puppyduks

Thought I would give another update. I successfully tapered and am benzo free. Went for a few weeks with no meds and my fibro was really painful. VAMH doc put me on 20mg Cymbalta. I start taking it today, I hope it doesn't make me tired or spacey. Hope everyone is doing well, thanks for your support.

Thank you everyone for all your support and well-wishes! I am lucky to be employed, the pay is ok and because the work is so unpalatable/inhospitable, my employers will put up with a lot of "behavorial quirks". They overlook a lot of my issues and just try to let me work by myself as much as posssible. I don't know what I would do if I couldn't work this job though, since I have not lasted that long at any other normal job.

Thanks everyone here is an update. Switched from the 30mg temazepam to 10mg diazepam in one day. No problems except quite a few sleepless nights. But as the diazepam built up in my system I started feeling really, really tired all the time. I took the 10mg diazepam for two weeks and then cut it back to 7.5mg a few days ago. Still no noticeable symptoms because I am sooooo tired all the time. I now take a one hour nap after work, and still crash out all night at bedtime. Although I never sleep completely through the night but I have been like that for years before the benzos. I wish I could taper faster because this extreme tiredness gets old. But I am in it for the long haul and looking forward to the day I am free of it.

Filed April 2013 and just got my rating. Had a couple snafus along the way but it all eventually worked out. I was rated 70 PTSD, 40 Fibromyalgia and 10 FOR IBS. So a total rating of 80. I can not tell in words the feeling of relief and validation I have right now. It was a long haul but it has been worth the struggle. For those still going through the process, hang in there. The tunnel may feel never-ending but keep on keeping on... the light is there at the end even if you can't see it.

Thanks, I hope you are able to get off the pain meds without too much trouble.

Taking Temazepem 30mg at night for sleep. Been on it for a year. I want to come off it. Has anyone successfully tapered down and if so, can you share how you did it? Also, how did it affect your family while you were tapering? Thank you.

Hi, sorry I have not updated in a timely manner. I had my C&P's and the 4 hour exam was really only about an hour. The PTSD one I am not sure how long it lasted, it seemed like it lasted maybe 36 hours, it was rough. I am guessing maybe 2 hours? The docs were all very nice and professional, not their fault for it being rough, just my own issues. There was no colonoscopy, just a routine exam and answering a lot of questions. I looked on my healthevet and the notes from the C&P's say that I have fibromyalgia and IBS and PTSD. The fibromyalgia and IBS they said impacted my work. I really hope they don't say that I am unemployable. I may not play nice with others and may not be the easiest employee to manage, but I would hate to not be able to perform some kind of useful work even if it is a greeter at WalMart. The PTSD they said had reduced reliability in most areas work, social, cognitive etc functioning. I am really relieved to know that my fibromyalgia is not some rare disease or cancer that I picked up in the war that is slowly killing me (what I thought previously). It sucks to have, but it won't kill me so that's good. The IBS- well, now I have an explanation for all those extra bathroom breaks that I needed for all these years at work, that I got harassed by my supervisors for because they thought I was just lazy and wanted extra breaks. Validation is a wonderful thing. :) the PTSD- I am really bummed. This is the third doctor that has said I have it. I don't want to have it. I want to be normal like I was before the war. Still trying to come to terms with this one. Almost 2 years at the Vet Center/VA and I still don't want to accept that I have it. I am not sure what my rating will be but I already have the knowledge that I was most interested in: The diagnoses. Thank you all for your advice and comments, and good luck with your claims.

Congratulations!

Did my last exam today. Huge weight lifted. Wish me luck on my results.

I am not sure what "secondary" means. I put Fibromyalgia, PTSD, Depression, IBS and CMI on the original claim. When the VA closed out and denied my claim in error late last year I got them to re-open my claim. They re-opened my claim but it now says for Fibromyalgia, GAD, MDD, PTSD. They did not put IBS or CMI on the re-opened claim. So I am not sure how the "claimed conditions" thing works. I have two C&P exams coming up. One is for "medical" and one is for PTSD. The one for "medical" is the 4 hour exam. I just don't know what they are going to examine. I am guessing an exam for Fibromyalgia since my IBS claim did not get re-opened? Edited to add that the VA has already taken about 21 vials of blood, done x-rays (everything normal, no arthritis) and sent me to the VA neurologist.

