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Active Duty Soldier - Looking for Advise

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Fibromyalgia
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Batou
Regular Member
Joined : Oct 2013
Posts : 22
Posted 10/30/2013 5:47 PM (GMT -7)
I'm just wondering if anyone could recommend a Doctor in the Dothan, Alabama region?

I'm in the Army, but I have already gone through the system to rule out several other possibilities. Now I need someone that knows what they are looking at. It is either this, or I need to go to Behavioral Health because I'm crazy.


I gave you a subject line. You will get more responses that way.

Sherrine

Post Edited (Batou) : 11/20/2013 4:50:46 PM (GMT-7)

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Sherrine
Forum Moderator
Joined : Apr 2005
Posts : 18414
Posted 10/30/2013 6:48 PM (GMT -7)
Hi, Batou, and welcome! First of all, i want to thank you for your service to this country and for helping to keep us safe and free. You and the rest of the military are in my prayers.

Now about finding a good doctor. You can check to see if there is a fibromyalgia support group in your area. They can guide you to the good doctors. Your local hospital might be able to tell you if a fibro support group is in your area.

Check your phone book and look for board certified rheumatologists. Many put in their ads what they specifically treat. Then go to Healthgrades.com and vitals.com, put in their names and you should get more info and reviews of the doctors. Googling their names also helps. Let's know if you find a good one.

Be sure to read Fibro 101...the first thread on the forum. There are links to good info about fibro and you can learn a lot there.

I'm looking forward to getting to know you better. Don't hesitate to ask questions because we are here to help you. Hope to hear more from you soon.

Sherrine
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Batou
Regular Member
Joined : Oct 2013
Posts : 22
Posted 10/31/2013 5:12 AM (GMT -7)
Thank you for the information.

Those of us still serving have the additional fun of having to work through the Tricare system with either a GP, PA, or NP for most of our care. Sometimes they are a bit stubborn about referrals and try to fix the problem themselves. And most of their fixes involve (A) Motrin, or (B) Moleskin, or (C) Come back in 30 days for the same treatment.

I just finished a nerve conductivity test. Wow, I don't think I have had that much pain ever. And I can still feel the needle sites. That Doctor was on the local FM list, but he just wanted to knock out the test and send me back to Ortho and my GP on post. So it goes, back to square one.
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Acheybody
Veteran Member
Joined : Nov 2008
Posts : 6036
Posted 10/31/2013 9:02 AM (GMT -7)
That's too bad! I have heard that those tests are excruciating....and then to be given short shrift on top of it....frustrating, I'm sure.

I hope you do find someone who takes more of a real interest in you and your treatment. In the meantime, you've got us, and we do understand. What are your symptoms, and have you ever been diagnosed with Fibro, or are you just coming to that possibility on your own?

Debbie
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Batou
Regular Member
Joined : Oct 2013
Posts : 22
Posted 10/31/2013 3:28 PM (GMT -7)
Thanks for the support. It means a lot, considering even my RN wife thinks I'm crazy.

History:
This fun started out as just knee pain about 7 years ago. But being in the Army I've had multiple minor back and leg injuries. Well back in March of this year I blew 3 discs in my lower back. Rehab seemed to be going well through traction and PT.

Then in Sept, I started having headaches and pain in both legs. That was followed by both arms a week later. The problems in legs, back shoulders and arms led to the fatigue. It has gone down hill from there. MRIs of my cervical and lumbar spine show no reason for the widespread pain. The nerve conductivity test showed some nerve problems in both arms but he put it at 50/50 nerve and neck arthritis. The MRI did show a problem with my thyroid that I'll have checked tomorrow at the lab. Mornings have been the worst, the stiffness combined with the Army's compulsive need to start the day before sunrise is a challenge. Many mornings I need my wife to help me with getting my boots on, and that is just embarrassing. Not to mention the IBS embarrassment, which at first I thought was just from to many shifts from real food to MREs.

My mother had RA, but was never diagnosed with FM. My sister though was diagnosed with FM 3 years ago. Both my mother and brother had/have spinal stenosis. Thankfully, I'm negative for that.

Lord knows what I've been exposed to in the years. I had all the same inoculations as my friends with Gulf War Illness, as well as the 'wow you should be dead' memo in my records (extensive exposure to hazardous air, soil, water as well as some other interesting diseases) from multiple deployments and missions to Haiti.

Just out of pure luck, I have my Periodic Health Assessment tomorrow morning. I'm hoping to get a diagnosis before I leave the military as that makes working with the VA MUCH easier. The daily drag is difficult, but I think the hardest part is after 23 years is to admit that I "can't" do something and that pain "is" a problem.

Post Edited (Batou) : 10/31/2013 4:31:25 PM (GMT-6)

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Batou
Regular Member
Joined : Oct 2013
Posts : 22
Posted 10/31/2013 3:29 PM (GMT -7)
Oh and wow, the Fibro 101.. That is a gold mine of information.
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Sherrine
Forum Moderator
Joined : Apr 2005
Posts : 18414
Posted 10/31/2013 4:00 PM (GMT -7)
I was just going to suggest you read Fibro 101.  smilewinkgrin    Good starting links for you are Symptoms, What Else Could It Be, and A Thorough Explanation of Fibromyalgia.  You just might see yourself there.

