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Have swollen face, unexplained muscle loss, probs. w/magnesium?

Discussion in 'General Symptoms' started by Ocean, Sep 9, 2011.

  1. Ocean

    Ocean Senior Member

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    Most of my symptoms I can match up with what others have described. A few others I'm not sure I've read about others having.

    One is a swollen face, my face puffs up to varying degrees ever since I got really sick. It is very noticeable. I can't tell if it's swelling or some sort of bloating. Sometimes I wake up looking like I've been hit by a car or been in a terrible brawl. Face swollen, features swollen, sometimes asymmetrically.

    Another is severe muscle loss even in places that just don't seem to be able to be explained by lack of activity. Like in my fingers, hands. My muscles have become like jello. If I touch my arm for example it flattens like a pancake. I can't flex and form a muscle. Flexing and not flexing both look the same. I use my fingers and hands probably as much before, why would I have muscle loss there.

    And the third issue, I can't tell for sure but it seems I may have some sort of negative reaction when I take magnesium. I don't know for sure but maybe it affects my swollen face as well as makes me feel very dry, hot, and dehydrated. Anyone experience this? I want to keep taking it because I'm hoping it will help my horrible sleep but I sort of suspect it of causing weird symptoms.

    Thanks for any input!
  2. merylg

    merylg Senior Member

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  3. Enid

    Enid Senior Member

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    Hi Ocean, two of the problems you speak of are familiar to me if it helps at all. 1) Face swelling seemed to tie in with infection from oral and or sinus issues. My Dentist insisted on removing 3 roots (I was losing some crowns and teeth at that stage). A course of high dose Amoxcillan also seems to have eased sinus problems too. 2) Muscle problems I well recall at the time of unexplained weight loss- quite rigid, almost hard and unyielding. At that stage I was most like the Postpolio description of things. An Osteopath was recommended which I would not advise as a relapse occurred. I'm much more flexible now but hope somebody else can unravel/advise for you.
  4. richvank

    richvank Senior Member

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    Hi, Ocean.

    Have you had any basic lab testing done, such as a complete blood count and a standard complete metabolic blood panel?

    If you could see a rheumatologist, I think it would be a good idea. The flaccid muscle thing does not sound like a common ME/CFS symptom to me, and I think it would be wise to have some other disorders ruled out by a rheumatologist.

    Best regards,

    Rich
  5. Ocean

    Ocean Senior Member

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    Hmm, interesting Merylg. I do have a strong allergy to cats too. Thank you.

    Enid, since I have felt less well the past few years I've neglected going to the dentist at all, so definitely could be something there. Thank you.
  6. Ocean

    Ocean Senior Member

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    Richvank

    Hi I have had all the basic tests done that you get done to rule out other things before getting a CFS diagnosis. I do see a rheumatologist but can't go too often due to being housebound at this time. He didn't know about the muscle issue. He said maybe inactivity, although I didn't mention to him that it was even in places that didn't seem to me to be explained by inactivity. Next time I will. The only thing he mentioned was a muscle biopsy, but said that is quite invasive and may not show anything anyway. It concerns me that this isn't a normal CFS/ME symptom apparently. It definitely began the same time my CFS got very bad. Somtimes I wonder if I may have something else, but so much else fits the CFS profile, and I don't think any other condition has the post exertional sickness the way ours does, does it? So then I remind myself it must be CFS, but maybe something else is going on too. I hope someone may have some idea about the muscle issue, it distrubs me. THanks for your input!
  7. Carrigon

    Carrigon Senior Member

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    I have a friend who has that muscle loss, she's been complaining of it for awhile. But she gets no real answers from the doctors. And her daughter also has CFS/ME and gets the face swelling. They thought she had the sinus infections and stuff, but also the Hashimoto's round face.
  8. Ocean

    Ocean Senior Member

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    Thanks a lot Carrigon. Next month when I see the endocronologist, I'll ask if my thyroid's been checked for hashimotos and any other problem. I hate that I have to go so long between appointments but I get so much sicker when I leave the house and I can't drive anymore, it flares up my symptoms super bad. I'm still trying to recover from a few short drives a couple months ago. So it is such a long process just getting a few issues resolved medically. I'm on a serious snail's pace. If your friend gets any answers please let me know, if you remember to. If I do, I'll definitely post it here. Thanks for the ideas, maybe they will end up explaining my situation too.
  9. allyb

