Hi

Hopefully someone on here is able to give me some advice or point me in the right direction, as I feel really lost & don't know where to go from here.

For the past 8 years, I have been experiencing these sensations of rocking/swaying or being pulled, just like being on a boat. I had tests done & doctors didn't know what was wrong, so pretty much just dismissed my symptoms. So I put up with them, as stressful as they were, until about 3 or 4 years ago when I came down with a debilitating virus that has changed my life.

This virus took hold for about 10 weeks - I was weak, very dizzy, short of breath, had a swollen throat & pharyngitis, was headachy. Also, the feelings of swaying/rocking became worse. After this, I never felt the same. My doctor didn't even bother doing a blood tests & just said that it was 'normal' for females to be short of energy (?!!).

So because the doctor didn't believe anything was wrong, I had to continue working. But after 9 months, I couldn't go on & quit - I haven't worked for 3 years. My symptoms include fatigue, dizziness, sinus/allergies, swollen throat/tonsilitis occasionally, headaches, swollen hands and feet, light sensitvity, heat sensitivity, episodes of nausea and indigestion, shortness of breath occasionally, worsening PMS. Also, when I try to start getting in an exercise regimen, I can't continue it for more than a week, because I end up getting sick.

I went to a new doctor for 12 months after quitting my job - a blood test revealed I had glandular fever some time in the past, but not sure when. But for 12 months, it was like - 'try this, come back in 2 to 3 weeks.' I felt like I was going around in circles & ended up getting nowhere. He said my energy loss was either due to anxiety, depression, or some form of chronic fatigue. All he offered me was an antidepressant. I haven't been back since.

I'm too apprehensive about going back to a doctor, as I don't want to go through the whole process again of 'do this & come back in 2 weeks' forever. Earlier this year, I also found out that those rocking/swaying sensations are likely due to a rare balance disorder called Mal de Debarquement Syndrome (MdDS) or Disembarkment Syndrome. A lot of doctors don't even know about it, and treatment is trial and error. It is so exhausting having these symptoms as well - life feels so torturous sometimes. I barely leave the house.

The social impact has been huge - my family thinks I'm being anti-social, and everytime they go somewhere & I don't, I get bad-mouthed. Because I haven't been to a doctor in ages as well, they think I'm just being lazy. When people ask how I am or what I'm doing - they cover things up & just say 'I don't know', which makes me look really bad & just adds to my anxiety.

I know I am to blame for not going to any health professionals, but I'm sick of the doctor-psychologist-dietician-naturopath circle. I'm sick of being sick & just feel sick about thinking how many more doctors visits it's going to take before I even get diagnosed with something, let alone get some treatment which will actually help.

What should I do - should I enter the cycle of endless doctors visits again? How long do most people take before they have been diagnosed with CFS & do my symptoms sound like CFS? And for those who have been diagnosed - what have doctors suggested, and do they give you a time frame for how long it takes for these debilitating symptoms to go away?

Thanks for listening (sorry to carry on)
Stacey

Find a primary care physician. Ask him to refer you to an immunologist. You need to be tested for thyroid problems and for Epstein Barr. You need to find a doctor that is not going to dismiss these problems as women's problems.

Thanks. So can an immunologist actually identify specific viruses that you've had, even if you don't have it now? I know with glandular fever, I had the antibodies which showed that I didn't actually have the infection at that time (or in the 3 months prior), but I had it sometime between 3 months ago up to 10 years ago. Is it the same with other viruses?

Thanks. So can an immunologist actually identify specific viruses that you've had, even if you don't have it now? I know with glandular fever, I had the antibodies which showed that I didn't actually have the infection at that time (or in the 3 months prior), but I had it sometime between 3 months ago up to 10 years ago. Is it the same with other viruses?


I know that the allergist I went to was also an immunologist. He did a lot of blood work on me and found out that I was EBV positive. I had the antibodies to Epstein Barr Virus in my blood. He felt that my exposure to Mononucleosis was in the recent past. I think he was able to tell me that due to the amount of antibodies that were in my blood. Little did I know (and I have yet to tell the doctor) that right before the summer started, my supervisor came to work with an active case of Mono. So the immunologist was right. My exposure was in the very recent past. I think (but I don't know for sure) they can which virus's you have been exposed to.

Also, have you been to an Ear, Nose and Throat doctor? I studied Audiology in school and the rocking, swaying and dizziness can be a symptom of a problem with your Vestibular (Inner Ear) system.

Thanks for the reply - yes I did go to an ENT specialist a few years back for these dizzy/swaying sensations, but he didn't find anything wrong. I only just found out this past year that this condition (Mal de Debarquement Syndrome) which causes the swaying, isn't very well known amongst the medical profession, even ENT's! I have mentioned it to about 5 different doctors and 1 ENT, and they just looked at me strangely! But there is one vestibular therapist which I have been made aware of here in my home city, that can treat chronic fatigue dizziness and also Mal de Debarquement, so I may try there (if I can get the energy to get there!!).