Chronic Fatigue Syndrome

Chronic Fatigue Syndrome, Fibromyalgia, and IC Disease

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ENT Visit Today for Sinus Problems – What Now?

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I went and had my 2nd opinion on my sinus infecton problem this morning at the ENT specialist and now I’m more confused than ever. Sometimes I think 2nd opinions are just meant to confuse the heck out of us and are meant to make us feel like we are losing our marbles. Obviously, anyone who has been around me for the last month can testify to the fact that I have been very sick, but a lot of what the ENT doctor had to say today completely contradicts what my family doctor has been telling me, so now I don’t know what to think.

The up side is that I am starting to feel a lot better, so I am very thankful for that.  I have been off work since last Friday and my I know that my CFS-ridden body was begging for the rest.  It is amazing what about 5 or 6 days off of work in a row can do for someone with CFS & Fibro! 

At all three of my trips to my family doctor over the past month she has been telling me that my ears are full of fluid from the sinus infection, along with my head and a lot of post nasal drainage down the back of my throat.

When the ENT looked in my ears today he said, “You don’t have any fluid in your ears at all.”  I told him, “I was just at my doctor’s office 2 days ago and she said my ears were both full of fluid.”  He said it LOOKS like my ears are full of fluid because the eardrums have thickened due to repeated sinus infections.  This will give the appearance of a cloudy eardrum. 

He said that my ears feel full and wet inside all of the time and it feels like stuff is moving around because I have TMJ, which I knew about that.  But the wet feeling is coming from TMJ? 

My family doctor wanted me to have a CT scan of my sinuses and he said he didn’t think that was necessary either.  He said that my chronic health issues, the stress of the past few months, working around the public, and all of the illness that has been going around is just extra hard on my body (no kidding!). 

So that is how I made out.  My head is still full of congestion, which he did say it was full of!  My ears hurt like crazy and feel full, even though it is apparently coming from TMJ, and as usual, everything else is blamed on my chronic health problems that I have no control over and out the door I was sent.

He did notice the swelling in my nasal area, around my eyes, and nose from the sinus infection.  He also noted that it should not be taking me so long to recover given the two very strong antibiotics I was given.  His concern was that it was hard for HIM to differentiate whether or not the severity of my headaches lately are from the sinuses or from the CFS & Fibromyalgia.  I guess it doesn’t matter that I would know the difference since I’m the one that lives with it every day? 

Another frustrating day in the life of a chronic illness patient’s doctor visit!

Spinal Fluid Abnormalities Found In ME/CFS & Lyme Disease

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 A recent study may have found that there are measurable differences between the spinal fluid levels of ME/CFS patients, Lyme Disease patients, and the healthy control subjects used in the study. 

Pooled cerebrospinal fluid (CSF) samples from nPTLS patients, CFS patients, and healthy volunteers were comprehensively analyzed using high-resolution mass spectrometry (MS), coupled with immunoaffinity depletion methods to reduce protein-masking by abundant proteins. Individual patient and healthy control CSF samples were analyzed directly employing a MS-based label-free quantitative proteomics approach. We found that both groups, and individuals within the groups, could be distinguished from each other and normals based on their specific CSF proteins.

Non-redundant protein levels of CFS patients = 2,783
Non-redundant protein levels of post-treatment Lyme patients = 2,768
Non-redundant protein levels of healthy control subjects = 2,630

I remember reading back a few years ago something that had to do with spinal fluid and the problems it may cause in ME/CFS patients.  At the time, I believe the doctors/researchers were saying that we have a build up of spinal fluid that needs to be relieved.  Spinal taps, I believe, were being discussed to help treat ME/CFS.  Does anyone remember this? 

Source

Third Trip to the Doctor Today for Sinuses

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Today was my third trip in the last month to the doctor’s office for the sinus infection that is stubbornly holding on. As the doctor was examining my ears, my sinuses, and my throat, she was in shock over how I still had the same amount of fluid, the same amount of inflammation, and the same amount of drainage into my throat as I did when I went to see her two antibiotics ago. 

