Symptoms
Veterans describe noticing when something first went wrong, how symptoms progressed over time, and the specific types of GWI symptoms they experienced.
Symptom Onset and When Something First Felt Wrong
Some Veterans experienced a rapid onset of acute illness during deployment or soon upon their return home. Initial acute symptoms varied, but some included vomiting, diarrhea, cough, fever, chills, night sweats, and overall not feeling well. Some sought military medical treatment for these acute symptoms during deployment or soon after returning home. At the time, Veterans often believed their illness was temporary and related to dehydration, infectious illness, or the various environmental hazards and exposures experienced during deployment.
After returning home, Shannon began experiencing frightening sensations while driving.
After returning home, Shannon began experiencing frightening sensations while driving.
I started noticing probably a couple months, maybe a month before we left that I was having issues with fatigue and just overall not feeling well. And then it wasn’t until I came home that I started having, well cognitive I guess issues. Like I would forget where I was going and I’d have to ask my son who was 5 at the time, you know and we’d have to pull off the road and, where are we going? And he’d have to say, don’t you remember Mommy? And then there were, that’s when I started having like these sensations where I’d be driving and then all of a sudden it would feel like I was driving sideways. So it was kind of scary. And that was just, that was pretty much within a couple months or so of coming home. And then, just as things evolved, of course I always had the fatigue, then I started getting the joint pain and then just the overall not feeling well. So, but I have gone up and down as far as my symptoms, there’s certain things that I, as I’ve gotten older I’m finetuning my triggers. But it’s really difficult for family members, of course I’m a single parent with an 18 year-old daughter. It’s really difficult for family members to understand.
Joseph and his fellow service members showed symptoms immediately after taking pills.
Joseph and his fellow service members showed symptoms immediately after taking pills.
After they gave us the pills for anthrax, I had pus coming out of my armpits. Yeah, something—yeah. And that was from the pills. They didn’t tell us what it was. They just lined us up. Here, take these pills. Didn’t give us a choice. It was ordered. You take them pills. Didn’t see no officers or anybody else do it, higher up the chains, but… I don’t appreciate being a guinea pig. That’s the first time I noticed something wrong—was seriously wrong. We all had fevers. We were all sick. All our lymph nodes and everything was puffed up. Yet they kept giving us the pills. That’s the first time I noticed something was wrong.
“Edgar” started experiencing symptoms while deployed but didn't think much of them until looking back.
“Edgar” started experiencing symptoms while deployed but didn't think much of them until looking back.
So looking back, first thing I noticed that happened to me was actually when I wasn’t over there, in the middle, we’re out in the sea, out at the very tip of the Gulf, and I was getting sick. And all of a sudden I was coming down with night sweats, really bad fever, sweating and I had blood in my urine. And this went on, persisted for a week you know I didn’t think much of it like I said maybe whatever I’ll fight it off. But it finally got to the point where, I finally went over there into my medical, guy goes, hey don’t bother me it’s Sunday. But he says, you know he says, this takes, give you this medication and we’ll see what happens. So anyway, I did get through it, it was about a week. And they gave me, they told me a couple things, anyway and I got, when I finally got back like a month later they did a full scope analysis where they did a workup on my kidney’s and my whole tract, they couldn’t find anything wrong. So, and they said, maybe it was kidney stones. And I says, no I mean I would have known it was kidney stones because the first thing is, it’s like painful when you try to urinate, well I didn’t have any of that. Says, well you know maybe you just were super dehydrated. I said, okay. So I didn’t think anything of it. So that was my first incident. And then, when I got back I didn’t really notice it, but I was a little bit more sensitive to things if you could say, I thought but I had a lot of dynamics going on. I’d just come back from over there, I was, had other family issues this was before I was married to my current wife [wife’s name redacted]. And I was in the middle of a transition where I was actually leaving from another duty station to another so I didn’t think much of it. But, I started recalling that I had extra sensitivity, mood swings, other ailments started to change the dynamics, started to change where I just, you know didn’t think much of them because you know I was a young man then and it’s like I just, okay just get through it. You know I was always that type of person.
Debra's first sign was ringworm-like rashes that appeared all over her skin.
Debra's first sign was ringworm-like rashes that appeared all over her skin.
I was working two jobs trying to support us and I was getting these little marks on my, all over my skin. I mean, they look almost like ringworm. I didn’t know what they were. And that’s what took me to the VA the first time. And they just said, “well it’s just a rash.” Hmm, okay. Yeah. Okay. But, I don’t, I just don’t. That was like in ’96 so I don't think that there was that much information out yet. But, so, all of this stuff was going on between, at that time, in that timeframe that I, 'cuz that’s when my first visit to the VA was…The ickys on my feet, and my hands, and I didn’t have it on my face, yet. But and just the flu-like, it always felt like I had the flu. When I woke up I was tired, still am to this day, really. I never felt like I could sleep enough.
