Finally Went To Va About Fibromyalgia

[fortitudine]

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.

[onrope]

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.

Yep...all the same. I know exactly how your feeling. I had a rheumatology exam. The doctor said I needed to get more sleep. Told me I didn't have rheumatoid arthritis. Stated there was no inflammation in the joints and blood work didnt indicate anything significant to point to inflammation. He just said do stretches and get more sleep. It was pretty discouraging. My PCP prescribed me Meloxicam. It's an anti-inflammatory and does nothing.

Hopefully you'll have better luck. I'm confident that discovering the right treatment and therapy will be key.

[fortitudine]

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.

Edited January 24, 2015 by fortitudine

[k5one]

I have some experience with this. I am a Gulf War/Desert Shield/Desert Storm vet. I have been having problems for about 20 years. I would recommend that you see a private physician, if that is an option. At the first appointment explain that you are a vet, and would like to get his help with diagnosis, as well as his opinion of whether or not it is service related. Take DBQ's with you and explain that you need them completed by him, after he decides on a diagnosis. Some private docs, are willing some not, so don't waste your time/money with a doc that is not willing to do the paperwork.

Just a thought, and you are the only one who can really make this decision, because you are the one who knows your symptoms. Gulf war vets, anytime from Desert shield to current, fall under presumptive for Chronic Fatigue Syndrome, Fibromyalgia, and Irritable Bowel Syndrome. Chronic Fatigue Syndrome and Fibromyalgia are very similar in symptoms. CFS will pay 100%, while Fibromyalgia will only pay 40%. A good private physician will take the time to explain the symptoms and make sure you understand your symptoms. You may have CFS instead of, or as well as Fibromayalgia, VA recognizes both, and they are individual so you an get rated for both individually. IBS is a symptom of Fybromyalgia and is also rateable upt to 30% max. So in best circumstances you could get rated CFS 100%, Fibro 40%, and IBS 30%. The VA physician is probably not going to be willing to do as much work for you as a good private physician.

I am seeing a lot of success with Gulf war claims on the forums, and in reading VBA appeals, but you must have the diagnosis, nexxus letter and DBQ's.

[onrope]

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.

Well here is where my claim may be slightly different than others. I had the referral to the rheumatologist. Did the appointment and all and received his recommendation. I could not get him to tell me any other cause of the joint and muscle pain other than lack of sleep. So I had no diagnosis of fibro at that point.

I have a C&P exam. I'm asked about the muscle and joint pain. That's where I get diagnosed for fibro. During the C&P. Which goes beyond my thinking that you have to have a DX before a claim is filed. The same thing happened for my IBS claim. But all was done by the same examiner.

[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.

[k5one]

Are you able to see a private physician. If so skip the VA, and find a private physician. Don't wait for the VA, unless it is your only option. You know you have the problems, find a private physician willing to complete the paperwork, and get it completed.