Can Diet Really Help ME/CFS & Fibromyalgia Patients’ Symptoms?

I recently wrote a post where I talked about how I have been having an improvement in symptoms and have been having more energy since changing my diet and one of my online friends commented that she had cut out a lot of the things that I have cut out of my diet but she didn’t feel any improvement.  Her comment has me thinking…why do so many of us have the same illness, the same symptoms, yet everything we do affects us each differently?  We are always told to eat healthy, exercise, take vitamins and we will be healthy, but how many of us have done all of those things over the years and are still sick?  Can eating properly REALLY help our symptoms?  I know I started seeing an improvement just a few short days after I started my new diet.  Now I can’t say that I’m going to continue to feel better because I have been down this road before.  Once my body gets used to the diet I may start feeling bad again – it’s happened before.  But I’m always hopeful.  I also am not crazy enough to think that I’m going to be cured just from changing my diet. 

But I know that I can’t go wrong by continuing to eat healthy and by changing my lifestyle.  Eating right does have health benefits and it can give the immune system a boost and gives the body more energy, which we all could use more of! 

If you want to see if there are foods that you are eating that may be making your CFS and Fibromyalgia symptoms worse, you can try an elimination diet.  I posted Dr. Paul Cheney’s CFS Elimination Diet back in 2007.   Dr. Cheney says that over half of all of the CFS patients that he studied had food sensitivities.  He believes that the best way to find out what foods a CFS patient is allergic/sensitive to is to do an elimination diet.

You can click on the link in the paragraph above that details the elimination diet, what the diet is limited to, and how you will reintroduce foods back into your diet.  That is how you find out what you are sensitive to.  I have found out from doing my own experimenting that I haves sensitivities to sugar, yeast, and processed foods.   The diet is very restricted: 

• limited to unrefined/whole fresh foods
• no food additives, colorings, or artificial sugars
• gluten free, casein free, and lactose free
• very low in salicylates
• very low in yeast
• hypoallergenic
• very low in dietary glutamates
• very low in dietary biogenic amines
• very low in dietary solanines
• no caffeine and no alcohol

Please read the entire CFS Elimination Diet post if you would like to try it and notice any results.  It will be hard, and it won’t be fun…but it may be worth it if you feel better.

Painful Lymph Nodes, Sore Throat & CFS Night Sweats

I started feeling a little better toward the end of last week but the past two nights I haven’t slept hardly at all and I’m feeling the symptoms getting worse again.  I am particularly having trouble with the CFS sore throat and the painful, swollen lymph nodes mainly under my left armpit.  So I know that when I am experiencing the sore throat and swollen/painful lymph nodes I’m still in danger.  I am supposed to go back to work on Wednesday.  I don’t know yet if I will be able to do it or not.

The sore throat is not real severe but it’s there enough that I can tell it is the typical CFS sore throat.  Not the type of sore throat experienced with strep throat or a cold but more of a swollen kind of sore throat.  It’s not the type of sore throat that Sucrets, cough medicine, or throat spray will help lessen the pain.  My armpits are so sore, especially the left one, that I can’t put my arm down completely at my side.  I have to keep my arm propped out so that nothing it touching. 

As I am writing this, I am also having terrible night sweats.  I have the air conditioner turned down to 70 and I am still sweating.  I can feel that my back is wet and that my hair is wet at the bottom of my neck.  With CFS it’s like going through menopause all of the time I guess!  Not fun at all.  I am just so exhausted.  I want and need to sleep so badly but I can’t fall asleep.  My body is exhausted, my eyes can barely stay open but when I lie down sleep does not come.  Last night I didn’t sleep and I only slept about 2 hours today.  Things are not looking good for me.

Driving Difficulties With ME/CFS

The other night I wrote a post about vision problems with ME/CFS and it reminded of me how driving is affected also, partly because of the vision problems.   When I have severe flares from the CFS, I don’t drive.  I have found out over the years even during the less severe flares when I should hand the keys over to someone else.  Back before I realized how severely my driving could be affected from the CFS, I would drive and I would literally get lost in my local town.  I could seriously not remember how to get from point A to point B – in the area I have lived for years.  It is very scary. 

