – helps decrease pain and stiffness, and reduces stress.  I am bad at doing it on a regular basis, but I love to walk on the canal on cool days or walk on the treadmill.  I have been going back and forth with water exercise, but someday I will try it -I have to find the time!
  4. 200373437-001Take warm showers or soak in a warm bath – can relax tense muscles, reduce pain and help you move easier.  I know when I take a warm shower and let the water run on my neck and back, I feel much better and more relaxed.  I especially love in at night right before bed.
  5. Have “Me Time” every day – This is one thing I need to do more of! Again, when I have time – between raising a 2 year old, taking care of a house and husband, and working a regular 9-5 job from home, I am lucky I get me time at all.  I try to be done with everything by 8:00pm and then it is my time to relax in bed and watch TV.  I guess you could consider that me time, but not really.  I need time away from the house and baby, doing something I love to be considered me time.  I know when I do that, I have less stress and feel more relaxed, but on the other hand, I wonder what my son is doing and how things are going.  I can’t win
  6. Make working easier – ask your boss if you can work from home on certain days or part-time, rearrange your office to suite your needs where you are more comfortable, and maybe take a little longer lunch to relax and regroup.  I am one of the lucky ones where I am able to work from home so I can take a break whenever I need to or not worry about calling in sick if I am having a bad day.  I luckily don’t have that stress anymore, but I do remember what it feels like – worrying if today is going to be the day I get fired.  I don’t miss the corporate world and I love being my own boss.
  7. Make sure to talk about Fibromyalgia with other people – it is ok to talk to your family and friends but if you find they support groupare not understanding, find a support group where you live or talk to a counselor who specializes in Fibromyalgia.  To this day, I am still trying to get my husband to understand what I feel like everyday.  We just had a discussion about this when Dr.Oz did a segment on Fibromyalgia.  He says he understands but know one does unless they are going through it.
  8. Say NO more often – this is something I have a very hard time with.  Someone will ask me to do something for them or want to go out and it is very hard to say no and to make them understand I am just too tired.  I think people come to me more often because they know I have a hard time saying no.  I have been getting better but I’m a work in progress!
  9. journalKeep a daily journal so you can get a better idea of what is working and what is not – this could be a great tool for when you go and see your doctor.  Keep track of events, activities, symptoms, and changes in your mood.  You will be able to see a pattern of what is triggering a flare up and what is working for you to relax more.

Loneliness is the Most Terrible Poverty

I’ve  been feeling so lonely and isolated recently – so much so that I am having trouble writing and even connecting with you.

That’s why Tracy’s (from Oh! What a Pain in the…) blog post has rung so true with me…and I have to share it with you.

Why Pain is So Lonely

Accredited Member

From Oh! What a Pain in the…, an accredited member of FCK – THE blog directory for people about & with Fibromyalgia

Many people in Chronic Pain feel very alone sometimes, myself included. There is a big reason for that loneliness, mainly the fact that YOU are the one in pain. Despite how much we wish our doctors or loved ones could feel our physical pain in order to understand and validate how we feel, there is no device that will allow us to hook our pain receptors up to another person (but we can all hope for that one day). No one else can feel YOUR pain.

70. never aloneWe may not be alone in our journeys, but we are, essentially, alone in our pain. Additional factors that contribute to loneliness for those living in chronic pain include:

  • Depression
  • Isolation
  • Inability to do activities outside of the house
  • Inability to work
  • Marital problems resulting from emotional issues connected with chronic pain
  • Strained relationships with family and friends

Loneliness is often not our choice. I did not choose to have back problems and other health issues. I did not choose for my pain to change me. I did not choose to have relationships lost as a result of what this life has done to me. But loneliness is very common for people in chronic pain. And it has a lot to do with the factors listed above. Chronic pain makes many people depressed, feeling hopeless, and therefore many isolate, choosing to stay home and not socialize.

For some it is difficult to get out of the house. I am able to leave the house and go to the gym for physical therapy, I can spend time with friends and family, but like most, my time is limited. My back has a time limit for standing, sitting, walking, so things like travel, or long event are difficult. But, going out for a little while doesn’t always help the loneliness, especially if pain increases when returning. Sometimes being with others is wonderful but then the recovery is painful and can perpetuate the cycle of depression, isolation and loneliness.

I try to fight loneliness where I can though. I can’t do anything about the marriage issues that have arisen as a result, but I can use my support system. I actually find that since my separation I do a lot more. I have a weekly dinner date with my niece and nephew, I see my best friend most weeks, go to my classes, spend time with my family. I didn’t realize how much I had isolated until all of this happened. I am very lucky to have a supportive system, but at the same time, sometimes you can be with 10 people and still feel alone because people don’t understand what you are going through. As I have said, the bottom line is YOU are the one in pain and you can explain it, give examples, try to make others understand, but it is still YOUR pain.

