Today is May 12th..
On this day we try to spread awareness of three debilitating and chronic medical conditions. I have all three of these conditions & I have to say, they all suck.
FMS – Fibromyalgia Syndrome
CFS/ME – Chronic Fatigue Syndrome/Myalgic Encephalomyelitis
MCS – Multiple Chemical Sensitivities
Yes, I live in pain every minute of every single day. It is the Nature of the Beast..
If someone tells you they have fibromyalgia or CFS/ME & are pain free, they are wrong. Pain free days do not happen. If someone is pain free they are either lying to you, lying to themselves or they were misdiagnosed.
Like all Fibromites, I have pain every single day. Some days is really great at 1-2/10, but it has been as bad as 8/10 for my kidney stones. Lately, I’m typically at 3 or 4.
The best I’ve been is a 1.. but a zero? No I have zero pain or painfree days.
So, do I wake up in pain? Yes.
Do I walk my dog in pain? Yes.
Do I do groceries in pain? Yes.
Do I write my blog posts in pain? Of course.
Do I exercise while in pain? Ha – tricky one. Yes, if I can do so without triggering a flare.Do I snuggle up & watch TV or movies in pain? Yes.
Do I socialize in pain? Yup, otherwise I’d be a hermit.
Do I participate in personal adult extra curricular activities while in pain? Unfortunately, yes. There is 2 posts about this topic in the works.
Do do my Scouting in Pain? Yes, I do. Only one person in each group has any clue about how I’m doing Raksha 13 & I have become good friends through Scouting & Rainbow I’ve known grade 8 or 9, but through guiding & scouting.
Don’t I take meds to help with the pain? Yes, but he important word there is *help*.
Now think about this.
Would you be able to handle never-ending pain? Knowing that it will never, ever end? That it could flare-up & knock you out with, if you’re lucky, only a moment’s notice??
Could you handle the negative prospects, knowing that most Fibromites do deteriorate? It means you will likely get worse, not better.
How could you handle additional fibro symptoms like debilitating fatigue matched with bouts of insomnia? What about a loss of cognitive function where you can’t remember silly stuff like the phrase “tug-of-war’ during a game of Pictionary with the kids. How about feeling useless cuz you are unable to help your kid with his math homework because you don’t remember how it works – all you can say is the answer is wrong, but unable to explain why, made worse cuz you had a partial scholarship in Mathematics.
What about the other “smaller” symptoms? IBS? Thyroid issues? Sjorgens Syndrome? Sleep impairment? TMJ? Reynauds Syndrome? Muscle spasms or reoccurring ‘Charlie Horses’? Costochondritis? Muscle weakness? Myofascial Pain Syndrome? Migraines? Allodynia (touch sensitivity)? Chemical sensitivities? Light, noise or smell sensitivities? Restless Legg Syndrome? Paraesthesia?
Admittedly, you won’t have all of these all the time, but they can spontaneously come & go without warning. But is that something you can handle, with the never ending pain & fatigue?
Very few friends can identify how much I’m in pain. My bff can usually spot it a mile off. My sister & occasionally my Mom can tell by looking at me.. I have other friends & family who have learned some of the more obvious signs of higher pain levels.
So yeah, I’m in pain, even as I’m snuggled up in bed, relaxing & medicated. I am still in pain. Always.
Could you handle it?
Better than what?
Am I better than yesterday? Or Last Week? Last Month? Last year? Maybe, but that is not what you are asking, is it?
You are wondering if I still have Fibromyalgia or CFS/ME, or one of the many other invisible illnesses like Lupus, or Crohn’s disease. The short answer is No.
There is currently no cure for these debilitation yet chronic medical conditions. While there are treatments that *can* improve one’s quality of life, they do not work the same with everyone.
Now some people who are familiar with these conditions will ask that but mean something different. They are asking how one is, wondering if today is a good day compared to the bad day from last week.
My answer to the later question uses the word “improved” not “better”. It clears things up because of the lack of clarity & assumptions made when using the word “better”.