There are times when I can barely manuver the vehicle because I physically do not have the strength to do so.  I will notice that steering the car is extremely difficult and it is hard to keep the car steady.  I know that I have to park the vehicle and if I want or need to go somewhere (if I have the energy), my husband will have to do the driving. 

I have had to pull off the road many, many times over the years because of the fatigue from CFS.  My eyes will also get very small and squinty when the CFS is affecting me and that makes it hard to see as well.

I have to wear polarized sunglasses when driving all year round because the light hurts my eyes so bad.  If it is snowing like crazy you will see me driving with my shades on.  Driving at night proves to be difficult because of the glare from all of the headlights.   If you read the post about the vision problems with ME/CFS ,  light is a problem for our eyes.  It causes headaches, watery eyes and makes our vision blurry. 

It has been hard for me to turn over the driving to my husband.  Driving is something I have always loved to do.  When traveling, I am always the one to do the bulk of the driving and when I know it’s not safe for me to be behind the wheel, I have to stifle my pride and do what’s best and safe for everyone.  But it just shows how ME/CFS touches every aspect of our lives, even the little things like driving that most people take for granted. 

Please share any driving difficulties you have had due to CFS.

Visual Problems with ME/CFS

Last week on the CFIDS Association Facebook page, the organization brought up issues with visual disturbances in ME/CFS.  Visual problems are something that is hard for people who do not have CFS to understand and it’s hard to explain to them why we have them.  When someone questions why I wear sunglasses even when it’s almost dark outside, I just say it’s part of my illness but I wish I knew why visual problems exist with CFS. 

Here is what the CFIDS Association had to say about visual disturbances with ME/CFS in their 2001 article:

There are few references in the literature to visual and/or ocular disturbances in chronic fatigue syndrome (CFS), even though visual symptoms are common. Ocular symptoms have been quantified, and are significantly more common than in control groups.

The ocular signs and symptoms of CFS have not been considered to be a major part of this condition in the past, yet it becomes very obvious when working with these patients that the ocular system is very much affected by, and in turn affects, this systemic condition.

The visual symptoms typically encountered with CFS patients include:

• Blurred or foggy distance and/or near vision. Blur tends to fluctuate according to the state of the fatigue at the time;
• Difficulty focusing from distance to near and/or near to distance;
• Slowness or inability to focus on objects, particularly at near;
• Difficulty tracking lines of print. Patients seem confused and distracted by the lines of print above and below where they are reading;
• Poor short-term memory and concentration (generally) with reading being markedly affected;
• Diplopia or ghosting of images;
• Problems with peripheral vision; patients complain of not seeing objects in their side vision and of continually bumping into things and veering. Some say they feel like they have tunnel vision;
• Misjudging distances, clumsiness, poor balance and coordination. Diffi-culty driving due to problems judging distances;
• Dizziness and inability to tolerate looking at moving objects;
• Spots, flashes of light, floaters and halos;
• Intolerance to light (glare);
• Grittiness, burning, dryness or itchiness. Patients complain of sore eyes usually becoming worse as the day progresses;
• Headaches often increasing when reading, concentrating visually and driving.
• In many cases almost all of these symptoms occur, producing varying degrees of disability. These patients have sensory intolerance and appear to have a degree of inability to suppress background sensory events from reaching a distracting level in consciousness.

I have had visual problems for years since I developed CFS and my main problems would have to be intolerance to light, headaches, blurry vision, seeing spots and flashes.  I will think that something is in front of my eyes 0r hanging from my hair in my eyes but it is usually the black spots that I see.  I keep my house dark most of the time and I am always having my family turn all of the lights off because I can’t stand to have the lights shining. 

I have trouble seeing the guide on the television because everything will look blurry.  So when I went to the eye doctor, they couldn’t help me because she said my vision was changing from minute to minute.  She said there wasn’t any way she could prescribe glasses when my vision changed so frequently.  She said it was due to chronic illness and medications. 

