Members with fibro

Discussion in 'The Watercooler' started by flutterbee, Oct 6, 2007.

  1. flutterbee

    flutterbee Guest

    What do you experience with fibro fog? I ask because my new doctor claims that the confusion, word retrieval problems, feeling scattered, etc are not part of fibro. I have read in many places that those things are common in patients with fibro. She said that depression is common with fibro and that depression will cause those things, but I'm not depressed at all.

    So, she wants me to have an MRI of my head and neck to see if I've had a stroke and to just check my carotid arteries for blockages (because of the continued cognitive issues and because heart disease puts me at a higher risk of stroke and a stroke is a possible complication from heart caths...and I did have that very scary experience in April that resembled a TIA or mini stroke, but that I attributed to an adverse reaction to the steroids). While I have no problem covering all bases, I just don't know what to think.

    She also wants me to see various specialists to be checked for autoimmune and connective tissue disorders. She said that some connective tissue disorders predispose one to heart disease. In my research, I've found they do, but not with arteriosclerosis. Rather they seem to cause problems with the heart valves and inflammation of the heart. The only that I've found that could speed up arteriosclerosis is the autoimmune disorder Lupus, which I've tested negative for. So, this part really isn't relevant to my post...just a lot in my head.

    She does think I have, at the very least, some arthritic activity in my hips, knees and ankles which I agree. But she seems to be dismissing the fibro out of hand. It's not that I don't want to cover all bases, I just wonder if she's a doctor that doesn't believe in fibro. I mean, the fatigue and stuff can't be explained by arthritis.

    I don't know what to think. I guess I'm just concerned because I don't have insurance at the moment, so all of this stuff has to wait and now I feel like it's just hanging over my head, you know?

    I'd just like to know if those of you with fibro experience any cognitive dulling and if she's way off base or I am.

  2. DammitJanet

    DammitJanet Well-Known Member

    Way off base.

    Yes what she says is true to some extent and you should cover all bases but fibro fog is real and living in most fibro patients.

    Im living in a deep fog right now from lack of sleep myself but when I wake up I will dig up some info for you.
  3. Marguerite

    Marguerite Active Member

    What's in a name?

    In Australia, it used to be called Myalgic Encephalomyelitis (or ME), the name coined by Dr Melvin Ramsay after he noticed a strange epidemic which temporarily closed the Royal Free Hospital in 1955. It was called the Royal Free Epidemic.
    Then in Australia in 1988 (or thereabouts) the Royal Australasian College of Physicians decided to toss out the ME tag and call it Chronic Fatigue Syndrome, or CFS. Most people hated the name, it seemed to be trivialising the condition. But we had some really sharp researchers including one who spent sometime working at CDC in Atlanta, where he and a few others came up with some new and more involved diagnostic criteria.

    Britain mostly kept the ME label, the US mostly used CFIDS - Chronic Fatigue and Immune Dysfunction Syndrome. Meanwhile in some parts of Australia, some patients were finding that a CFS label was causing them all sorts of trouble with welfare agencies, employers, politicians - you name it. So the doctors began calling it Fibromyalgia.

    Now, in my own research, fibromyalgia is a symptom, not a disease in itself, although over the last couple of decades it has been used often as an alternative (and sometimes intermediate) label for CFS (or whatever it's called in your area). In the same way, some people are very slack about using terms correctly - "Chronic Fatigue Syndrome" is a distinct, identified and defined medical condition, but "chronic fatigue" is simply a description of a symptom which can affect 1 in 4 people, for a whole range of different causes.

    So, back to your question - fibromyalgia, the symptom, does NOT cause brain fog in itself.
    However, the name when used as a synonym for CFS, ME or CFIDS, IS associated with brain fog (aka cognitive dysfunction).
    In the same way, long-term (or chronic) fatigue, the symptom, is not necessarily associated with brain fog, but CFS definitely is.

    It's actually listed in the diagnostic criteria.