When Jean experienced symptoms like fatigue while in theater, she associated them with working long hours, but found that they persisted even as her schedule returned to normal.
Slow Deterioration of Physical Fitness and Health
Some Veterans' symptoms took longer to appear. Often these symptoms were initially ignored or discounted for many years as Veterans continued to “power through” with the distractions of their busy lives. Many shared how their impeccable health at the time of GWI onset was a buffer delaying their recognition of the effects of their illness. “Santos” explained that in his 20s, he began noticing a “slow deterioration from that time all way until now…it’s like little bits of you fall off until there’s almost nothing left.”
While “Edgar” has always been the kind of person that pushes through pain, the amount of pain they experienced increased over time.
While “Edgar” has always been the kind of person that pushes through pain, the amount of pain they experienced increased over time.
I would work out six, five to six times a day, at least one hour to two hours a day. I was that type of person, push through my pain no matter what. And, I noticed that I was starting to get a lot more muscle pains, joint pains, back pains, neck pains. Just different, small stuff. And, you know as I said you know I just shook it off, it’s just normal stuff. It’s like you know you get a scratch, you get up and you move.
Jeremy was able to “push through” the activities of daily life for many years after returning home, but eventually, his symptoms caught up to him.
Jeremy was able to “push through” the activities of daily life for many years after returning home, but eventually, his symptoms caught up to him.
And it’s just been frustrating. And I think that, you know, for the first 25, 30 years after I got out of the service, you know, I just overcame and adapted and pushed through everything. It’s just what I’ve always done. And I think I’ve gotten to the point now where I’m not able to do that anymore and I’m really being affected the last few years now with trying to comprehend and get through the daily activities. But before I didn’t have the body issues, so I was able to compensate. But now that I’ve got the body issues and the other issues, mentally, that it’s becoming the perfect storm. So, I never did claim anything with the VA. I figured, hey, you know, I’m not gonna do that. There’s other people that need it more than me.
Andrew’s symptoms have been getting steadily worse.
Andrew’s symptoms have been getting steadily worse.
Andrew: Headaches, like crazy. Can’t sleep. Skin lesions like crazy. I’ve had stuff break out on me that, like something popped out of me in my armpits all over my body. I walked into an ER with a lesion on my stomach and the doc didn’t even want to touch me looked at me like I had 4 eyes. I went blind by 1996, I had to have corrective surgery. I was lucky I was a good candidate so they put Imtax in my eyes. So I was legally blind by 96. I shot expert in marine corp. almost my entire career. Then I’m legally blind and can barely see three years later. So that was a little bit of a shocker. Pain, everywhere, always in pain. They just diagnosed me with fibromyalgia. They ran test after test to make sure it wasn’t anything else. I’ve had DNA tests. Geeze what test haven’t I had and had to pay for. I’ve paid thousands, probably upwards of 40 thousand dollars out of my own pocket. Trying to have all these tests done on myself, trying to figure it out. I’ve taken vitamins, minerals. I’ve been on vitamin D at a pretty good dose, for years and years and years. Because of the tests that I had done. So I had a nutritionist come up with a personalized vitamin regiment to try to help keep me, you know, that also meant making sure I maintained a good nutrition plan. Means I didn’t get to party, party, party like everybody else. I had to maintain my weight because I would feel it. I would really, really feel it. So.. just hurts everywhere. Body aches all the time. Joints hurt like crazy.
Interviewer: When you have body aches, you said all over, are there particular places that you tend to feel more pain?
Andrew: Major joints, like in your hips. God it hurts to sleep sometimes, maybe that’s why I can’t sleep. You know, you lay on your side and your hips just hurt so bad you have to keep twisting around. Knees, joints, it just seems like inflammation is everywhere. I tested real high on inflammation on some of my blood tests, its like its running ramped through my body.
Interviewer: Are there any other symptoms that you have?
Andrew: that’s all I can think of off the top of my head, you know. Mentally it screwed with me. For all the dedication that I have put into my health, I should be in elite shape. I mean I’ve dieted and disciplined and stayed in the gym like some kind of elite triathlete almost. But I don’t have the body to show for it. I feel like I’m an 80 year old man.
Symptom Experiences and Descriptions
Participants described a wide range of symptoms that they attributed to GWI. These symptoms affected almost all systems of the body. Some of the most common symptoms included exhaustion and fatigue, various types of pain, difficulties with thinking and memory, mood changes, as well as diarrhea, nausea, and vomiting. Other symptoms included persistent coughs and respiratory infections, rashes, headaches, and increased sensitivity to certain smells and light.