According to the CFIDS Association, their studies showed the below listed ocular findings upon examination:

Poor oculomotor control. This is evident when observing motilities, particularly saccadic eye movements. Saccades, normally quick eye movements, are very slow, with marked jerkiness. Conscious effort goes into changing visual fixation, as if it is hard to let go of looking at an object once vision is fixed on it. Pursuits (tracking an object) are not smooth and cannot be done quickly. Discomfort and often nausea is associated with saccadic and pursuit eye movements;

Exophoria, the tendency for one eye to diverge or turn outward when the other eye is covered, is often greater at near in these patients, usually with a slow recovery. However, the exophoria may not appear high due to a long-term compensation process. CFS patients often adopt a typical posture associated with exophoria-sitting well forward on the chair with their shoulders halfway down the chair back in a semi-reclined position;

Remote nearpoint of convergence, where both eyes converge on the same close-in location at the same time, is usually observed, with slow recovery. This test may be quite painful;

Reach/grasp/release tests that require the patient to reach out and touch or grasp an object, shows a marked decrease in the patient s ability to reach and grasp after release. One eye usually diverges without the patient being aware. Patients often complain of nausea, significant discomfort or dizziness when performing this test;

Near/far/near fixations commonly show poor convergence at near with one eye usually diverging. Such vergence changes are typically very slow and often uncomfortable to execute, with sometimes an associated tendency to use raised eyebrows and wide open eyes to assist in changing to far;

Constricted peripheral fields. In my experience, treatment with lenses and vision therapy produces marked improvements in field. In my opinion there are probably several factors involved, including improved central/peripheral processing and sensory-motor coordination, and hence heightened attention;

Staring appearance; low blink rate and incomplete blinking;

Small pupils;

Sensitivity to lights;

Tear film and ocular surface abnormalities. Low tear break-up time, related to inadequate production of the oil or mucus layer in tears, is frequently observed. So is rose bengal corneal staining, which reveals cell death in the cornea due to dryness;

Low grade chronic allergic conjunctivitis;

Visual midline shift in these patients, particularly if the patient has been diagnosed with fibromyalgia.

Sometimes CFS Feels Like Bipolar Disorder to Me

There have been many times during the past 20 years that I have been sick with ME/CFS that I have wondered if maybe I have bipolar disorder.  I will have many times over the years where I have experienced the extreme highs of energy and where I can’t sit still only to be hit with the debilitating fatigue and the lows of ME/CFS that make me feel like a totally different person. 

When I am feeling really well, which doesn’t happen very often, I am so excited about life.  I want to take on the world, I make plans to do all sorts of things, and I fully intend on doing all of them.  Then the bottom falls out of my world, the CFS sucks the life out of me, and everything I wanted to do just a few days before no longer holds any excitement for me.  Everything that I was hoping and dreaming to accomplish all of a sudden seems overwhelming and too big to tackle – even for a type A like me. 

For a short time, I can pretend to be a normal person and I console myself with the fact that this is probably who I really would be if it weren’t for the CFS and other problems.  The high is so good that I don’t sleep and I don’t want to sleep because I don’t want to miss out on any time feeling well.  Feeling well is such a fleeting moment for so many of us that when we have a taste of it, we crave it immensely and want it to last on and on.

When the CFS crash hits, it is as if those days never existed and all I can concentrate on is how bad I feel.  I hate life, I hate everything.  I just want to sleep and hope that when I wake up it will all be better.  But it’s not.  The crashes take longer and longer to recover from the older I get and they seem to come closer and closer together.   Here is a brief excerpt from a bipolar website on the symptoms of bipolar disorder:

Bipolar disorder (also known as manic depression) causes serious shifts in mood, energy, thinking, and behavior–from the highs of mania on one extreme, to the lows of depression on the other. More than just a fleeting good or bad mood, the cycles of bipolar disorder last for days, weeks, or months. And unlike ordinary mood swings, the mood changes of bipolar disorder are so intense that they interfere with your ability to function.