 

Fibro has "kicked in" for many reasons...accidents, trauma, traumatic accidents, and even giving birth!  So, what you have been through could easily help start fibro.

 

When you open Fibro 101, there is an interview with Dr. Daniel Clauw who is one of the top doctors researching this illness.  He explains what they think is going on with fibro.  We don't know what causes it yet so, since there isn't a cause, you will find some doctors out there in the Dark Ages denying it even exists.  Women expecially have been told it's all in our heads.  In Fibro 101 there is a link called Doctors Respond to New York Times Article and it's excellent.  The Times article was saying this isn't a true illness and the knowledgeable doctors responded.  That's one of my favorite links in Fibro 101.

 

Feel free to print out any of the links if you think it will help you get people to understand what you are going through.

 

Do let us know how your doctor's appointment goes tomorrow.  I hope your doctor knows a little about this illness.  It's really bad when people don't believe you but we do.  We've been there and done that.  So let us know because we do care about you.

 

Sherrine

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Batou
Regular Member
Joined : Oct 2013
Posts : 22
Posted 11/6/2013 8:40 AM (GMT -7)
Just sharing an update (ie I have a lousy support at home).

Well, the Army Doc ran thyroid blood and on paper I'm as healthy as an ox.
He ordered 7 more test and sent me back to the neurologist. Currently we are between Gulf War Illness, FM, and Chronic Fatigue. Who knows. Looking at the symptoms of all three it is very hard to tell the difference.

Anyone have any advice? I feel like a training device for the doctors at this point.
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Yvette1205
Regular Member
Joined : Nov 2012
Posts : 80
Posted 11/6/2013 12:44 PM (GMT -7)
Hi Batou!

I feel your pain... Been there done that with all the different back and forth between doctors. It took me over 8 years to get a diagnosis. I finally saw a few different specialists at the Mayo Clinic and was diagnosed with FM. I wanted to also say that the doc that diagnosed me said it is believed that FM and CF are the same thing....

I hope you get your diagnosis soon.. Welcome to the forum!!
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Marrit
Regular Member
Joined : Jan 2012
Posts : 146
Posted 11/6/2013 4:24 PM (GMT -7)
Hi Batou,

Can you get a gastroenterologist to give you the lactulose breath test for small bacterial overgrowth (SIBO)?
You mentioned the IBS. That is a diagnosis that frequently precedes Fibromyalgia from what I've read, seen and experienced. I posted an article that explains how SIBO can cause the symptoms of Fibromyalgia, as bad gut bacteria releases endotoxins which influence the immune system and are carried throughout the body. We are basically being poisoned by our own gut bacteria, which has shifted due to any number of reasons (injury, burn, accident, gastrointestinal illness, perhaps toxins in environment, and even severe hormone fluctuations).
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Batou
Regular Member
Joined : Oct 2013
Posts : 22
Posted 11/14/2013 7:14 PM (GMT -7)
Well the 7 vial blood test came back with some interesting results. I'm positive for anti-nuclear antibodies (ANA), and my CRP is elevated. Both point to probable developing RA, which is horrible, but at least now my Primary Care Provider can finally refer me to a Rheumatologist (gotta love the military medical system). I did come back with really low testosterone as well. So that is likely a contributing factor to my fatigue but I don't think that covers the pain.

I'm wondering if I need to take a pivot chart in with me with my symptoms cross-referenced to FM, CF, and Gulf War Illness -GWI (if I can find symptoms for that). But I'm kinda worried that the Doc will take it as me 'fishing' for a diagnosis rather than me just trying like crazy to figure out what is going on so that I can start the next step of treatment or learning to live with it.
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Batou
Regular Member
Joined : Oct 2013
Posts : 22
Posted 11/14/2013 7:24 PM (GMT -7)
Another question; does anyone know of any resources for Gulf War Illness?

When I run a search, it just takes me to the CDC website with it as a undiagnosed illness. confused

This was the information from the VA: vets.yuku.com/reply/457346/Gulf-War-Illness

Post Edited (Batou) : 11/14/2013 7:28:07 PM (GMT-7)

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Batou
Regular Member
Joined : Oct 2013
Posts : 22
Posted 11/20/2013 4:58 PM (GMT -7)
I wasn't aware that you could have a panic attack, and be exhausted at the same time. But I managed to do it.. Doc and me are looking at cymbalta now as well as some counseling. To bad this gold-fish memory doesn't affect my bad memories.
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Achey all over
Regular Member
Joined : Sep 2013
Posts : 187
Posted 11/20/2013 7:22 PM (GMT -7)
Sorry to hear about the panic attack. That will definitely make you feel exhausted as well! Where you able to get an appt. with a rheumatologist ? Hopefully they will be able to give you a diagnosis so you can start being treated.
I know how difficult it can be with out a good support system. Keep posting and keep us updated!

Hope you can get some sleep tonight.
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Acheybody
Veteran Member
Joined : Nov 2008
Posts : 6036
Posted 11/20/2013 10:51 PM (GMT -7)
Batou,

I'm sorry you had that panic attack. I really think that being exhausted makes just about everything that can go wrong more likely!