    allyb Senior Member

    Hi Ocean,
    Thank you for sharing this post, although I have no answers I do share two of your symptoms. My face swells and it seems to be when I overexert myself. Sometimes it is my nose and cheeks and my nose throbs, other times the inside of my lips swell. Both will subside with rest and elevation of my feet. Driving a short distance would do it, now it can happen with talking. I did show photos and a short clip of this to my Dr who was not at all helpful.
    I also have severe muscle loss which was first noticeable in my hands, feet and neck. It began at the onset of the flu-like symptoms. In these early days I saw a rheumatologist who thought that it was a symptom of dehydration but this proved not to be the case. She then suggested deconditioning; I had only been ill two months at the time! It has since progressed and my skin appears lose and wrinkly, like it doesnt, fit me anymore or like it has lost elasticity.
    Like you, I have never seen these symptoms listed and I will watch with interest to see if anyone else suffers the same. I have now been referred to Liverpool CFS Centre where I believe the treatment is CBT and GET so it will be interesting to see how this would help?
  10. Ocean

    Ocean Senior Member

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    Allyb, That sound so much like me! I have that loose skin, I get the horrible face and nose pain. The swelling for me is something I usually wake up with. Some days it's worse than others. I know for me it's not a deconditioning issue, or not fully because it's in every part of my body and it happened way to quick to be able to be attributable to that. If you get any answers on this please let me know. I will do the same. I hope you will be ok with the GET and not get overexerted. Best to you!
  11. allyb

    allyb Senior Member

    Ocean,
    So good to hear I'm not the only one with these symptoms although I'm not glad youre suffering. I have never read or heard of the lose skin, it's worrying. My nose is often swollen on waking, though it drains as the morning goes on. I also suffer from orthostatic intolerance, does this affect you? I get this mottled purple colour on standing and a sunburn sensation on my head and neck; this seems to have improved slightly with antivirals?? Unfortunately Docs here don't treat ME/CFS with antivirals. Thanks again for raising this, will keep you informed. Best to you too.
    We can't be the only two in existence, anyone else out there??
  12. Ocean

    Ocean Senior Member

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    Hi Allyb

    I think I have POTS but haven't been tested and honestly don't understand the difference between all the different types of ortho. intolerance. My nose definitely swells too. I turn hot and bright red with activity or lack of sleep. It is like sunburn. I wonder why there aren't as many with these symptoms. Especially the muscle thing really concerns me since it doesn't seem to really be a CFS symptoms and it's so extreme on me. Let's keep each other posted if we learn anything.
  13. Valentijn

    Valentijn Activity Level: 3

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    The relevant types of OI (orthostatic intolerance) in ME/CFS seem to be POTS (postural orthostatic tachycardia syndrome) and NMH (neurally mediated hypotension).

    If you have POTS, you'll consistently feel light-headed when going from laying to sitting, or from sitting to standing. However, even healthy people have this reaction once in a while. You can test it with an automatic blood pressure cuff or heart rate monitor by measuring your heart rate when laying down, waiting a minute or two, then standing up and measuring it again. If you have POTS, your heart rate will increase by at least 30bpm within a few minutes after standing.

    NMH usually starts after you have been upright for a while, especially if you are standing still, such as waiting in line somewhere. It causes a very low/narrow pulse pressure. The normal pulse pressure (difference between your systolic and diastolic numbers) is around 40, but with NMH the pulse pressure will drop to less than 25% of the systolic number.

    You can measure your pulse pressure with a home blood pressure monitor, though on a good day you might have to stand still for half an hour or longer to get an abnormal reading. On a bad day, you might be able to detect it with a BP monitor just from sitting upright for a while. If your pulse pressure gets very low (under 20 or so), your BP monitor won't be able to detect your BP and will just give a error message.
  14. Ocean

    Ocean Senior Member

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    Valentijn

    Does being out of breath have anything to do with OI? Like going up a few steps I am immediately breathing so heavily and am very out of breath by the ttop of one flight. I don't know why I associated it with OI but now I'm not sure. I have a slip to be tested for OI but haven't been able to go yet because of being housebound and the clinic is not too near me.
  15. Valentijn

    Valentijn Activity Level: 3

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    I have the same out of breath feeling when going up stairs, but only when I have other OI symptoms, so I'd be pretty surprised if they aren't related.