Thanks guys (gals?). The exam just says "medical". I am claiming Fibromyalgia. The VA did the blood and x rays long ago, then sent me to VA neurologist who said it was Fibromyalgia with a possible Gulf War Illness Component. I am also claiming PTSD. I am a Desert Storm vet (gal). One of my symptoms is IBS so I was worried they would do a colonoscopy at the C&P. I would need to make arrangements for someone to drive me home if that was the case. The C&P paperwork was vague about whether I would need someone to drive me home, or if I would be okay to drive after the appointment.

I have an exam scheduled. The guy said it is a 4 hour exam. What will happen in the exam, and will it really be 4 hours, or is that just a "guesstimate"?

Berta, I heard that they have 3 different software versions that they are trying to consolidate or at least get them compatible so one can show the other's info... just what I heard so not sure how true that is. I can tell by the way they talk if the reps are new or less experienced employees. It is frustrating to get a rep who doesn't have a good grasp of the system but I guess they gotta learn somehow. One good thing about that number is that you will probably get a different rep the next time you call. After the VA denied my claim because I did not show up for a C&P (I was not notified of exam date/time) and I got conflicting information from two different reps while trying to get the error fixed, I emailed Ms. Hickey for help. She replied the same day. My case got re-opened within two days. I am now waiting for them to contact me to schedule the exams and it is back on track. I went into the OPC yesterday to update my financial papers since my salary has changed. There were some ladies there with a huge cake, giving pieces to everyone who walked in. I was too anxious to see what the cake was for (I have really bad anxiety and panic at the VA and everything becomes a blur). But my five year old daughter was all over that cake. Everyone was really nice and helpful but the VA medical clinics just make me want to bolt. The same feeling you would get if you were standing on the edge of a cliff and someone accidently jostled you. I had to take the papers outside to fill them out. I felt like an idiot. But I got them turned in.

Not sure if this is common knowledge or not but in case it could help anyone.... If you call the 800.827.1000 number during business hours to check the status on a claim or ask a question, the recorded message will tell you that all representatives are busy helping others and please try your call again later. If you get up early in the morning and call before business hours, you can utilize the callback feature. At the prompt, select the option to leave your name and number and have a representative call you when it is your turn in line. Say your name and confirm your number and hang up. Then, KEEP YOUR PHONE HANDY until you receive a call back (I have even answered it dripping wet from the shower). It may show up as a restricted or unknown number, ANSWER THE PHONE. It will be a recorded voice telling you that there is a call for "Your Name". ACCEPT THE CALL. Then voila! Real live person. And they have almost all been super friendly, courteous and willing to help you get your concerns heard/questions answered. They have never failed to call me back, and it is usually pretty fast, within a couple hours or so. MUCH better than waiting on hold or getting frustrated and upset by repeatedly calling in a futile effort to get through faster. Hope this helps and that it is not simply redundant info. :)

Thank you for your words of support and suggestions. I am just sick over this. I am trying to cope the best I can. I found the exam calendar on the EBenefits web site. I guess I will have to just check it every day. I have also started calling the 800-827-1000 number every Monday to check the status on my claim and make sure nothing has gone awry. I always leave my number for a callback and I usually get a call back within 30 minutes. I may up the calling to twice a week just to make extra sure. I am always polite even when the rep is curt.

