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Old 10-23-2010, 03:12 AM   #1
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Facial pain/numbness

Hi to everyone

Been floating around the boards for a short while (a few months) trying to figure out like so many others what the hell has gone wrong with me. Initially I had mild anemia, which after the last blood test and no word from the results, appears to have sorted itself out. Since early July and after a lot of physicial training for a charity run I developed fatigue and muscular/nerve pain around the body. Amongst the pain that we are suffering does anyone else have facial pain with numbness which comes and goes during the day - some days it disappears and then comes back. I will be seeing a neurologist in late December.

Another thing is I know that I am going to have a painful day when my left thumb joint is very sore first thing in the morning. Still managing to maintain work as a cleaner and carer and determined to keep going. I keep getting depressed very easily which has happened since the aches and pain.

Had a full blood investigation in July which initially throwed up mild anemia and a false positive for some sort of auto immune problem which the dr dismissed as 'one of those things' (nuclear something or another?). Been put on 10mg of amiltripalin (forgive the spelling) for the nerve pain which isn't helping much.

Sorry for the lengthy post.

Clare x

 
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Old 10-23-2010, 09:32 AM   #2
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Re: Facial pain/numbness

Anemia is one of the symptoms of Lupus. The positive ANA (antinuclear antibody) test is usually indicative of Lupus as well. I also presented with a neuralgia (nerve pain) and mild anemia when I had my first big flare of Lupus. I would suggest you investigate it further. You can also have a combination of connective tissue diseases, so you may have a multitude of symptoms that don't fit into any one condition. I found heat to help with the nerve pain. Question: What made your doctor think that it was a false positive?
Hope you find your answers soon,
Best Regards,

Last edited by hb-mod; 10-25-2010 at 07:34 AM. Reason: Removed Quote. Please use "QUICK reply" rather than "QUOTE reply". Thanks!

 
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Old 10-23-2010, 10:47 AM   #3
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Re: Facial pain/numbness

Hi Sunsetnan, yes you have it right - it was the ANA that came up as a 'false positive'. My dr said the positive would be further investigated but she said it is a false positive. Would be interested in what you have experienced Sunsetnan, any viewpoint is valuable. Take care and hugs. Clare x

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Old 10-23-2010, 01:08 PM   #4
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Re: Facial pain/numbness

When I was at my worst, I had facial numbness. The doc also dx'd trigimenal neuralgia which affected the right side of my face. The numbness would come and go as you have described. During this flare, I would have trouble with my tongue going haywire - sort of like it had a mind of its own (scenes of Exorcist comes to mind, LOL), and I would have trouble with biting my lips/tongue. Sometimes at night my jaw would involuntarily snap shut, which sometimes hit whatever was in the way while I was lost in restless sleep (lips/tongue). I went through a lot of botox therapy combined with cortisone injections. A human pin cushion was I during this era . But it all helped and I no longer have these issues.

Kirstee

 
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Old 10-24-2010, 02:03 AM   #5
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Re: Facial pain/numbness

Hi Kirstee, the tongue thing must have been an absolute nightmare! Great news you have it under control now.

My jaw has developed a vibration feeling on biting my teeth together - subtle, but it has the feeling of the teeth shaking together on the bite. I have TMJD which messes up the right hand side of the jaw - the muscle twitching on that side was one of the first symptoms I noticed back in June. Drs love telling us it's stress but I've had a hell of a lot worse stress in my life before this all started.

Take care Clare x

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Old 10-24-2010, 11:37 AM   #6
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Re: Facial pain/numbness

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Originally Posted by Clare1975 View Post
Hi Sunsetnan, yes you have it right - it was the ANA that came up as a 'false positive'. My dr said the positive would be further investigated but she said it is a false positive. Would be interested in what you have experienced Sunsetnan, any viewpoint is valuable. Take care and hugs. Clare x
You know, now that I think back, I did have some facial numbness. It was quite awhile back and I remember touching the side of my face off and on for several weeks testing it to see if it had gone away. I related it to sinus problems.

I have muscle pain in my TM joints when I'm in a FMS flare. My dentist usually puts a rubber block in my mouth to help. I had to stop the hygienist half a dozen times during my last cleaning until my jaw muscle relaxed. My TMJ also has become dislocated on 3-4 occasions. I could barely open my mouth and had to eat soft food. I also have degenerative arthritis in my jaw, so that doesn't help.