Instead of putting me on a third round of antibiotics, she decided to put me on an 8-day course of prednisone and to send me for a CAT scan of my sinuses with contrast and she was going to mark the order STAT so that it would be scheduled this week while I am off of work. 

I finally broke down and requested a week off of work so that I could try and get my body built back up and could hopefully get enough rest to get better.  I hope that the combination of the prednisone and the time off will be what I need. 

Wednesday I am also scheduled to go to the ENT doctor to see what he has to say.

ME/CFS Covered Again In WSJ & New York Times

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The Wall Street Journal and the New York Times do an excellent job of running several stories on ME/CFS throughout the year. I wanted to post a few excerpts and links to three recent articles that were just out by these two popular papers.

The Puzzle of Chronic Fatigue

One snowy afternoon in October 1985, eight children from the tiny farming community of Lyndonville, N.Y., went sledding together. Within a few weeks, they all got sick. David Bell, the local doctor who treated the children, recalls that their symptoms were similar to the flu: sore throats, fevers, muscle aches and severe fatigue. After three days, they hadn’t recovered. Then a week. A month. Ninety days. Six months after their sledding trip, the children still couldn’t go back to the lone school in town. They had trouble getting out of bed. Light gave them a headache. Four of the eight were so sick that they were essentially disabled, Dr. Bell recalls. Tests ruled out mono and other infections. “We had no idea at all what it was,” he says.

Wall Street Journal

An Illness That’s Hard To Live With—Or Define

In 1990, after a bout with mononucleosis, I contracted chronic fatigue syndrome. For month after month, I felt as if I had the worst case of the flu, and I had little stamina to do even the most basic life activities. I had to leave my work as a psychology professor for a year and a half. I was lucky to have a strong support system and an understanding work setting—something many other patients don’t have—but I discovered just how mysterious and frustrating the illness is. I also realized how easy it is for people to confuse the experience of everyday tiredness with the incapacitating illness known as CFS.

Wall Street Journal

Troubles of Chronic Fatigue Syndrome Start With Defining It

When reports emerged 30 years ago that young gay men were suffering from rare forms of pneumonia and cancer, public health investigators scrambled to understand what appeared to be a deadly immune disorder: What were the symptoms? Who was most susceptible? What kinds of infections were markers of the disease?  They were seeking the epidemiologist’s most essential tool — an accurate case definition, a set of criteria that simultaneously include people with the illness and exclude those without it. With AIDS, investigators soon recognized that injection-drug users, hemophiliacs and other demographic groups were also at risk, and the case definition evolved over time to incorporate lab evidence of immune dysfunction and other refinements based on scientific advances.

New York Times

Doctors Need to Know Campaign

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PANDORA & the ME/CFS Worldwide Patient Alliance kicked off the “Doctors Need to Know” Campaign on March 1st and it runs through March 15th and every ME/CFS patient is needed to get involved!  As a chronic illness community, we have found that if we want to get any results and any action taken for ME/CFS, we have to do the work ourselves because the CDC and the organizations who are supposed to be out here working for us aren’t doing their jobs.

As we are all very well aware, the research of the biological nature of ME/CFS has not been getting to the physicians, or if it has, they have been completely dismissing it.  The ME/CFS Worldwide Patient Alliance says:

This is detrimental to patient quality of life in that a majority of patients have little or no access to knowledgeable medical care. We also acknowledge that this physician ignorance contributes to patient challenges in documenting their disability.

So with this in mind, the “Doctors Need to Know” Campaign is asking all ME/CFS patients to send out the following:

  • 5 hand-written letters to 5 local physicians in your area.  The sample letter can be as follows (you can view all instructions & info at the ME/CFS Worldwide Discussion Board):

The suggestion of a hand-written letter is because it will hopefully cut through the clutter of other letters and draw attention of assistants and physicians. It will look personal, just like people sift through their own mail and anything hand-written catches the eye because it is likely something personal. But this is only a suggestion. If you find writing five short letters by hand too difficult, please do what you can.

Suggested letter content:

Dear ____________________
I am an ME/CFS (chronic fatigue syndrome) patient who lives in ______________________. I thought you might be interested in these documents of recent scientific developments in ME/CFS. If you would like more information, go to the IACFS/ME website or contact me.