Today, May 12 is International Fibromyalgia Awareness Day.. also known a Fibro, FM & FMS, the rigging for today is Purple.
Today, May 12 is International Chronic Fatigue Syndrome / Myalgic Encephalomyelitis Awareness Day. Also known at CFS, CFS/ME, ME/CFS & ME, the ribbon for today is Blue.
Today, May 12 is Multiple Chemical Sensitivity Awareness Day. Also known as MCS, the ribbon for today is Green..
Welcome to Fibromyalgia Awareness Month!
What is Fibromyalgia? Fibromyalgia is a chronic pain condition characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. The current theory behind why is that fibromyalgia amplifies painful sensations by affecting the way your brain and spinal cord process painful and non-painful signals.
Why is Awareness Important? Because there are many incorrect assumptions and false facts about this disease & the people who have it. People need to know that just because you can’t easily see my pain on my fatigue or digestive issues or cognitive issues or.. etc.. that does not mean it is not there.
Why May? Initially, Fibromyalgia Awareness Day started exclusively on May 12 – the birthday of Florence Nightingale. Why her? Not only is she the mother of modern nursing, it is believed that she has Fibromyalgia…After returning home from the Crimean War in 1856, her diary entries are suggestive of the classic pain and fatigue condition that we have all experienced. So May 12th became the date for Awareness for Fibromyalgia, ME/CFS, & MCS.. But why or how did they get that extended to the whole month? I have no clue tbh. .
Why should you care? Approximately 2 to 4% of the population has fibromyalgia. In the US, that’s about 6 to 12 million people, In the UK that’s about 1⅓ to 2⅔ million people. In Canada that’s about 750,000 to 1.5 million people. That is alot of people. So, if that is the stat for the entire world, that means there are 153 to almost 307 million people worldwide with fibro..That is A LOT of people.
So what? That’s still not me. So why should you care, even with those stats? Well, anyone can have Fibromyalgia. So your son, your daughter, your sister, your brother, your cousin, your friend, your mother, your partner. Anyone of these people could get fibromyalgia.. That also means if you know 100 people, 2-4 of them will have Fibromyalgia. So, you *do* know someone with Fibromyalgia.
How? Simple. Ask questions. Do some research to find out a little bit of fact (not fiction) on fibro. Be cognizant of your behaviour. Support those in your life with this condition – off help & let them know you believe them. Wear a purple ribbon to show your support Wear purple!!
My initial diagnosis was a few things.. I took maybe a dozen blood tests for the obvious including Lupus, Lyme and that’s sort of thing. I saw a rheumatologist who determined I had “symptoms consistent with fibromyalgia.” I immediately requested a referral from my GP to the Environmental Health Clinic at Women’s College Hospital in Toronto. It took just over 2 years to get my appointment but I got in. Luckily for me, my partner at the time was working at Sunnybrook/WCH,. He pulled a few strings and called in a few favours to ensure that I got the top physician.
I was able to see Dr Alison Bested. At the time she was *the* top physician for Fbromyalgia, Myalgic Encephalitis/Chronic Fatigue Syndrome and Multiple Chemical Snsitivities
Dr Alison Christine Bested, MD, FRCP(C), is a Haematological Pathologist, one of only about 100 Haematological Pathologists in Canada. Her training covered areas including: Immunology, Blood Banking, Genetics, Anatomical Pathology, Internal Medicine and Haematology both clinical and laboratory. She is currently the Chair of Integrative Medicine at Nova Southeastern University. Prior to this position, she was the Medical Director of the Complex Chronic Disease Program at BC Women’s Hospital clinic, in Vancouver, British Columbia. Prior to this she was Medical Specialist Liaison, then Acting Medical Director at the Environmental Health Clinic at Women’s College Health Sciences Centre, in Toronto, Ontario,. Dr. Bested’s medical specialty practice had dealt with complex chronic medical conditions including: Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS), Fibromyalgia (FM), Multiple Chemical Sensitivity (MCS) and persistent Lyme Disease.