Just had to have a crown re-done. My dentist said that it was due to trauma on that side- maybe clenched teeth. I've been under a lot of stress, but don't think that's the case. I also have a crooked jaw/ bite. The dentists haven't been able to determine why- some genetic thing. I had braces on my teeth when I was in my twenties and that helped correct my bite, but it's still not centered. I think that is more the cause.

My sister had Bell's palsy (numbness and paralysis of the face) years ago after having a bad ear infection and she still has a crooked smile because of that. I had numbness/ weakness on my left side after having a brain stem stroke, and still do have some remaining from the waist down on that side.

I had a case of mild anemia once, but a friend of mine who has Lupus would have it quite often. It got so bad, she had to have blood transfusions every so often because of it.

I've heard of a false positive syphilis test that was indicative of Lupus, but never a false positive ANA. I do know that some healthy people have elevated ANA titers for whatever reason. But, if you are symptomatic and have an elevated titer and a specific pattern, I would think that she might suspect Lupus or some other autoimmune disease.

My sister used to get a trigger finger that sounds similar to your thumb problem. She would give it passive range of motion exercises, and eventually it went away. You could also have some type of arthritis on top of everything else. My doctor says I probably have a touch of every kind- OA, RA, etc.

I have had a lot of problems with my Lupus and Fibromyalgia over the years. It has been an interesting life, to say the least. If you are interested, I would be glad to converse with you concerning the subject. I peruse the Lupus and Fibro boards frequently, so you can find me there.
Best wishes for better days ahead,

 
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Old 10-25-2010, 02:05 AM   #7
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Re: Facial pain/numbness

Hi Sunsetnan, thank you for sharing your background. Although everyone is different in experiences and sensations, I can pick out things with which you are saying and totally relate to them. The Fibro is probably a sure bet for me and something I will have to learn to deal with. Everyday is different, the pain does wax and wane. It's cold here in Bristol, UK at the moment which I suspect is making the pain worse. Does the cold make things worse for you? Face, hands and backs of the thighs are most bothersome at the moment. How are you feeling today? Hope you are ok. Clare x

 
Old 10-25-2010, 12:13 PM   #8
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Re: Facial pain/numbness

Please read "Could it be B12?" and get proper testing done, including UMMA and anti-Intrinsic factor antibodies. B12 serum level tests are CRAP, and if your face is going numb you're a likely candidate for Pernicious Anemia, which has nothing to do with your iron levels. Get on it ASAP, please, I just diagnosed myself, doctors are NOT aware enough about this problem, I've lost 10+ important years of my life and want others not to do the same...

 
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Old 10-25-2010, 01:55 PM   #9
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Re: Facial pain/numbness

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Please read "Could it be B12?" and get proper testing done, including UMMA and anti-Intrinsic factor antibodies. B12 serum level tests are CRAP, and if your face is going numb you're a likely candidate for Pernicious Anemia, which has nothing to do with your iron levels. Get on it ASAP, please, I just diagnosed myself, doctors are NOT aware enough about this problem, I've lost 10+ important years of my life and want others not to do the same...
Hi ard164, thank you for your reply. My mother has pernicious anemia and has injections which help her greatly. I have considered B12 deficiency and have been very recently retested for it (upon my insistence) and have had no word back from the dr so I am assuming it is in normal range. My last B12 score that I saw a little over 3 months ago was just over 300. I have been taking sublingul B12 tablets for 2 weeks to see if they will help. I hope you are improving with your health. Take care. Clare x

 
Old 10-29-2010, 08:13 PM   #10
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Re: Facial pain/numbness

I haven't been diagnosed with fibromyalgia, but I do suspect something is going on. This is the first post I've seen that appears similar to what I'm dealing with.

I've been dealing with numbness in my nose and both ears since last May. The doctors haven't figured it out. My ENT told me last month that it just happens for some people. My Neurologist seems to agree that it is a possibility.

I was diagnosed with TMJ during this last year and began treatment with a repositioning splint. They don't think that the TMJ is causing the numbness though because my numbness is bilateral. My primary TMJ symptoms are ear stuffiness and muscle pain/spasms/tension in my cheek, ear, neck, shoulder and back. It has also thrown my body out of alignment and I've had hip and knee problems as well. The TMJ spasms can really affect quality of life at times. Orofacial releases have been helping some, but it is difficult to afford since insurance won't cover the cost of the visits I need.

