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?
Hi, I haven't been diagnosed as yet (I have the Dr on Tuesday) but I'm almost certain I'm suffering from CFS. I've had a constant headache, dizziness, not much energy or motivation to do anything for almost 2 years.
I wake up every morning and feel as if I've never slept and with an unbearable headache that no painkiller will shift!
I used to do a lot of walking and use my exercise bike but I can't do it anymore. I've sold my bike and rehomed my dog! The Dr keeps on telling me it's migrane. My son started school last week and has been upset in the mornings going in which has been causing me awful stress and worry and I've been very very ill this week which I think has been triggered by stress. I'm honestly at my wits end with it and feel I can't go on much longer! I'm hoping the Dr will listen to me on Tuesday as I'm sick of being fobbed off with rubbish painkillers
I do have the pressure headaches,I struggle to walk 100 meters, any exercise only makes me worst, I had to give up running 12 years ago, I gave up running marathons 24 years ago, I felt so nauseous towards the end I never ran another one,walking 100 meters can make me feel nauseous now, I don't go anywhere I don't have to go,it is too much trouble just to walk to my car, I do hold down a full-time job,but it drains me so much, I never go out, I have had 3 relapses in the last 15 years all caused by the flu,all my tests come back ok. I sleep well and never feel tired but my muscles are sore,stiff and ache, I have never been diagnosed with CFS as I don't suffer from chronic fatigue,but I have other symptoms in common,the flu always causes problems for years,the longest relapse was 6 years for me,my problems started 40 years ago,it just gets worse as I get older
For many the symptoms of cfs/me are fluctuating. Also, from what I've noticed on the site, not everyone gets all the symptoms nor does everyone get the same severity all the time. Cfs/me can often come after a virus so, maybe yours came after the one you had. I've had the labryhthitis like you at one point in my life and had recurring symptoms as did my sister and a friend (all got it at the same time). My cfs/me was actually from a car crash though.
I feel cfs/me can intensify some conditions for some, diminish them for others (someone on here had terrible headaches that disappeared with cfs/me)
In relationship to your eyes, it could be part of your particular cfs/me reaction. My friend gets sinusitis continuously since starting with this condition, I get one red hot ear and cheek. If nothing else, the condition is unique!
Exercise wise, nothing strenuous. When I wasn't as bad as I am now, I did yoga and Pilates. Each gentle exercises. If your heart starts racing with exercise, don't do it. Your doctor could refer you to a cfs/me clinic if you are in the uk. If it's too far to travel, they can offer telephone appointments. They can guide you to what is helpful to you personally.
Hi Madge, a lot of your symptoms do sound like CFS. I had glandular fever in 1994 with swollen glands, sore throat, etc and developed CFS following from that. I also now have a lot of allergies and cope by trying to avoid things I know I'm allergic to where possible and taking non drowsy anti-histamines. Re your dry eye problem - I developed this last year and also found my eyes were contstantly red and swollen no matter how many eyes drops I used but then discovered that I was allergic to the preservatives in the eye drops. Got preservative free ones from my doctor and it made a huge difference. No more redness and swelling - my eyes feel soothed when I use them. I use an eye ointment called Xailin Night which you can get from doctor or buy yourself. It might be worth trying as you could also be allergic to the preservatives as you also have other allergies too. I also get weird pressure feeling in top of my head (feels like I'm wearing a really tight hat!) and find if I lie with my feet raised above my head it can help a bit. I find short walks and remedial yoga or gentle stretches are the only exercise I can do but only if I have the energy to do them. If you push yourself when overtired it will make you worse. I also find pacing myself helpful. Good luck.
Hi Beverley, Interesting...I had a red hot ear, swollen glands, and sore throat with fatigue at the beginning of the virus I had. And, two weeks later my car was hit by a drunk driver, and I had a mild concussion.
As far as exercise goes, I have problems walking far also. Being a senior citizen doesn't help. But I don't have nearly the energy of my friends and am younger than some of them. It's discouraging. I do enjoy sewing and selling at a farmers and crafters market one day a week. My husband helps me set up, or I wouldn't be able to do it. At least I'm able to get out and still do that (I don't go if the weather is bad). I can relate so well to the wonderful, thoughtful people here. I've felt like this for a long time but was undiagnosed. I don't know how I got through each day working, before I retired. This isn't easy. Thanks.
