oh LMNKeternity, I was so sad to read your post. I had a family like yours. They never believed I was sick. Time goes on and they are out of my life now. You are so brave. Keep going. You are worth much more than they will ever know.
There is much exciting research being done on CFS now, breakthroughs are on their way! Suicide can be tempting but it is permanent. One week after the big breakthrough will arrive. Keep educating yourself, keep looking for a doctor to help, and keep talking. I don't come to DS much anymore, it isn't as helpful anymore. I did find a site, not as much emotional support but LOTS of info. You might find it helpful http://phoenixrising.me/.
One foot in front of the other...........

Hi everyone. I'm 20 and living with chronic fatigue, which I've had over the last 8 years. It came on after I had swine flu one Christmas. I was bedridden and found it hard to do or enjoy anything. I've made tremendous progress since then but I still find it difficult just going to the shops and getting on with people my age. People see me and think because I'm young I should be full of energy and able to do anything. I've been made fun of because of it.
Slowly though I've been making better friends, ones that are supportive and not hurtful. I'm still often exhausted and can't do anything because of the fatigue, but I'm positive for the future! And I hope you can be too, lovely person reading this.

I'm 33, I guess about 3 years ago I got sick. I had just torn down a moldy old shed and didn't wear a mask (dumb). The next day I felt off, tired, dizzy/light headed, and almost as if I was about to come down with the flu. But no flu came, just the fatigue and light headedness continued. Then came sensitivity to light, and sound, and headaches, and sinus issues.

I'd always been a natural medicine person so I started my routine of raw garlic, heavy doses of vit c, etc. When I wasn't seeing improvement I went on a very strict diet cutting out all processed foods and sugars for about a month. Its hard to say if any of that really helped or not... what I do know is that my ability to function was so minimal to what i was used to that all I could do was drag through my work days like a zombie, eat, and sleep. I went from needing 5-6 hours sleep a night, to really needing more than 12. I went from being super active - working a full time job, building a house, performing as a musician, and maintaining a social life - to only the job.

Thankfully during this time my job allowed me to work remotely more often so I could just drag myself awake, log on, and try to be productive. I've been working with naturopaths and various specialists and like most of you folks, found conventional medicine to be worthless. I got diagnosis ranging from 'dry eyes' to 'chronic sinusitis. Each time the specialist would ignore the symptoms that didn't fit their model and focus on one that did to make their diagnosis.

I got tested for mycoplasma, lyme, ebv, bartonella, bebesia. I eventually got a mycotoxin test, they all came back negative except for IGG mycoplasma... which may just indicate I had pneumonia once. I went through 5 rounds of antibiotics, as well as sporonox (anti-fungal). I paid thousands of dollars out of pocket for naturopathic treatments ranging from cool laser therapy on my sinuses, to UVBM (ultra violet blood therapy), and a mountain of supplements.

One of the real challenges with this disease for me has been identifying if there is actually improvement. I can tell when I have a bad day - I'm wiped out - and I can tell when I have a good day - I feel more energy, my visual clarity is better, my brain is sharper. But it's so hard to tell day to day if there is net improvement overall - so the efficacy of therapies can be very hard to determine.

at some point about 2 years ago, when I was on sporonox and doing laser, and just hitting this thing hard, I improved a lot. I started being able to get outside and do some basic weeding in the garden - 30-60 min at a time, always wearing the respirator. That strength built into that summer and the headaches started getting better as did the sinus congestion but I still felt so fragile.

I drove myself crazy reading and reading and hypothesizing that it might be chronic fungal infection, or it might be chronic mycoplasma, or lyme (even tho my tests were negative I hear they are not that reliable), or maybe it was chronic inflammation, or autoimmune. I had to stop chasing this idea of 'the issue' and I took a little bit of a buckshot approach.

last year I got into some herbal medicine making and have been on a tincture regimen of Japanese Knotweed (good for lyme and immune modulation, broad antibiotic/anti viral), Turkey Tail (anti-cancer, immune stimulant and regulator), Goldenrod (upper respiratory, environmental sensitivity), Usnea (immune stimulant and modulator), St. Johns wort (side benefit of being a mood stabilizer, but also effective against dormant chronic viral infections). Then I also take ashwagandha and a food based B supplement for energy and resilience.

Coupled with strict diet of cooking everything I eat from scratch, and religiously avoiding uncontrolled environments as much as possible (I'm definitely a home body). I feel like I've experienced slow incremental improvement. I generally need only about 10 hours of sleep now, and on my best days I can do 6+ hours of yard work. But I remain very fragile, pushing too hard drains me for days - knowing where that line is can be tremendously difficult.

