Where to go from here?
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)