Exhaustion and lack of energy worsened by physical activity
Everyone we spoke with described being tired all the time, feeling exhausted-- particularly after physical activity, and lacking physical vigor. Some Veterans described not being able to get out of bed, or having to sleep during the day. Greg noted wanting to lay back down and take a nap immediately upon wakening, and “Santos” said after mild exertion it felt as if he’d been “run over by a steam roller.” For most, feeling tired and achy seemed to worsen the day after physical activity, though for others it was a near constant feeling.
“Santos” describes how he feels the day after exercising.
“Santos” describes how he feels the day after exercising.
Something he noticed right after Gulf was chronic fatigue: “It’s like if you haven’t gone to the gym in a year, and then one day… you work out really, really, really hard, what are you going to feel like the next day? I mean every day. It’s miserable.” A 2-mile run felt like his “body just got run over by a steamroller,” and taking out the garbage is a struggle.
Peter's fatigue kept him from performing his duties as a chef.
Peter's fatigue kept him from performing his duties as a chef.
Yeah, I had to quit working. I was a chef, which is a tremendously physically demanding job, and I was getting to the point where I was coming in, and I was literally just having to go sit down in a chair in the back of the dining room before we opened, and I would just fall asleep. Fatigue was hitting me hard. I would be so physically sore, and my gut would be acting up so much that I couldn’t stay. I had to start leaving work all the time, so eventually I just had to stop working. It's just like I just have no energy. The desire is there. It feels like I’m wearing a lead suit, and I just can’t move. It's horrible.
Sleep difficulties
In addition to managing chronic fatigue, Veterans shared difficulties falling and staying asleep.
Brian describes his “erratic” sleep schedule.
Brian describes his “erratic” sleep schedule.
Lately, I've been going to sleep super early, but I can’t, I say super early, probably around 9 o'clock. And, I don’t know. I’m a super-duper light sleeper anymore. Anything wakes me up. If the dog walks across the living room or something, I can hear it, and I'll just wake up, and then my mind will start racing, and it's hard to get back to sleep. And then if I have to get up to go pee at like 3 in the morning, my alarm usually goes off at like 5:30, so I just can’t get back to sleep. I'll just lay there awake, and it's just an erratic sleep pattern. It's exhausting sometimes.
Mike reflects on his sleep patterns.
Mike reflects on his sleep patterns.
I continued working in the civilian sector for as long as possible. I lasted another three years before I could no longer work on a normal basis. More than half the time, I could not function. Memory problems, body and joint pain, headaches, dizziness, confusion, major respiratory problems, stomach cramping, IBS, no sleep, and when I say no sleep, I mean no sleep. I mean, I did not sleep. If I fell asleep for 45 minutes, I’d pop up. An hour, I’d pop up. I could never sleep unless, at that time I was still drinking, unless I downed a bottle of Jim Beam and made myself pass out. That was about the only way I got sleep. One of the biggest things that I noticed about it, it wouldn't matter. Even if I got an hour of sleep, or an hour and a half of sleep, or eight hours, when I’d wake up, my sheets, my blanket, myself, my wife, I mean, I would soak the bed literally. I mean, that's how much sweat and whatever. My body was trying to get rid of the toxins or whatever. And, granted, at the time, drinking probably was partial, you know, some of it, but I still do it to this day, but not near to the extent of what it was. I mean, but I still wake up with some severe, I’d say maybe three to four times a month where I got a really good night's sleep, or just a couple hours, three or four hours, then I'll wake up, and I’m wet. So it hasn't gone away, but it has gotten better.
Pain in many forms
Veterans commonly described many different kinds of pain. Chronic and severe joint pain, nerve pain, random shooting pain, and muscle spasms were common. These were described as “sensations of stabbing,” or burning, throbbing throughout the body. “Santos,” Shannon, and many others, described pain being localized in the joints. Greg said “I hurt constantly all over,” and “Santos” said “it would hurt so bad that I could barely walk the next day.” For some, pain did not have a predictable pattern and was unrelenting, even with treatment. Click here to hear more about treatments.
The nerve pain in Roy's legs got so bad that all he could do was lay there and cry.
The nerve pain in Roy's legs got so bad that all he could do was lay there and cry.
I have this pain. What do I do? What do I do? At first, I could push that off as my legs falling asleep. And then it got to the point that it was like, they were numb. And then it was just like, one night, I was laying in bed, and she can attest to this. I was laying there, I was crying. I was in so much pain, I hurt. So I went to my doctor, explained—Hey, this here’s what’s going on. I got—you know, I explained. He said—It sounds like neuropathy to me. And he said—You’re explaining it just perfectly, it’s like a sock, like you got pins and needles, fire shooting through your feet. And I said, that’s exactly it.