    I also looked up fibromyalgia diagnostic criteria, but as far as I can see, it is most commonly used as another name for CFS, unless it is simply mentioning the symptom.
    Anyway, here is the other link - if you follow it, you will see it does mention cognitive impairment (aka brain fog).

    But why is your doctor not considering this? I couldn't say, however she IS right to insist you be checked for other possibilities. In my experience CFS and all its synonyms is a garbage bin diagnosis. Once you get the label, doctors stop looking for reasons and blame everything on the CFS, which can sometimes mean (if the diagnosis was a bit hasty) that a nastier underlying condition gets missed and you suffer for much longer than you should, or fail to be treated more appropriately.

    So let her check things out, and meanwhile do your own homework. Look for the diagnostic criteria and read them for yourself. Find a local support network and ask them for names of doctors you can see, if you want to go down that path.

    And meanwhile, the best management is to treat the symptoms; exercise within moderation to the limitation of your condition at the time; keep as fit as you can but don't over-exercise. Go gently with walking or swimming, rather than jogging or weightlifting. As for brain fog - plan plenty of rest breaks into your day, including mental rest breaks. practice meditation, relaxation therapy - and try to keep calm and de-stress as much as possible.
    You can't do better than that.

  4. flutterbee

    flutterbee Guest

    CFS and Fibromyalgia are two separate illnesses and the names are not interchangeable.

    I agree that once given the diagnosis, however, they stop looking at other possible issues. Which is why noone ever looked at my heart when given the diagnosis of CFS in February. Of course, now no one is saying CFS; they are saying fibromyalgia. Both diagnosis's came fast - after one visit. And I don't know what to think.

    I looked at the diagnostic criteria for both again today and I seem to fit CFS better than fibromyalgia. Here's the CDC info on CFS:

    That seems to match me better than the fibro, however I do have pain flare ups. Who knows.
  5. Big Bad Kitty

    Big Bad Kitty lolcat

    I have known several people who have both. My mom and aunt, the first two people I have ever heard of who had fibro, were also the first 2 people I ever heard of to have CFS. My mom also has MS.

    I also had 2 neighbors with fibro, CFS, AND lupus, and one of them had MS as well.

    My heart goes out to them, and to you all as well. I wish I had a magic wand...
  6. flutterbee

    flutterbee Guest

    BBK - from my research it's not uncommon for patients with Lupus and/or MS to develop fibro, but the opposite has not been found to be true.

    Interesting, huh?
  7. flutterbee

    flutterbee Guest

    I'm going to start taking the D-ribose energy supplement, which my doctor has never heard of. The most popular brand is very expensive, but I've found another that is much more reasonable and compared the labels and they are comparable.

    It has documented (clinical studies) cardiovascular benefits and one small study shows marked improvement in fibro patients. More studies are in the works.

    I've also found that when I dream, I feel much more rested. However, I don't seem to dream (or at least remember dreams) very often. I'll go weeks and months. So I wonder if I'm not getting into the REM sleep stage. Sleep disturbances are common in fibro and I *think* they are hypothesizing that it could be the possible cause.
  8. Big Bad Kitty

    Big Bad Kitty lolcat

    Very interesting, indeed. And it all makes a lot of sense.

    I will be passing this along to mom.
  9. Marguerite

    Marguerite Active Member

    Heather, despite what it may seem, I do agree that CFS & fibro are (or should be) seen as separate conditions. The trouble is, when a doctor is facing a patient a lot of other factors come into why they give you the label they do (assuming they DO give you a label) and too often I've seen these terms used interchangeably and incorrectly. One doctor I encountered would diagnose just about EVERY patient who went to him, with hypoglycemia. They would emerge from his surgery as if through a revolving door, each clutching their information brochure and a bottle of glycerin which they were supposed to sip. And because I'd counselled a lot of these people (and given them this doctor's name, for my sins - I learned!) I heard all about it when they called me back. A number of those patients also called me back months later, when finally given a more valid diagnosis.
    Not that hypoglycemia isn't valid - but like fibromyalgia in some areas, CFS in other areas, it can be misdiagnosed and over diagnosed as the latest local 'fashion', often leaving a really desperate patient without the appropriate answers the need.