    According to wikipedia it is a symptom of OI. Probably a reaction to the brain not getting enough oxygen, and triggering the lungs to pull in more air even though the real problem is the inability of the blood to take the oxygen where it needs to go.
  16. Ocean

    Ocean Senior Member

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    Thanks Valentijn, I hope I can get tested for it in not too long. Then, try to figure out what to do about it. I hate the out of breath feeling. I do get lightheadedness and fast beating heart also.
  17. ahimsa

    ahimsa Senior Member

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    Those symptoms, along with nausea, were my first symptoms and are definitely related (at least in my case!) with Orthostatic Intolerance (specifically NMH). I remember seeing "SOB" written several times my medical chart, especially the results of an early treadmill test, and wondering (only for a split second!) why there were all these comments about my sobbing when I was not crying? (SOB = short of breath, of course! Not sobbing, nor the other more nasty acronym, Son Of a B....)

    I describe the feeling as similar to how a healthy person naturally starts to breathe faster when running. But when the running stops then the heart rate slows down and the breathing goes back to normal. I would walk across the room and my heart rate and breathing would increase as if I were running. And then I'd sit down and it would take a very long stretch of resting before it got back to normal. So, no problem filling my lungs, just a problem with the oxygen getting where it needed to go (not sure if it is low blood volume, cardiac problems, vasodilation and blood pooling, or some combination of these... or maybe something else entirely?).

    Ocean, do you feel better in cooler temperatures? In addition to resting with my feet elevated (or lying down) getting cooler is something that helps me a lot when I get OI symptoms. Back before we had air conditioning I used to lie back in the recliner with an ice bag on my chest during the summer months. And iced drinks are also very helpful. And very light meals (blood pooling in the stomach).

    I hope you do get some testing! :hug: Sending you hugs... :hug:
  18. Ocean

    Ocean Senior Member

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    Ahimsa,

    I definitely get bothered by heat. I'm not sure if I feel better in the cold. I haven't had a full year of being very sick yet and so far it's not cold where I am. I feel hot a lot and have a daily fever so that makes me a lot more uncomfortable if it's not cool. I definitely have SOB, like you :) I need to lay down after one flight of stairs.

    Do you remember what tests you got done? I have a slip for tilt table testing, I'm not sure what else. It may be a general referral for OI assessment. What was the treadmill test? Are there other ones you got done for NMH? I definitely plan to get this done. I need to do my research and be ready. The biggest obstacle has been being housebound and getting such bad post-exertional sickness after going to any doctor. I have to space things so far apart but I will definitely get the testing done. It's so hard for me to get to the doctor and my husband has to take off work to take me each time too. Thanks for any info you can give me.

    Hugs back!
  19. Ocean

    Ocean Senior Member

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    Thanks Soc, I do have my husband drive me and I lay down in the back. I don't think I'd need a chair unless I had to go in a big hospital or something that would require a lot of walking. Right now it's just a few feet from the car to the doctors' offices.
  20. ahimsa

    ahimsa Senior Member

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    I first got sick in 1990 and was undiagnosed for 5 years. I had lots of tests done before any OI/NMH testing. I don't remember the exact protocol for the treadmill test but it was checking my heart. I also had a 24 hour holter monitor (ECG recording), echocardiogram, etc., but while there were minor anomalies (e.g., minimal exertion made my heart go very fast and yet only a few months earlier I had been doing 45 minutes on the stairmaster, hiking 6 miles in the gorge, lifting weights, etc.) there was nothing very abnormal that pointed to any specific problem.

    My story of how I got a tilt table test in 1995 (I'll try to keep it short) is that I had an old friend from high school who had ME/CFS. She got into one of the original Hopkins research studies about NMH. She called me and urged me to apply for the study. Unfortunately, the study was full by the time I applied. But Dr. Bou-Holaigah actually called me at home. I was so impressed that a doctor would care enough to do this! He said that my symptoms looked a lot like NMH and I should try to find a doctor nearby who would do a tilt table test. I found a cardiologist who was open minded enough to order a tilt table test (this was before the Rowe, et al, study was even published) and the rest is history.

    But during my first 5-6 years of illness (1990-1995), despite all the doctors I visited, none of them ever thought to check me for dropping blood pressure. Actually, I don't blame them since, back then, there was no research showing a connection between ME/CFS and orthostatic intolerance. (any doctor who ignores this NOW, however, has no excuse....)

    Anyway, if you do get a tilt table test, you should ask them to make phase 1 (the part where you just get tilted, without any drugs to induce a vasovagal response) long enough. It should be at least 40-45 minutes. If you search for Johns Hopkins tilt table protocol on the web there should be more information out there.

    Finally, here's a link to a Johns Hopkins patient document on Orthostatic Intolerance - http://www.cfids.org/webinar/cfsinfo2010.pdf I know I've posted this before but not on this thread, yet, LOL!

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