Chronic weird bothersome symptoms, Docs can't figure them out.

[bweb]

I have had strange symptoms, with the common denominator of fatigue for the past several years.  I have been checked for ulcers, lower bowel problems, had blood tests, and even most recently an MRI of the head.  Finding always come out normal.

I am continuing to suffer and it is affecting the family.  Symptoms are fatigue, sometimes almost passing out, lately a lot of pressure behind eyes (not sinuses, had them checked too), sometimes nausea...I am not depressed. I kind of feel like I am "poisoned"...just not right.

Any ideas, anyone?  I am thinking maybe that a nerve or blood vessel is being crimped by a problem in my neck or something.
At wits end...appreciate any opinions.

bweb.

[PGB]

I just noticed the new ENT forum, which I am assuming opened today since I never noticed it before, and posted on there.  I sure hope I get some new ideas to try because I am just about to reach the end of my rope here.  Don't know how long I can stand to live like this.  I never felt like this before.  I would rather have the painful contractions of childbirth than this!  At least they came in waves and I had tiny breaks in there!  

Don't worry about the typos!!!  I finally quit proofing my posts and decided if it was something someone couldn't decipher they'd question it!!!!  

I really feel like a baby when I read the other posts (yours included).  There are a lot of people on here with a lot of much more serious illnesses than what I have and they don't whine and cry as much as I have been.  What does that say about me?  Don't think I like to think of myself like that, so I am going to try to do better.  Sorry to everyone!

[PlateletGal]

Dangit.. I keep doing it. I meant EARS, not EYES. Can you tell that I have cognitive problems? LOL !

[PGB]

Hi again.  Yes, I have tried many different pain meds.  The last one I got was vicodin 500mg.  Since I got laid off a few weeks ago and lost my insurance I'm not sure what I will do when it is gone except go crazy.  Or crazier as may be the case.  Thanks for responses and advice.  I am going to try to take a nap before my children get home and we have to do all that homework and get hubby off to work and cook dinner.  No rest for the weary!  Or the sleepy who were up all night hurting!

[PlateletGal]

Do you take any painkillers for your symptoms? Also what may help is massaging the points under your eyes and massaging your chin and sides of your jaws.

Good luck !

[PGB]

I know I keep going on and on about how bad I am hurting, but this is just unreal.  I have taken enough Advil and pain med. that I feel sick.  And I can still feel every beat of my heart in this knot under my ear and in my ear.  This knot starts right up against my jaw bone and goes back toward the back of my head one and a half inches.  It starts right against the bottom of my ear lobe also.  I can only describe this as the intense pain that I had when both ears were infected at the same time or when I had 2 teeth abcessed at the same time.  I hurt so bad that I can not sit still.  They say that TMJ is caused by stress (clenching jaws which I do a lot and grinding teeth which I also do a lot) right?  What do you do about it?  As I said previously, I am no longer working so my stress load has decreased A LOT.  The rest of my stress is things I can't change, so how can I deal with the TMJ?  Don't mean to keep rambling on so, but I am really trying hard to get my mind on something else.  And loving soul that he is, my husband can't understand.  Of course considering the time and he has to be up so early, he's also in bed asleep.  Which is where I need to be.  And where I would love to be.  But, there is no relief in sight, again tonight.  I don't remember the last time I slept the whole night, before this, I just had plain insomnia.  For the past several years I have woke up at least 3 times a night and couldn't go back to sleep for an hour or longer at a time.  Sorry this is so long.  Will try to do better in future posts.  And will try not to use you to take my mind off of my pain any more either.  Boring for you, huh?  Take care.

[PlateletGal]

P.S. - You can do a google search for "CFIDS" + "Addison's disease" and read information about how CFIDS is just like Addison's disease. Addison's disease occurs when the adrenals completely fail to produce. They say CFIDS is like a mild case of Addison's... but much harder to treat.

[PlateletGal]

You are right when you say chronic fatigue syndrome is real. I was just reading last night that Dr. Paul Cheney had found that all of his CFIDS patients' have all had abnormally low uric acid levels. Most people's uric acid levels are 4-6 and CFS patients' are 1 or 2. Mine is 2. Uric acid levels are also extremely low in people who have MS. 80% of people who have CFIDS are undiagnosed. I think that is why we see so many people here with symptoms that could be from CFIDS.

I don't know what treatment you are on, but I thought I would mention that Dr. Paul Cheney has a treatment plan on the internet. Go to google and type in "Dr. Paul Cheney" + "treatment for CFIDS". Most of his recommendations are supplements. Also, licorice root will help the fatigue. It is available in liquid form and it actually helps your adrenal glands. CFIDS affects the adrenals, causing patients' to have more stress, inflammation, allergy problems & fatigue. Of course I would talk to your physician before trying any of this. If worse comes to worse, you can nuke CFIDS with the Marshall Protocol like I am.

[PlateletGal]

"And if so, why is it that everything else seems to be a little bit better since I'm not working any more therefore, stress is reduced. Any ideas?"

That makes perfect sense and the licorice root should help when you are stressed or physically worn down. The CDC recently found that the DNA code in people with CFIDS is different in genes that are important to the immune and sympathetic nervous systems - mainly to the three genes related to the hypothalamic-pituitary-adrenal axis. Therefore, when you have anything that wears or tears your body, including stress, your symptoms are worse.

CFIDS affects the nervous, immune and endocrine systems. It affects everyone differently... some people are lucky enough to recover; others don't and some get progressively worse.

