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Is what I have CFS?

Posted , 9 users are following.

madge19860
madge19860

My doctor said, several years ago, that he feels I have chronic fatigue syndrome.I've had just about every test possible, and nothing shows up.  In 1996, I had a viral infection(swollen glands, sore throat, weakness, dizziness, etc.) that attacked some of my joints and my inner ears.  Some of the tiny, sensitive hairs in my inner ears are destroyed, so I'm left with some hearing loss, ringing ears, and pulsatile tinnitus (hearing my heartbeat in my ears...very tough to deal with). Also still get vertigo occasionally.  I also have allergies year round, but all I use for it is saline nasal spray and Flonase. Since Flonase causes anxiety to get worse, I'm trying to taper off that, or use it less.   I feel very tired a lot of the time, and I have to rest often. 

My questions are these:  I have a lot of the same symptoms as many of you, but I also have dry eye and my eyes get very small (swollen) a lot. I keep using eyedrops every few hours, but still, they are red and tear up a lot. Also get headaches.Is that a symptom of CFS?  I feel somewhat groggy at times, have plugged ears, and pressure sensations on the top of my head. Are those symptoms of CFS?  And, I don't really have confusion or memory problems, but when I have to go somewhere, I find it hard just to walk and   Just wondering if some of you can relate.

My doctor says all I can do is exercise, maybe walk 20 minutes a day. But I'm 75, have arthritis in  one knee, and daily heart palpitations that get worse when I'm more active.  Also when it's 90+ degrees and humid outside, (or below zero), I don't feel much like walking. Does exercise really help you if you chronic fatigue syndrome?

0 likes, 26 replies

26 Replies

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  • paul75665
    paul75665 madge19860

    Posted

    Hi Madge

    So sorry to hear about all that you are going through, I was diagnosed with CFS/ME only a few months ago, and it is something I am still trying to get used to.

    I found that exercise makes me worse. My doctors surgery is only 160 metres away from where I live, but I have to get my partner to drive me there. I can walk there, but can gaurantee that walking on the way back I'll start to experience lots of pain (mainly in legs and lower back), fatigue, dizziness and nausea. As for my eyes, mine get very dry and gunked up, which then in turn makes them start to water a lot, its almost as if they feel irritated most of the time. The most worrying thing for me are the pressure feelings you mentioned, I get them anywhere in my chest to my head, I also get a lot of palpitations which I can feel in my ears as well as my chest. These are the problems I experience along with some of the more usual CFS/ME symptoms, I've also noticed the hotter the weather, the worse my symptoms get.

    I think a lot of the symptoms you are getting that you are querying are synonymous with CFS/ME, it hits different people in a lot of different ways, very hard to keep track of thats for sure!

    Take care and all the best.

    • Patrickgeoffrey
      Patrickgeoffrey paul75665

      Posted

      I understand about the walking,100 meters can me nauseous and the farther I walk the slower I walk, I usually feel sore and stiff like I just ran a marathon, I gave up running marathons when I was 34, I felt so nauseous towards the end of my last marathon I never went for another long run,gave up running 14 years ago and working out it would just make me feel nauseous and I would have to stop, I am 58 and I just get worse with age
  • jackie00198
    jackie00198 madge19860

    Posted

    Hi, Madge: First I want to say...Yikes! Twenty minutes of exercise a day? I think not. I hate to contradict your doctor, but in my opinion he's giving you bad information. This is very common, and the same happened to me. When I followed my doctor's advice to exercise, I became severely ill. Doing some movement if you can is a good thing, like yoga stretches if you can manage. Or very short walks, if they don't result in fatigue or worsening of symptoms. If you're in the UK, their current advice of graded exercise therapy (GET) and cognitive behavioral therapy (CBT) is being largely questioned and debunked by the general ME/CFS medical and patient community. I can only walk for a few minutes at a time. I have heaviness and tingling in my legs, and severe fatigue when I try to do anything. Regarding your other symptoms, they can all be caused by ME/CFS--though I'm not sure about the dry eyes, though I have dry eyes as well. Certainly the headaches, vertigo, and even tinnitus and pressure in the head can be caused by ME/CFS. In addition to all that, I also have developed food sensitivies as a result of this illness. Are you seeing a doctor who specializes in ME/CFS--like a rheumatologist or infectious disease doctor? It's very important that you get correct advice. 