    Fibromyalgia IS also a symptom of a few other disorders but its description is far more precise than CFS. You CAN have fibro as a symptom of CFS, but it is here where we are getting to the imprecise nature of medical science - that's why it's called practicing medicine. And some of them never do get enough practice to be good at it!

    But yes, brain fog can be found in a number of conditions, often associated with auto-immune factors.

    I learned to get good at using a diary and notepad. Life isn't fair; we live with what we have do and do the best we can with what we've got. What more can we do?

  10. flutterbee

    flutterbee Guest

    Marg, I have hypoglycemia, too! :rofl:

    You're right; they are practicing medicine. I've used that same play on words myself a time or two. It's so frustrating to have things just thrown at you. When I was told in February that I had CFS, my doctor just told me I would have to learn to deal with it and sent me on my way. Then, I got the fibro diagnosis, but had to find a new doctor immediately following. This new doctor, other than prescribing tramadol for pain, hasn't really addressed the fibro.

    I have no trouble covering all bases. I'd much rather have all doubts put to rest. It's just frustrating to have so many things thrown at you and to receive information that seems so contradictory. It's even more frustrating because in the interim it's not being managed and most days I'm functioning at half capacity or less.

    I had a brief period of a few months following the heart attack where all my prior symptoms - fatigue, body aches, joint pain, etc - were completely gone. So, I thought that it was all related to the heart disease and was sooo happy to have it addressed and resolved. I had never felt so good (even with the allergic reactions, adverse reactions, etc). Then the symptoms started to slowly creep back in and they are now to the point - again - that they are becoming debilitating. I just had a heart cath in July and everything is working like it should, so I know it's not that.
  11. Pam R

    Pam R New Member

    I've got ME (I hate the CFS name and use the Brit one) and the cognitive dysfunction (brain fog) is my worst symptom. It's so bad I've not been able to drive since Oct. 2000.

    One of the theories around the cause of ME is that things do not work well on the cellular level. Nutrients aren't taken up properly, nor the metabolic toxins released from the cells properly.

    The build up of toxins causes pain in muscles and joints, but the first thing affected is the brain.

    husband has end stage liver disease and he also has brain fog, but his is caused because the liver can not remove the ammonia from his blood stream well and it builds up, affecting the brain first.

    Because of the pain I get after too much movement, and the brain fog from any exertion, physical or mental, I tend to lean towards this theory.

    I don't have fibro, at least not the triggerpoints. But my sister has been diagnosis'd with it and she also has the brainfog.

    Don't know if any of this is any help. I've not found anything that helps with the brainfog to any degree.

    I was also hypoglycemic until I started on the food program. It was also supposed to help the brainfog, but did not, though it seems to have helped others with brainfog (but they did not have ME either.)

    I've had these symptoms for over 30 yrs. and learned a lot of coping mechanisms, just to survive each day:

    Pencils and pads anywhere I might roost (and death by slow torture to the one who moves them)

    EVERYTHING has a place and everything in it's place (and death by slow torture to anyone who does not put it back)

    Keeping all information together (a good filing system)

    Making sure I keep a steady sleep schedule

    Making sure I keep regular, scheduled meals of enough of the necessary foods

    Keeping clutter to an absolute minimum (it's just too distracting)

    I'm sure there are many more, but that's all I can think of, as I've not written them all down so I could remember them. :rofl:

    Pam R.

  12. DammitJanet

    DammitJanet Well-Known Member

    CFS and Fibro are two seperate things. Im still too foggy to talk well on the

    I seem to be in a flair right now.

    CFS doesnt have the trigger points, fibro does. There are a ton of differences but you can find out more on immunesupport. That is an excellent site.