Hi Elaine, I use preservative free eyedrops too (called TheraTears here in the U.S.), after trying the other kind. My eyes still get red and irritated much of the time, and I need to use the drops every two or three hours.I have to pace myself too. Right now my son is painting our garage. I should help, but just took a nap and don't feel up to helping. Luckily, he understands, but it makes me pretty useless. You're right...pacing myself helps. Thanks for your reply.
Hi Marge, my story is almost identical to yours. I was diagnosed with CFS 4 years ago. Exercise did not make me better, as a matter of fact, it made it worse. I was also recently diagnosed with an inner ear disease that has the exact symptoms you listed. I have headaches and feel very groggy or foggy headed if I don't get about 11 to 12 hours of sleep per night. I use a CPAP machine for sleep disorders also. I became bedridden for a year but am slowly coming out of that. I am able to get dressed and be up for a few hours per day now. My advise would be to sleep as much as you can and pace yourself. Exercise is a losing battle as it will only tire you out more. I was allergy tested for foods and once I cut out all the foods I was allergic to I started to get better, very slowly. Have your vitamin D and B12 checked. A large percentage of CFS patients are vitamin D deficient and this will make you feel drastically worse as will being B12 deficient. Hope some of this info helps you. Best wishes, Diana
HI Diana, I'm sorry you also have inner ear problems. It's tough. I don't understand why my doctor said exercise would help. As you say, it makes it worse. I get headaches and feel groggy, no matter how much sleep I get. For me, 6 to 7 hours is about all I can manage, since every time I need to get up, or just wake up, during the night, my heart pounding starts and continues for at least half an hour before the throbbing (and the heartbeat in my ears) lessens so I can get back to sleep. I do find that if I get too much sleep (8 hours or more), I feel more sleepy all day. I have no idea why.
When I had allergy testing done, they didn't test for foods, but that was quite awhile ago. Maybe now I could go again, and be allergy tested for foods. I know that some foods seem to give me problems (bloating, sweating, stomach ache), and of course, I also have heartburn issues.Monosodium glutamate in foods doesn't agree with me either. (I can't take prescription meds for my heartburn, because when I did, I developed a serious heart arrhythmia that only went away when I stopped the heartburn medication. For me, it seems that the fewer medications I have to take, the better. I have started taking more vitamin D3 since my doctor said I should., but he didn't really tell me how much to take.I also am taking B vitamins now, and a small dose of magnesium (which hopefully will help my heart issues a little). As for B12, do pills work, or are B12 shots better? I've heard the pills aren't as effective. What do you think? And, thanks for the help. I appreciate it. :-)
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!
I can relate to the not being able to do things, I used to walk 30 miles a week and was very active before all this. It's sometimes like looking at a different person when I think about who I was.
It sounds like you had a double whammy at the beginning of your condition starting. it mostly needs a trigger from what I've read. It is the most frustrating and life changing condition isn't it? I'm mid 40's and people tell me not being able to do things is age related-funny, 4 years ago I was doing fine! I can only Imagine for you similar things are said. I myself don't believe we are all so easily pigeonholed into age boxes.
Do you still get the hot ear? I have mine at the moment, not as bad as sometimes but, still hotter than the other. I get tinnitus too quite badly at times. The worst being at Christmas in a shopping centre where It was louder than the crowds.
I'm glad to hear you still have a hobby that you can do and enjoy. I think It's important to have these types of positives In our lives with this condition. It's also good to hear that your husband is supportive with this.
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.
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 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.
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.
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).
Thru research and talking with my physicians, I have found that the B12 injections are better. Your stomach stops absorbing vitamins during your fifties or if you have stomach problems so not much of the vitamins you take orally gets used in your body. I take an injection once a week. As for the vitamin D, if you are deficient, my physician said I needed 5000 units daily in order for my body to absorb enough to start reversing the deficiency. My food allergies were causing my heart palpitations and my heart pounding too. I have to be careful of medication fillers as well so it really limits what I can take. I hope some of this info helps and please do get food allergy testing. It made a huge difference in me. 🙂
Hi Beverley, I don't think I answered your question about your red ear. I don't get a red, hot ear anymore, just that once, when I had the viral thing that started all this. But I have tinnitus daily, both the loud ringing and the pulsating kind that pounds with my heartbeat (the pulsatile kind is worst kind for me and causes me to lose sleep). That will probably never go away for me. Hope you are doing okay. I try to do more things sitting down, since I actually am able to accomplish something when I'm resting. Sewing, and selling online are fun. We need to try to get the most enjoyment out of every day, even though some days it's not easy.