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Progressive SOB, fatigue, tremors, yikes.

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by Mattman1, Sep 16, 2012.

  1. Mattman1

    Mattman1

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    Hiya guys,

    For almost two years, I have had symptoms that all began with experiencing a sudden SOB at work when I was walking around-- at the time, I was a 23 year old healthy male and didn't think much about it. However, as the weeks went on, the SOB persisted-- at first, this was my only symptom, but as time went on, I then experienced palpitations, and also tremors in legs, arms, and chest, typically after exerting myself. Now, fast forward 18 months later, and I went from a weight of 140 down to 120. I find gaining weight to be incredibly difficult, and am probably at around a 1-2 on the CFS energy level charts that Lerner has. I have gone thru Cardiac echo, EKG, Holter, ect, but nothing found. In the last 6 months, I began to experience Insomnia that has progressed to making it impossible to get more than 5-6 hours of sleep a night without a sleeping aid, as I typically awake every three hours. Also had CTs to check for abnormalities, endoscopy, colonoscopy, Thyroid panels, Cortisol, I.D.,ect, but nothing checks out. Really it's just a low Vit. D level that shows up. Pathetic after all that time it feels.

    My question is...does this sound like CFS, or is it just too different from most cases. I think what sets mine apart from most, is that it started with many months of SOB upon exertion, and the fatigue came many months later, to the point where I have very little energy; however, where I see a connection with CFS is that my physical state is always worse after exertion...maybe not that day, but certainly the day after. Also, my appetite is fine, but my weight is down...which made everyone think Thyroid or Gastro, but haven't found anything. I'm living with the parents at the time, and I think that because they see all the tests coming back normal, that I somehow frightened myself into being bedridden, so that's kind of a difficult thing to deal with as well. Anyone else progress the same way as I have? I can't remember being sick before this happened, but recall being under a lot of stress at the time, and then the SOB kicked in one fateful night, until I've reached a point where it's just terrible. Also have a pretty low BP at 100/65 and a resting of only 62 bpm. Thanks,

    Matt
  2. Kati

    Kati Patient in training

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    hi Matt, I have had SOB and chest pain some 10 months following my initial infection with EBV. The chest pain has been reproduced on a tilt table test, which is used to measure autonomic nervous system dysfunction.

    Dr Nancy Klimas does tilt table tests and she is a very good diagnostician,you may want to check her up. It is in my opinion best to get sound medical advice early on.
  3. taniaaust1

    taniaaust1 Senior Member

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    It could be ME/CFS .. My sister who I think caught it from me has had it manifest itself completely differently to me. In her she first she got the SOB (but in her case I dont think its just when she's standing) to which no doctor could work out, next in her case she was getting weakness, lack of energy, brain fog and muscle aches. ME/CFS can be rapid onset or slow onset with its symptoms gradually developing over time.

    Trying to avoid crashes may help stop the gradual decline you are having. (make sure you arent over doing things as consistantly over doing it can cause a constant decline).

    With ME/CFS there can be weight loss or weight gain.

    The weight loss thou do make sure he doctors rule out well other things which may cause that as that amount is a lot and I'd think that most who loose weight due to ME/CFS probably usually do so due to not eatting as well or due to thing symptoms they may be getting with the illness like diarrhea, vomiting.
    Unexplained BIG weight loss makes me very wary of saying that you probably do have ME/CFS.

    That's quite typical for ME/CFS .. POST EXERTIONAL FATIGUE or SYMPTOMS .. which appear the next day and the one thing which can really make this illness distinguishable from most other things. That makes it highly likely that you do have ME/CFS. Get yourself to a good ME/CFS specialist ASAP as they may be able to get you heading into the other direction rather then progressing worst. The worst you get, the harder recovery may be as one tends to get more and more complications of the illness.

    I suggest you check out http://wwcoco.com/cfids/bernesx.html to give yourself an idea of just how common the individual symptoms you have are in ME/CFS.

    SOB when standing and palpitations.. makes me think that you are likely to have postural orthostatic tachycardia syndrome (POTS) which is very common in ME/CFS. POTS is a kind of dysautonomia (dysfunction of the autonomic system) .. most with ME/CFS have dysautonomia of some kind or another. You need a tilt table test (those other tests you've had wont pick this up). POTS will cause heart rate increase when upright or standing and is diagnosed by the heart doing that increase on a tilt table. I suggest to check out http://www.dinet.org/

    The good thing if you do have POTS is that is often one of the easiest of the ME/CFS symptoms to help with treatment. Some here have been able to go back to full time work after treatment of the POTS side of it. If you have POTS, I'd think it would be putting more strain on your whole body and maybe by treating that.... the symptoms you are getting the next day may not be so bad either as it may not then be such a ME/CFS postexertional symptom trigger.
  4. Mattman1

    Mattman1

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    Thanks guys for the replies,

    I sure have a lot of those symptoms-- more than enough, IMO, to probably be considered CFS. But I also agree that my case is a difficult one, because of the weight loss-- Its just very hard to put it back on, which confuses me, though I have always been thin. I also agree on a specialist.
  5. Christopher

    Christopher Senior Member

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    I am 27...my initial CFS symptoms were slight muscle weakness and SOB especially while lying down. Crashed a year later from a mold/toxin exposure to a more severe case. Interesting timing because I just tried inosine per Chia and am experiencing the same SOB that I felt initially which I've not felt in a number of years.
  6. Mattman1

    Mattman1

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    Yeah, fatigue is one thing, but SOB is another-- it's frightening when you do so little, but then feel as though you have just tried the five minute mile. I too am in PA.