“There’s never any pattern” to “Santos” intense pain.
“There’s never any pattern” to “Santos” intense pain.
It just got too physically painful. I mean physically painful on my legs, on my joints. Physically painful while I’m actually physically exercising, but then afterwards, it would hurt so bad that I could barely walk the next day. Literally, I could barely walk the next day…Sometimes I can be sitting, and I can just feel the pain shooting down from my neck into my shoulders, both shoulders at the same time. Two hours later, it's my right knee. It's never, there's never any pattern to it. It's one day it's the knees. Some days it's the knees and the elbows. Some days it's nothing. Some days it's my back is killing me or my ankles. They're so sore, and I almost, I can’t walk.
Peter describes the bad muscle spasms he experiences.
Peter describes the bad muscle spasms he experiences.
Muscle spasms can be so bad. For example, I was in the shower just a few days ago, and I reached around to wash the small of my back, and all of the muscles on this side decided to just cramp up all at once, and I could
hardly breathe. I had to shut the shower off and get out wet and dripping and ended up laying on the floor trying to get the muscles to relax again…. It was horrible. And that's a regular thing. I have the chronic pain. I now am sensitized to pain, so bumping my elbow against the door just sends massive amounts of pain shooting up my arm, which is an unfortunate side effect of chronic pain.
Pain and fatigue
Pain and fatigue often occurred together. “Roger” and Jean discussed their pain patterns, and how fatigue and pain are worsened by physical activity.
While “Roger’s” fatigue comes and goes, his pain continues to worsen as time goes on.
While “Roger’s” fatigue comes and goes, his pain continues to worsen as time goes on.
Cuz I’d take my boots off and turn my ankles like this because the bottom of my feet just a nonstop relentless burning ache that the more I’m standing the more it goes up my legs to my knees. And that’s going to be an ongoing issue to this very day. It’s just that at that time it was still new to me, I’m like, “I don't know, my leg’s killing me.” And of course fighting the fatigue. I didn’t really have, I didn’t have the problem with the rashes anymore or the diarrhea, but definitely the fatigue and the pain. You know the fatigue it comes and it goes, but the pain just has progressively gotten worse over the years.
Jean describes changes, big and small, she has to make throughout the day just to save energy.
Jean describes changes, big and small, she has to make throughout the day just to save energy.
Well, I couldn’t do any kind of exercise because my muscles would hurt so bad and I would become so fatigued that I just couldn’t function. I can remember times when, I mean, I would find every shortcut you could think of so that I didn't have to do any more than the bare minimum. And I’m talking things like, I’m not going to take a shower today because it takes too much energy. I’m not going to get up at 8 o'clock in the morning because I’m still tired. I’m going to sleep longer or just lay here and read or something because I don't feel like moving. Or I've gone to the grocery store—can I get all the bags in my arms and make it to the house in one trip, so I don't have to make a second trip? Can I find a way to get there without going up four steps? All these kind of things that you try to, you know, I’m going to park as close as I can to the store because I don't want to have to walk as far. There's a multitude of things that I would do to try to not have to exert any energy that I didn't have. I used to ride horses, and I would hike, and I would bike, and I would rollerblade and all these. I was a very, very active person, and I lost all of that. It all went away. I had a relationship while I was in the service and lost that because I was having trouble functioning. Well, there's more issues there. Both of us had some trouble functioning. But, you know, a lot of it had to do with him not understanding the pain that I was in, and the fatigue, so that affected our relationship. But there was, I mean, and then of course the depression, you know. It's a downward spiral. You don't want to do anything because you don't feel like it, and you can't do anything because it hurts so bad, so then you get more depressed, and you do even less, and that was my life for a long time.
Difficulty with thinking and memory
Veterans described a wide range of challenges related to their thinking and memory. This included forgetting words mid-sentence, forgetting what they were doing in the moment, or “having my mind going blank in middle of a sentence.” These experiences were embarrassing and frustrating. Heather experienced “brain fog” and many reported slowed thinking. Shannon described forgetting where she was going when driving and having difficulty finding words to describe things, and Andrew talked about over-dependence on calendars.
Andrew relies heavily on calendars, planners, and checklists due to his memory difficulties.
Andrew relies heavily on calendars, planners, and checklists due to his memory difficulties.
