unknown condition related to EDS?

[ceceliaocadhain]

Hello everybody. I’m hoping you guys can help me figure something out here. I’m trying to determine if a problem I’m having could be related to EDS. I guess I’ll start with some background though, since that makes more sense 🙂

Starting in elementary school I often developed episodes of a painful stiff neck and as I approached high school many more symptoms were developing. I played many instruments and the repetitive motions often caused hand and arm pain. One of my OTs believed that I had thoracic outlet syndrome. I had irritation of different nerves in my arms, carpal tunnel like symptoms, an intermittent painful ‘snapping’ of my elbow, knee pain, neck tension and pain, low back/SI joint pain, and generalized achiness and low energy. During my high school years I saw an orthopedist who believed I had Ehlers Danlos Syndrome. He knew that having a diagnosis of a degenerative condition might complicate getting my own health insurance as an adult so he didn’t write anything about his suspicion in his notes. Since then I have managed symptoms as they’ve come up and not pursued getting a diagnosis. Things have gone pretty well and if I do have EDS I believe I am quite lucky to be as healthy as I am. I am now 24 and still part of my family’s military health insurance (which covers until the age of 26). Lately another health problem has taken over my curiosity and I wonder if the two may be related.

In October of 2014 I developed a ‘virus’ as is typical for me to do a few times a year. It always starts the same way with pain spreading wide across my body from the top of my back all the way down my legs. The pain is a nervy kind of pain, almost like the prickly ache of sciatica. I’ve always struggled to explain it well. There are also deep muscle aches especially between my low back and my knees. The discomfort in that area, the glutes and thighs, is very strong and I constantly tense and relax the muscles just to try and change the sensation I’m getting. I also get very tired, cold, and just feel generally feverish and ill. Within a few hours my temperature can be 104F and once the vomiting starts it doesn’t stop until the illness is coming to an end. I’m not talking about the kind of nausea where you ‘just can’t seem to keep anything down’. I mean that nausea is the worst part of this illness. It is so intense. It’s not a stomach sensation, there are no abdominal cramps, it’s relentless nausea that I associate more with my head than stomach (NOT with dizziness though). I start vomiting ½ an hour apart, then every 20 mins, 15, 10 minutes and I continue on vomiting every few minutes whether there’s anything in my stomach to expel or not and this goes on for hours.

When this happened in October I actually felt lucky that I only threw up about 20 times in one evening. In the past I’ve often vomited more than 40 times a day for 2-3 days. One time I threw up more than 50 times in about 9 hours, and that was only the start of the illness. These illnesses used to happen 2-5 times a year as a kid and my parents always told me “it’s a virus. There’s nothing the doctor can do for a virus. Just try to stay hydrated and wait it out.” I never went to my doctor or the ER for fluids or any sort of care. I thought they were typical viruses like all kids get. When this happened in October I thought it was just your regular ol’ seasonal virus. Then I had the same symptoms 3 weeks after that…then 7 weeks later….2 weeks later…4 weeks later etc. I had never had so many ‘viruses’ that brought on a high fever and such strong and acute symptoms in such a short amount of time. I went to a doctor and she felt that I was not suffering from viruses but that something else was going on. After meeting with a couple of doctors (two GPs, a Gastroenterologist, and Infectious Disease specialist) I’m really wondering if the ‘illnesses’ I’ve had a few times a year since I was about 6 years old and these recent episodes aren’t actually the same thing. Maybe all this time I wasn’t catching viruses but actually having episodes related to an underlying condition. So far I haven’t received a diagnosis, obviously, and I’m still getting sent to various doctors. The only things I’ve seen on my blood work are…

a slightly low WBC and slightly high RBC count shortly after one of the episodes
high c-reactive protein (6.5 normal range 0-4.9)
slightly high vitamin b12 (1488pg/ml this lab indicates 211-946 as normal but I know other labs give a wider range)
exposure to Epstein barr and cytomegalo viruses but neither is active

Everything else that they’ve tested for was within normal limits. I’ve tested negative to tick borne illnesses at least twice (although, can you ever really rule those out? I know they’re the great ninjas of declining health). When one doctor wanted to test for ANA the lab forgot to do it. A second doctor drew blood for the ANA test and other autoimmune tests but I haven’t heard anything back so I can only assume, for now, that those were normal.

To sum up, I’ve been having episodes of high fever, persistent uncontrollable vomiting with intense nausea, headache, neck ache, and pain all over the body (burning-nervy pain, joint pain and muscle pain)

Different doctors have suggested….
Cyclic Vomiting Syndrome which some guess is caused by autonomic dysfunction or mitochondrial problems
Systemic Lupus
Autoinflammatory conditions
At one doctor visit they almost sent me to the ER because they were concerned I was developing meningitis. Personally, I’ve read about Mollaret’s meningitis and I believe that a condition of recurring meningitis is in the realm of possibilities but I don’t want to be the crazy person coming in to the doctor’s office crying meningitis if you know what I mean…

to be continued….

[ceceliaocadhain]

continuation…i rambled on too long to fit in one post…

Can anyone point me towards any research connecting these sorts of episodic symptoms and EDS, mast cells, dysautonomia or anything else that could be the missing puzzle piece? Is any one else familiar with this?
Thank you so much to any who’s taken to time to read this novel. I really appreciate it.

~Anna

[Trevor]

I had a weeping appendix for 10 years. I had similar attacks to you but only a couple each year. How much do you weigh? During that time I weighed 55 kilos. Now I’m having troubles with pots.
When I had the appendix out I put on 20 kilos and was quite well for 15 years.

[ceceliaocadhain]

I have always been very petite. I am about 5’4 and for the last few years have maintained a weight of about 108-110lbs (the most I’ve ever weighed). unfortunately, with so many back to back episodes over the last 8 months or so I’m usually about 103 these days. Not a big change but for years I’ve been trying to put on some weight, i’d like to know what 115 feels like, so it’s frustrating.

I’ve never had any surgery on my abdomen, no ER visits, and I still have my appendix.

~Anna

[Trevor]

Hello Anna,
One big thing I can remember is I had really bad crust on my armpit hair. It was as if all the toxins or something were coming out through that area. I know it’s really disgusting. It’s probably a bit hard to tell if you shave under your arms.

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