The main difference I feel is that I never have any periods where I feel well for weeks or months, as in people with bipolar disorder.   I may have a few days occasionally where I feel on top of the world and at these times it is when the crashes are even harder to deal with. 

Depression is normal in people with chronic illnesses like CFS.  I have been dismissed many times as just having depression when it was so much more than that.  But bipolar disorder is a whole different story from depression.  I have been told by my husband and others that I am like two totally different people at times.   I feel like two people most of the time.  Normal just isn’t in the cards for me, however.

ME/CFS Pain vs. Fibromyalgia Pain – How I Can Tell the Difference

Having one chronic illness like CFS or Fibromyalgia can be complicated enough.  But then add to it one or more additional chronic illnesses and it feels like your whole world is turned upside down.   I know there are many days I feel like the picture above – in a maze of symptoms that there is no way out of.  My life first came to a halt by ME/CFS, next it was Fibromyalgia added to the list, and next was Interstitial Cystitis.  Then in between being diagnosed with these three major chronic illnesses were complications diagnosed because of them:  IBS, advanced DDD, BET, and TMJ. 

It can be hard telling from one day to the next when you have multiple chronic illnesses which symptoms are coming from which illness.  Some of them are easy but others can be more difficult.  I know when I feel like I have a bladder infection, I have frequent urination, etc. that my IC is acting up.  But what if you have body pain and you have both ME/CFS and Fibromyalgia?  How do you know which illness is causing the pain?   With having ME/CFS more severely than Fibromyalgia, I have been able to distinguish when I have pain which illness it is coming from. 

In my own situation, I have found that my chronic headaches come from ME/CFS.  I had ME/CFS first so this is how I know which illness the headaches are coming from.  They haven’t changed any since the Fibromyalgia began and the pain isn’t any different.  The one thing I have noticed in my own personal experience, is that wherever the body is weak, ME/CFS tends to seek out those areas and cause a pain that is much deeper.  For example, I hurt my back when I was 18.  Once I became really ill with ME/CFS, I found that during my flares my back would hurt a lot worse.   It still remains that way. 

The pain I get from ME/CFS feels more like pain down to the bone.  It is very deep, it’s hard to pinpoint an exact spot but I know that the area hurts.  It is more like a gnawling, exhausting pain if that makes sense.  It is a weary type of pain.  The Fibromyalgia pain I experience is painful to the touch on the very surface of my skin.  I can put my hand on an area that hurts and the lightest touch will cause me to jump. 

For me, the ME/CFS pain is harder to treat and is what painkillers don’t work as well for.  The CFS pain also lasts longer than the Fibro pain.  The Fibromyalgia pain responds better to pain medication than the CFS pain, but it still doesn’t go away.  The pain is always there.  I know that everyone is different and your experience might be totally different than mine.  But this is how I perceive the pain with my illnesses.

Post-Exertional Malaise – the CFS Symptom That Doesn’t Know the Difference Between Work & Play

When my husband and I first started dating, we were on the go nonstop.  I went from a marriage to a man who never took me anywhere or did anything with me to a man who was on the go all of the time.  It only took about 3 months into our relationship for all of the activity to catch up with me.  I had the worst CFS flare of my life and was down for months.  I had to go back to work with only very part-time hours and build myself back up slowly over time to full-time again back then.  My husband has always been supportive and has never once thought that I was faking my illness like my ex-husband did.  He could see how I would change, how I would look, and how the illness affected me.  He also understood that one day I could be up doing loads of stuff and the next I could be in bed.  The one thing he never understood and still has trouble understanding is that CFS doesn’t know the difference between work and play. 

The best definition of post-exertional malaise I have found says “Post-exertional malaise is extreme fatigue/exhaustion of inappropriate severity that can temporarily immobilize the patient and worsen her/his symptoms following normal physical or mental activity. It takes the patient an inordinate amount of time to recover – 24 hours or more.” 