Thank you for your attention.

Signature
e-mail

The other documents the campaign is asking us to submit are scientific findings/documents such as:

  • National Institutes of Health announcement of their retrovirus findings.
  • Press release announcing unique proteins are found in spinal fluid of ME/CFS patients.
  • National Cancer Institute announcement of the original study, with Whittemore Peterson Institute and Cleveland Clinic, that showed high level of retrovirus in ME/CFS patients.
  • List of top ten biological discoveries in ME/CFS patients, according to Dr. Anthony Komaroff, a professor at Harvard Medical School.

ME/CFS & Fibromyalgia Around the Web

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Finding Footwear With Fibromyalgia

To deal with my foot pain, the number one thing I look for in shoes is a good amount of cushion. I used to like a hard-soled shoe like Birkenstocks, but I can’t tolerate those at all anymore! Now, the softer the sole the better. My number two requirement is arch support — nothing that puts a lot of pressure on my arch, but a little something. Third is enough space so that nothing’s putting too much pressure on any point. My feet aren’t wide, but many of my shoes are.

About.com: FM & CF

Poll: Doctors’ Attitudes Toward Fibromyalgia & Chronic Fatigue Syndrome

With fibromyalgia and chronic fatigue syndrome, we don’t even have the “luxury” of all doctors “believing” in our illnesses or taking us seriously. Sure, many do — more all the time, in fact — but we still have far too many doctors and other health-care providers who have ignored the past 2 decades of research and reached the wrong conclusions about these illnesses.

About.com:  FM & CF

Listening to the Right Voice

So often we hear a voice that is all our own, but is not speaking truth. Thoughts that seep into our life and minds, thoughts of our weakness, unworthiness or inadequacy can be so sneaky. They can become a part our day to day thinking, more than a random thought now and then.  When these thoughts become all we know, it can seem impossible to believe anything different, and that is why we must identify these thoughts and the fact that they are lies. Any voice that creates self-doubt or loathing is simply not true, but accepting that and recognizing it can be difficult. We have lived with the lies for so long, that seeing their fallacy is harder than believing the real truth.

Una Vita Bella

Working out while being sick.

When you are sick your body needs to focus all it’s energy on getting healthy again. And if you decide to workout, even if it is just a simple exercise like for example walking, how efficient will that workout be for you? It’s not worth it. You are exercising to become fit and healthy, and working out while being sick will lead to the exact opposite.

Fitness By Z

I Found My Bootstraps

I am working hard to put my life back in order post-strokes and that Prednisone fiasco that made me loony as a loon. I can never quite get it together, never get done all that needs to be done. But each day I get up and try. Then that dark caper depression reared its ugly head and sent me into the tailspin of an entirely different monster. I am a fragile mere days coming out of the worst of it and reaching out for goodness and optimism to define my life, regardless of the pain and anguish and lost opportunity us chronically ill patients are all too familiar with.

Chronicles of Fibromyalgia

Bang Head Here

That is what I feel like doing, what I feel like I need to release the stress from today’s events earlier today. But let me back up just a bit. This actually started a week ago, and really nearly two years ago when my husband lost his job and with it our medical insurance. OH ! Yep you are getting it, even before I go further are you not? Any time you mention insurance suddenly you become part of a club that totally understands why one would want to bang their head out of frustration.

Ruby’s Musings

Low Blood Volume, POTS, and NMH

Hi everyone!  It’s been a while since I’ve done a more informational post and I think it’s about time.  Given the progress I have made, I am always looking to share my discoveries with all of you in the hope that you might have a similar symptom and could benefit from my experience.  As the title suggests, the topics I want to discuss today are low blood volume, POTS (Postural Orthostatic Tachycardia Syndrome), and NMH (neurally Mediated Hypotension).

Chronic Fatigue Syndrome and Fibromyalgia: A Day in the Life

I’m On My Way!

