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Suspected CFS. Thoughts?

Discussion in 'General ME/CFS Discussion' started by LT2015, Oct 8, 2015.

  1. LT2015

    LT2015

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    I suspect I may have CFS (and have had it for 20 years, since age 20). I haven't talked to my doctor yet because we suspected it was low testosterone (which I also have, but this is different). Some of the symptoms are:

    - Post exertion malaise (PEM). This seems to be the big one. I really like to work out, but the more I work out, the more tired I get. It usually happens the day after the workout and lasts a couple days.

    - In general, I am tired and/or have headaches. But if I don't over exert myself it is not terrible...but is still pretty rough.

    - At my first real job (age 20), I was totally wiped out after work and headed right for the bed for a 1-1.5 hr nap. Since then, I have needed a nap everyday. As the years went on, I started taking a nap in the car during work. Sometimes twice a day.

    - Although I tend to sleep a lot (10+hrs a day), I rarely feel refreshed. Sometimes I will feel pretty for a few hours, but it usually doesn't last that long.

    - This is weird. When I am drinking alcohol and out partying, I usually feel just fine.

    I thought this may be related to a sleeping issue, but the PEM seems to be a big symptom to look at. I remember even in college that workouts would seemingly wipe me out more than other people. It seems to have gotten a little worse over the years and now I am struggling quite a bit. Does this sound like CFS? It could still be related to my low testosterone, but seeing as I have had this issue since I was young (and no signs of low T then), I think it is something related to either CFS or a sleeping disorder.
     
  2. SOC

    SOC

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    This doesn't sounds a lot like ME/CFS, although it could be. What you are calling PEM sounds more like exercise intolerance which can result from a number of conditions including some cardiac problems and forms of dysautonomia including orthostatic intolerance of which POTS (postural orthostatic tachycardia) is a subset. You might want to look up dysautonomia to see if it fits your experience.

    Since some forms of dysautonomia are more treatable than ME/CFS, and because you'll be taken much more seriously if your diagnosis is dysautonomia than if it is CFS, you probably want to have the possibility of dysautonomia ruled out before you accept a CFS diagnosis (which gets you nothing in the way of treatment). The same goes for some cardiac conditions that result in exercise intolerance

    https://en.wikipedia.org/wiki/Exercise_intolerance

    PEM is different. It is called PENE (post-exertional neuroimmune exhaustion) in this document.
    This is from the International Consensus Criteria for ME. You can read more in the document to see if it fits your illness experience or not.

    Note that for the diagnosis, you have to have a 50% reduction in activity level to be considered even a mild patient. Most (not all) of us here are largely housebound and some are even bedridden.
     
  3. LT2015

    LT2015

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    Thanks for the thoughts. That is interesting.

    - Exercise tolerance. That doesn't seem to be a great fit since I am pretty tired even when not exercising. And the symptoms are not a good fit really.
    - Dysautonomia. This is possible, but when I look at the symptoms, its not a great fit either. Heart rate, blood pressure, etc. all good.
    - PEM. This seems to be the best fit for me. Sometimes, I thought I was getting sick and would even have the sore throat, which was pretty odd I thought. Headaches are almost 24/7 nowadays.

    Regarding the 50% threshold, I would say that if I stay away from activity, I am at about 65-75% of normal. But if I overdo things (which seems to occur frequently), I can drop down to 25%. I have been fortunate to work from home the last few years (so that makes it a bit easier). But I would have a real hard time holding down a 9-5 right now (not sure I even could).
     
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  4. SOC

    SOC

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    Well then, you may very well be looking at ME/CFS. :( You have my condolences. This is a horrible illness to have. It's life-destroying and there are no established treatments. Your best bet is probably to get yourself to an ME/CFS specialist as soon as possible. They can give useful treatments that GPs or specialists in other fields can't (or won't) give you. There is some evidence that the sooner you get that kind of treatment, the more improvement you are likely to get.
     
    Last edited: Oct 8, 2015
  5. skwag

    skwag Senior Member

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    Have you performed a Poor Man's Tillt Table Test?

    I didn't think I had an OI issue until I actually tested it.
     
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  6. LT2015

    LT2015

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    I am still holding out hope that it is not CFS. I keep telling myself its just low testosterone, but in the back of mind I have thought for a while it something more nefarious.

    I did do that test about a year ago, but can try it again. It is one of the three tests from Dr. Wilson's book on adrenal fatigue (of which I passed all three). Any comments about passing the test?

    I will talk to my primary care doctor soon and see where to go. And yeah, living like this has been sucking for the last couple of years. I feel bad for all you guys/gals doing it for years...its gotta be real tough. My symptoms have only progressed in the last few years to the point where I can't function normally anymore.
     
