fortitudine

I had my rheumatology appointment at the VA hospital on Monday. It's safe to say that I'm no closer to a diagnosis. After some questions the rheumatologist moved my arms, legs and hands to see if movement was painful. Although I was feeling pain all over, movement didn't make it any worse. The doctor then started applying pressure at some of the trigger point areas. She was moving so fast that I barely had time to respond. I was also wearing jeans and a sweater, so at some points I could barely feel pressure at all. Long story short, the doctor told me to get more sleep (NO SHIT), exercise 3 to 5 times per week, and come back for another appointment in 2 months. I'm not sure where to go from here. My primary care nurse basically told me there is nothing more she can do until I get a diagnosis (essentially encouraging me to cancel my next appointment with her). I can't just sit around for 2 months waiting to go for another appointment just to be rushed out of the office. To top it off, the pain today was near unbearable. I don't know what to do.

Unfortunately I don't have an answer for your question about obtaining the test results or getting another test. I would go with testing from private physician if your VA doc is uncooperative. I have a question to add, though. Does anyone know if mycoplasma would be discovered in other blood tests? I have had a ton of blood work done recently, so I'm not sure whether to ask for another test. I've heard that mycoplasma can cause CFS.

Onrope, just hearing your experience is discouraging. He told you to get more sleep? I'd probably lose my shit. I KNOW I can't get enough sleep. It's one of the xxxxxxx reasons I'm seeking treatment!! I thought that rheumatologist were generally the best specialist to see because they encounter alot of fibro, and therefore know how to test for it. I'm still not sure whether what I have is fibro, or Gulf War Syndrome. One thing I haven't mentioned to the doc (didn't think it was relevant, but it's in my records) was that while in Iraq, I got a terrible rash that lasted for about a week. It was everywhere, and it was both itchy and painful. My skin is still pretty xxxxxx (rashes and folliculitis on my sides and legs) but its nothing compared to the other symptoms. I mean how are we supposed to even relay all of this to a doctor in a way that makes sense? Memory and sleep problems, pain, stiffness, rashes, fatigue, headaches... I feel like I'm losing my mind.

Thanks onrope. Good luck to you with your treatment and claim. Strange that we both had low vitamin D. If you're up north as I am, maybe it's the lack of sunlight. Rheumatology called today and told me my appointment was Feb 9th. The etodolac is completely ineffective, and the flexerol helps only slightly with the morning stiffness. Also, I'm not sure if its some sort of flare up, or something else, but the pain and stiffness have been unbearable as of late. Most days I can barely move in the mornings, and it takes some time just to stand up straight and walk normally. And I've been sleeping even less than normal because I wake up to pain before I even try to stand. All I want right now is to get some meds that will actually help.

Sierra, you're right about the cutoff date. Although I served in OIF, and not the Gulf War/Desert Storm, I think the presumptives are the same. My father suffers a number of illnesses from agent orange (including alzheimer's), so I know what you mean. Truth is I should have had this all checked out earlier.

Thanks everyone. Buck, I will definitely try getting the report of the exam after each visit. That sounds like a good habit to get into! The blood workup came back normal (cholesterol, platelets, etc.) with the exception that I was vitamin D deficient. Which explains why I received Vitamin D supplement in the mail without any prior explanation of why I was getting it! Kelly, I registered for the burn pit exposure list, but I haven't heard of any presumptives for it. I signed up for myhealthvet but I can't access the records until I get the premium account verification. And the doc IS mediocre. Seems like she wants to give me pills and get me out the door. I've at least started to be more upfront to the doc about my pain levels, whereas I used to be much more reserved about it. Still waiting to hear about my referral to the rheumatologist.