I’ve been having a very busy last few days, only to get even more busier the day of my surgery. No date set yet as I haven’t finished my diagnostic testing nor has Dr. Wigal written me the clearance for surgery note that I need her to do. It always boils down to me bothering Dr. Wigal for one thing or another! All she needs to do is write on her prescription pad, “patient is ready for surgery.” I called her office yesterday to start the process. Hopefully it will be done by next Wednesday, as this is when I go to Gilbert to finish up the tests and I can hand the paper in right there and not have to rely on them faxing it…..they won’t, for some reason!! And I’m getting tired of all the harassment!

FibromyWHAT?

Devotion: Knowing Security During Times of Uncertainty

“. . . we who have fled to take hold of the hope set before us may be greatly encouraged. We have this hope as an anchor for the soul, firm and secure.” (Hebrews 6:18b-19a)

A sentence I recently read stopped me cold. The scene was a father listening to his upset daughter. The father asked his child, “Is what you are saying true, or is it how you are feeling?”  I pondered those words. I thought of the times I cry out to the Lord when I am in the midst of overwhelming challenges. I don’t doubt Him. I feel worn to a place where I doubt myself. How will I bear one more moment? I cry out because I feel all of my own strength is drained. I feel I am in the midst of a storm, needing comfort and peace.

Rest Ministries

Sacred Healing Resolutions for CFS

Here on the Health Matters Show podcast and blog post today, we’re talking about CFS and Sacred Healing Resolutions. (See the audio podcast file below.)  Today’s show is happy to link together two parts of the CFS discussion: the physical nature of CFS discoveries, such as with spinal fluids and the spiritual or sacred nature of getting well.

Health Matters Show

Mission 2011: Saying “Yes!” to Special Events

As fate would have it, I have a “special event” this month that I need to diligently plan for so I can make it through it without a flare-up disaster. Which makes this the perfect month to tackle the topic of special events for my series of Mission 2011 posts.  Let’s start with talking about what exactly I mean when I say “special event.” 
I guess for someone healthy, a special event might be a wedding, a party celebrating a milestone birthday or a dream vacation–something big, fun and out-of-the-ordinary. For those of us living with chronic illness, a “special event” could simply mean leaving the house! Or it could mean going to a concert, a play, visiting friends or going to a holiday dinner.

Oh My Aches & Pains!

New Gulf War illness study looking for participants
If you served in the 1991 Gulf War and developed symptoms of Gulf War related illness, you may be eligible to participate in a treatment protocol conducted by Dr. William J. Meggs at the Brody School of Medicine at East Carolina University, in Greenville, North Carolina and sponsored by the Department of Defense.  After a telephone screening interview, participants who qualify and wish to participate will be brought to the Brody School of Medicine at East Carolina University, in Greenville, North Carolina, to undergo an evaluation.

CFS Infighting On Steroids

The nasty contentiousness happening on some ME/CFS on-line forums, and metastasizing over into Facebook pages and email is revolting. People have become rabid, stalking victims in packs. Such things as truth, objectivity, civility, and accountability are being discarded in their attacks.  I’ve never in all the years of CFS advocacy seen anything like this rabid mass phenomenon. We’ve had individual people who have displayed such deranged viciousness, but not the gladiator pit mass attacks we see today.

 
The Transforming Faces of the CFIDS Association of America
 
In the early years of the CFIDS Association of America (CAA) the organization was a dynamic organization, doing its best to represent and help patients.
As Kim McCleary became more entrenched in the CAA, taking over increasingly more control of it, their [her] advocacy still began to change. Instead of acting as a diplomatic advocate trying to make advocacy headway with government officials and agencies, her actions and statement about health department activities and/or lack there of were becoming increasingly anemic.  Effective diplomacy is one thing, but increasingly respected advocates and informed patients were talking about McCleary being “in bed with the health department.”
 

 PetitionCAA Does Not Speak For ME

Several independent advocates have collaborated to produce a petition requesting that government agencies recognize that the CAA is not our voice.  It’s my pleasure to have been asked to post it to Change.org and to roll it out, although the petition itself is a grass roots collaboration.    The petition is here.  The CFIDS Association of America has proven itself to be an inadequate representative of our illness. The following petition is designed to be presented to the NIH, CDC, and CFSAC. Our goal is to present it at the May 2011 CFSAC meeting.