I knew I was having problems in like 92 or 93, where I was really, really sharp, as I said before. As a first year in college, I completed calculus, chemistry and advanced comp as my first classes after the matriculation test; basically they tested where I should enter into college, and that is where I started. And I forget where I put my keys. I started carrying a day planner, I’ve carried a Franklin Day planner since 1993. I have to write everything down, or I forget to do it. So, my whole life is, write it down the moment someone tells me to do something. iPhones have been a Godsend to me because I can tell Siri to remind me on a certain day to do stuff. And I live off of my calendars, checklists, and stuff like that. Otherwise I would be a bloody mess. Before that it was a list, list, list, day planner, day planner, day planner, I’m a Franklin planner addict. Otherwise I would have been probably a bum on the street because I can’t remember squat. I just really struggled. And the test confirmed it that I took. And they are standardized tests they aren’t like some joke test, they are still medically accepted even from 2010. They still are using the same tests, I have copies of them. It was pathetic how bad I did on them. And I didn’t used to be that way.
Jean went from being a "walking phonebook" to forgetting what she was doing in the middle of a task.
Jean went from being a "walking phonebook" to forgetting what she was doing in the middle of a task.
So, the migraines, and then the short-term memory loss was really scary, severe. That was another thing. I don't know if I mentioned that part in with the fatigue and kind of like a brain fog, but the short-term memory loss was scary. I mean, I could be sitting at the panel at the airplane and be looking at the fuel panel, watching the fuel transfer or something, and like space out and totally forget what I was doing while I was sitting right there with it in front of me. That scared me a little bit. That was one of the things that I realized that I really had to do something to fix what was going on, and just being not able to focus as well. And I was a walking phonebook before I went in the service as far as my memory. Like, if somebody would give me a phone number, I would remember it. And most of my family at the time, of course, that was way back before cell phones and having the number at your hand. But they would say, oh, what's so-and-so's number, and I would rattle it off to them. After all of this, I couldn’t even remember a four-digit combination half the time. My memory was just garbage. And I still struggle with some of that. It's not as bad as it was, but I do still struggle with the memory stuff sometimes.
Mood changes, depression, anger, and anxiety
Some Veterans felt like loss of health and function over time led to anger, depression, anxiety, or general “moodiness.” Some also noted general difficulty transitioning home, re-integrating into civilian and family life following deployment, which also was perceived to exacerbate mood changes. Several participants noted they had been diagnosed with and sought treatment for mental health conditions. To hear more about transitioning home and out processing, please click here. To hear more about transitioning home, click here. To hear more about treatments for mental health conditions, please click here.
“Edgar” started experiencing more mood changes alongside the development of other symptoms.
“Edgar” started experiencing more mood changes alongside the development of other symptoms.
So, life continued on, had more tribulations, started more aches and pains, more this, more issues with other you know just maybe I just didn’t, you know wasn’t adjusting well to [location redacted], I was thinking. Started having more sinus type issues, and just more and, just more mood issues.
Roy dealt with feelings of uselessness that led him to considering suicide.
Roy dealt with feelings of uselessness that led him to considering suicide.
I’m starting to hurt more, back’s hurting, you know, I don’t really want to do the things that she needs done and all that good stuff. It was just—it became a drag, and everything. I started getting depressed, anxiety, felt like I was useless, a piece of crap. Still feel that way, to this day, because I don’t really produce anything besides my retirement and my disability. And all that. And so that was a good portion of it. I promised my wife, you know—Sus, I won’t come home—you won’t come home to a mess. I’m not going to off myself, I’m not going to be that greedy. Because I honestly had to think about suicide and stuff. My kids. What would happen to my kids if I left them all behind, and everything like that. I really, truly did. I had to think about being selfish like that, because it would have been easy to—because what’s left for me?
Uncertainty about her illness contributed to Jean's feelings of self-doubt and depression.
Uncertainty about her illness contributed to Jean's feelings of self-doubt and depression.
It leads you to doubt yourself, and I think it contributed to the depression too, because you think that there's something wrong, but then you think, well, nobody thinks that there's anything wrong, so it must be me, so I just don't know how to get out of this spiral. And I’m still hurting and I’m still in pain and I still can't sleep. Did I do this to myself? It's kind of, it's hard when you don't have somebody to say okay, yeah, there is something wrong with you, and let's see what we can do to figure it out.
Gastrointestinal problems
Some Veterans had gastrointestinal problems. Chronic diarrhea and abdominal pain disrupted jobs and relationships. Dietary sensitivity to certain foods was also described by participants. Quite a few, such as Brain, Peter, Shawn, “Doug,” “Edgar,” and Toby, even required abdominal surgeries.
Brian underwent six abdominal surgeries and still struggles with constant bowel problems.
Brian underwent six abdominal surgeries and still struggles with constant bowel problems.