I also found out I had anemia last August. I've been able to bring my results back up with iron supplements though. My B12 is showing as normal.

I had my first Neurology appointment last week. (Dealing with possible viral Meningitis.) He looked at a brain MRI I'd had done for my ENT. The Radiologist had reported back it was normal, but the Neurologist said there was a bit of inflammation. I'm waiting for results from a repeat brain MRI, a cervical MRI, a MR Angiogram and a MR Venogram. He at least is looking for a cause for the numbness even though he isn't necessarily expecting to find something.

I had labwork done as well last week. It showed an ANA titer of 1:640 homeogeneous. I know that isn't normal, but have to wait a couple weeks to hear back from my specialist. It is concerning to me though.

 
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Old 10-29-2010, 08:55 PM   #11
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Re: Facial pain/numbness

MountainReader: Are you familiar with myofascial self-release techniques? The "Trigger point manual" is the one thing my mother bought in her fit of "buy things to fix it" that REALLY proved helpful.

 
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Old 10-29-2010, 09:16 PM   #12
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Re: Facial pain/numbness

I have two books on trigger point releases. I use the Clair Davies book regularly. It is just really really hard to do two of the most useful releases in my mouth. The pterygoid one takes about 5 minutes to "release" and hurts so much I struggle to do it myself. The Masseter release is a little better, but not much.

Some of the other releases are a bit easier, but those facial ones I have trouble with.

 
Old 10-29-2010, 09:30 PM   #13
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Re: Facial pain/numbness

One thing I've learned is that on the most tender parts of my body, I can't do direct release. Either it won't work, or it'll produce so much soreness that the knots will just re-form in a day or so. I don't touch most of my neck, for example, nor do I allow anyone else to.

Instead, I concentrate on the satellite trigger points in the neighboring muscles. It gets at least a partial release with a tiny fraction of the cost in pain.

It really is amazing how it all ties together. When I go for massages, she'll be working around the latissimus dorsi, and I'll be like, "I felt that in my ear," or, "The inside of my foot just went numb. Ah, now it's gone." I call them my "Rube Goldberg trigger points" which she finds pretty funny.

It also helps to get trigger point injections into the worst ones 3 times a year or so. (Come to think of it, I'm probably past due for another round.)

 
Old 10-29-2010, 10:35 PM   #14
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Re: Facial pain/numbness

Quote:
Originally Posted by Clare1975 View Post
Hi Sunsetnan, thank you for sharing your background. Although everyone is different in experiences and sensations, I can pick out things with which you are saying and totally relate to them. The Fibro is probably a sure bet for me and something I will have to learn to deal with. Everyday is different, the pain does wax and wane. It's cold here in Bristol, UK at the moment which I suspect is making the pain worse. Does the cold make things worse for you? Face, hands and backs of the thighs are most bothersome at the moment. How are you feeling today? Hope you are ok. Clare x
Hi, Clare,
Feeling pretty good today considering. Drove a couple of hours south to get a PET scan and back today. They found some lung nodules on my last several CT scans and are making sure they're not something bad. Kind of stressed about that. I did some errands and had a nice solo lunch, visited with my sister, and came back home. More than enuf for one day!

It's just getting cold at night and early morning here in central California, and ended up being a beautiful 78 degrees today. It was supposed to rain, but it was sunny skies! My legs tend to ache in the cold. I'm like an old lady with rheumatism. I have my own "blankie" that I wrap my legs in. My little chihuahua likes to cuddle under the blankie too and keeps me warm.

I remember watching a news show that had a woman in Mexico who regularly placed a hairless chihuahua on her knees to help with the joint pain. The dog just complied. Probably loved the attention. Strange, but effective!

So, grab a blanket or a dog and keep warm! lol
Thanks. Best wishes for a painfree day,

 
Old 10-30-2010, 12:58 AM   #15
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Re: Facial pain/numbness

Hi Mountainreader, it sounds like you have a lot going on there! You are doing the right thing in pushing for answers. You seem close, good luck for next week. Clare x

 
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