Reality of my ME/CFS

[digital dog]

Read about postal workers in NY post 9-11. They got given the anthrax vaccine and a very high proportion of them had to stop work due to an adverse reaction. I think it was as high as forty percent that were severely affected.
There are lots of documents about this on the web.

 

[Gingergrrl]

Overall I think I'm doing better.

@kristysmiles I was happy to read your update and that you are doing better, overall. That is great news!

 

[kristysmiles]

Hey everyone, I just got a new update. Apparently, I tested positive for all the fibromyalgia trigger points. It's disappointing, and I hope I don't get the severe pain that is characteristic of fibro. I definitely have the "fibro" or "brain" fog. It sucks.

On a positive note, I saw a TMJ/Sleep Medicine Doctor who thinks he can help with my TMJ and improve my sleep. He was very knowledgeable, and if my insurance processes the specialty referral I can get the treatment. *fingers crossed
Another positive, I only have two months left in the military, and I can broaden my search for a good doctor. If anyone has a link to the CFS doctors (I think they disabled the old one?), or knows of a good doctor in Eastern North Carolina, please let me know.

 

[Amaya2014]

Hi @kristysmiles glad to hear from you again (although I wish you weren't still going through the physical issues). I just got out in October.

End up having a MEB for CFS and co-morbid Fibro along with some other stuff. On the one hand they 100% retired me and the benefits are helping a lot but I'm still sick.

Are you going through an MEB? If so, are they being fair with your diagnoses? Please feel free to message me if its sensitive and you feel like sharing. I had some drama getting the military docs to diagnose CFS so I might relate to your experience.

I've also had a "wonderful" few months navigating our lovely VA system so maybe I can help you in that regards.

 

[Amaya2014]

My CFS specialist is Dr. Lapp who is in Charleston at the Hunter-Hopkins Center. From the posts he's somewhat controversial on this site but he's the closest, somewhat affordable, and the only doc I've seen that's not trying to strap me in a white jacket or completely dismiss me. He's willing to say Chronic Fatigue Syndrome and that's a huge plus for me. His assessment went a long way in getting the VA and then Army to take me seriously.

 

[kristysmiles]

@Amaya2014
I couldn't get them to do a MEB. I probably should have had one, but the command I was assigned to was more interested in trying to force an Admin discharge than a MEB. The military doctors are terrible, they don't even know what's going on. I toughed it out, so I can can get an honorable.

Actually, the doctors who have seemed the most helpful are the ones doing the independent evaluation of my disability claim. I've always heard the VA tries to low-ball the disability percentage, but from talking to the doctors, and with fibro diagnosis I'm hoping that increases the evidence for my claim. I guess I'll see when they finish the process. I'd be happy with a 70% rating.

I was looking at the Hunter-Hopkins Center. My primary concern is the expense. Do you know if the VA will offset any of the cost to see a specialty doctor? Have they offered you any treatments options, specifically for quality of life improvements? As long as I don't get worse, I'm at a point where I can modify my schedule around the fatigue (w/meds). What worries me the most right now is the brain fog, I feel like I'm in a daze half the time so I process information very slowly.

Were you able to get into a Vocational Rehab program? That's something I'm interested in. If you have any other helpful advice, I'd appreciate it. I don't know what it is about the military, but I've developed this persona of being okay all the time that I don't know how to let anyone in to see what's going on. It makes me feel alone, but I know I'm the one creating the barrier.

 

[Amaya2014]

I don't think you're alone in that..I've always been a social butterfly and very outgoing but after 10yrs and the way I was treated upon getting sick (they tried to admin discharge me) I realized that I had some paranoia and had become very isolated. Moving around a lot and never knowing who you can trust will do that to anyone in my opinion. Plus we're all served plenty of the juice of being America's impenetrable defense...holding the line and standing at the fence when no one else will stand with never a complaint..lol. You will be okay and once you get out and rebuild your life things will get better!

