Help I am not sure on diagnosis - Fibromyalgia Message Board

franbie · 03-02-2006, 03:12 AM

I have been in terrible pain for five years now. It all started at age 47 a gland became swollen on the right side of my face. I went to the dentist thinking it was an abcess and she said she thought it was a lymph node, anyway she gave me some strong antibiotics which did not work. To cut a very long story short I ended up in the emergency room at the local hospital where they decided to operate and took out my submandibular gland. After this I ended up back in hospital twice with bad infections in the same area and had to go on antibiotic drips.

Now my face is permanently swollen and my neck muscles are very noticably knotted. Over the years loads of other problems have come up and I saw a rhuematologist the other day who says I have fibromyalgia. I have looked into fm and can see that I match a few of the symptoms mentioned there, but there are some visable symptoms that I can not seem to place eg:

Swollen gland right side of face
Discoid rash around ear
Thread vein rash on face
Swollen lymph node in right groin
Ear discharge
Loss of weight
Ulcers in mouth nose and right eye
Hair thinning
Psoriasis on scalp
Purple patch rash on palms of hands
Permanent red sore throat
Blood type freckles on torso (vasculitis?)
Pitted thumbnails
Muscle athrophy on right shin and right arm
Rash when been in sun
Very bad reaction to insect bites

Can any one help? has anybody else been able to connect any of the above with fm? Some other problems that I can not place which are not visable are pain in my right rib area, and in the right side of my tongue. I also have gritty eyes and a very bad thurst.

When I was younger I had glandular fever and was told by a doctor that I had growing pains. I also have had thyroid trouble. (Just shoot me now!)

Sorry to go on but I am soo desperate after all this time. I am sure from what I have read so far that people here will understand where I am coming from.

Glojer · 03-02-2006, 05:02 PM

Welcome franbie,

Some of the symptoms you describe sound like some of the symptoms of lupus which is another autoimmune disease and some sound like thyroid problems which is also autoimmune. Have you seen a good rhuematologist maybe they can help you with the lupus like symptoms. We have a few people on this board that can help with some of those symptoms. I understand how difficult it is to get health issues worked out when they are of different origins.....never give up!

Glojer

franbie · 03-03-2006, 04:28 AM

Thanks Glojer.

Yes I believe the rhuematologist is a good one. He did take some blood to check my ESR, ENA, dsDNA and Crinase. This should all come back in about two weeks so hopefully I will at last have some answers.

Franbie.

moonspirit · 03-04-2006, 07:44 PM

make sure you ask for specific blood samples. it doesnt sounds at all vascular. if i were you from my own experience i would ask for these blood samples....ANA, ANTI DNA, ANTI MITROCHRONDAL, GAMMAGT, from the result of these samples, they can do more profiling from a second batch of your blood which will check for such things as polynodosa etc. which will rule out vascular, artery/vein diseases. it does take about 2 weeks and it can take longer for other profiling of further blood sampling. but worth the wait. more profiling samples can give them the exact clues they need to point to the specific type of problem you have. good luck and don't give up until you find a doc who does these sampling for you. if you are already taking meds for pain or inflammation make sure they know this. autoimmune screening is not done as a standard where i am, so ask, if they find positives they will send you to a rheumatologist...light at the end of a very long tunnel. then you can pick up your positivity and run with it, spiritually speaking. my rheumie was my 3rd specialist after an osteosurgeon and a neurologist, the rheumie would have been my first specialist if these bloods had been sampled years ago. we live and learn....but do they. go see doc...go girl.

montereychic · 03-04-2006, 10:39 PM

Hi Franbie,

I'm so sorry to hear of all that you've had to endure.

I suffer from fibro and have off and on for ~15yrs. I have had many tests and misdiagnosis. I was told I had lupus, then no, I didn't. I was told I had MS based on MRI scans of my brain, then No, I didn't. So needless to say, I have been through the ringer on this one! I am also a scientific researcher by trade, and thus have done a lot of my own medical research. Your details could be related to fibro, but sound more autoimmune to me. In fact, they seem to overlap with a couple of disorders, and you may have more than one! You mention a lot of swelling in the region of the surgery... you can have a problem with lymph draining when nodes have been removed. This is best addressed by a surgeon, who would be familiar with this condition and could treat it. It can be quite distressing. Also, the fact that a submandibular gland was removed is interesting. If they just found inflammation in the biopsy, a condition known as Sjogren's syndrome ( a treatable autoimmune disorder) is a possibility. Sjogren's also usually presents with dry mouth and dry eyes. Also, some of your symptoms are classic of hypothyroidism (hair thinning, etc). You say you have thyroid trouble... this needs to be treated and stabilized. Lupus is also a possibility, and as another poster says, several tests can be done. The ANA test is a screening test for Lupus, but is not specific, and can be abnormal in a percentage of the normal poplulation, as well as in fibro sufferers. Anti-DNA is more specific for Lupus, but you can have Lupus and a normal anti-DNA test. The most helpful test for you would be the ESR- commonly known as "sed rate". This test can be mildly positive for any inflammatory response in the body, even the flu. BUT, it is usually VERY high in those suffering with a flare-up of an autoimmune disease. The best time to take this test is when you are feeling the worse. For me, this was the clincher that I did not have Lupus. I was in pain, fatigue, barely able to move, and my sed rate was normal (actually a little on the low side of normal). This is typical of most fibro patients.

Again, remember that often times there are more than one thing contributing to a list of symptoms. Rash and pain may be a flare-up of shingles or herpes type of infection, which could be happening because the immune system has been lowered by autoimmune disease. Like a domino effect. When you talk to the Rheumotologist, focus on the timeline of symptoms, not just a list. In what order did they appear? That is how I would talk to the dr.

Good luck,

Montereychic