There has to be an answer.... please help.

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New Member

Date Joined Jan 2011
Total Posts : 14
   Posted 3/24/2011 8:27 PM (GMT -6)   
hello all... I'm usually over in the lupus/fibromyalgia forums but I still haven't found an answer to what in the world is wrong with my body. So I'm posting here, there, and everywhere in the hopes that someone will recognize something I have to say.

For the last 6 months I've been extremely ill with something no one can name. I would best describe it as completely debilitating intermittent fatigue, joint/extremity pain, near daily migraines/eye pain, hair loss, brain fog/balance loss, gastrointestinal issues, sore throats/sinus inflammation, rampant lymph node growth/swelling with no distinctive answer, muscle twitches/electric shocks/RLS.

I have Celiac Disease (since 2003), completely controlled, rechecked by blood tests regularly. My rheumatologist thinks lupus could be "developing" but won't give me a definitive diagnosis. I've also been "diagnosed" with fibromyalgia by another rheumy who was anxious to get me out the door, so I feel a little iffy about that one. Most of the time I feel I fit in with chronic fatigue syndrome...but I don't know. I have these very weird, distinctive symptoms, and NOTHING HELPS. Medication wise.

I've had consistent eye pain (pain behind eyes, with movement) for about 8 months, gradual-onset. I finally got diagnosed with Orbital Inflammatory Disease (muscle inflammation behind eyes) by a neuro-opthalmologist, who thinks it is caused or exacerbated by my immune system dysfunction. I have near-daily migraines, which make me tired, out-of-it, and dizzy. They often feel like pressure in my skull, and pain around the inside of my skull.

My fatigue is debilitating and not relieved by sleep. I have problems with insomnia, falling asleep, nightmares, pain at night time, etc. Sometimes the fatigue comes on so quickly that I am almost literally overtaken by it. Lately, I've had a couple days where literally, I crawl onto the couch and cry, because there's nothing else I can do. The worst symptom I've had lately, which is getting worse, is a heavy, tired, aching pain in my legs, feet, arms, hands, and shoulders. Sometimes it's just legs, mostly it's all over my limbs. Just this awful, very distinctive tired ache that is NOT relieved by resting. When I rest with this pain, my legs almost feel worse, jumpy, RLS-ish. It's horrendous.

I have bloating and excessive burping after I eat, and can't eat large meals at all. Gallbladder issues have been ruled out, and I have done a small intestine CT scan with barium contrast and everything ruled out there too. No ulcer either. But I have vicious acid reflux, cramps/tightness in my stomach, and bad constipation (though I take fiber every day) that has only been the last 6 months. I can't enjoy food anymore... and coming from a Celiac that's really saying something.

I have muscle "zaps" where I suddenly twitch and it's almost painful. Happens all day, not just when I fall asleep. Sometimes it's just a finger, sometimes in my shoulder, sometimes it's my entire leg coming from my hip area. Electric-type shocks and muscle jumps/myclonic jerks. Sometimes the twitches seem like they go on forever (though in reality just 2 seconds) where my whole leg or arm moves by itself. I also have sudden nerve pain in the nerves that go from the back of my neck up the back of my head. Like what I imagine a pinched-nerve would feel like, but never diagnosed as one.

I have had two seizures, 2008 and 2009, which have been diagnosed as temporal lobe epilepsy. They were terrifying, like night terrors made real. I have had a brain MRI with contrast, as recently as this past summer, (however.... that was before all this bad stuff started getting REALLY BAD) which I was told was normal, as well as a cervical MRI, same normal result.

Finally, my lymph nodes seem to grow out of control for no apparent reason other than they are deemed "reactive" from some immune system problem, from biopsy. My adenoids grew back huge, TWICE, so big they blocked my air supply. I was told it would be lymphoma; biopsy: negative. Then, 4 months ago, the lymph node on the right side of my neck under my chin grew humongous and hard. Again, I was prepared for lymphoma. Biopsy negative again, and again, just told it came back "reactive."