Hunter-Hopkins told me that you have to pay them they don't take insurance referrals (double check though). I know I can put in for tricare reimbursement (it's only partial) but I'd have to check if VA works the same. Get in contact with the DAV where you're going to be and they can get you info. Also, I'm on a FB web group called Veterans2Veterans..they pass a lot of great info along. I'd have to friend you to invite you to the group.

If you can, check out 38CFR for chronic fatigue syndrome. It tells you how VA rates CFS and see if the VA doc will do a DBQ for you. Your CFS doc could do a nexus letter down the line and that could help you in tying the CFS to military service.

I have serious cognitive issues also...it would help a lot if you can get a referral before you get out for neuropsych testing. Military did one but it was a sham and I got a second opinion referral for a civilian neuropsychologist. She said the trouble I was having in understanding was called slow processing speed. There are a number of studies that show this is common with CFS. Military called it mild cognitive impairment and she diagnosed organic brain disorder. She also provided a strong opinion on how easily fatigued I became when attempting cognitive tasks.

Yes, I'm just got signed on with Vocational Rehab. I'm not sure about them. It was really confusing at first and I could never get them on the phone. Finally I went to the office and "caught"them and now I'm enrolled. I also applied for social security disability cause I don't think work is realistic for me right now. I figured if anyone could help its VR&E or else they can help strengthen my SSDI case. We'll see.

 

[kristysmiles]

Just wanted to post an update. I don't know what cured me, but about two years ago my metabolism kick started I dropped 30lbs suddenly and have had no more issues with fatigue after suffering for 7 years. I did find out I had a severe allergy to dairy around that time, which was surprising as my grandparents had a dairy farm growing up. So my diet became very restricted possibly eliminating an inflammatory state. The only other change I made was forcing myself to increase my cardiovascular fitness by running. I still do have fibromyalgia pain every now and then, but I'm just so thankful the day to day drag is over. Best of luck to everyone else on their journey. I'm also happy to announce that I graduate medical school in May and will be working as an emergency medicine physician <3

 

[vision blue]

The world can use an empathetic ER physician, so congrats to us as well as to you. When i read your very first post, I wondered if you had a herpetic infection affecting nerves in head and elsewhere. I guess not though since you didn't mention it at all (?) By allergy to dairy, a "proper" IgE mediated, show up on RAST test allergy? (I have one as well but it won't show up). Also curious if you still get the limb myoclonus.

 

[kristysmiles]

The allergy showed up on the skin prick test, negative for IgE on blood test. I believe it's non-IgE as my symptoms start ~45 mins after ingestion with rash, nausea, and congestion. I still do have restless leg syndrome secondary to iron deficiency anemia, so I do get some involuntary myoclonus in my legs but rarely. I finally convinced them to give me IV iron infusions for it this year, which will hopefully help a lot with my sleep.

 

[wingate]

no more issues with fatigue after suffering for 7 years

I'm also happy to announce that I graduate medical school in May and will be working as an emergency medicine physician

So happy for you, @kristysmiles! Must feel so good to be symptom free now, and also have the accomplishment of medical school under your belt!

Based on how demanding it is, I imagine it was pretty hard to get through medical school while dealing with the physical and mental stresses. How did you manage that, if you don't mind my asking? I feel like if I were in your situation I would also feel a need to hide what I was going through given how much ignorance there is about ME and Fibro in the medical community.

The only other change I made was forcing myself to increase my cardiovascular fitness by running.

As someone who misses running a lot, I'm also curious to hear what, if anything, helped you get back into running. When you run do you get any payback or ill-feeling after? Or were you able to run without too many symptoms?

Congrats again on med school and best of luck to you- we need more doctors like you!

 

[Gingergrrl]

Best of luck to everyone else on their journey. I'm also happy to announce that I graduate medical school in May and will be working as an emergency medicine physician <3

I am so happy to hear your news @kristysmiles and congratulations on becoming a doctor! You were one of the first people I chatted with on PR back in 2014 and I often wondered how you were doing and what happened to you. Thank you for posting this update and I wish you all the best moving forward