Dr. Bested participated on the Expert Medical Consensus Panel that wrote the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols. This consensus definition was published in the Journal of Chronic Fatigue Syndrome in 2003. In the literature this is known as the Canadian Consensus Definition of ME/CFS and is used worldwide by clinicians and researchers. She was one of the authors of the 2014 ME/CFS Primer for Clinicians published by the International Association of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. This summary publication is an updated version of the Canadian Consensus Definition of ME/CFS. Dr Bested has, with co-authors, written 2 books on these topics: : “Hope and Help for Chronic Fatigue Syndrome and Fibromyalgia”, 2nd Edition, 2008 and “The Complete Fibromyalgia Health Diet Guild and Cookbook”, 2013.
What did she do? She sent me for more extensive testing, mainly blood work. Unfortunately due to cost I was unable to pay for some of the tests which she had ordered. So while she didn’t have 100% of the results she did confirm 100% that I do have fibromyalgia. Her staff also confirmed the CFS diagnosis aswell.
I received this email recently from Dan, a member of my local ME&CFS community.. The topic, as I’m sure you’ve guessed, is in regards to vaccinations and ME&CFS… Dr. Nancy Klimas’ gives her opinion on this very topic – her message is highlighted in blue.
Warning: lots of technical jargon. If you can understand it all, please translate when this means to us lesser mortals… 😉 I do think the Doc is basically saying unless to react to vaccines you should get the vaccine but the alternative could be, potentially, a long, slow, painful death, alone, without friends or family.
To Members of the ME/CFS Community –
Our recent fundraising for Dr. Nancy Klimas’ ME/CFS medical research at the Institute for Neuro-Immune Medicine (INIM) at Nova Southeastern University raised over $4,200 in a couple of weeks.
As our fundraising efforts were underway, Nancy was formulating her thoughts on how those of us with ME/CFS might consider getting the vaccine.
She recently sent me the following:
Hi Dan – I put together my opinion and hopefully its posted on our web page (https://www.nova.edu/nim/index.html) today. Nancy
To vaccinate or not – with ME/CFS
I have been asked this question dozens of times over the past week. This is my opinion –
COVID kills people. It kills people with over activated and damaged immune systems preferentially – and that is what ME/CFS is all about. So while there certainly is a risk of an ME relapse with these hyper reactive vaccines (the first wave to be released) , you have to weigh the possibility of an ME relapse against the risk of death from COVID.
You can mitigate the risk in a number of ways – just the way you do when you feel a relapse coming on. Before the vaccine make sure you are taking enough antioxidants, particularly NAC or glutathione and coQ10. The big mediator of post vaccination relapse and immediate reactions is mast cell activation. If it happens immediately, that is anaphylaxis, but if it happens slowly and low grade over days the mediators mast cells release can drive a classic ME/CFS relapse. So, take an antihistamine before and for several days after the vaccine – the strongest one you tolerate. (Benadryl is one of the strongest, Zyrtec is another good choice). There are many mast cell stabilizers, watch Dr. Maitlands excellent lecture on our web page from the recent conference we sponsored on the subject if you want to know more: Managing the Syndrome Soup: POTS, EDS, MCAS & ME/CFS https://www.nova.edu/nim/events.html
There are natural supplements that act to block or clear histamine and stabilize mast cells such as alpha lipoic acid, ascorbic acid, B6, diamine oxidase enzymes (DAO), luteolin, N-acetylcysteine (NAC), Omega-3’s, riboflavin, SAMe, quercetin, and natural sources of theophylline like green and black teas. If you have been diagnosed with mast cell activation syndrome it would make sense that your risk of an immediate reaction to any vaccine should be higher, though the data on the risk to people with mast cell activation syndrome or prior vaccine allergic reactions is not yet known with the COVID vaccines. I suspect we will know fairly quickly , with millions of doses already administered. So you may want to wait (taking all of the COVID precautions very seriously) and when you do take the vaccine plan to stay in the medical setting for at least 30 minutes, consider several hours, to be in a safe place if you do have a reaction. In this special circumstance premedication with a steroid, the same way we premedicate people who need a CT scan with iodine contrast dye, could be provided by your physician.