I was already skinny and I'm losing weight like crazy. I try to keep it on, I drink "weight gain" Ensures, but it's shedding from me rapidly. You can practically see my lungs working. I bruise like crazy, for no reason. Small bruises appearing in clusters.

My hair has been falling out, most temporal but also from the base of my head. I'm extremely sensitive to cold weather, heat (sometimes), alcohol. I often (almost every day) have a thick, "getting sick" feeling in my throat. I have chronic sinusitis, inflammation in back of throat and nose. Everything hurts, everything is tired, and I am so tired.

Blood tests:
ANA was positive- though SED rate at last check was only 11.
Double stranded DNA negative
Low white blood cell count (no answer given for this)
Low T3, mildly low TSH AND T4

Thank you for reading... if you recognize anything familiar, please speak up :)

Sorry for the epic length!
Lyrica, Plaquenil, Klonopin

If you aren't in over your head, how do you know how tall you are?
T.S. Eliot

What doesn't kill you makes you funnier.

New Member

Date Joined Mar 2011
Total Posts : 8
   Posted 3/24/2011 10:06 PM (GMT -6)   
Have you had a magnesium level test? Many of yours are also symptoms of low magnesium (constipation, seizures, migraine, muscle twitches, muscle tension, heightened pain sensitivity, immune system dysfunction, low thyroid hormone levels, anxiety). It would be an extremely easy supplement solution to try -- under doctor supervision, of course. I would be very interested to learn how Mg affects your condition. Good luck and God bless!

New Member

Date Joined Mar 2011
Total Posts : 1
   Posted 3/31/2011 12:59 PM (GMT -6)   
I am so sorry you have to deal with this.  I have been dealing with CFS for about 25 years, so I understand.  I also have had chronic EBV for that amount of time.  There is a product called Monolaurin(I used the one made by Cardiovascular research) that has alot of research behind it.  It destroys the lipid layer of the virus.  I took this supplement for six months (6 300mg capsules each morning on an empty stomach) As with any antiviral, a herxheimer reaction is always to be expected. It has helped me completly clear an HPV infection and I am still waiting for tests on the chronic EBV. I would also suggest that you seek the advice of a good practioner of Chinese herbal medicine. I truly hope that this information can be of some help to you.  I am at least happy to hear that you have a supportive family, that is a great help.  I only wish that I was that lucky.  I have a family that completly does not get it and tries to convince me that I only need to get out more!  Having been in the park service when I was younger.I can't imagine why they would think that I just decided to play sick.  Crazy.
Good luck

New Member

Date Joined Apr 2011
Total Posts : 13
   Posted 4/27/2011 8:28 PM (GMT -6)   
So sorry to hear that all this is going on with you. I have so many of the same symptoms, the "zapping" which is not only terrifically unpleasant, but very painful as well. I've always attributed that to my neuropathy, which is quite severe (are your legs and/or arms consistently numb, lost most of their feeling?). I too am all over the forum, because my fibro. and other diagnoses just doesn't seem to cover all of what I'm going through- I've met quite a few people with fibro, and while they have their problems, they are all functional, able to work, have social lives and don't seem to have near the fatigue problems I've recognized in myself.

I have a friend with MS, and some of what you describe sounds like it may be. I also think Lupus. A good Rheumatologist should be able to figure it out.

Much of what you describe does sound like fibro., though, the heaviness of the limbs and the way no amount of rest or sleep and no med.s ever help. I think the best thing you can do is find a GOOD doctor. If you aren't happy with yours, "fire" him/her. It finally dawned on me the other day when I was mentally comparing my current good doc. with my previous really crappy one, and the crappy one had her own practice, no other doc.s around, no one she had to answer to. So who is her boss? You might think "no one" but then think, who is putting money in her bank account, who is the source of her "pay check"? You are. Ergo, you are the boss. If your doctor is less than responsive, respectful and attentive, fire him/her. Don't wait around for them to improve, they won't.

The best to you,
Have Fibromyalgia, Polyneuropathy, Hep. C, rheumatoid arthritis
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