    Hmmm, also, when I was in college, 6 years ago, I contracted a stomach virus from a roommate-- it was a terrible 24hr flu type thing. Thing is, for the next two months, I had severe fatigue was tired, vertigo, diarrhea, and poor digestion. A lot like some accounts of CFS. Doc had me do lots of tests, nothing came out. It was not until I went on a forum where someone said, 'hey, sounds like you should try pro bacteria-- you may have lost too much.'. I bought a few Activia, and was back to how I was before within a week. I couldn't believe it, to this day, that the cure to my misery was freaking yogurt. Thing is, I wonder if somehow I was in the early stages of CFS even back then, but was lucky enough to subdue it early enough with the pro bacteria, and now somehow it came back, maybe triggered by stress. It's scary knowing so little.

    Also, the palpitations and tremors always are at their worst post-exertion- anybody else experience this?
  7. rlc

    rlc Senior Member

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    Hi Christopher, shortness of breath when lying down is called Orthopnea I don’t know what testing you have had but the thirty conditions listed here a lot of which are Heart conditions can cause it http://www.rightdiagnosis.com/symptoms/difficulty_breathing_when_lying_down/view-all.htm

    A lot of these conditions will also cause other symptoms attributed to CFS like fatigue. If you haven’t had all these conditions ruled out it would be a good idea to get your doctor to check you for them.

    Hope this helps

    All the best
  8. rlc

    rlc Senior Member

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    Hi Matt, personally I would not be happy about accepting a CFS diagnosis with the symptoms you have before more investigation has been done to find an alternative cause of your symptoms. I did a search on the right diagnosis site for fatigue, SOB after exercise and weight loss and it came up with all these possibilities http://symptoms.rightdiagnosis.com/cosymptoms/fatigue/shortness-of-breath-from-exercise/weight-loss-all.htm so I would imagine that there are some that your Doctors haven’t looked at yet. It doesn’t have a category that exact matches the tremors you say you’re having, but if I add muscle spasms you get these 7 possibilities http://symptoms.rightdiagnosis.com/cosymptoms/fatigue/muscle-spasms/shortness-of-breath-from-exercise/weight-loss.htm

    Did the Gastro check you for Celiac? And have you had B12 done? I recommend getting your Vitamin D levels up as quickly as possible, your doctor should be able to give you 50,000 iu tablets of D3 to do this, if you can tolerate this level of treatment it will solve that problem very quickly. But get them to check calcium first as it will show if you have any of the diseases that you shouldn’t take Vit D with. I don’t think that low vit D is the cause of all your problems but it can cause a lot of symptoms such as fatigue muscle pain and weakness and insomnia etc, these extra symptoms will confuse your doctors. so if you can get your Vit D levels up and some of your symptoms go away it will help the Docs to work out what is going on.

    Hope this helps

    All the best
  9. Crux

    Crux Senior Member

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    Hi Matt;

    I believe the Methylation Protocol could help you. Shortness of breath could be a symptom of B12 deficiency. Sometimes it's called the sighs, because people tend to struggle to draw a breath. B12 may also help with appetite and needed weight gain. ( It helped me with these same symptoms.)
  10. Mattman1

    Mattman1

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    Hi rlc,

    Yeah, blood test for Celiac came back neg, and Endoscopy biopsy showed nothing-- all I had apparently was a small hiatal hernia and some indications of gerd. B12 came back normal on higher end, and i am currently on the d3 pills which seem to alleviate the symptoms of fatigue very mildly.
  11. taniaaust1

    taniaaust1 Senior Member

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    There is certainly links with what is happening in the gut/bowels and CFS.. some CFS specialists have their whole CFS theory as it starting out from there. It does sound like you just managed to avoid it on that occassion by doing what your body needed to have at the time. Reach for those probotics again if you havent done so already.

    My own ME was on and off for the first year before like coming in full time... this illness can come and go. (I also went throu a full remission for 2-3 years which happened slowly with good pacing and pacing and avoiding crashing, at a point when i was around 5 years into the illness).

    I can get tremors during or after excertion to the point in which if it gets bad enough, I can then become unable to use body parts eg hold and use a fork. Both POTS and exertion (either thing) can give me tremors.
  12. Mattman1

    Mattman1

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    I'm certainly going to look into POTS more.-- when I read Cheneys article on the heart and BP symptoms, it sounded just like me--feeling of passing out/organ failure after getting up and moving around more than a few minutes. BP and HR get too low. Cardiologist says that means 'you'll live to 100'. A cruel joke on us, eh?
  13. Susan Murphy

    Susan Murphy

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    I have shortness of breath almost always in the heat. When I have shortness of breath, my heart rate is ALWAYS very low! This is definitely not anxiety. When I have had anxiety, I have NOT had shortness of breath. Please check your heart rate when you have shortness of breath and tell me if your heart rate is also low.
  14. Mattman1

    Mattman1

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    I will have to wait for another window when that SOB occurs-- I have been incredibly fortunate in the past year to say that symptom is much better, but why? No idea.

    I know what you mean by having zero shortness when anxiety hits-- it truly is staggering that so many physicians can't comprehend or even entertain mechanisms in which such breathlessness occurs without a panic attack being the precursor.

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