But I started having stomach issues. I've had six abdominal surgeries since, starting with an appendectomy and then a couple of obstructions, and my stomach has just never been right. I don’t know that I've had like a solid bowel movement in 20-something years, really. Yeah. The first time was the appendectomy, the appendicitis… But then I had the problem of having to get opened up and cleaned out, and, yeah. After that, I've had, well, I had two more resections of the bowel. I don’t know if because of blockages or because of lack of blood flow to my intestinal tract. I've had hernias repaired as well, and just overall my stomach has just been a wreck.
Toby suffers from incontinence that keeps him from leaving the house.
Toby suffers from incontinence that keeps him from leaving the house.
Toby: Ok, stomach, I would say it was brought on about a year after. I had noticed it was bad, but I didn’t know how bad. And it just manifested itself about a year after or so, afterwards. And it’ gotten progressively worse over the years. To the point where I have incontinence, a lot of accidents. and it’s really, it could be debilitating or incapacitating, if you want to call it that. Because sometimes I just cant go anywhere, I have to stay home, you know?
Interviewer: Toby can you tell me more about the stomach symptoms, you mentioned incontinence and I’m wondering if there are other symptoms along with it, like pain or discomfort or cramping?
Toby: Yes cramping. Cramping. Nausea. A lot of nausea. I can not eat anything, not have anything in my stomach and I can still have nausea and cramping. Like right now. My stomach hurts. Lots of gas, I live with gas. They call me ‘Fartacus’, that’s my nickname here at the house. ‘Fartacus’, you know like the Spartacus.
Less Common Symptoms
Less common symptoms discussed by participants included respiratory ailments, skin rashes, headaches, allergies or other sensitivities, and neurological changes. We delve into each of these topics below.
Respiratory problems
Some individuals, like Heather and Jesse, reported productive and persistent coughs, loss of lung function, or chronic respiratory infections.
Productive cough and fatigue were some of Heather's primary symptoms.
Productive cough and fatigue were some of Heather's primary symptoms.
I came down with pneumonia in my left lung, same lung. And that finally you know they saw, I went to the ER, and they saw the pneumonia in my left lung. And, gave me the antibiotics, and bedrest, and all that stuff. And, just I finally got over that, when the sniper academy started. So I was able to go to that. But, just the same stuff, chronic fatigue, coughing, bringing up the stuff, the pain, that I had way back when we first got back in my shoulder, below my shoulder blades or under the area of the shoulder blades, the neck. All these things just continued, and I finally went back to the VA, in probably maybe 2004, and I told the doctor at that time that, I’m bringing up all this stuff, all the time, nobody seems to know what it is, what can be done about it. And then she put me on Asmanex. And so the Asmanex, I guess cut back on the inflammation in the lungs, so I stopped bringing as much stuff up. It was really, really reduced. But they never did anything more than x-rays except for the time that I had pneumonia nothing ever showed up on the x-rays. So, this continues and I had several sick days throughout the year, but I was a good cop and they knew I had served. And so they were always understanding of that. But it was usually respiratory related stuff and fatigue.
Jesse grapples with the fact that his problems are invisible on the outside.
Jesse grapples with the fact that his problems are invisible on the outside.
You know, it's real depressing because then, and I realize that I can't do it anymore, and then that is real depressing because you just look, I look in a mirror and I’m like, I look fine, right? But everything, all my problems are on the inside. My lungs are horribly bad, and I just, I mean, my other thing too where I shake, and I can't think correctly. So, everything on me is on the inside.
Rashes, headaches, or sensitivity to light and smells
Most Veterans had other chronic conditions.
Rashes and skin symptoms
Some participants experienced strange rashes, skin irritation, itching, cracked and blistered skin.
Brian never received an explanation for his painful rashes.
Brian never received an explanation for his painful rashes.
I've been all through the VA, and there's no rhyme or reason, there’s no allergic reaction to food… I mean I would love nothing more than to just get rid of my rashes and never have another rash. It’s so frustrating, and I have literally sat up in bed and just started crying because I was so miserable and couldn’t sleep because I was itching and just, it will literally like drive you insane.
“Doug” has a lifetime prescription for medication to help with the skin symptoms that appeared after Desert Storm.
“Doug” has a lifetime prescription for medication to help with the skin symptoms that appeared after Desert Storm.
Well, when I was in Desert Storm, I had some shots and stuff, and I think it made my preexisting dermatitis and psoriasis stuff worse. I would have the issues like in between the connective areas like the elbow, shoulder, and that's where I think I first started to experience adenitis. It's like hard, it's like pimples that turn hard in certain areas where your glands are, and they kind of stay there, and they usually dissipate on their own after a while. But I started seeing some of them in between the groin, the thigh, the neck, and the forehead. So I just recently went in for dermatology, and they gave me other stuff for me…these right here, like, spots… That would come in, and they would be, they wouldn't be like pimples. They would be hard and painful, and then it would go away on its own after a certain amount of time. But, yeah, they started giving me some more medication there because right now I’m on a lifetime prescription of minocycline and doxycycline.
