Hi, I'm posting on these forums because I am in urgent need of help and no amount of tests and doctors are giving me any results. Please excuse me if my writing is poor or I don't make sense - sitting up, typing, and making sense of words is nearly impossible for me, my fatigue and dizziness is so bad.
First off, I'll tell you a little bit about me before this started happening.
I used to go to the gym four days a week. I did an hour and a half workout involving cardio, jogging, biking, weight lifting, and stretching. I would often have enough energy at the end of the day for another light jog around the neighborhood before bed. I frequently went hiking, rock climbing, and swimming. Being physically active was, as you can tell, a major part of my life and something I took pride and joy in.
Then I got sick. I don't know what I got. This was three months ago. It hit me gradually. It started with fatigue. I stopped going to the gym as much. I missed work. I was sure I would get better soon. In the past I would get sick sometimes, like all people, but I was always up and back on my feet within a few days.
Since then I have canceled my gym membership because I can now barely make it to the bus stop. I have not been to the gym in two months. I have stretch marks all over my torso, legs, and waist from losing so much muscle mass. Doing any sort of physical activity such as light walking or even making my bed makes me so tired it becomes impossible to stand. This has been going on for over two months, once again.
I am also very very dizzy. To the point where I cannot go about my daily activities because I bump into people/objects. The whole world spins and I cannot focus. My hand eye coordination is shot. My arms/hands frequently fall asleep, or become very hot or cold, or lose feeling all together. When I walk it feels like I am on a movie set and someone is beneath me pounding on the fake floor or tilting it from side to side. I cannot turn corners properly.
I also have had a severe headache for the past 20 days that does not abate with the use of any of the following: extra strength tylenol, advil, ibuprofin, midol, tylenol 3, and a muscle relaxant. This headache does not go away. It has been constant for 20 days and counting. I have it when I wake up in the morning and when I go to bed at night.
I have lost my job, which I loved and planned on making a career out of, because of this.
I have had blood tests and they reveal no problems. I have been tested negative for mono. I have had a CT scan and it has revealed nothing. I was given antibiotics for an inner ear infection over a month ago and all they did was give me the runs.
I have lost everything in my life that I enjoyed and the doctors are unable to tell me what is wrong with me. They are telling me that it is all in my head and it is caused by depression. I was not depressed or ill or weak before this set in. I am now and they seem to think that because this is destroying me then I must have some kind of mental illness, but I wonder how they would react if they lost their health and their job to something and they don't even know what it is?
I cannot even get out and enjoy the short summer here in Canada. I simply don't know what to do. Any advice at all is welcome.
Sorry you feel that way. I have been battling this for years. Some people no matter how bad they feel when they force themselves to excercise they get better. Thats not the case with me, but after alot of research it seems that gradual exercise is the best bet.
Other things you want to check is blood pressure standing and see if it drops thats a sign of a new age syndrome called (OH).
Hi Danners - I'm sorry you are feeling so wretched. I too, suffer with similar symptoms, dizziness, weakness, fatigue. Even after an 8 hour sleep I still feel tired. It comes and goes and at the moment I'm feeling a bit yuk, however, I think it is to do with my iron / B12 levels, although i can't be 100% sure - have you had you're vits/mineral levels checked out?
What is your digestion like? As sometimes even if you're eating enough B12/iron it can be that you aren't absorbing it properly.
Sugar is also a bugger for me, I don't think I digest it properly and even a little bit sends my levels sky high, then down low, even after eating protein!! It's a nightmare. Relationships, jobs, socialising are troublesome, as it's like "your always tired".....but it can't be helped with quick fix sugary snacks and drinks!!
Danners: I am so, so sorry that you are going through this. It makes me want to cry. I am going through the exact same thing. Except I've found, thourgh trial and error, that mine gets worse when I eat solid food. I frequently am forced to go on liquid diets just to get enough energy and less dizzy enough to walk across my own house. I have also lost my job (which was a great job), my home (because I am unable to work anymore, much less drive (because I am so dizzy), and I am nor currently battling losing my daughter (because I am so sick, I am unable to properly care for her). This "disease" has stolen my life. It has stolen everything I love. My life was just fine before all of this happened. I was not depressed. I also have people/doctors tell me over and over that it's "all in my head". It must be because I'm depressed. And, yes, I AM depressed now that I can't even get out of my damn bed! I keep telling them, "I'm depressed BECAUSE I'm sick! Not sick because I'm depressed." But, they don't get it. There is no pssible way to imagine how debilitating and horrible this sickness is without being in it yourself . . . and I don't even think I'd wish this on my worst enemy.