  7. skwag

    skwag Senior Member

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    No illuminating comments, unfortunately. OI is common in ME/CFS, but it is not required.
     
  8. SOC

    SOC

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    Did you make sure to stand for at least 30 minutes? Are you sure you didn't fidget or tighten your leg muscles? Many people with delayed OI unconsciously move or tighten leg (including feet) muscles to compensate for dropping BP or other problems.

    This article might be helpful as it describes a more effective test than some of the in-home tests suggested other places. It also talks about some of the less common forms of OI -- which are more common in ME than the general population. Some people (including, or especially, GPs) think only immediately-responding POTS is OI, but there are other forms.

    I never pass out, and my BP doesn't drop immediately. In fact, it starts to climb along with my HR. Not the common POTS presentation. I have hypovolemia, as do many PWME. Fludrocortisone, a tachycardia med, extra fluids, and electrolytes improve my symptoms noticeably.
     
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  9. LT2015

    LT2015

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    No, I did a pretty basic test in Wilson's book, but I will do the more thorough one (hopefully tomorrow). Thanks for the info :)

    Curious about napping. Do a lot of people with CFS find they NEED to nap? I feel like I NEED to nap or I am useless. However, I wonder if I have just trained my body to get used to this. I am wondering if I should try to break that cycle. That may lead to better sleep at night.
     
  10. SOC

    SOC

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    People who actually have ME/CFS do need to nap. All the sleep hygiene advice doesn't work, and usually hurts, true ME/CFS patients. The problem is that a number of people who are fatigued due to sleep disorders are diagnosed with CFS simply because they are fatigued (stupid, I know, but it happens with appalling frequency). In those cases, sleep hygiene advice (don't nap, go to sleep and get up at regular times) can improve fatigue. But fatigue is not ME/CFS.

    Assuming at this point that you do have ME/CFS and not chronic fatigue from some other cause, I'd say you very likely need the nap in order to function at all. Many PWME have shifted sleep cycles also, which all the efforts to modify with sleep hygiene cannot correct.

    Let me suggest again -- get yourself to a top ME/CFS specialist ASAP. There are only a few of them and they are booking up fast. Quite a few are not taking new patients because they are already far too busy.

    I also suggest you do a lot of reading here at PR. This is probably the biggest collection of patient knowledge anywhere. A good place to start would be to click on the Forums tab at the top of the page, go down to the Symptoms subforum, pick a symptom sub-subforum that you think might apply to you and start reading threads. For starters, here's the forum on Sleep. You'll learn a lot more a lot faster reading through these threads than asking individual questions here.
     
  11. LT2015

    LT2015

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    Thanks, I will start looking through the forum knowledge base and looking into seeing a specialist. A couple quick questions that may help me along:

    - For now, I was thinking about trying good sleep "hygiene". This is because I don't know if I have CFS or not. Its still just a hypothesis. I talked to someone in the medical field and she said to try that for a couple weeks and see how it goes.

    - Will doing a sleep study help? They are very expensive for the 2 day test, which is used to test for narcolepsy (and related). But I am not sure if they can detect the difference between narcolepsy and CFS?
     
  12. ukxmrv

    ukxmrv Senior Member

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    The sleep study can check for sleep apnea which seems to be a common misdiagnosis for CFS and also a co-morbid dx with CFS. It just depends if it explains all your symptoms.

    Sleep hygiene makes me much worse if it is based around "normal working hours".

    Try everything else before you accept a CFS diagnosis as misdiagnosis is common.
     
    SOC likes this.
  13. LT2015

    LT2015

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    Sounds good. I talked with a sleep doctor and based upon my symptoms, he felt it was highly unlikely that is was obstructive sleep apnea. I have also used a recording pulse oximeter for a few weeks to monitor sleep at night and there was no desaturation events (characteristic of sleep apnea). However, there could be something related to narcolepsy there and I believe stimulants are an option. *But not sure how to clearly distinguish between the two and if stimulants would be bad for CFS.

    For now, I am just going to try good sleep hygiene and see what happens. It will be quite interesting. In the past, when I would not take a nap during the day, I would feel awful. But I may also be addicted to them. I doubt I have gone for 2-3 days in a row without a nap (or two) during the day for the last couple decades. Come to think of it, a few times when I had to travel/work for business, I did not nap. I made it through, but it was a real struggle and I felt like a zombie a lot of the time. I think when I got home, I probably crashed hard for a couple days.

    I also have low T, which after trying to fix for over a year naturally, could not be fixed. So I started testosterone replacement and maybe that improve things.
     

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