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Old 12-30-2008, 07:38 AM   #1
Join Date: Dec 2008
Location: indian harbor, florida, usa
Posts: 1
breakingbad38 HB User
Looking for feedback....

Have just found this site and have lots of questions.
My story sounds the same as most, and the frustrations are reaching an apex.
I was in the Corps from 88 to 92. Deployed to the gulf from Feb. to May. Haven't been right since. I've been to doctors for years, and always told it's all in my head. I'm 38 and going crippled. Losing use of my hands, have numbness and tingling in all extremities. Shoulders are going, hips, and knees as well. Elbows constantly throbbing. Haven't slept good since before the corps. I have unexplained lymphnode swelling a couple of times a year, and get these wierd looking rashes on my lower back. I've been to doctor after after doctor and all end up saying I'm just depressed. Well no ****, I am now.
My Rheumtologist has been treating me for RA and now wants to treat for FM too. Just guess work as all I've had is a positive RA factor. Clinically I have Rheumatoid but I don't swell like in classic cases. She's baffled, and now seems to be leaning towards a "Psychological" diagnosis.
I'm getting to the point where I really am losing hope of at least find a real doctor who will listen. Ironically, I'm an RN and have worked in the ER for years. You'd think that would carry some weight. It doesn't.
What's getting me is my age. I feel eighty and don't have the energy anymore to much at all except make it through a shift and then come home and drool and try to sleep until the next one. It's rediculous and not normal.
Are any of you out there finding Physicians who are will to listen and work with this mess or has it all been pointless?
Looking forward to feed back, and thanks.

Last edited by breakingbad38; 12-30-2008 at 07:41 AM. Reason: didn't finish

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Old 03-26-2009, 02:21 PM   #2
Join Date: Mar 2009
Location: Marengo, IA USA
Posts: 1
Re: Looking for feedback....

I served during both the Korean and Vietnam conflicts. I have survived EVERY THING thrown at me, including an auto accident after service when my car was hit by a drunk driver. I am classed as 50% service-connected. I bowled some in service but full-time as a Senior to present. While mowing a yard for a Senior lady, I tore up the rotator cuff in my right arm and was told I would have to quit bowling. I averaged 200+ and rolled two 300 games right-handed. I switched and now bowl left-handed and when told I have this or that or cannot do this or that, I FIND A WAY to get around it and DO NOT listen to what negative thoughts tell you. YOU CAN OVERCOME because your mind can handle it. BELIEVE ME AND HANG IN THERE. God Bless You and YOU CAN WIN THIS WAR YOURSELF. Just say NO to defeat and disease, etc., and WIN THE WAR! God Bless and good luck. Do like I do and toss the NOS out of your vocabulary and system. GK

Old 09-28-2009, 01:23 AM   #3
Join Date: Sep 2009
Posts: 6
mconnie71 HB User
Re: Looking for feedback....

I know howyou feel. First sorry for my typing. it is not as great anymore. evn if I try to correct then, it will not be any better. I ave had thesame problem tht it was in my head, you are nolonger in active duty o you are not as fit so itmust be tht you are over weight..., or as pysical fit as before tht is why you are not feeling the same way., or we are not as young as we used to be these days so we have to live to the present sweetie...

If they would of listened to what I complained about, the lil things would of prob stayed little. Now, ithas spread & I am messedup..I understandabout the cripple part. I sometime limp, use my cane, or "my speciaal wheels" if it gets bad enough... just keep changing your doctors until you find one that will listen to you. Don't give up.... Like I have...

As for SabreJet, thank you for the positive feed back, I will use your message for my ownself also.... I do try to get back on my feet to fight... I have 2 beautiful girls & a supportive husband... right now...though...with 2 suicides behind me..and I thought I have learned my lesson from the 2nd one... the battles I am fighting inside... GOD! I can tell you that I am losing right now... How many times the 3rd one keeps inching close to me.. all the meds I used to take have decreased to half.... which is supposed to be good.. however, my body's so used to them... sometimes, I look at them & I just wonder the what ifs............

Old 02-06-2010, 01:39 AM   #4
Join Date: Feb 2010
Posts: 3
Functionality HB User
Re: Looking for feedback....