Please note that if you take the vaccine you should take the whole dose, and the current vaccines, Pfizer and Moderna, should be administered twice. It is not yet known how long the immunity will last, but there are blood tests that look at antibody levels available. They came to market very quickly, we will know more about the quality of the antibody tests over the next few months. Most importantly, vaccination is not 100% (in fact the two initial vaccines trials were 95% effective in preventing or reducing the severity of infection) So vaccination does not exclude strict distancing guidelines, and the masks continue until “herd immunity” levels of vaccination have been reached (70% of the population)!
Of course, these recommendations are simply my opinion, and we will know a lot more about safety in the coming months – but 30,000 plus folks took the vaccines in the trials (that’s a lot) and you have to be moved by the photos of health care professionals lining up to receive their vaccine. Is there a risk? Yes. Certainly more a risk of ME/CFS relapse than anaphylaxis, which should be manageable. Is it worth it? Your decision, weighing all that you can find out. But more than 330,000 Americans have died and the new strain of the virus is likely to make our current rate of infection go much higher. Please take this seriously.
More than you wanted to know:
Partial vs. absolute protection
Most vaccines offer incomplete protection against infection and this is likely to be the case with SARS-CoV-2 vaccines as well. However, even partial protection will be of benefit both to patients and the general public. Partial protection may mean that most but not all persons develop immunity, or that some recipients develop weak immunity that makes the consequences of infection less severe than they would have been otherwise.
(December 2020 update: Information from the American College of Rheumatology Regarding Vaccination Against SARS-CoV-2).
Here are the official recommendations:
The American College of Allergy, Asthma, and Immunology (ACAAI) has issued guidance for physicians and other providers related to the risk of an allergic reaction following vaccination with an mRNA-based coronavirus disease 2019 (COVID-19) vaccine.
ACAAI’s recommendations are in line with guidance issued by the Centers for Disease Control and Prevention. Specifically, that patients experiencing a severe allergic reaction after getting the first shot should not receive the second shot.
In addition, the ACAAI COVID-19 Vaccine Task Force recommends the following guidance for physicians and other providers:
The mRNA COVID-19 vaccines should be administered in a healthcare setting where anaphylaxis can be treated. All individuals must be observed for at least 15 to 30 minutes after injection to monitor for any adverse reaction. All anaphylactic reactions should be managed immediately with epinephrine as first-line treatment.
The mRNA COVID-19 vaccines should not be administered to individuals with a known history of a severe allergic reaction to any component of the vaccine. Although the specific vaccine component causing the anaphylaxis has not been identified, polyethylene glycol is one of its ingredients and has been known to cause anaphylaxis.
Data related to risk in individuals with a history of allergic reactions to previous vaccinations and/or mast cell activation syndrome/idiopathic anaphylaxis is very limited and evolving. A decision to receive either of the mRNA COVID-19 vaccines that are currently approved for Emergency Use Authorisation by the US Food and Drug Administration should be undertaken by the individual, along with their physician or other provider administering the vaccine using their professional judgment balancing the benefits and risks associated with taking the vaccine.
People with common allergies to medications, foods, inhalants, insects and latex are no more likely than the general public to have an allergic reaction to the mRNA COVID-19 vaccines. Those patients should be informed of the benefits of the vaccine versus its risks.
The mRNA COVID-19 vaccines are not live vaccines and can be administered to immunocompromised patients. Physicians and other providers should inform such immunocompromised patients of the possibility of a diminished immune response to the vaccines.
Reference: https://acaai.org/news/american-college-allergy-asthma-and-immunology-updates-guidance-risk-allergic-reactions-mrna
SOURCE: American College of Allergy, Asthma, and Immunology
The American College of Rheumatology offers additional guidance for people on immunosuppressive therapy, and discussed in some detail the issues around vaccination and herd immunity. Here is the link:
https://www.rheumatology.org/Portals/0/Files/ACR-Information-Vaccination-Against-SARS-CoV-2.pdf
Still, I think 2021 will be a happy new year. The most vulnerable should see the vaccines available in the coming weeks! And yes, it will take a lot to get our citizens to the level of herd immunity with mostly the logistics in the news, but really it is denial of the risk of COVID 19 allowing this head in the sand thinking. Take a hard look at the stats and your risk. Then make a smart decision.