Andrew gets skin lesions so bad that they even scare doctors.
Andrew gets skin lesions so bad that they even scare doctors.
Skin lesions like crazy. I’ve had stuff break out on me that, like something popped out of me in my armpits all over my body. I walked into an ER with a lesion on my stomach and the doc didn’t even want to touch me looked at me like I had 4 eyes.
Neurologic symptoms
Some of the Veterans experienced headaches, numbness and tingling in their extremities, intermittent paralysis, and even stroke. Shawn had headaches so bad he could “hardly get out of bed some days.” “Edgar” described his migraines: “One time I actually went to the hospital 'cuz because I had this migraine for three straight days, I felt like I was going nuts. But it was because I was having a combination of sinus headache, migraine, clustered at all at once.”
Shawn experiences “weird” nerve sensations like electrical zaps and warm spots.
Shawn experiences “weird” nerve sensations like electrical zaps and warm spots.
Along with the headaches that started flaring up, a lot more nerve pain. Where before when I first got out it had been isolated, pretty much my hands, the nerve pain now will just hit me, and I've had the weirdest sensations. It actually felt like an electrical, like I just can picture a lightning bolt like the ones you draw, zigzag kind of like that going through the middle of my head. It's not a headache. It feels like it's literally in the middle of my brain. I get these sensations on my extremities, and they tend to be the same. How it feels in one spot, it always feels the same on that spot, but a different spot will be different. I get, on my right shin, I get a heat sensation. It feels like there's a heater right next to my leg. It doesn’t burn, but it's very warm. My left side, I have two general spots where it feels like I've got a rash, where it hurts even with clothing to touch it, and it will flare up. There's no rash. There's no sign. No swelling. It usually lasts for about a week or so. It actually hurts to walk when that's going on, and then it goes away. And I'll get, all of a sudden I'll start feeling like I’m getting stung by bees.
Andrew had an unexplained stroke.
Andrew had an unexplained stroke.
Then boom, I had a stroke. Don’t know why. Nobody can tell me why. So, it’s kind of a little crazy. I just woke up and couldn’t walk. I had to figure that out. I don’t smoke, I stay as healthy as I can. Still, nobody can tell me why, and that’s where I’m at. I’m here today, about a year later. But I figured out how to walk. So that’s kind of the overall on health. I don’t know what else to throw into it, other than I can talk to you about tests and everything else that I’ve gone through. I’ve been through every test known to man. VA tested everything thinking that it was my heart, it’s not my heart. They run test after test. I lost 30% in my cerebellum in the stroke, so and that seems to be where Persian Gulf War Vets seem to be affected, is in the cerebellum. I read up on a bunch of the studies, and that seems to be where we get hit. I guess that’s just, I guess we are more likely to have strokes. I went blind by 1996, I had to have corrective surgery. I was lucky I was a good candidate so they put imtax in my eyes. So I was legally blind by 96. I shot expert in The Marine Corp. almost my entire career. Then I’m legally blind and can barely see three years later. So that was a little bit of a shocker. Pain, everywhere, always in pain. They just diagnosed me with fibromyalgia.
“Edgar’s” first sign that something was wrong was brief bouts of paralysis.
“Edgar’s” first sign that something was wrong was brief bouts of paralysis.
And then the one thing that really stood out, which was kind of really freaked me out was a couple times I would feel like my body was shutting down. I would walk and I’d feel paralyzed parts of my body would feel paralyzed. Like I couldn’t lift my leg, it was feeling like, I felt like I was like in a time machine sometime. Felt like everything was just slowing down, and shutting down. It wouldn’t last long, it last a couple minutes and then I would just like, okay well I just something my body’s just going through. So, that was my first really indicator that maybe I should have took more attention, paid it more attention to but I was the type of person that shook of stuff and just kept on going
Heightened sensitivity to smells
Some Veterans experienced what they described as “chemical sensitivity” or severe allergies to medications. In addition, several noted reactivity to certain scents (e.g., cleaning products, fragrances) which for Rick and Heather, among others, triggered headaches, skin welts, and in cases such as Mike’s, fainting.
Rick gets an instant headache from certain smells.
Rick gets an instant headache from certain smells.
I know unequivocally, without a doubt is that upon return since smelling certain things gave me an immediate headache. And the headache was unusual, different than any other headache I had. It’s almost like somebody lays a hot rag, a hot washcloth over my head, and it would almost feel like it covers my head and it’s instant.