How do you deal with loneliness?

Fibromyalgia – it IS life threatening!

For those who have heard about, but didn’t get to see, Dr Oz’s show about Fibromyalgia… dr oz

It is a four part video. Here are the video links:

O Romeo, Romeo! Wherefore Art Thou Romeo?

I’ve written about my search for love and/or companionship quite a bit. Sadly, I am still alone.

Today I received my blog updates from all the blogs I follow and read one that many of us think about a lot:

Accredited MemberConquering Fibromyalgia with Love

From The Invisible F, an accredited member of FCK – THE blog directory for people about & with Fibromyalgia
 Holding hands by Robert FlakeLife with fibromyalgia can be inundated with many things, among them fears and anxieties over the future.

It’s not a progressive condition doctors say, but living on a day-to-day basis can be darn tough. Life, I’d argue, is hardly ‘normal’, and by that I mean how a typically healthy person would live.

I know it’s not just for people who live with FM but also for others who live with other chronic illnesses.

One particular worry keeps resurfacing and I know many of you will be able to relate.

I’ve found myself on the wrong side of 25 (Try being 42, Miss F!), still single, full of love and lots to give, but I sometimes worry about finding that guy who will love me for me despite fibromyalgia (God knows I’m picky too!).

You know? The guy who will see who I am, what I am and all I offer behind that annoying f-word.

Patients often worry about meeting someone and explaining their health situation. It is difficult, knowing when to bring it up because you don’t want someone to see fibromyalgia, before they see YOU.

You know I always say, we are not fibromyalgia and fibromyalgia is not us. Don’t become it.

As more and more of my friends find love,get engaged, and married I think about it a little more.

Whoever my Prince Charming is, will he have the heart enough to love me despite the odds I face with this invisible f?

True love conquers all.  But can we really find it?

Related Articles

Time is of the Essence

“Next Tuesday, we’re going shopping,” says my Mommy.

Monday arrives and I haven’t forgotten that we are going shopping on Monday; I just haven’t realised that it IS Monday.

One of my big problems is keeping track of time, especially dates. Birthdays and special events creep up on me and catch me unprepared all the time. I know when things are supposed to happen. I hear when some-one tells me about something. I also know how long it is supposed to take me to get ready to leave the house – I really hate being late, but I can’t seem to get a handle on this particular issue.

Like Adrienne Dellwo has said:

The farther out something is planned, the worse it seems to be. It’s like my brain files it under the heading “months away” and then never updates it to “next week.” If something is set for tomorrow or a week from Thursday, I do pretty well. Those things apparently go into the “really soon” file and stay more on the radar.

There’s a learning disability called dyscalculia – a learning disability that deals with math. It is similar to dysphasia, which includes those word-finding difficulties so many of us have. Dyscalculia not only impairs math and number abilities (forgetting concepts, transposing numbers), it also involves:

  • Difficulties with time: inability to remember schedules, keep track of time, or remember a sequence of events.
  • Spacial problems: impaired direction sense and memory of how things are laid out, leading to frequently getting lost or becoming disoriented.
  • Difficulty sight-reading music or learning instrument fingerings.
  • Inability to remember names.

72. manufacturers warrantyResearch shows that dyscalculia involves dysfunction in a specific part of the brain – all of the above problems stem from the same cause. It means that this is ONE problem only; and not a whole lot of unrelated issues being attributed to FM.

This doesn’t necessarily make me feel better after being at the casino last week and not being able to work out the action on the Craps table (I was a Craps dealer/supervisor for 14 years!)

Dyscalculia can occur as the result of some types of brain injury, in which case the proper term is acalculia (or Acquired Dyscalculia), to distinguish it from dyscalculia which is of innate, genetic or developmental origin.

Dyscalculia isn’t something you can take a pill for – it’s something you have to live with. Scientists have yet to understand the causes of dyscalculia. 119-fibro-fogThey have been investigating in several domains including short-term memory being disturbed or reduced, making it difficult to remember calculations (Does this sound like Fibro Fog to you?) I haven’t found any scientific research that says that FM causes Dyscalculia (if you do, please share it with all of us!) but it certainly makes it worse.

The good news(?) is that it is a recognised learning disability, just like dyslexia or dysphasia. If it causes problems for you at work/school, you can talk to your boss/teacher about having this learning disability without having to disclose that you have FM, or trying to explain brain fog.