In December, after more than a year of waiting I finally got a letter stating that the VA has requested "the medical center nearest you to give you an exam". I felt good knowing that my C&P was on the way. Three weeks later I got a letter stating that my claim had been denied because I failed to show up for an exam. I called the 800-827-1000 number and selected the option for them to call me back, which they did within 30 minutes. After explaining that I was never scheduled for a C&P exam, the very nice lady told me that she would have my claim re-opened. I called the number again a week later and another VA rep confirmed that my claim was scheduled to be re-opened and that I did not lose my initial claim filing date, which is good news. This VA told me that it may "take a while" for the regional office to see that the claim has been re-opened. While I am glad that my claim is back on track, I am growing despondent and feeling defeated. My local VA MH provider has diagnosed me with PTSD and put me on meds. Without a disability rating I cannot afford the copayments for these prescriptions. After the VA attached my wages last November for failure to pay copayments I went off all meds. So here I sit, waiting to get a rating so that I can get treatment. My question is, does this kind of thing happen frequently with the VA disability claims process or am I just the victim of an isolated error by the VA? Any idea how long I may have to wait to get an exam now that this has happened?

Thanks, it was kicked out of the FDC because my VSO did not send info on the required form and instead put the info in a word document. I waited six months then Bam, I was knocked from sloth speed FDC program to snail speed Regular claims. I got a new VSO when that happened. It has been 4 mos since then. For an additional kick in the stomach, the VA sent me a letter that my wages will be attached starting in November. They are charging me for Therapeutic care, whatever that is. Anyone want to buy a boat? Or a hunting bow? How about some dishes, or my sofa lol!!!!

Hi guys and gals, My claim has been in Prep for Decision for about 2 months now. I have not had a C&P. Most of the things I claimed have already been documented by VA doctors or are presumptive. Ebennys says my claim will be done between Oct 2014 and March 2015, unless it takes longer (whatever that means). Anyone care to guess when my claim will actually be done? At this point in the VA backlog can I really trust the timeline they gave me? "Unless it takes longer" leaves the VA a lot of wiggle room.... I looked at the 90 day appointment calendar on ebenny and saw only my regular monthly psych appointment for the future. Thanks for any insight anyone can throw my way.

I am a Gulf War vet that has been diagnosed from the VA with Fibromyalgia and PTSD. I am holding off filing a claim because I want to send a fully developed claim that is open and shut. On the advice of the VA Rheumatologist I am making an appointment to see the War Related Illness and Injury Study Center to see if I have CMI. I have a great VSO guiding me and providing support. So far on my claim form I have claimed: PTSD Depression Anxiety D.O. Mood D.O. Sexual Trauma (not sure how to get proof of this since it wasn't reported) Fibromyalgia CMI The first four have been diagnosed by the VA mental health team (a social worker and a psychiatrist). I also have an IMO for PTSD. The sexual trauma I think I am on shaky ground. Nothing was ever reported, and to be truthful I am not so sure I could endure a C&P exam for that. I may take this off the claim form. The Fibromyalgia was diagnosed by a VA rheumatologist. The CMI is pending my appointment but I am pretty confident I have it based upon my symptoms. My question is, if I have already had all this diagnosed by the VA, will I need to go through a C&P exam too? Or will they just take the VA diagnoses and call it good? The Fibromyalgia and CMI are presumptive conditions.

Has anyone had a problem with Trazodone only working for a week or so, then having to increase the dosage to get it to work? After a couple weeks I start reverting back to my anti-slumber ways, and it is so disappointing. I finally get some relief for my wakefulness, late-night house prowling and nightmares, then it slowly goes back to the mental and physical torture of no quality of sleep. If you have had this problem, how did you deal with it?

Thank you for your guidance. I will ask my VSO about it when I see her next. I am so grateful for your feedback! It is hard to know what is what on this journey. The fibromyalgia is presumptive for my war so I am thinking I will not need to prove a service connection. The PTSD issue... I read back over the report from the psychiatrist. In her narrative it does say that "veteran displays symptoms consistent with PTSD and anxiety disorder". So maybe I am reading the DSM thing incorrectly. She gave me a GAF score of 56.

I feel the same as you. I don't have any good advice for you, but at least you know you're not alone. I hope it gets better for you.

