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.

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.

Would You Use Marijuana To Treat Fibromyalgia Pain?

I have been seeing a lot of stories on television lately about people who are using marijuana for medical purposes, particularly pain.  Just today I read an article on Health.com that medical marijuana mey help fibromyalgia pain.   Marijuana has been used for quite some time to help cancer patients with their pain.  From what I was watching on The Doctors regarding medical marijuana use, there are benefits to using it over prescription medications, but there are also some negative effects you have to consider as well.  For one, if you are using marijuana for medical reasons, if it is not legal in your state, you can get into big trouble with the law.   Even if our prescription pain meds aren’t good for us, at least they are legal, as long as we are using them as prescribed. 

With marijuana, there are different grades that will determine the effects the person will get when using it.   The Health.com article says this about marijuana use for pain:

It seems logical — why shouldn’t fibromyalgia sufferers try marijuana for their symptoms, if they live in a state where medical marijuana is legal?

But there are two problems with herbal cannabis, Silverman and other critics say: It’s a complex natural substance that contains about 60 different compounds with potentially medicinal effects, some of which may interact with one another. The other problem is that the amount of these various compounds may vary by batch, as marijuana is not synthesized but grown.

While Silverman says he has great hopes that synthetic medicines based on individual compounds in cannabis may one day help fibromyalgia patients (after appropriate randomized controlled clinical trials have been done), he argues that the real thing today is just too inconsistent.

“We think that there’s probably a role for that class of compounds, the cannabinoids in general, and it’s just a question of working out how that’s going to be put into practice,” says Mark Ware, M.D., an assistant professor in family medicine and anesthesia at McGill University, in Montreal, and the executive director of the Canadian Consortium for the Investigation of Cannabinoids.

I don’t know if marijuana is something I would try even if I could get it legally.  I guess there is just this huge stereotype surrounding marijuana and when I think of it, I think of Cheech and Chong.   That’s what pot reminds me of.   But if it works for people who can get it legally, then more power to them. 

If you want to see a guide that lists marijuana laws state by state, click HERE.

ME/CFS Pain & Fibromyalgia Pain – Can You Distinguish Between the Two?

Chronic Fatigue Syndrome patients suffer from pain as well as Fibromyalgia patients.  Sometimes it can be hard for patients with both to know whether their pain is coming from the Fibromyalgia or the ME/CFS.  For me, I can usually tell the difference because I had ME/CFS first.  I know that my headaches are coming from ME/CFS, as well as the back pain.  The majority of the rest of my pain comes from the Fibromyalgia. 

In most cases, if someone has both ME/CFS and Fibromyalgia, you can usually tell which illness takes precedence over the other by just asking one question:  Which is worse for you?  Fatigue or pain?  If they answer fatigue, then their ME/CFS is worse.  If they answer pain, then their Fibromyalgia is worse.  In my case, the ME/CFS is definitely the worst and I was diagnosed with that illness first.  I wasn’t diagnosed with Fibromyalgia until 2003 I believe.

For me, I experience most of my Fibromyalgia pain in the lower half of my body.  My hips and legs will hurt tremendously and they hurt most of the time.  Some days the pain is mild, other days the pain is so bad in my legs I can barely walk without tears coming to my eyes.  I can tell the difference between Fibro pain and ME/CFS pain because each illness has it’s own pain intensity. 

For example, when I first became ill with CFS, I had terrible back pain that would not go away after I had a back injury at work.  But the pain in my back was like a constant exhausting pain – a dull but very deep and severe pain that was always there.  It was more of an exhausting type of pain.  I would still describe ME/CFS pain as an “exhausting” type of pain – pain that causes weakness.  The Fibromyalgia pain is more intense, more sharp, more nagging but it doesn’t make my body feel as weak.  The headaches are constant – sometimes they are worse than others but they are always there and not going away.  I developed these around the time I was diagnosed with ME/CFS. 

I have also found that the really deep, dull pain that comes from ME/CFS doesn’t respond well to painkillers.  The Fibromyalgia pain will respond but the pain doesn’t completely go away.

How would you describe your CFS and/or Fibromyalgia pain?  Which is worse for you?  Can you tell the difference?  Let me know!

CFS, Fibromyalgia & IC Symptoms Worsen with Common Illness & Menstrual Cycle

I wish I had a long, clever, in-depth answer as to why our symptoms get worse when we have a common ailment like a cold or the flu, or when we have our periods but I don’t.  The only thing I know is that it totally sucks, especially if you’re a woman and it’s that time of the month.  What sucks almost as much as a worsening of ME/CFS, Fibromyalgia & IC symptoms is trying to explain to your boss, co-workers, or anyone else who depends on you for things as to why you can’t come to work or have to back out of a commitment.   Trying to get away with saying just the easiest explanation of “I’m sick” usually doesn’t offer enough information.  When we go into further detail to try and explain our absence, the thoughts that normal people think are:  “I/other people work with their periods/colds.  Why can’t she?” 

My answer has just simply become “I had a flare” and I leave it at that.  There’s no use trying to explain that a cold, the flu, another common ailment, or your period caused you to relapse.  No one gets it.  I don’t even get it sometimes. 