The smell of smoke sets off migraines for “Edgar.”
The smell of smoke sets off migraines for “Edgar.”
Anything I smell that’s burning or fire or smoke or electrical fire I instantly get migraines from it. But this started to get each shot, started to feel like it physically made something different going on with it, it just, my body wasn’t reacting like it should. But again, I didn’t question anything, you know? And I started to go through it, as I said I started, and then I started to have a lot more muscle issues, more tension, more loss control, more like less of control. I would, like body twitching and stuff, start having tingling, numbness started happening. Just different neuromuscular type of behaviors, like twitching, shaking of my leg. I was sweating a lot more. I think I was, also discoloration on my clothes, my sheets, more mood swings.
After receiving the anthrax vaccine, Jean started getting headaches triggered by chemical smells like laundry detergent.
Veterans Make Sense of How Symptoms are Related to Deployment
“Doug” sees many factors that could have contributed to illness, from burn pits to contaminated water.
“Doug” sees many factors that could have contributed to illness, from burn pits to contaminated water.
We came into contact with a lot of equipment, munitions, potential radioactive material, and material that was being burned all the time too. We had like burn pits and all that, so all those things may have contributed to the illness as well. There was a lot of airborne viruses that I know pretty much every time I would go into theater in those particular areas like Iraq, Afghanistan, and Saudi Arabia, it would take us about maybe three to four weeks for us to get used to the water there, water consumption, so I had bouts of diarrhea like almost every single place I've been since that time. It was kind of systematic.
It's clear to Toby that chemicals contributed to illness.
It's clear to Toby that chemicals contributed to illness.
Migraines were pretty much… boom, we got hit with chemicals. Doesn’t matter what the government says, I don’t care what they say, I know we got hit with chemicals.
Joseph ties the illness to the pills and shots service members had to take in the Gulf.
Joseph ties the illness to the pills and shots service members had to take in the Gulf.
Participant: Never had no problems. I contribute a lot of that to them pills that they made us take pills and shots. And they wouldn’t tell us what they were for. They just said line up and take them.
Interviewer: Did you have any type of immunizations or pills prior to your other deployments?
Participant: No. Not pills like that. Not in that—if I remember right, it was set in three increments that we had to take the pills for anthrax. And they told us. They did tell us that. It’s anthrax treatment. Well, okay. Does this mean we can walk in an anthrax environment? No, it will just mean you can work 15 minutes more. Really? What’s the MOPP suit for, then? But before the—like my deployments to Gitmo, Guantanamo Bay, Cuba. No. I had the regular immunization shots. You know, tetanus and whatnot. But now you look in my medical book and I bet you it’s not in there.
“Alan” remembers being constantly exposed to explosions and working with hazardous materials without proper protections.
“Alan” remembers being constantly exposed to explosions and working with hazardous materials without proper protections.
Blew up bunkers and many other people blew up bunkers and come to find out later one that those bunkers had chemical weapons in them. They didn't say for years later on that, oh, by the way you might have breathed some of that, you know? And I was involved in another incident when the 11th ARC, the 11th Armored Cavalry Regiments motor pool blew up right next to ours. I was up on top of a D9 bulldozer. And waiting for Stand To, when the motor pool next to ours blew up and I got thrown in the air and landed on the concrete tarmac. They said I was out for a few minutes. But once I got my bearing and I was more worried about my guys and everything else going on. So, I had refused medical attention. I just went about doing my job. But shortly afterward, then when we had to do the cleanup of the motor pool that blew up, we didn't have respirators or anything like that. We were out there moving who knows what was dilapidated uranium and everything else. We were out there cleaning and scraping down the concrete to bulldozer and have to get all the equipment, all the destroyed equipment out of there. And we put a lot of long hours in. But I started experiencing chest pains and bad headaches and I was tired and all that. But I just attributed it to the long hours and the workload. So, and there was a lot of other stuff we were exposed to that it was ammunition and everything, unexplode ordinance, everything. All around us, all the time. I got the pictures. We were blowing up stuff right outside the base walls to get rid of it or on the other side of the- about two miles from the base. We would bring everything there and blow it up there. And finally, the oil fires cleared up, luckily, we weren’t having- I guess we weren’t breathing the fumes and stuff as much.
Brian isn't sure if his memory issues stem from his time in the Gulf or if they're due to age.
Brian isn't sure if his memory issues stem from his time in the Gulf or if they're due to age.
You know, I’ve got memory issues, I've got joint pain, I've got, almost reads like a book. It's ridiculous. But it's hard for me to attribute that to the Gulf or maybe that to age or that to just general wearing my body out, so it's hard to say.