Seeking input

Hello all,
I am seeking some input from those with rheumatoid arthritis or any type of autoimmune disorder.

At this point I am not concerned with percentages or anything like that.

Active duty USMC, package sent to IPEB on June 15, 2017. My MEB was for "low back disc degeneration displacement", " B/L Knee osteoarthritis" and "B/L knee patellar pain syndrome"

I have a history of chronic lower back and knee pain going back more than two years. No specific injuries just wear and tear from lots of training and heavy equipment operation. I have a long history of depression, ADHD, insomnia and anxiety. My aches and pains have progressed to my entire back, neck, hips and feet. I often get headaches, chest pain, severe tiredness and have vision issues. I struggle with IBS-D daily.

When I received my DBQ's back, I was dx with lumbosacral IVDS with radiculopathy, cervical strain IVDS with radiculopathy, R/L shoulder strain, R/L hip bursitis, R/L foot metarsalgia, R/L knee osteoarthritis, leg length descrepancy (5 cm), R/L hand tenosynovitis, IBS, Hemroids, GERD, tension headaches, chest wall muscle strain, mental health dx's and some eye conditions.

All these things especially the things related to inflammation concern me. I am in constant pain all day. I cannot take any NSAIDs, tried many other meds but had to stop due to side effects. Medical absolutely refuses to give any type of opioids. I have had to leave work twice this week due to the pain and am having troubles with basic tasks of daily life. I absolutely cannot tolerate heat and need to be close to AC. I pour sweat the minute I start anything physical or go out in the heat. I feel extremely tired and week most days. I get dizzy and headaches come on with the heat.
Going to see Doc tomorrow for a referral to a rheumatologist, maybe a neurologist.

Anyone here with a similar situation? I'm at wits end with all this, just looking for guidance. Can't seem to lock medical on to the fact that all these things are probably connected somehow.
 

jahlon

PEB Forum Regular Member
PEB Forum Veteran
Registered Member
I cannot take any NSAIDs

Is there a medical reason behind this?

What concerns me more is that you seem to have quite the bit of mental health disorders, but those conditions weren't included with your MEB?
 

r72gs

PEB Forum Regular Member
Registered Member
I have very similar symptoms. My package is at the VA now. At first I was diagnosed with Lupus but now they call it undifferentiated connective tissue disease. I went thru 2 rheumatologists before I found a good one at the VA. I had luck with NSAIDS but can't take them anymore. I've been on sulfasalazine, prednisone and cymbalta and that combination seems to work enough that I can function. I've been with this 3 years now. Best advice is that if a doctor isn't listening get another right away. They'll just keep telling you come back in 3 months.
 

chaplaincharlie

Super Moderator
Staff Member
PEB Forum Veteran
Lifetime Supporter
Registered Member
I'm sorry to hear your physical conditions are so limiting. A referral sounds like a great idea. How long have you been in?
 

goflymike

PEB Forum Regular Member
PEB Forum Veteran
Registered Member
Broken,
Sorry to hear about your troubles. The Rheumatologist should be able to help clean up some of your concerns. Unfortunately Rheumatology is tricky since the different diseases manifest themselves differently quite often. I have RA so if you do find yourself staring at that kind of dx, feel free to contact me and we can chat about what works/doesn't work.

R72gs,

I find it interesting that they changed your dx from lupus to UCTD since my experience went the opposite way (UCTD to Lupus). Any reason why they did that? FYI they rated my UCTD as part of my RA the first time I went through this process- is that what youre expecting for your results?

Mike
 

ANSU07

PEB Forum Regular Member
PEB Forum Veteran
Registered Member
The non-stop sweating is likely due to the Cymbalta, AD's are known to screw with internal temperature regulation. Also, with respect to the auto-immune/connective tissue disorder, have you ever been prescribed heavy antibiotics such as Avelox, Moxifloxin, Cipro or Levaquinn (all in the Fluoroquinolone family)?
 

Broken1345

PEB Forum Regular Member
Registered Member
Thank you all for your input.
I cannot take any NSAIDs

Is there a medical reason behind this?

What concerns me more is that you seem to have quite the bit of mental health disorders, but those conditions weren't included with your MEB?

I cannot take NSAIDS because up until mid 2016 I had been on so many that they ate up my insides. I was having severe stomach pains, blood in my stool, vomiting ect. I was first put on PPI's as they thought I had ulcers, refered to Gastroenterology, had a colonoscopy, CT scans and tons of other tests. End result was diagnosed with IBS-D, given a special diet and sent on my way. Now I am super sensitive to NSAIDs, tried Celebrex and couldn't do that one either. Also have a family history of major heart attack so that also shys me away from any NSAIDs.
 

Broken1345

PEB Forum Regular Member
Registered Member
The non-stop sweating is likely due to the Cymbalta, AD's are known to screw with internal temperature regulation. Also, with respect to the auto-immune/connective tissue disorder, have you ever been prescribed heavy antibiotics such as Avelox, Moxifloxin, Cipro or Levaquinn (all in the Fluoroquinolone family)?

I am not on or have been on any of those meds. I have always been a heavy sweater, but now it's so bad I cannot hydrate enough to compensate. I'm fine if I'm inside with AC but as soon as I do anything physical at all I just start pouring sweat.
 