You have to be stubborn, push for someone to acknowledge that it could be GWS. It is not in your head although mental illness is part of the gammit of diagnoses covered under GWS. I get treated at the VA because I pushed a long time ago to be declared disabled. They actually treat me like I need to be and listen and understand what the heck I am talking about. I too am and RN and find it frustrating when doctors can't figure out what's wrong and say its in my head. Like the ER doc the said I have "chest wall syndrome" and I just have to get used to it because there's no treatment and it will never go away. And etc.... Don't give them the power to think that it is not real. Be your own advocate and be loud about it.
Good luck

Old 10-03-2010, 12:53 PM   #5
Join Date: Apr 2010
Posts: 73
guy484 HB Userguy484 HB User
Re: Looking for feedback....

Are you aware of the Camp Lejeune Water issue?

Many military bases are polluted bad. In 2008 the water over here on Guam was still showing toxic levels of Chlordane and the Federal EPA just gave DOD a waiver for the Trichloroethylend in the bottom of the water table.

That's likely where you got your contamination.

Last edited by mod-anon; 10-03-2010 at 09:18 PM. Reason: Please read the posting rules

Old 10-20-2010, 02:28 PM   #6
Senior Veteran
Join Date: Jun 2006
Posts: 1,339
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Re: Looking for feedback....

What meds are you taking?

Old 10-20-2010, 10:51 PM   #7
Join Date: Feb 2010
Posts: 3
Functionality HB User
Re: Looking for feedback....

What meds? I take it you're asking me, if not then I am just posting. Neurontin and Lamictal for both Bipolar and Fibromyalgia. I started taking Klonipin for the severe anxiety and it helps and I found it also helps my IBS. My latest trip to the VA got me a stress test for the chest pain, all normal of course, GI appointment and no answers there...find a way to live with it, and so it goes. I also take Levsin for IBS, Armour for thyroid, Estrogen and Progesterone which got screwed due to GWS. I take Prilosec 2 times a day and still can't eat well. It's great joy to be this way, so normal looking on the outside and so pained inside. Exercise and behavioral modification help. Deep tissue massages on a regular basis, aaccupuncture, meditation and yoga are also supposed to be very good for GWS. I am trying but can only seem to do one thing at a time. I am also on Robaxin muscle relaxer and Vicodin for pain but try not to take that often. I take enough of those two to make it through a particularly rough day at work. I live on Mucinex D for the severe Multiple Chemical Sensitivities and "allergy" like symptoms I have every day. I am sure I left something out like the inhaler I have for when a chemical affects my airways. It's not fair, it is what it is and I finally am starting, after 20 years, to get my life back to mostly functional. There is always hope if you get the right Doctors! Good luck

Last edited by Functionality; 10-20-2010 at 10:57 PM. Reason: adding comment

Old 12-10-2010, 05:01 AM   #8
Join Date: Dec 2010
Location: Thorndale pa
Posts: 9
keithn101 HB User
Re: Looking for feedback....

Hang in there your not alone. File for Gulf War Illness and have the C&P exam for Gulf War Illness. Things are changing in VA.

Old 04-22-2011, 04:17 AM   #9
Join Date: Apr 2011
Location: Grand Junction, CO
Posts: 3
bear34638 HB User
Re: Looking for feedback....

My husband deals with almost all of this as well. You have to get in the Gulf War registry. The rash may be , I hope I remember this right, Tinitis. There is a cream for it but it can make a man sterile. My husbands just comes and goes now. If you end up with a raised rash and / or lumps under the skin, then go to a dermatologist, this could be Sarcoidoses. My husband got this from the war, even though, it is not recognized, prednisone is the only med for this and is very serious. Good luck.

Old 06-16-2011, 10:58 PM   #10
Join Date: Jun 2011
Location: Utah, United States
Posts: 4
Runnerkari HB User
Re: Looking for feedback....

Hi! My mom was in the Gulf war around '91-92, maybe 93....anyway, she was diagnosed with MS a few years ago. Her symptoms sound similar to yours. She has tingling in her arms and legs, numbness, limbs falling asleep. She also gets extremely tired after small amounts of activity and has to force herself to rest to get her body ready for another day. She has migraines, double vision, and occasionally she wakes up with one eye seeing things darker than the other. And she has become colorblind. The docs are telling her now that she most likely has MS and MG (Myasthenia Gravis), another autoimmune disease. I'm not sure about MS, but I've heard that MG can be caused by something you've encountered in your environment...maybe the Gulf? I'm thinking there might be a connection and wondering if there really is a correlation between MS and the Gulf. I know that doesn't necessarily help your situation but the tingling and numbness sounds like MS to me...

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