I am a Gulf War 1 vet. I was in Dhahran, SA from Nov 90 to May 91. Shortly after I returned home they disbanded my unit and I was on my own. I walked away from everything even remotely related to the war/military and never looked back. Friends, home, hobbies etc. I gave them up one by one and spent many years engaging in risky behavoir (partying, drinking etc). I stopped in 1999 and got a real job, but continued to avoid all and any reminders of the war. It soon got to the point that any reminder would make me feel like bolting, I would get lightheaded, couldn't speak a coherent sentence, had a big urge to get out and red flags waving Danger Danger. I had nightmares that wouldn't go away. I couldn't sleep, couldn't get to sleep and couldn't stay asleep. I was always on alert for "something". I could never relax. I was socially distant and felt like an observer in life. Life didn't seem real to me, it kind of happened in a fog. I had an irritability problem and flashes of anger. I was convinced that I was going to die at an early age and took out enormous insurance policies. Fast forward to this year and I am still the same. On the advice of a friend I saw my county VSO. She recommended I be evaluated by a private person since you can't trust the VA. I saw this guy and he diagnosed me with PTSD and gave me a GAF score of 45. I then began seeing the VA mental health people. First I saw the intake guy and had a panic attack in his office. He assigned me a social worker. The social worker saw me for an hour and said it was all caused by my childhood and I did not have PTSD. I showed her the private doc's report. She said "Oh, Jerry _____... he gives everyone the same diagnosis and the same GAF score, all you have to do is pay him". Afterward I read her report on My HealtheVet. She had written a bunch of things that were factually wrong (I am NOT an Iraq war veteran among many other inaccuracies). She wrote that at one point I "started to cry", when in reality it was a panic attack. She diagnosed an anxiety disorder with a GAF of 65 . I then saw the VA licensed psychiatrist. I spent an hour in her office. Afterward I read her report on My HealtheVet. Most of the things we talked about (nightmares, avoidance issues, flashbacks) were not reported. Instead she reported about my physical characteristics and the fact that I thought all veterans had the same problems I did. She diagnosed me with "Mood Disorder, Rule Out PTSD". I was a normal 22 year old gal when I went to war. I came home another person. The war messed me up and I have lived with it for years. The VA has also diagnosed me with "fibromyalgia, maybe a GWI component". I am so confused and my anxiety is through the roof. I feel like the VA is trying to avoid admitting that the war messed up my mind. I have not yet filed a claim because I was waiting for a diagnosis of PTSD. What do I do now? Now that the VA has officially ruled out PTSD, do i need to go to yet another private doc to get a real diagnosis? What do i put on my claim form? I feel like I am spiraling out of control and I can't think straight.

I am a gulf war vet, served in Dhahran from Nov-May. I was National Guard and got activated for the war, so after I came home I went back to being a guardsman(woman). I got an honorable discharge in 2006. Like so many others, I suffered from Gulf War syndrome and it has continued to this day. I never really pursued getting treatment or compensation for it because it was widely believed to be "all in our heads". Through the years I went to various private doctors for various ailments, but never tried to link them to Gulf War Syndrome. I have had pneumonia 5 times, bronchitis more times than I can count (every cold turns into bronchitis), my gallbladder stopped working and had to be removed, I have aching joints, chronic tiredness (not sleepiness), IBS, nausea/dizziness, wake up feeling unrested, PTSD, and on and on. Nothing that is extremely debilitating, I have a full time job with the federal government, but I have not spent a day without pain. It's like background noise to me after all these years. In 1996 or 1997 I went to the VA outpatient clinic and complained of having Gulf War Syndrome. They began to conduct an interview with me. They asked me questions such as "Do you believe you were exposed to chemical weapons", etc. My reply was the same for each question, since my first reply was yes and the doctor immediately began grilling me for specifics, which I couldn't produce. So every question was answered with "Do you think the government would have told me if I was?" It ended in a stalemate. I refused to give a direct answer because it was very plain to see that the VA thought Gulf War Syndrome was simply battle stress. I never went back to the VA after that. I have never seen a doctor for my aching joints, chronic fatigue, PTSD and sleep issues. So there is no record of that anywhere. Should I pursue a claim for my "unexplained illnesses" AKA Gulf War Syndrome? Or am I just out of luck since I have never seen a doctor for many of my issues? Thank you.