I am a young woman and have Chronic Fatigue Syndrome. Due to my disease I have been unable to lead a normal life with activities and occupation for the last couple of years. My symptoms started in a very slow onset years before that with gut problems and food intolerances, then fatigue and later on depression.
Part of my illness, I have been homebound due to photosensitivity and cognitive symptoms, including sensory overload.
Over the years I have tried several treatments, including amino acid- and nutrient-complexes, diets where I left out histamine-increasing and intolerant foods, a short try at psychotherapy, atlas therapy, and gut and methylation protocols. I had little success with most treatments.
The histamine-low, without-egg-lactose-gluten diet was somewhat helpful. Fatigue after meals decreased and mood improved, but the food I could eat was so restricted that I stopped the diet after almost a year. The thing with the diet was, it was a lot of work, it improved the symptoms slightly but not enough and as soon as I started eating more normally again, the symptoms came back. So I didn’t feel there was a sustainable effect.
What helped me most until now, were some single vitamin supplements. I had had folate deficiency and at one point I found out that vitamin B2 is a cofactor in the folate metabolism. Taking vitamin B2 had a positive effect on fatigue, histamine reactions and mood. After a while I developed anxiety though, and had to stop vitamin B2.
After taking methylfolate and sublingual methylB12 for half a year, I was barely able to digest any carbohydrates, only being able to eat pork, rice crispbread with a lot of butter, zucchini, blueberries and sometimes potatoes. I had weakness, anxiety and a pounding heartbeat after meals. After ingesting calcium-rich foods, I got high glutamate symptoms, noise sensitivity and photosensitivity of the eyes. These symptoms were all more or less eliminated by taking vitamin B1. Then vitamin B1 lead to problems with appetite, increased hyped-up/ stress-feeling and when I added biotin I developed some cognitive symptoms which I haven’t been able to rid myself until now.
Because of the strong improvement of some symptoms with nutritional supplements, I think that sufficient levels of certain vitamins and cofactors are very important in CFS. Yet the supplements also tended to deplete other cofactors and cause some new problems and I’m still working on that.
After trying many different supplements, I have managed to eliminate symptoms like fatigue after meals, which was always one of my main symptoms, depression and most of the gut symptoms. I also feel that my body is in a better state in other aspects, I’m not freezing constantly anymore and don’t have to eat very much to have a bit of energy.
On the other hand I have developed photosensitivity, with immediate worsening of symptoms when I am exposed to too much light, as well as a constant slight tingling and burning of the skin. I also now have some cognitive symptoms including sensory overload and a certain disorientation outside. Both of these symptoms probably developed from some badly tolerated supplements and make me unable to leave the house.
Some other symptoms I experience are problems with exercise and exertion. I don’t really get a delayed response to overexertion a lot, like many others with ME/CFS do. I directly get symptoms like pressure on the head and muscles and increased heartbeat when doing too much and I have to stop. I don’t have massive muscle fatigue. I’m at the level where I can walk the stairs to the basement two times a row without getting strong symptoms, three times is usually too much and where I can carry one water bottle, two is too much.
I can concentrate well most of the time, but too much cognitive activity exhausts me. I spend most of the day in bed, don’t have any problems getting up though and lately was able to sit at the computer for a few hours every couple of days.