I still work remotely 100% of the time, which if I had to be in the office 9-5 I don't think I would sustain. I've lost touch with most all of my friends and colleagues. I struggle with trying to explain what I'm experiencing, or how to get people to take it seriously. I don't go out except to do the shopping or to occasionally visit my parents. A couple times a year someone may come for a visit, but its taxing to clean the house and host someone, even for short periods of time.

my first indication of something being wrong is I have visual symptoms - I really struggle to articulate, it's not blurry, or even out of focus perse... the best I can describe it as is how your vision gets after a couple alcoholic drinks (not that I drink anymore). Where maybe the range of focus is a little more tunnel visioned, and the stability of peripheral vision is just not that sharp. Can lead to almost a motion sickness type feeling. I get light headed, and my legs feel weak. Then my brain gets cloudy, my mood sours, and I feel exhausted and drained.

I got a full blood workup recently from Boston Heart, and mostly things look good, even inflammation markers were low, and hormones were normal or good, mineral levels were good, though I am deficient in B9 and have a genetic abnormality which makes it hard to assimilate. There was some minor concern with cholesterol level but nothing that seems overtly indicative.

I try to stay positive and to stop thinking about the things in life I've lost, or that I can't do, and I try to find and appreciate the joy that I can. But it is so hard not to give in to despair, desperation, hopelessness. We struggle so hard every day, and for what? to what end? this seemingly phantom hope that some day I'll wake up as if from a bad dream and feel normal? would I even know what normal feels like anymore? But there are really only two choices, do something, or do nothing. And if I do nothing then really I'm just waiting around to die, taking up space and resources. So I keep doing something even when it seems pointless, I keep trying to move forward and improve - and so as not to get discouraged, I'm trying not to evaluate if the next thing I'm going to do will "cure" whatever the "issue" really is - I just try to evaluate it in terms of it holistically 'helps' or 'hurts'.

My next endeavor I'm just starting on is switching to the GAPS diet. Which is basically a gut healing protocol developed by DR. Natasha McBride. In her research gut imbalances and leaky gut can be responsible for a great number of psychological and physiological manifestations. It's a big commitment and requires a rethinking about what diet means. But all I can do is evaluate it in the terms of - it is more likely to do good than bad.

One thing I'm struggling with emotionally right now is the impact on loved ones. My live in gf has been a rock for me for years through this, but I also recognize I'm probably one of the most boring BFs on the planet. Shes 29 and pretty much a home body too, but I know would like to do some travel, go out and do things more often than I am able. I can't help but feel I'm holding her back, and that as time lingers on she's beginning to resent that. Its been a rough year for us for a few unrelated reasons, she's been very busy with a new job, and some new hobbies - which I'm happy she's found - but which also competes with me for her time and attention.

I'm scared guys - I feel like I'm balancing on the edge of a knife and I'm just waiting for the shoe to drop - if I lose my job, if I lose my partner - there's no net to catch me. I've never felt so vulnerable in my life, and so powerless to take charge.

anyway, sorry for the rant - it's helpful just to put it out there.

SEvans, I am on disability in the USA (SSDI). I got it 20 yrs after I first got ill, and about 4 yrs after I could no longer work full time. I don't think I would have received it if CFS was my only diagnosis simply because there is no definitive test they can use and it's too easy to fake it (so said my SS inspector). I had several other diagnosis and worked for about 10 months getting together my pain and personal journals, notes on when I worked and days I took off for doctors appointments and physical therapy. I always get physical copies of every test result and keep them in a folder. I had supporting letters and documentation from:
1. My PCP
2. Psych (stating that while I do have PTSD, I do not have depression, which is often a scapegoat they use to deny)
3. Physiatry (pain doctor)
4. Gastroenterology (stomach) - with pics from endoscope re: chronic gastritis
5. Neurologist (brain) along with MRI results from 3 over 5 yrs showing some loss of white matter
6. Orthopedist (bone and joint doctor)
7. Endocrinologist (thyroid, etc) regarding my post bariatric reactive hypoglycemia and stating while I do have Hashimoto's it is under control and not the cause of my CFS
8. Physical therapy notes for 3 yrs.
9. Results of my tilt table test done by cardio

I used a lawyer. It cost me $6,000 of my settlement but I am quite sure I would not have done this on my own correctly. As it was, I still did quite a bit myself including getting together records, keeping track of it all in a binder, sitting with doctors staff as they wrote up the assessment as most did not understand what they needed to do correctly.
I became legally disabled by their reckoning in Nov 2010. I applied in Jan 2013. I received back pay for one year which is the max so I got paid for all of 2012 and until Nov 2013.
I still see most of the doctors above because they will need records in case I am re-evaluated.
Getting disability for CFS is not easy to do. It starts with record keeping, journals, calendars. And if you do try, don't try without a lawyer in the US anyway. It's neither right nor fair we should need legal counsel to get our benefits but it's realistic and worth every penny.
Your first stop (in the US) would be for a free first visit with an established disability lawyer who has good reviews.