In my own personal experience, my period causes a whole flood of symptoms to reappear that seem to go into hiding other times of the month.  My Interstitial Cystitis symptoms take over and my already few hours of sleep a night lessen even more with the increasing nighttime bathroom visits.  The one bright spot of my cycle is the worsening of fatigue (I know – how can CFS fatigue POSSIBLY get any worse?) does cause me to sleep more, but it’s usually during the day.  But I’ll take it where I can get it.  The pain and weakness in my body is excruciating and my prescription pain pill count increases for the first couple of days during my cycle to help get me through.  CFS headaches become so bad that the slightest noise causes major thumping and pounding in my head.  The normal night sweats from the CFS become like a visit to the sauna the first couple of cycle days and I can’t seem to take enough off to get cooled down.  I keep the upstairs as cool as I can and if it weren’t for my family, I would have the windows open in the middle of winter. 

Just thinking about going to the gym will make my thighs and back hurt.  I have been faithful with going every other day.  Today was my day to go but I couldn’t even muster up enough strength to get dressed let alone get to the gym to exercise. 

How about the common cold or the flu?  A cold will cause the bladder to spasm like crazy in an IC patient and the pain is sharp and stabbing.  Trips to the bathroom increase and we may have to wear Depends or pads in order to keep from wetting through all of our underwear everytime we sneeze or cough.   In a Fibromyalgia or CFS patient, a cold can leave us with extreme fatigue and stuck in the house wrapped up with a box of tissues for longer than the normal person.  The flu is even worse.  When I get the flu, it can take as long as weeks to recover.  The vomiting and diarrhea will end long before the strength comes back. 

There are a lot of us CFS, IC & Fibro patients who really fear getting sick because we know that we can’t just get back to normal living after a few days.  I have become very paranoid about germs and being around people who are sick.  I get really upset if someone who knows my history comes around me or brings their kids around me when they are sick.  I find it disrespectful and rude and I can’t help but get annoyed by it.   I know some people think I worry too much about germs and getting sick but they don’t have to deal with it like I do. 

I won’t even volunteer as much at my son’s school as often as I really could because of being around all of the kids, the colds, sneezing, coughs and germs.  The schools are a breeding ground for sickness.  I make Logan take hand sanitizer and he gets quizzed frequently to find out how often he is using it, when he uses it and if anyone in his class is sick.  When he gets sick or someone in his class is sick, I get sick. 

Chronic illness, colds, flu and menstrual cycles do nothing but cause even more misery to already unhealthy lives we lead.  I want to be happy and to feel good.  I get so frustrated when I have more of my time spent wasted on the couch or in bed.  I want to be useful and for my life to have more meaning than this.

The Time of Year When CFS & FM Symptoms Flare

It’s that dreaded time of year again for us ME/CFS & Fibromyalgia patients.  The fall weather, changes in temperature, and the shortening days tend to make symptoms flare full force.  For about the last week I have been experiencing a very noticeable difference in my body and the season changes are really affecting me.  I have been massively flaring and I am thankful that I cut my hours back at work to just one day a week.

My pain level really increases this time of year.  I will notice my legs, back, and hips aching a lot more than what they normally do.  I also am feeling extremely sluggish and while I normally have insomnia, now all my body wants to do is sleep.  I could barely keep my eyes open last night while eating dinner and on the trip to the restaurant.  These symptoms are always to the extreme and it is very frustrating. 

What symptoms of yours flares more this time of year?  Do you notice a marked difference in your CFS and/or Fibromyalgia when fall arrives?  Let me know in the comments!

Sinus Infections In ME/CFS & Fibromyalgia

Well – the last set of antibiotics, $50 for 7 pills, didn’t help because I have another…SINUS INFECTION!  Surprise, surprise.  This is the fifth one since September and I fear that I am headed down the same route I was a few years back.  I had to be treated 11 times for sinus infections in over a year before I finally got better.

Dr. Teitelbaum, the author of the bestselling From Fatigued to Fantastic, says that chronic sinusitis is actually a yeast infection.  Dr. Teitelbaum believes that antibiotics turn short-term sinus infections into a chronic problem.  He also shows on his End Fatigue website a study that found that people with ME/CFS had improvements in symptoms after Endoscopic Sinus Surgery.  However, Dr. Teitelbaum says that ME/CFS & FM sufferers can get some of the same results without going to the extent of having surgery.

According to Dr. Teitelbaum, fungal infections cause chronic sinusitis:

These infections cause a stuffy nose, eventually causing the nasal passages to swell shut. In the body, any time something gets blocked (e.g., an appendix, gallbladder, etc.), it results in a secondary bacterial infection—and the sinuses are no exception. When this happens, your nasal mucus turns yellow-green, and you go to the doctor in pain. She or he then gives you an antibiotic, which knocks out the bacterial infection and sometimes leaves you feeling better. Unfortunately, the antibiotic worsens the underlying yeast infection in your nose, causing more swelling and blockages and therefore more attacks of bacterial infections. This is why sinusitis in the U.S. usually becomes chronic.

Dr. Teitelbaum says that his patients with sinusitis problems usually have success with Diflucan and a compounded nose spray. The nose spray contains Bactroban and Xylitol and these kill the bacterial infections, low dose cortisol to shrink the swelling and an antifungal. While on the Diflucan, Dr. Teitelbaum recommends his patients use one to two sprays per nostril for at least 6 – 12 weeks.  Dr. Teitelbaum sells tihs type of nose spray on his website, End Fatigue.com for $16.95 a bottle.   It is called Argentyn 23 Silver Nose Spray.   I think I’m going to order some tonight to try myself. 

It has also been found that sinusitis causes other problems as well.  Dr. Alexander Chester has found that chronic nasal congestion can actually be a trigger for ME/CFS.  In general, having a chronic nose infection can bring down your energy levels.

Next Page »