So after about a year and a half of feeling like shit, I stumbled on the fibromyalgia discussion on this forum. Long story short, I was convinced that I should seek treatment at the VA hospital. I had my first appointment late December. Told the doctor (actually a nurse practitioner) about the constant and widespread pain, stiffness, depression, fatigue, and memory/concentration problems. She didn't seem to be paying much attention as I talked to her, and she even took a long phone call in the middle of my appointment. Then we spent an inordinate amount of time talking about how I should quit using tobacco (I agreed to the nicotine gum just to get the discussion back on track). She brought up arthritis and fibro, and asked me about meds I've tried. I told her I'd tried gabapentin, duexis (800 mg ibuprofin), and advil, none of which did anything for the pain. I got a ton of blood work done at the lab before she sent me away with the gum and a slip for 400mg Ibuprofen. I called several times over the next few weeks inquiring about the blood work, but never heard back. So I returned Friday to see her again. I was in an enormous amount of pain that morning (more than usual), and I think she could see it. She referred me to the rheumatologist, ordered more blood work, and prescribed muscle relaxers and etodolac (arthritis pain medication). The muscle relaxer surprisingly made me feel worse. I'm not sure about the etodolac because it knocks me out before I can feel any improvement with the pain. But I'm at least satisfied that I'll be seeing a specialist in the near future. Just want to thank you guys for sharing your stories and convincing me to get help with this. I'll keep this thread updated with any progress I make.

I agree. It is comforting to know that other veterans are dealing with this, and that perhaps it isn't just in my head. If you don't mind my asking, what did the doctor say when you told him that you've been feeling the symptoms since '93? How did you tell him? That is one thing I am concerned about, is how to explain to a doctor that I've had this pain (and stiffness, headaches, depression etc.) for about 2 years, and haven't sought treatment because I thought it was all in my head. The only reason I started looking for answers is because the symptoms are getting worse. I'm starting to feel like doing ANYTHING results in severe pain and stiffness for days.

Thanks, Pete. I think I will try to talk with my doctor about it first, before I go to the VA. It has definitely caused some relationship problems, but now that she knows I think it will be easier to work through them in the future. Has anyone else tried to keep a daily log of their symptoms? I'm having some trouble with it and wondering if anyone else has tried it. If anyone has, did you show it to your doctor?

I'm still pretty knew to this forum, but I'm grateful for how helpful you guys have been. I feel like I'm losing my mind. I honestly can't remember when the problems started but best guess is around 2 years ago. I did 1 tour in Iraq in 2007-08. I'm currently rated 10% for back injury and 10% for tinnitus. Recently I stumbled upon an article about Gulf War Illness and I'm starting to wonder if the problems I've been having are connected. The worst has been the pain. It is everyday but it moves around. Sometimes it's pretty much everywhere in my back, legs, arms, neck, knees, hips and elbows. Other times it might be just my back and legs, or back and neck etc. It's like a severe throbbing pain, and it's always worse after any sort of activity. I worked on my car one Saturday and I could barely function for the next 2 days from the pain and stiffness. Headaches have also become a regular occurrence On top of that I've had trouble sleeping and always feel like I've barely slept. I always wake up frequently in the night. Depression and anxiety are frequent (but more depression than anxiety). Fatigue is less frequent than pain but definitely noticeable. My memory is slipping (which my wife is kind enough to point out constantly), and I regularly forget what I'm doing (like standing in the family room trying to figure out why the hell I'm in the family room). My left eye twitches uncontrollably at times, and I have persistent red bumps on my thighs and waist. I'm not sure what to do. I am honestly affraid to bring these symptoms up with my doctor. I've been with him for about a year, and I suspect that he won't believe me because I've never mentioned these problems before. Hell, I was even embarassed to tell my wife about the pain. She knows about my back injury, but until last week she didn't know about the rest of it. I've started a log to describe the symptoms day-to-day, but even that has been difficult. What would you guys suggest? It feels like I'm losing my mind.

TiredCoastie, Pete53, and John999, I would like to thank you all for the great information you have taken time to provide me. I also apologize for the time it has taken me to reply. Unfortunately, this has all become moot. I was told this week that my father's name came up on the list for the home, and that my mother accepted (as she had no other choice). If she had declined, it could be years before his name came up again, and they could decline to take him if we had turned them down the first time. I am distraught because I had hoped to have this summer to spend some more time with him, and also because I don't think he needs to be in a home yet. But today, at our Easter dinner, he told my brother-in-law's friend that I was his old coworker from when he worked at a utility company. I told him that I was his son, and he seemed surprised. So, although I am deeply saddened by this, I realize that there is no other way. Again, thank you all for your help. I will need your knowledge again when I appeal my compensation claim in the near future.