[PGB]

Hi.  Thanks for the info.  I will be checking into it.  Is there a connection between TMJ and CFIDS?  I was diagnosed recently with TMJ and like the CFIDS I have good days and bad ones.  Today, for example, is an extremely bad day for it.  I hurt and ache in my jaw, neck, and ear so bad that I have literally been sitting at home by myself like a 33 year old baby crying most of the day.  I have taken my meds but they just don't help sometimes.  I have also taken a lot of Advil as another poster on here told me that it helped her in large doses.  Like my prescriptions, it helps sometimes and sometimes it doesn't.  I'm wondering if there is a connection between the 2?  And if so, why is it that everything else seems to be a little bit better since I'm not working any more therefore, stress is reduced.  Any ideas?

[PGB]

I am looking into the MP myself since posting on here and reading everyone else's posts.  I have never heard of it before today!  (Being in the back woods of rural Mississippi, it takes us a little longer to catch up to the rest of the world!HA HA)  I'm not sure if it is for me or not.  But it does bare thinking long and hard about.  I recently got laid off from my job and just in the 2 weeks I haven't been working I have started to feel a lot better.  The stress at work, having 3 kids, and my husband being a full time firefighter who works 24 hour shifts was just about to get me down for the count.  I didn't realize the stress was as bad as it was.  I had (and still have)  swollen sore glands in my neck.  Trouble sleeping.  And when I did sleep, I didn't feel rested the next morning.  The tiredness was unbelieveable.  I would literally fall asleep sitting up helping my kids with homework, but when I went to bed I would lay there awake for hours!  Chronic Fatigue is very real and without treatment, I believe it would have ruined my life completely.  Hope you get some help soon and get to feeling better.  Keep us posted on how you feel and if this is really what is wrong with you.

[PlateletGal]

I forgot to mention that I'm also on the MP, along with Hityty. My physician had two other CFIDS patients' who he prescribed the MP for and both of them are 95% better. There is a lab test your physician can order to give you an indicator of whether or not the MP would help you.

[PlateletGal]

I'll jump in here too, since I also have CFIDS! The good news is that there is a lab test (not approved yet, but in the works) available to diagnose CFS now. ( Red Labs USA  - they have an internet website ). Recently CDC researchers' discovered that the DNA code in people with CFS is different in genes that are important to both the immune and sympathetic nervous systems - pointing, in particular, to three genes related to the hypothalamic-pituitary-adrenal axis, which affects stress response. All CFS volunteers had a high allostatic load --- basically, cumulative wear and tear on the body resulting from inadequate biological responses to the environment as well as physical & emotional stressors. I think that is a reason why people should get treated for their symptoms as they come.. just my opinion.


bweb,

I rarely had the sore throat and didn't have the painful glands. Every case, they say, is different. To make a diagnosis for CFIDS, you must have 4 out of 8 symptoms:

Weakness and exhaustion, lasting more than 24 hours, following mental or physical activity
Unrefreshing sleep
Substantial impairment of short-term memory or concentration
Muscle pain
Pain in the joints, without swelling or redness
Headaches of a new type, pattern or severity
Tender armpit and/or neck lymph nodes
Sore throat

In my case, I had other abnormal labs because my adrenals dysfunctioned. I also have high ANA titers.

[Hityty]

Hi, I was also thinking Chronic Fatigue Syndrome (CFS/CFIDS), also maybe Fibromyalgia (FMS). It's amazing how hearing that our test results are "normal" is not a good thing. Boy do I understand that!!! FMS & CFS used to be the cop-out diagnosis, but more and more doc's and sufferers are realizing how real and troublesome they are.
There are lots of treatments now too, though most are treatments of symptoms (as said already), and many benefit from these treatments, however, many do not, or the positive effects ware off eventually. BUT There is a new treatment called the Marshall Protocol (MP). It addresses MANY illnesses, including FMS & CFS/CFIDS. I've had FMS/CFS for 15 years, and other problems, and the Marshall MP is the first thing that has addressed the cause and is a curative therapy, not just a treatment of symptoms. I've been on it since August and I've seen for myself that it IS working, it's long term, I'll be on it for a couple of years, but who cares, its better then being sick for the rest of my life with people telling me I'm normal, when I know I'm not. Please check into the MP, K! Keep us posted, and in the meantime, know you guys are NOT alone!

[bweb]

Gee thanks so much for responding...I feel better knowing someone seems to understand what I am going through...yes, I don't feel depressed, but I think my wife does not agree there.

Regarding CFS, I noticed that you have to have certain symptoms, like a sore throat and swollen glands...I don't have those...could I still have it?

I will also check into the MP.

[PGB]

Hi.  This may or may not be what you want to hear, this sounds a little like some of the symtoms I had and my doc diagnosed me with Chronic Fatigue Syndrome.  He also told me that you have to treat the symptoms.  To rest whenever I could and needed to.  I also said that I wasn't depressed, my husband disagreed of course, but my logic was, well maybe I am, but of course who wouldn't be when they have been feeling like this and hurting for almost 6 monthes?  They also started me on Cymbalta, which is an antidepressant that also helps with chronic pain.  I feel MUCH better since starting it.  At first I thought that was what they were calling it because they didn't know what else to call it, in other words the doctors were as clueless as me.  But now I am wondering if MAYBE he was right and I was the one that was wrong.  Hope you find answers soon.  Feel better!