(It might feel counterintuitive, but that's my experience, anyway.)

Do you feel like you are making good progress with this doctor?

Debbie
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Batou
Regular Member
Joined : Oct 2013
Posts : 22
Posted 11/21/2013 5:10 PM (GMT -7)
Well, being active duty we have a substantial behavioral health support system. So while my primary care manager seems to be content to keep ordering a test and seeing if I will just go away, my councilor is connecting the dots though between pain, fatigue, depression, and anxiety.

I have appointments with 3 of the 5 doctors next week including the neurologist. I have a follow up with the primary care manager to go over the lab results. Hopefully, the results will get me to a rheumatologist for diagnosis. I'm a bit concerned though as I'm down to 10 months before I leave the service. So if I don't head to a Medical Review Board or get a diagnosis prior to that, I'll have to start over with the VA.
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Philippians 4:6-7
Regular Member
Joined : Jul 2013
Posts : 112
Posted 11/21/2013 9:07 PM (GMT -7)
Batou,
Welcome to the forum and thank you for your service! I just retired after 20 years active duty in the Air Force. I don't know about any docs in Alabama, but here in the DC area the military health care is mostly good. If you aren't getting good care from your current PCM, you can actually ask for a change to someone else.

Another approach would be to ask one of the specialists you are seeing for the referral to the Rheumy - They generally don't like to do it and will say it's your PCM's job, but if they think you ought to see a different specialist, and you push on them firmly but politely enough, they might just do the referral for you. They are certainly capable and authorized to do so.

I didn't actually start having symptoms until 10 months prior to my retirement date. I was pretty nervous about figuring out what was happening before my retirement too. But after being poked, prodded, scoped, scanned, and generally feeling like a lab rat/guinea pig, I did actually get a diagnosis from an Army Rheumy at Walter Reed. It seemed like ages, but in reality it was only 6 months from when I first started having symptoms to when I had a diagnosis. And most of that time was working with GI & their infinite tests since I presented with the digestive symptoms (IBS)
first. The Rheumy actually diagnosed me on my first appt with him.

As for the MRB, I learned that they won't push on that usually if you have an approved retirement date, as long as you are able to do your primary job and your chain of command is happy with your work.

The VA process was actually pretty easy. Just make sure you get all your paperwork turned in NLT 90 days out from your retirement date. That will expedite the process a lot. I had mine in ~ 120 days ahead. The VA scheduled all my C&P appts spread out over about 3-4 months. My last appt was Sep 23rd and I got my assessment package back 30 Oct with a 100% disability rating.

Good luck. I hope you get in to see the Rheumy soon.

Have a blessed day!
Mari
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Mrsppmrxky
Regular Member
Joined : Jul 2006
Posts : 388
Posted 11/22/2013 12:32 AM (GMT -7)
Document, document, document and make copies of all of your medical records (2 if possible.)

I don't know any drs in your area. We are up in Birmingham. Do not skip and accept the Motrin and return in 30 days. When my husband served, that is all they did for him and after he got out, we continued to do the Motrin daily for pain. Now he has allergies to all sulfa, sulfites including in foods. That motrin messed him up badly.

Apply to the VA as soon as you discharge.

Thank you for all you have been through in the military and for your sacrifice!
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Batou
Regular Member
Joined : Oct 2013
Posts : 22
Posted 11/22/2013 6:30 PM (GMT -7)
Thanks for the information Mari.

Unfortunately, I'm one of what will be thousands involuntarily separated Soldiers. I was suppose to be retained until 2016, but that changed with the new FY and new troop level goals. It is kinda funny since the Army involuntarily recalled me to start about 8 years ago. And as dumb luck would have it, I'm short for active duty retirement, but I'll be able to retire out of the reserves if I'm not MEBed. I probably need to talk to the VA to see what happens IF I just ETS to the Reserves, can I draw VA while in that status? I'm guessing this is a catch 22 and the answer is no, which means that I should push for the MEB. I really hate this. Well.. I'll take a knee for the weekend, drink water, and ruck up Monday to try and sort it out.

Thank you all for your feedback and support.
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Batou
Regular Member
Joined : Oct 2013
Posts : 22
Posted 11/25/2013 7:21 PM (GMT -7)
Had my follow up with Neuro today.
He basically did all the talking, stated that there was nothing that he could do for me, and said see you in a year for a CPAP review.

Ah well, tomorrow I see the PCM and get to go over the lab results.
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Batou
Regular Member
Joined : Oct 2013
Posts : 22
Posted 11/27/2013 9:41 PM (GMT -7)
Appt with Primary Care, well.. I guess that I shouldn't have mentioned the visit to behavioral health..

My PCM glanced at my labs, said all normal, and it is likely a stress response. Only problems are, I saw the labs (not all barely in the normal range), and the stress started after I was already seeing him for pain/fatigue.

But then today I had my Ortho appt and did get a referal to rhumotology from him. We only have 2 in our city, so it may be Jan/Feb, but at least I have a referral now.

I'm thinking that it is time for a new PCM.
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