Welcome to the community. I'm new myself, and yours is the first post I opened up. I hope I can help.
First, the good news, you're going through a natural process in the early stages of this illness. What you described was EXACTLY what I was going through, to the point I just woke up one morning and said... "I just can't do it anymore" ... that was my first day of disability.
Next, the bad news... not only are you in the early stages of the illness, you're in the early stages of getting it recognized by the powers that be. Dealing with that issue is as difficult as dealing with the illness itself.
I have to be careful here so I don't write a book on the subject in this post, so I'll try to hit the highlights - probably by explaining my own journey.... it might help you avoid some of the timely processes.
I was seeing my doctor for years about fatigue. She tried everything. I did have a few things that accounted for some of it (Sleep Apnea, brain tumor, low hormones, etc), and we fixed them one at a time. When we finished with the known possibilities, we started going down other paths, including increasing salt intake and popping anti-depressants (they all think this is the cure all, and we ALL end up taking them, usually with the only effect being weight gain!). I went to every 'ist' there is, with all the testing they thought was reasonable, with no notable results.
So nothing is working and she throws up her hands and states she has no idea what to try next.
In the meantime, I'd been doing a little research on my own and was 99% positive, given all the things that had been ruled out to date, that I had Chronic Fatigue Syndrome. So I ask her “have you ever thought of CFS?” to which I received a puzzling look followed by, “I’ve had a few patients that thought they had that, but I haven’t been very successful with it.”.. to which I then inquired “What do you mean by you ‘haven’t been very successful with it’”? And she, quite seriously responded, and mind you this was a 60ish female physician “Well they are usually middle aged women that usually complained about everything anyway. They didn’t like what I told them and went off to other doctors.” It might have been about then she threw out the possibility of it being a ‘mid-life crisis’!!
Before I continue, the lessons from the early part of this journey:
1) The traditional medical establishment a) doesn’t understand CFS, and b) doesn’t even think it’s real.
2) The only way to get properly diagnosed and begin treatment (and I use that term loosely as there is no ‘cure’, only things that can help the symptoms be more manageable) is to find objective experts that fully understand the illness.
If you do not take these lessons to heart, you will find yourself spinning your wheels and wasting valuable time to get to the end point of diagnosis (be it CFS or something else). Not only is this a very frustrating experience, but may cost you your ability to collect disability and/or social security if you don’t handle it properly.
This brings us to the next stage of the journey… getting proper diagnosis.
I spent a great deal of time, and what little physical and cognitive energy I had, trying to find the right folks. First I found the local CFS support group (they are all over the place). Going there and talking to the other suffers was invaluable in not only understanding that I wasn’t alone and that this is real, but also in pinpointing the right medical and legal resources in my area to make sure I got proper diagnosis and dealt properly with the insurance issues (this later point cannot be underestimated!). I proactively made appointments with these individuals, keeping my PCP informed throughout the process.
Based on the information from the support group, as well as continuing internet based research, I not only hooked up with all the right doctors, but also anticipated the tests that would be required from other specialists and got my ducks all lined up. Not an easy task given energy levels available. For example, I couldn’t get into see the most noted CFS expert in the area for a month and a half. I had discovered that there was a particular clinical psychologist that he liked to work with that understood CFS very well and he used for neurocognitive exams. So I managed to get in to see that psychologist ahead of my appointment with the CFS doctor. By the time I got to my first appt with the CFS doc, I already had my neurocognitive evaluation and he was able to pick up the phone during my appointment and talk directly with the psychologist and get the results. Getting a doctor to agree to sign off on disability from work is not easy, so you better go to professionals that understand it.
I also learned during the support group meetings, that the biggest problem most of them had was getting to the point that they realized that what they were going through was real, and not just in their head. For some reason I never had an issue getting to that point, but I was surprised at how many people have trouble getting over that issue.
So, the lessons here…
1) Learn from those that have been through it before. Now is NO TIME for reinventing the wheel – especially as it isn’t as round as you might think.
2) CFS is a diagnosis of exclusion (i.e., they have to rule everything else out), so understand those steps of exclusion.
3) Understand what you will have to go through, and find the most efficient way to get it done – your health and finances will rely on your not following conventional medical delays.
Concurrent to all the medical stuff, get your disability ducks lined up. First rule here, do not assume, no matter how nice the insurance people are to you over the phone, that their first priority is not your health, but to find a way to get you off their rolls as soon as possible. You’re cutting into their bottom line. You are pure expense. ERISA (which governs most employer provided LTD policies) was written under the heavy influence of the insurance lobbyists – and I assure you, they were not thinking of your financial needs. One would think, “well if I’m sick and I’ve been paying my premium, they would be happy to pay me my benefit”. Nothing could be further from the truth. ERISA is focused on process, not health. If the insurance follows process, and you do something slightly wrong, it doesn’t matter how sick you are - they’ll cut you off. and ERISA allows it!. They can even cut you off with no good reason, and not face ANY punitive/legal expense from the courts as they make you go through months/years of trying to get your benefits restored.
Lessons from this part….
1) If you’re not scared of silly insurance tricks to leave you high and dry, you better be.
2) When you finish this post, go immediately to the yahoo Disinissues group. It is an email group that provides invaluable guidance between members regarding both LTD and Social Security Disability for people that are suffering from CFS and Fibromyalgia. A lot of attorneys contribute to the group as well as people sharing their experiences on a case-by-case basis. From their main page – “The purpose of Disinissues is to share information and advice about the processes of applying for, appealing, and renewing Social Security Disability Insurance (SSDI), Supplemental Security Income (SSI), and private long-term disability insurance. Disinissues stands for DIS-ability IN-surance ISSUES. It is targeted mainly towards those with invisible disabilities, such as CFIDS and other conditions not on Social Security's Listing of Impairments.”
3) Through your local support group and Disinissues, find the best attorneys that specialize in CFS and set up appointments for an initial consultation (almost always free). LTD and Social Security attorneys are not one in the same, so you will need both, although most SSDI attorneys will not see you until after your initial denial.
On that depressing note, I’ve been writing all day and am exhausted. I’ll add to this thesis as soon as I can. There is LOTS more!
Best of luck,