CFS Untied

How To Treat People Who Use Mobility Aids

I use a scooter when I have to walk long distances. When I do I feel as if I’m a different person because of how people react to me. People who use mobility aids such as a wheelchair, power chair or scooter are people just like you. It’s difficult enough to admit the need for these types of medical devices but to go into public to feel ignored, unsafe or unworthy makes some people who have health issues stay home unwilling to face the world, or too angry and stressed out.

My Chronic Life

A Better Quality of Problem!

When you have a chronic illness it is easy to think that once you are better life will be perfect; that you will be running around in a bubble of loveliness; that nothing will ever get to you again. If I get my health back I will never complain or worry about anything EVER. EVER. EVER!  Well I have failed on that score already! But there is no doubt that some problems are much better than others. And I realised the other day all my current problems are now of excellent quality. A couple of years ago problems were all about getting through the day:  Will I be able to get out of bed before mid day? Will I have the energy to wash and dry my hair? How am I going to stay sane? And so on. I am now up by 8 am every day. It’s an energy miracle! I now shower and get ready without even thinking about it. And I no longer have to worry that it will take me a week – or longer – to recover from ‘over doing’ it. I now have balance in my life and if I don’t try and do too much it all kinda works out.

Sofa & the City

Sinus Infection/Chronic Sinusitis & Other Problems Still Flaring

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I have just completed 20 days of antibiotics, 10 days of antibiotics that the doctor says they reserve for the “big gun” infections, and guess what?  I’m still sick.  I don’t feel as bad as I did, but I am still not well and I still have a lot of pressure in my head, my ears are still full of fluid, my head feels like it is going to explode, I’m still not sleeping and my ears hurt like crazy.  Now my neck is hurting like mad also.  Just turning my eyes to the side to look at something is causing excruciating pain in my head – that is how much pressure I have in my sinuses and in my head. 

I have been using a Netti Pot, which is so gross.  I can’t stand that feeling but I have been faithfully using it several times a day but I am having trouble with it because my sinuses are clogged.  When I pour the saline solution into my right nostril, it goes directly into my throat instead of out my other nostril and I’m doing it the exact same way as the left side so I am assuming it is because that side is clogged.  So I am hacking and gagging like crazy because that stuff is going down the back of my throat. 

I talked to my manager the other day and told him not to schedule me for next week because I’m not getting well and I need some time off so that I could get my body built back up.  When someone already has chronic health issues like those of us with CFS, something as minor as even a cold can take a major toll on our bodies. 

I guess I’m going to call my ENT tomorrow since I still feel so bad.  I do not want to take anymore antibiotics because apparently they aren’t going to help regardless of what I take.  I need to take another course of treatment. 

It seems this happens to me every year or so where I will get a sinus infection and then I can’t recover from it.  Why is it with CFS patients we have sinus problems?  I am so tired of dealing with all of this crap all of the time.

ME/CFS Makes Everyday Life Overwhelming

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Lack of sleep, and the hazy, uncontrollable, unrelenting exhaustion that zaps every bit of energy from my body – a CFS flare.  It has taken over my body, mind and soul and I feel it in everything I try to do and it is in every thought in my head.  It’s hard to explain to people but when a flare hits it is almost like becoming another person.  When I am not in a flare, I am bubbly, happy, always smiling, positive, and have tons of goals and dreams that I am ready to shoot for.

When the ME/CFS flare hits, I become depressed, detached, lifeless.  I have no drive or no desire to see anyone, talk to anyone, be around anyone – I just want to be alone.  I don’t care about anything and the only thing my body begs for is to sleep.  I don’t want to eat, I don’t want to drink, I don’t want to deal with the normal tasks of everyday life because everything is so overwhelming during a flare.

With ME/CFS, we are surviving on only a small amount of energy and that has to last.  When that supply is gone, it’s gone – there isn’t anymore left.  I’ve said it many times before – we have to plan our days so that we have enough energy to make it to the end of the day so that we can get done what we need to get done.  If we have a flare, we’re screwed because guess what?  There is now no energy reserve at all – there is nothing to take from.  We are running on empty and because we don’t sleep, it takes so much longer to build our energy reserve back up.

