JennLea

I was diagnosed with CFS through civilian doctors (three to be exact). First started in 2000. I was already rated for migraines and depression through the VA. When I tried to get treated at the VA, I found that since I was not a "wartime" vet - they wouldn't let me into the CFS program (Newark). I was sent from one doc to another and then back to Mental Health. No one was knowledable about this condition. When I talked to my primary doc about my prognosis, she sent me to get evaluated by a shrink (not the one that I had been seeing through the VA for over a year though) and this doc actually wrote in his report that I appeared to have gotten the list of symptoms online and memorized them. I was so upset. When someone who has been dealing with CFS for almost 5 years is accused of "faking it" - my response was: of course I know the symptoms, after dealing with these symptoms for 1/2 a decade and trying to get myself better, well why shouldn't I know them. Fortunately now I am only dealing with minor symptoms. Anyway, I've about had it with the VAMC's. Be careful when you are dealing with doctors who don't understand CFS. That's my experience. And to be rated on this disability - well, look over the physical sheet and take notes before you go for a C&P. Also, if you are being treated by a civilian doc, have them look over the sheet and write a report including all of your symptoms and how they determined that you met the VA's requirements for CFS. Sorry if this is off-topic regarding P&T. Jenn

I got a letter titled "Notice of Entitlement for Spouse and Children" yesterday from VAMC and I was curious if anyone would know if it was just a form letter that they sent out to people with 100% (schedular and/or P&T) or if it is sent out specifically to people with P&T status? The letter basically talks about CHAMPVA and who would be covered and where a person could get an application or call for information. I sent in a request for P&T status about a month ago, but I can't see it going through so quickly? I haven't recieved any other paperwork besides the typical -we have received your claim and will get to it ASAP...blah, blah, blah.... I guess I'll just call the 800 # and see what I can find out. :(

No, from what I understand you just put the request in writing that you want your status to be considered for Permanent and Total status and they (VARO) review your claim to see if your condition(s) would qualify.

I know exactly what you are feeling. Exactly! It's literally a push and shove fight within your mind. My ex-husband couldn't understand it. He just thought I was lazy or didn't want to do anything. It's like you want to do things but you feel like you are put up against a wall that is somehow stopping you and you have no idea how to go around it or break through it. Just talk to your doctor or therapist and try to explain it the best way that you can. When this happens to me, I just admit that it is happening and tell myself not to over-react. This keeps me calm. I try to make my appointments midday so that I have plenty of time to prepare for them. I make sure that on the days that I have something to do, it is the only thing that I have to do so that I don't feel overwhelmed. There are a bunch of little things you can do to help yourself. I'm sure you can think of some things to compensate. Sometimes it is just better not to place your symptoms into any category or think that this or that medication will stop the symptoms. We are not doctors. And even some doctors have no clue. With mental health it is basically trial and error when it comes to medication and the reduction of symptoms - sometimes you just have to figure out ways to compensate. Believe me, I've been through many many different meds over the years. Sometimes therapy helps more than meds. The best thing is to have an open communication with a psychiatrist or psychologist that you feel comfortable with. If you don't feel OK with your doctor then request a different one. I hope this helps in some way. But, then again, what do I know, I'm on various psychiatric meds myself.

Well, I received a response from the claim that they were working on "DENIED" - which is no surprise - they claim that the symptoms that I have been stating are from Chronic Fatigue Syndrome are really from Depression. (I know that they are not but I really don't have the energy to fight them and since I'm at 100% already there is really no sense. I was hoping to have this as a NSC secondary condition but just having everything, symptoms and medical statements from my private specialists in my C-file is good enough at this point). Anyway, their denial supports my SC condition of Depression - not that I need any additional support because my psychiatry records are proof enough. But, I want to get P&T status on my current SC conditions, Depression and Migraines, for various reasons. Most of all because these conditions have not stabilized in the past 4 1/2 years even with trying various medications and therapies. And they continue to affect my life and stop me from being able to work and do many other things that regular people without these ailments do. Should I write a written request for P&T status? Should I request a re-evaluation? (I can't believe I'm saying that) Should I call and find out where my C-file actually is located at now? Should I wait and see if they are going to re-evaluate me like they were supposed to this month? (I hate waiting - Soc Security should have re-evaluated me last year and never did and my daughter will be going into college next year so I would need to know rather than wait in case she can get the benefits) I'm not quite sure what to do? Any advice? Oh, I know that I have a year to send in a NOD if I choose to do so. Jenn

Sometimes Caffiene works for migraine sufferers. For me, if I'm out of my meds, I take 600-800 mg of ibuprophen or even 2 Eleve. I'm not suggesting he take anything that I take though - I'm just saying that I do this. Heat packs can help the discomfort. My advice would be to get him to the closest ER and they will help him. Waiting for his doctor's appointment seems wrong when he can get treated by an ER doc - even at a VA (they have immediate care clinic's for patients that need to be seen ASAP) that doesn't have an ER.

Well, my other claim already has been looked at and I'm I'm fine with that. I'm just worried about the re-evaluation of the 100% part and wondering if that is going to happen. And I'm not 50 or over - I'm not even 40 yet.

B) I'm going nuts waiting to see if they are sending me in for another C&P. I kept being told over the last couple of years that I would be re-evaluated in September 2005. Now I might have complicated things because I submitted a claim for something else over the summer which is now with the "rating board" (yes that is what I was told). So what does that mean? Will this push back my evaluation? I don't think that the new claim will be given any additional percentage (it's complicated and I'm not really upset about it though). Do they have the option of going through all my records at once (since the newer claim sort of corresponded with the two older medical issues that I am already rated at 100% for? I mean could they just look through my C-file and re-evaluate it since it's already in their office and basically has up to date info - personal statements and treatment notes regarding migraines and mental health - on me (minus newer C&P's for neurology and mental health)? I called the Regional VA office and all they keep telling me is that if I'm to have a re-evaluation I with receive a letter from the VA hospital telling me when the C&P is scheduled. My anxiety levels are rising every day. Sorry if I was rambling a bit.

I'm in a similar situation. Supposedly I'm to be re-evaluated this month (4 1/2 years since they upped my rating from 30% to 100%) and in the last two years I've gone from GAF of 45's to 60's. But, there is reason for that. I have changed my lifestyle - not working and have reduced the stress levels tremendously, and I'm on various meds. I also tried going back to college but it ended up being too much for me and I relapsed with alot of symptoms. I'm not expert - but here is what I know or have been told: Your Doc probably does GAF ratings about every 3 months or so. But, I've been told, when they are re-evaluating you - they are supposed to look at the whole picture not just your current status - and how you would deal with being put back in a work environment rather than the environment you are currently in now. OK, that sounds a bit naive. But, when you are up for re-evaluation, you might want to write a letter explaining how you deal with life now and how difficult it would be for you if things changed. Have you had any setbacks? If so write about them. Talk to your psychiatrist about them. Hope this helps some?