Broken1345

PEB Forum Regular Member
Registered Member
Update:
Monday I had an appointment with the Doc that refered me to the PEB. I explained to her what was going on and worsening of symptoms. She tested my trigger points for Fibromyalgia. I hit 14 out of the 18 trigger points. She gave me printouts of information on fibromyalgia and chronic fatigue syndrome. Also sent me to the lab for a huge list of blood tests. They took 12 tubes of blood. So now I'm waiting for test results and I'm under the impression I will be referred to another specialist based on the results. Tricare online is down today so I cannot see my results... Go figure
 

r72gs

PEB Forum Regular Member
Registered Member
I'm glad to hear you have a tentative diagnosis. Hopefully they can develop a treatment plan based on the exam and test results. It's no fun I totally understand what it's like.
 

r72gs

PEB Forum Regular Member
Registered Member
I find it interesting that they changed your dx from lupus to UCTD since my experience went the opposite way (UCTD to Lupus). Any reason why they did that? FYI they rated my UCTD as part of my RA the first time I went through this process- is that what youre expecting for your results?

Mike,

My bloodwork is crazy. Goes back and forth between high RF and ANA. White blood cells low then normal. All over the place. I think they are waiting to see what it settles down to. I have degeneration of the joints in my hands so they are trying to slow that down. My sed rate is always normal. Didn't help the first doctor put in the notes that my x-rays were normal except he never did any. VA doc was the first one to believe me and he did them finding the damage.

Not sure how they will rate me. My exam was a disaster. Said on one sheet my condition had resolved and on the others noted swelling of my joints and all the other symptoms. That's what happens when you do a 5 minute exam and fill out the paperwork 2 months later. I have CAD and had 2 stents so I'm unfit for sure.
 

uhwarrior

PEB Forum Regular Member
Registered Member
Fairly certain a rheumatologist has to confirm/diagnose fibromyalgia for it to be compensable. When you finally get a referral you may want to make sure your rheumatologist documents the fibro diagnosis.
 

goflymike

PEB Forum Regular Member
PEB Forum Veteran
Registered Member
R72gs-
Yeah the bloodwork is crazy on my end too. ANA fluctuates +/-, Complement levels all over the place. Definitely makes diagnosis hard. When I hit 6/11 criteria (only 4/11 req'd for dx) for SLE thats when they changed me to an official dx of SLE. Of note, my first exams were horrible too; I even had to restart the entire MEB process from scratch. Its a long read, but it might be worthwhile to check out my post on that experience from a few weeks ago: http://www.pebforum.com/site/thread...to-immune-mebs-and-recalls.39201/#post-187376. Maybe it will help, maybe it wont. Did you get a copy of your C&P results? They will really only rate you on how the DBQs were filled out.
 

r72gs

PEB Forum Regular Member
Registered Member
R72gs-
Yeah the bloodwork is crazy on my end too. ANA fluctuates +/-, Complement levels all over the place. Definitely makes diagnosis hard. When I hit 6/11 criteria (only 4/11 req'd for dx) for SLE thats when they changed me to an official dx of SLE. Of note, my first exams were horrible too; I even had to restart the entire MEB process from scratch. Its a long read, but it might be worthwhile to check out my post on that experience from a few weeks ago: http://www.pebforum.com/site/thread...to-immune-mebs-and-recalls.39201/#post-187376. Maybe it will help, maybe it wont. Did you get a copy of your C&P results? They will really only rate you on how the DBQs were filled out.

The DBQ's are all messed up. Not sure what they will make of it. He did note swelling and pain in eight of my fingers and both knees. On another sheet he said I had lupus and on another said it had resolved. He checked the block on the DBQ's that he did not review my medical records. I did the IMR and rebuttal letter. I don't have enough of a change to start over like you did. I should have my ratings any day now. I'm so fed up with this mess. Every single person in the process I have caught lying to me.
 

goflymike

PEB Forum Regular Member
PEB Forum Veteran
Registered Member
Hopefully it will still come out favorable- let me know how it goes!
Mike
 

r72gs

PEB Forum Regular Member
Registered Member
Hopefully it will still come out favorable- let me know how it goes!
Mike

Got the ratings today, 60/100. I'm shocked. Saw another thread about swelling in sun/hot weather. I have that too mostly my hands. They really blow up. NSIADS worked great but I can't take that due to other conditions. Sulfasalizine seems to be kicking in. Been on it 6 months and they just upped the dose.
 

goflymike

PEB Forum Regular Member
PEB Forum Veteran
Registered Member
Got the ratings today, 60/100. I'm shocked. Saw another thread about swelling in sun/hot weather. I have that too mostly my hands. They really blow up. NSIADS worked great but I can't take that due to other conditions. Sulfasalizine seems to be kicking in. Been on it 6 months and they just upped the dose.
Congrats! PDRL? I was surprised by my results too (80/80) but Im not fighting it, and Im sure you wont either! Worth the fight.
 
data-matched-content-ui-type="image_stacked" data-matched-content-rows-num="3" data-matched-content-columns-num="1" data-ad-format="autorelaxed">
Top