That’s when the overwhelming feelings kick in because we still have responsibilities and things to do and our bodies are fighting us every step of the way.  We break down because our illness has once again taken over our lives and we have no option but to give into it.  There’s no use trying to fight and push against ME/CFS because it wins every single time.  The disease always wins – no matter what. 

I hate feeling like crap – like nothing.  That’s what I feel like during a flare.

Breakdown At Doctor’s Office Yesterday – Maybe A Breakthrough?

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I am normally not a very emotional person and I don’t cry a lot. My son and I were just talking about crying the other week and I told him that it was okay to cry and he said, “But mom, you don’t cry”. I told him I have cried and I do cry sometimes, I’m just not the type of person who cries often or who cries frequently. I also am the type of person who pretty much keeps my emotions to myself and on the occasions where I have felt the need to cry, I will go off somewhere alone, cry, and try not to do it around others.  The very rare occasions where I have cried in front of others where I wasn’t able to control my emotions (with the exceptions of funerals, weddings, and those types of events), I felt totally out of control and those occurrences were completely out of character for me and I would feel completely embarrassed for them afterward.  

This is one of the main reasons I write this blog – so that I have an outlet because I am not verbally able to express how I feel often and I know that not getting out those feelings and emotions is not healthy and further can add to my health problems.  Probably the one area in my life that I have shed tears over the most has been grieving over my health.  I think every time I experience a period of time where I am doing really well for a while and then I have a relapse, it is like being slapped with  the diagnosis all over again.  I had this hit me yesterday when I was at my doctor’s appointment.  As hard as I tried, and with as sick as I’ve been, the tears just started flowing at the doctor’s office and I couldn’t get them to stop.

I went back to the doctor’s office because my sinus infection and symptoms have not improved any since I went to see her last week and she confirmed that my:

  • ears were still just as full of fluid and mucus.
  • my head and nose were still full of sinus pressure.
  • my throat still had the signs of a lot of sinus drainage.

I found out that my urine test came back sterile so I do not have a bladder infection – it is indeed an Interstitial Cystitis flare.  She also confirmed (which I already knew) that my other symptoms were definitely a CFS relapse and Fibromyalgia relapse.  When I was talking to her about my flares and symptoms, I broke down in tears.  You would think that after being sick for so long that I would be used to these flares by now but the truth is, you never, ever get used to feeling so totally helpless and so totally out of control of your life.  Crying to the doctor may help relieve some of the stress I feel from being chronically ill, but there wasn’t anything she could for me for the flares.  She gave me some really strong antibiotics (she called them “big guns”) for the sinus infection but the only thing she could tell me to do was to “go home and rest”. 

I told her that up until December, I had gotten to a point where I had struck a balance with work, exercise and stress levels, and diet where I was handling everything pretty well and my health was improving.  Then when my husband lost his job, everything went haywire and I’ve went downhill since. 

I explained to her that now I feel like I don’t have the choices I had before when my husband was still working.  If I was flaring, I could take off work and financially I wouldn’t have to worry about it.  But now I feel like I can’t miss work and that I have to push myself even though it is almost impossible because we need the money.  I’m fighting a losing battle right now and there is no way I’m going to get any better unless I have time to recover but I can’t miss work because we need the income coming in.  Our financial responsibilities have increased dramatically over the past year and our income has decreased dramatically and it has just been a very stressful situation all around. 

My options are limited because of my illnesses and there is only so much I can do in a day.  I’ve spent the past three days, with the exception of going to the doctor, doing nothing but sleeping and trying to get over the flare and I still feel no better than what I did.  CFS is even more stubborn than I am and it refuses to leave until it is good and ready.  It’s hard to tell how long the flare will be here. 

But while I am flaring, I need to try and focus on all of the good days I have had over the past months and remember all of the fun I’ve had with my son and husband.  Those times are priceless and those memories can’t be taken from me.  I need to focus on the good things in my life, focus on what I can do, and be thankful that I am still not as sick as a lot of people are with ME/CFS.  At least I am not stuck in bed every single day of my life.  Maybe I needed that breakdown at the doctor’s office so that I would have this breakthrough in my life!