Nancy
How fibro & other issues affect or don’t affect my libido. People who know me but do not have interest in this topic as relates to me, like a sibling or parent, even some friends, you just might want to skip this post.
When I was young, before the fibro became an issue, I was only dealing with the early onset of only Endometriosis & CFS. My sex drive, much to the delight of my boyfriends over the years, was high. I don’t know many women who have that strong a libido. I only know of one female whose libido is close to mine. I’d equate my strong libido levels to that of an 18;year old boy. That tells us something.
I have found that the medical condition itself of fibromyalgia does not impact my libido. It does however impact if, when and how I act on that libido. Whether I’m a passive or active partner, how I can move and what positions I can or can’t get into. And there are some days that are just too painful. The mind is willing, the body not so much.
While the fibro has not impacted the desire, what has impacted it over the years is medications. I’ve had two major medications not only decrease but almost eliminate any sex drive I had.
Fentanyl: I was, at one point, at 50mcg/hr through a fentanyl patch. And because I had slowly been increased to that.. I didn’t initially notice the libido drop.. It was a slow progression to the complete elimination of any interest.. I was also on it for several years and I guess I attributed the drop in drive as a fibromyalgia issue as many women in the support groups have lost their libido to fibro. I only found out that it had completely suppressed my natural urges when I came off it. It took only a few days for it to return. And return it did! Unfortunately I was single at the time.
Cymbalta: It seems that there are a lot of antidepressants that can impair one’s sex drive. Fortunately, I’ve never had problems with them until the Cymbalta. It was initially great for my depression, but zero help for the Fibro for me.. But when we tweaked it & bumped it up a level, the mood stabilizer part of the medication was better, but within 48 hours of starting the higher dose, the libido died. We tried it for 6 months to see if that side effect would wear off before switching me to a different medication. My sex drive returned in maybe 36 hours, at most.. But again, I was single again, at the time.
Now, these medications may not impact others the same way and I’m sure there are other medications that will impair sex drive of others. This is my experience and my experience only.
#MEAction co-founder Jennifer Brea received a standing ovation for her moving TED Talk, the first ever about Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome
https://us2.campaign-archive.com/?u=908f2aeffeb0c0cea673894bf&id=5550d7fdb7
Five Things You Should Know About CFS
by Amanda Rinkel
May 7th, 2009
I’ve already kicked off International Chronic Fatigue Syndrome & Fibromyalgia Awareness Day on May 12 a little early with my post on Five Things You Should Know About Fibromyalgia, and I’ve returned with more information, but this time about the chronic illness Chronic Fatigue Syndrome. Once again, no hilarity, no breaking news stories, just some information I think you should know.
Five Things You Should Know About Chronic Fatigue Syndrome
1. The hallmark of Chronic Fatigue Syndrome is fatigue, but it isn’t “normal” fatigue. When a healthy person is tired, they can rest or sleep to relieve fatigue, but a person with CFS cannot. Sleep and rest don’t help and activity can make the exhaustion worse.
2. Up to 75 percent of patients with Chronic Fatigue Syndrome potentially have or have been diagnosed with Fibromyalgia as well. That is up to 3 million people.
3. There are 4,000 confirmed abnormalities between a CFS patient and a healthy individual, yet none of these abnormalities have been identified as a cause or as a diagnostic marker.
4. 1-4 million people in the United States have CFS yet only 20 percent have been properly diagnosed with the illness and are receiving the proper treatment.
5. Chronic Fatigue Syndrome has been said to be as functionally disabling as Multiple Sclerosis, AIDS, End-stage Renal Disease and Chronic Obstructive Pulmonary Disease.
To learn more check out www.wamcare.org.
Soource: blog.su-spectator.com
Fibromyalgia 
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