Philip, we are going to meet with a VFW rep to discuss the application process. I believe he meets the requirements (although they are confusing as hell). Part of me was hoping that it would be enough to afford keeping him in my parent's home, but at least it is still enough to help a great deal with finances. Stretch, I have heard many stories like that. My takeaway from what you said is that we shouldn't put him in a home, or that a veteran's home is a poor choice. Unfortunately we cannot afford to pay the expense out of pocket. But the VA will pay for almost the entire cost of the veteran's home we chose. Also, the veteran's home my family chose is apparently one of the best. It is a newer facility in Manteno, IL. I feel that I need to explain the situation more, so that you can understand that although we do not want this, there is no other option. I can tell you that my family is heartbroken that it has come to this. When my mother first told my sisters and I that we needed to start looking into a home for him, we were all heartbroken. I was angry and disgusted with all of them at first. I couldn't even understand why they would consider it. But I started to see, as time progressed, the horrible truth about Alzheimer's. He is becoming so forgetful and confused that he will soon become a danger to himself. They call it the "long goodbye." Day after day we watch him lose himself, and the memories of us and who we are. Even worse is the fact that Alzheimer's victims eventually become violent and uncontrollable. Although my father has not reached that point yet, he is medicated in order to calm him down, and gets extremely angry even on the meds. I hope that the home we have chosen will take good care of him, and if I learn that they've done otherwise heads will xxxxxxx roll. I truly dread the day we have to drive there, and leave him behind.

Hello all, My father, a Vietnam veteran, is 100% disabled (permanent and total) from agent orange exposure, which resulted in a severely weakened immune system. In about 2010 he was diagnosed with Alzheimer's, and it has progressed rapidly. He is very confused, and we currently have him on a waiting list for a veterans only home (I would do anything, and I mean ANYTHING to prevent this, but it is clear now that he can't stay at home much longer). Although the VA will pay the cost for the home, he may not get in for 6 months or so and the financial situation isn't good. I am wondering if he may qualify for Aid and Attendance. While he is not bedridden, he can not be left alone for long, and needs a great deal of help and will require more assistance as time goes on. I would greatly appreciate any advice you folks can provide. Can he qualify for Aid and Attendance when the Alzheimer's isn't service connected, although it damn well should be? How is the Aid and Attendance compensation rated? Would it come close to paying for someone to attend to him full time in his home? I really know nothing about this, and good explanations seem hard to come by.

rmoreno, I will definitely look into the WWP. I've looked at the applicable rating schedules, I'm just confused as to how they are applied. When I get my results from the x-ray and MRI, if the problem is diagnosed, I will find a doctor to provide the IMO and an advocate to help me figure out the rest. I say "diagnosed" because the VA's diagnosis of "back strain" seems incredibly broad and somewhat ridiculous. Thanks for the advice! I have already learned a lot on this forum thanks to you folks.

rmoreno, after an examination by my private physician I was scheduled to get an MRI of my thoracic spine. Just heard today that they need me to get an x-ray first because my insurance company requires it. I had one in 2010 at the VA hospital, and the doctor essentially said that I was fine. When I told my private physician that he had a disturbed look on his face and said "well obviously you're not fine if you're still in pain." It was great to hear him say that, because every time I saw a VA doctor they made me feel like a lying piece of shit, which is partly why I waited 6 years after my injury to file a claim. My concern is that they rate back injuries on range of motion, and my understanding is that the thoracic spine doesn't move much so it doesn't effect range of motion. Not to mention the fact that range of motion doesn't consider what movements are actually painful. I think I need to get an advocate (if thats what they call it) through the DAV or VFW. I really don't understand what is needed to appeal the rating, and how to get a good IME/IMO. Even after researching a lot on this forum, I'm still quite confused.