When my husband and I were dating, he wouldn’t see anything wrong with taking me on vacation and going site-seeing and running all over the place visiting and having a great time, but he would get upset if my boss wanted me to work an extra few hours.  He wasn’t being mean to me or unusually cruel.  He was trying to make up for all the years I never got to go anywhere or do anything but work and take care of a drunk.  I loved him for his passion for me to see life – I just couldn’t get him to understand that I had to do it all on a much smaller scale. 

ANY type of activity that causes the body to be used physically or mentally can cause post-exertional malaise in CFS patients.  Just sitting here typing this post could cause my symptoms to flare.  The smallest physical or mental activity is responsible for the months upon months and years  I have lost over the last 20 years to this illness.  I also have found that I have to define MY meaning of “resting” to people over the years.  For healthy people, resting may be sitting down and reading a book, taking a light walk, watching television, or emersing themselves into a hobby.  As a CFS patient, my definition of resting means doing absolutely nothing but lying down and going to sleep.  I can be lying down for 2 – 3 hours needing desperately to sleep but my body won’t allow it.  I will get up from lying down and I won’t feel any better.  My husband will say, “But you just rested for 2 or 3 hours.  You don’t feel any better at all?”  He believes that I don’t feel any better, it’s just hard for him to understand why I don’t. 

I love spending time with my family, going on trips, enjoying life and having fun.  But there is always this impending doom in the back of my mind because for a CFS patient, enjoying life and having fun comes at a cost – a huge cost.  One day of fun can mean one or two weeks of misery.  We lose the majority of our days and weeks recouping from a few hours or a day of fun.  Post-exertional malaise is the CFS symptom that is the angriest and robs us from the most enjoyable parts of life. 

As CFS patients, we have to look at life differently than most people and we can’t just “go with the flow”.  Every activity of the day has to be questioned, thought about, and we have to decide every single minute of every single day what we can and can’t do because we know that just that one extra thing can send us to the bed or couch incapacitated.   Every part of life starts to lose its joy because in the back of a CFS patient’s mind we are always waiting.  Waiting to see if dancing at a party is going to send our body into a downward spiral;  if spending an extra hour working on a birthday cake for a family member is going to mean losing the rest of the week  to exhaustion;  if  volunteering to babysit for your own nieces, nephews or grandchildren is going to leave you bedridden because just the noise of more than one child at a time can be emotionally and physically draining for us.  These are all normal activities that people do every single day that they don’t even have to think about.  

CFS patients have to think about every single thing from the time we get up in the morning and those things listed above are what we think on good days.  When a CFS patient is flaring, we have to choose between taking a shower and getting breakfast for the kids.  We have to decide between brushing our teeth or washing our hair.  We have to decide between making dinner or doing a load of laundry.  All of these things most people take for granted every day and they never realize how lucky they are that they don’t have to choose.  They can just LIVE.   

I remember one time I had to go to the dentist for my bi-annual cleaning and this was during a time where I was having a lot of flares.  The dental hygenist wanted to know why I wasn’t flossing.  I told her I had to make a choice – I either brush my teeth or I floss.  That’s all I have the energy to do.  She looked at me like I had two heads but I was too exhausted to explain and I just let it go.  I didn’t even have the energy to worry about it at that time. 

A few weeks ago when we were having all of this snow, I was asked to stay longer at work.  The assistant manager asked me if I could stay until 5 or 5:30 p.m, which was about 4 hours longer than the end of my scheduled shift.  I told him I could stay a 1/2 an hour or an hour more but that was the limit.  I have no opportunities for advancement or cannot help out when needed because CFS knows the difference between a 4-hour shift and a 5-hour or more shift.  If I work any more than 4 hours, two days a week, I pay for it. 

The post-exertional malaise of CFS is like a punishment.  I always feel like I am being punished for just trying to live life, be happy and be as normal as possible.  Normal will never be known to CFS patients without a cure.  Our lives are lived in fear of the unrelenting demons of CFS.

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