I have been to doctor after doctor after doctor and had test after test after test. Everything is "normal" so they tell me to go home. Go home?! GO HOME??!! Is that what you would say if it were someone you cared about that was so ill?!
. . . I'm sorry . . . I'm just so weary and frusterated and so tired of being sick. It's there when I wake up and it's there when I go to bed. It's been 9 months straight. My whole body is just "shot" and I feel like giving up all of the time. But, then, how would I ever get better? . . . I wonder if I will ever get better . . . and,in that case, why am I even still alive?
Oh, you guys!!!! This is so my story. I have had it for 2 yrs now. I was doing advanced Tae Bo 5 days a week right before I got sick. I know exactly. I use a cane on my dizzy days.
I went to an infectious disease doctor who specializes in CFIDS. He put me on cq10 and NADH. As well as an anitibiotic I take every 6 hours and Valtrex. I am not sure what part of this "cocktail" is working. But I took them for granted and let myself run out and within days I was so dizzy I was back on my cane. On the day of my kids open house!!!! I fedral expressed the vitamins and started to feel better.
I am not saying this is a miracle by any means. But it HAS helped. I couldn't drive my kids anywhere for months on end due to the dizziness. I am 41 and had to have my mom drive us around! With me and my cane!!!!!!
Pls try and get a referral to specialist. This combo of drugs has given me back some of my indepenance. I still can't work but haven't used my cane since open house. The stuff is very expensive so that is a problem. But well worth it. Even my husband will ask on my bad days are you taking your stuff???
Thank you for your support and I'm SO HAPPY that you found something to help you. I am trying to see a Nutritionist currently, but it's proved to be very difficult with my insurance. I am quite convinced that this may be SEVERE food/natural chemical intolerances . . .
Know how you feel, I've been through a similar thing.
Did a virus/flu infection preceed your dizziness and did the dizziness preceed your fatigue?
Secondly, is the dizziness only present when you walk around or move a lot?
Thirdly, try walking heal toe with your eyes closed (might be very difficult), do you feel your eyes flickering all over the place.
Fourthly, try looking at a large letter on a wall or something (like arial size 20 font). Keep your eyes focused on the letter and move your head side to side. Is the letter very hard to focus on, or does it look blurry.
Fifth, do you have any tinnitus or noticable hearing loss?
Hi Danners, I may not be of much help, rather, just wanted to say, so many of your symptoms align with my own, particularly the inability to focus and coordinate things properly. I also yearn for my 'normal life' back again. Like yourself I used to be very into sport, but can't even walk down the road now without extreme physical exhaustion. Are you able to socialise with other people around you? Are you able to tolerate much noise, e.g. talking, TV etc? Personally, I'm not into taking drugs, so have tried other avenues and must confess, yoga and breathing exercises help to a certain extent alongwith, of course, sleep, but probably like you I feel I'm sleeping my life away and am becoming a recluse from society.
Hate to say it but mine began with an acute inner ear infection over 2 years ago now. Have had MRI, CAT scan etc which shows small vessel ischemia (narrowing of arteries in brain) but I'm now going to go down the track of seeing an ENT specialist as I believe I'm discovered something very recently on the internet which may be applicable; vestibular hyperacusis. It can affect autonomic system and cause problems such as loss of consciousness, mental confusion, or extreme fatigue. Another thing to look at (which I also intend doing) is labyrinthitis and vestibular neuritis (chronic dizziness, unsteadiness and imbalance, difficulty with vision and impaired concentration. Sorry this is so long winded, but I do wish you well.
For Danners and everyone else here that is feeling a lot of dizzyness. I would VERY STRONGLY suggest getting checked for orthostatic intolerance. Basically, what this involves is doing what's known as a tilt table test and the point of the test is to measure your heartrate and blood pressure in a standing position.
It's been pretty well documented that many CFS patients experience rapid drops of blood pressure while doing this test and often even pass out from it. What doctors can do if you are diagnosed with this problem is they can give you blood pressure medications and a high salt diet to stabilize the blood pressure and heart rate.
Talk about it with your family doctor first or make an appointment with a cardiologist. I've read many stories where this primary symptom was linked to many others and fixing it can make a person feel much better.