    • madge19860
      madge19860 jackie00198

      Posted

      HI, Jackie: the doctor I saw is a new one at our clinic, a specialist in internal medicine.  I certainly don't think that pushing my body that hard when I'm so tired is a good idea. Especially since I'm 75 and have heart pounding  each day. I have become fairly used to the ringing in my ears, but the pulsatile tinnitus (hearing my heartbeat all the time) and feeling the heartbeat throbbing in either my head, back of my neck, or my stomach is unsettling. It tends to happen whenever I increase my activity, such as when I climb stairs or walk much. Also after sleeping (including short naps) and after eating. It always takes awhile to go away, so it's not easy to ignore. I've had a number of tests for this, but nothing serious was found.  I wore a 30 day heart monitor last December, which showed that the heart pounding was nothing to worry about. . So, while I know my heart is supposed to be fine, sometimes I still get a little anxious when it acts up, and especially if I'm really tired.  I did manage to sell at a local farmers/craft market this morning. The weather wasn't too hot or too cold, and my husband always helps me set up. Then I can just sit or maybe stand now and then when I'm talking with people.  It went all right and I took a nap after I got home.  I've been selling at these venues occasionally for a long time, even though it makes me tired.   I've slowed down some (and don't sell when the weather is too hot, stormy, or too cold), but at least I can still do this.  It allows me to walk some and move around, but is not too strenuous, I know what the heavy, tingling sensation in your legs feels like. I get it now and then too.  There is a rheumatologist  nearby, and I may make an appointment with him. I also have an appointment with a cardiologist I like and will just go in and talk with  him about the heart pounding. (Second opinion.) I'm going to keep a food diary too. Maybe that's a factor. 

       I also find that sitting in a chair, getting a gentle neck and shoulder massage from a massage therapist, helps  with the neck arthritis I have (gets rid of some of the stiffness).  The only bad part is that, when I go to the massage therapist, I still feel so groggy and tired that it's an  effort to drive there and walk in.  The massage feels good, though, and when I'm sitting down, I usually feel a little better. Maybe it's the same with you.

        I really appreciate your advice. Thanks.

    • jackie00198
      jackie00198 madge19860

      Posted

      I had problems with heart racing when I first got ill. I went to a cardiologist, wore a Holter monitor, and nothing was found. Then I went to a foremost specialist in ME/CFS: Dr. Paul Cheney, who is located in Asheville, NC. He put me on a beta blocker (Metropolol), and the heart racing/palpitations totally disappeared. There are some very good ME/CFS specialists here in the U.S. Depending on where you live, of course, there might be one close to you.
    • dawn94288
      dawn94288 jackie00198

      Posted

      Hi Jackie, 

      When you said that there are some very good ME/CFS specialists here in the U.S. it caught my attention.  Is there someone in particular that you would recommend?  Have you personally been able to be helped significantly by a specialist?  Anyone in Virginia, close to Washington D.C. that you would recommend?  I have currently just started going to a specialist in M.D.  It's almost 2 hours away, but I am desperate.  This is not the first time I have gone to a specialist.  So far, both have been able to help me some.  But I am still sick.

    • jackie00198
      jackie00198 dawn94288

      Posted

      Hi Dawn: The closest specialist I'm aware of in your general (and I do mean very general) area is Dr. Paul Cheney, in Asheville, North Carolina. He's one of the doctors who started investigating ME/CFS from its very early days--the outbreak in Incline Village, Nevada. I went to see him a few times, but it was just too far for me to travel (I live in Los Angeles). 

  • Patrickgeoffrey
    Patrickgeoffrey madge19860

    Posted

    I have the pressure headaches, I struggle to walk 100 meters I gave up running and excersise 14 years ago,t have had 3 relapses in the last 15 years all triggered by the flu,the longest relapse was 6 years, I did get so bad I was walking with 2 canes for a couple of years,my present relapse started in January with the flu,walking is a crawl for me,tge farther I walk the slower I walk,100 meters can make me feel nauseous,any exercise only makes me feel worse, I have a dog I have to walk every day,that is rough but he is 17 and walks slower than I do,
    • dawn94288
      dawn94288 Patrickgeoffrey

      Posted

      I read what you said, and I just have to say that I am proud of you for keeping on!
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