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meowese
Regular Member


Date Joined Jan 2008
Total Posts : 121
   Posted 9/22/2008 5:05 PM (GMT -7)   
I thought I had Lupus but now I think after talking to my Rheum that I have CFS or Fibromyalgia. It'd been in the back of my mind for ages but I wasn't sure because these are supposed to be 'invisible' diseases. None of my doctors ever suggest them as a possible cause of my illness, just say there's nothing else they can do for me.

My questions are:
What are the main differences between CFS and Fibro?
How are CFS and Fibro treated? I do not want to go on Lyrica (why would I want to add brain fog to my already terrible brain fog? nothnx).
What kind of doctor would be best to oversee treatment of these things? I have an appointment with a neurologist in late Oct. and I'm going to push for a sleep study and a neuro-psych exam to see how bad my brain fog really is.

I want to try to overcome this obstacle on my own. I've been complaining of fatigue for YEARS now and then slowly other symptoms started joining the list: migraines, muscle pain and tenderness, weakness, joint pain etc. It's all rather transient, coming and going.

I feel a little bit ashamed that something no doctor can diagnose is possibly bringing me down like this. I was to the point that I was almost hoping it was Lupus because then it'd be something I could identify and would be recognized by the medical community! That's such a silly thing to say but I have been trying to figure out what is wrong with me for ages. I want a doctor to look at me and say "this is what you have, this is how we can fix it." Ya know? I understand that a 'dx' isn't important, so I want to know how to treat my symptoms. But is this all in my head? All of my symptoms?

I can't deal with the brain dysfunction anymore. It is getting in the way of school and me pursuing my dreams and even nondreams such as getting out of bed every day.

Another note is that I have all of the Fibro tender points, especially the ones above the butt on the back. :) Whenever anyone pokes me there at the Rheum office I squeal in pain. What's the significance of this? I know nothing about why it happens.
Crohn's (diagnosed in 2006 and currently in remission), severe migraines, Seborrheic Derm., Hemolytic Uremic Syndrome (1994), chronic pain, ulcers/GERD and possibly CFS? Medications: Nexium, Pentasa, Percocet and Vicodin as needed, Flintstone Vitamins (my favorite part!), calcium and magnesium supplements, vitamin D once weekly. I follow a low fiber, low residue diet.

Post Edited (meowese) : 9/22/2008 6:18:50 PM (GMT-6)


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17094
   Posted 9/22/2008 5:25 PM (GMT -7)   
Hi, Meowese, and welcome to the fibromyalgia forum.  Why would you be "ashamed" that you have something that the doctors don't know much about?  That's not your fault.  You certainly don't want fibro...no one does.  But it does exist and now doctors are finally realizing that it is not all in our heads!  Trust me...you would be better off to have fibro than lupus!  Fibromyalgia is never terminal.  It is just a big pain.  But, you have come to the right place!  We have a great group of people that will help you learn how to control the pain and live a full and enjoyable life.
 
I take ibuprofen, Tylenol, and malic acid/magnesium supplements for my pain and fatigue.  That works for me.  You will find what works best for you.  I don't want to take Lyrica, either.  I do a lot of walking and stretching exercises to keep my muscles flexible.  You don't want to sit too long or you will be stiff as a board.  Hot showers, moist heat from rice bags, massages, etc. are some ways to cope with pain, too.
 
The main difference between fibromyalgia and chronic fatigue syndrome is the pain, I think.  I don't think you have pain with CFS.  I'm not positive about that, though.
 
I use a board certified Internist as my doctor.  He is also a diplomate.  That means they have to keep up to date on medical procedures and take a test yearly.  Many find that a rheumatologist is the best bet for them.  Whatever you choose to do, please make sure they believe in fibromyalgia and treat fibro patients!  There are many doctors out there that still don't think it really exists...and some are rheumies!  Do your homework.  Maybe see if they list fibromyalgia in a telephone ad or just flat out call and ask before you make an appointment.  You don't want to waste your time and money. 
 
Check out the Fibro 101 thread...the second thread on the forum.  There are links to good information about fibromyalgia, including symptoms, stretching exercises, and info about malic acid/magnesium.  You will learn a lot there.  Also, read posts.  There is a world of info in them.
 
If you have more questions, don't hesitate to ask.  We are here to help you.  I'm glad you joined us and I hope to hear more from you soon!
 
Sherrine
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 9/22/2008 8:02 PM (GMT -7)   
Hi and welcome!

I found an easy explanation of the differences between Fibro and CFS. Hope this helps!

Chutz

The simplest explanation of the difference between FM and CFS is that with FM, pain is the most predominant symptom, while with CFS, extreme fatigue with is most predominant.
Additional distinct differences include:

* Substance P (a neurotransmitter that transmits pain signals) is elevated in FM but not CFS.
* RNaseL (a cellular antiviral enzyme) is frequently elevated in CFS but not in FM.
* Often CFS will be triggered by a flu-like or infectious illness, while FM is more often triggered by some kind of trauma to the body (i.e., accident, injury, surgery, etc.).
Co-Mod Fibromyalgia & Chronic Pain Forums
~~~
Fibromyalgia, Ulcerative Colitis, Insulin dependent diabetic, collapsed disk, dermatitis herpetiformus, osteo arthritis in spine and other locations.
***************

The only difference between genius and stupidity is that genius has it's limits. Albert Einstein: (1879-1955)


Jeannie143
Veteran Member


Date Joined Apr 2004
Total Posts : 6056
   Posted 9/23/2008 9:51 AM (GMT -7)   
And to confuse the issue, you can have both chronic fatigue syndrome and fibromyalgia at the same time. There are several muscle/ligament/pain/fatigue disorders that appear to be related. MOST of the problems arise from chronic starvation of the muscle cells because of a disorder in the way we utilize glucose and oxygen to produce energy and remove byproduct wastes. This is why short rests while doing a project can lower pain and allow us to continue. It allows the body to "catch up" on its oxygen and glucose needs. This is also why we want to rest a lot, to lower our energy demands.

The problem is that if we rest all the time and don't keep moving the muscles atrophy and then we are only able to do less and less. We must keep moving and each of us needs to monitor our own rest/work cycle to it's best production level. This is also why SSRI meds and NSRI meds help us. They help us keep going by handling the pain/sleep/mood levels so we are motivated to do more. And sometimes narcotic meds over a long period of time can lead to a false sense of "everything is ok" and dull our need to press on to try more so they have to be monitored as well. Maybe this is why God gave most of the fibro to women... the juggling act involved with meds/work/rest is mostly multitasking that we are so good at!!! tongue
~ Jeannie, Forum Moderator/Diabetes & Fibromyalgia
I know God will not give me anything I can't handle. I just wish that He didn't trust me so much. ~Mother Teresa

"People are like stained glass windows: They sparkle and shine when the sun's out, but when the darkness sets in, their true beauty is revealed only if there is light within."- Elizabeth Kubler-Ross


d2parrotperson
Regular Member


Date Joined Aug 2008
Total Posts : 320
   Posted 9/23/2008 11:55 AM (GMT -7)   
meowese, as you ahve crohn's, never, ever take any NSAID medication! Huge no,no!! Also be careful with Malic acid and megnesium. If I take either one it is literally like swallowing fire or acid. Be very careful here.

There is no shame in fibro. It comes with crohn's. Not every crohnie gets it, but many do.

as Jeannie143 said: "MOST of the problems arise from chronic starvation of the muscle cells". I think that is true of Crohn's patients. We do not absorb the proper vits and minerals from our food. Many times crohnies are malnourished. That is part & parcel of the disease. As I cannot take many of the vits & minerals, I must take the heavy narcotics to be able to work & function. Most vits & mins cause me to flare, or burn my gut terribly. You will ahev days of great weakness and fatigue. This is to be expected.

You can do this!
150mg Azathioprine, Lomotil, Iron, Nexium 2/day, Fentanyl patch, Oxycodone, Baclofin
Crohn's, Fibromyalgia, Several bulging discs, Bone spurs, Osteoarthritis, Osteopenia, Reflux, Stenosis, Strictures, Dengenerating facet joints
2 resections
 
Stephanie
When I am weak, then am I strong


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17094
   Posted 9/23/2008 12:35 PM (GMT -7)   
Stephanie, I have Crohn's and have been prescribed,by my doctor, ibuprofen and have used it for 21 years with no problem at all.  I do take Prilosec to protect my stomach.  I also started the malic acid/magnesium supplements last December and they have been wonderful for me.
 
Every person is different.  That's why we tell people to check with their doctor and pharmacist before taking anything...even herbs.  I did and am having success with these products.
 
Sherrine
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


meowese
Regular Member


Date Joined Jan 2008
Total Posts : 121
   Posted 9/23/2008 1:23 PM (GMT -7)   
Thanks everyone!

I am curious if these things can be tested for?

* Substance P (a neurotransmitter that transmits pain signals) is elevated in FM but not CFS.
* RNaseL (a cellular antiviral enzyme) is frequently elevated in CFS but not in FM.


I am not sure if pain or fatigue is a bigger problem for me. I complain of joint pain and discomfort but it's never so bad that I am in severe crippling pain. I'm mostly just very stiff and sometimes cannot straighten my joints after sitting without some discomfort. I have gotten bad pain in my shoulder, hips, and knees, jaw etc but it's never so bad that I cannot function with it. What do you all think? I also always have a certain degree of muscle soreness/tenderness.

Like I said I also have many of the tender points that I have heard are prevalent in Fibro. The worst for me are if you press behind my head at the occipital lobe area or my lower back. Does this also happen with CFS patients?
Crohn's (diagnosed in 2006 and currently in remission), severe migraines, Seborrheic Derm., Hemolytic Uremic Syndrome (1994), chronic pain, ulcers/GERD and possibly Fibromyalgia? Medications: Nexium, Pentasa, Percocet and Vicodin as needed, Flintstone Vitamins (my favorite part!), calcium and magnesium supplements, vitamin D once weekly. I follow a low fiber, low residue diet.

Post Edited (meowese) : 9/23/2008 2:49:51 PM (GMT-6)


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17094
   Posted 9/23/2008 1:43 PM (GMT -7)   
Fibromyalgia can be triggered by illness or surgery, too.
 
Sherrine
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


Statgeek
Veteran Member


Date Joined Jul 2008
Total Posts : 1495
   Posted 9/23/2008 2:57 PM (GMT -7)   

Actually, they can diagnose fibro with the tender points.  The pain clinic doc I just saw was able to tell alot of the spots that were tender without even asking me.  It was quite interesting.  So don't be ashamed.  This is real and is being recognized more and more by the medical community.  Good luck with finding some answers.

Sue

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