LINZ and JenX - Fibro Question
#106335 - 09/16/04 02:38 PM
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Tissy
Reged: 07/15/04
Posts: 773
Loc: Baltimore, MD
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Linz and JenX,
Sorry this is a long Post! But thanks in advance for your help.
Linz, I looked up the Fibro thing you mentioned in a previous post to me. You told me to check w/ doc about it due to my overwhelming fatigue.
Here's the problem it took me seven years to get them to diagnose me with IBS. I got my official diagnosis with tests to rule out other diseases just last month. Other docs chalked my symptoms up to IBS but never did the tests to rule out other diseases. So they will probably think I am a hypocontriac (sp?) if I suggest that something else may be wrong with me.
I looked up the symptoms for Fibro and here are the things I may have in common:
-Tension, Sinus, Migraine Headaches frequently (followed by nausea)
-Extremely fatigued
-Can't get to sleep, wake up exhausted
-Leg cramps awaken me at night
-Used to remember everything now forget short-term things
-Frequent Urination
-Always Freezing-Can't get warm unless outside and it is above 80
-Numbness and tingling of hands if I overexert myself
-Super sensitive skin to touch (either tickles or itches if touched)
-I thought I was depressed b/c I don't seem to have the get up and go to do anything anymore, I have to force myself to move and get things done.
However, I do not get extreme pains in the tender areas when I applied pressure myself, it did feel moderately tender but not painful. (I am also not a doctor I know) But since they call them tender areas this is probably normal.
I do get what I would describe as pulled muscles in my neck, lower back, shoulder blades, and butt. But this is maybe once a month. I usually can't figure out how I did it, I wake up with it and think I slept in a bad position or something. The pain is a mild discomfort, not severe.
I get tension headaches that hurt the base of my neck at skull, shoulders,and shoulder blades. I get sinus headaches with pain behind eyeballs or above eyeballs.
My point is my pain is not severe and not everyday or every other day even. My whole body doesn't ache at once, just sections at a time. And all the syptoms I described above can be stress related and normal for a person to have w/o an underlying problem. I mean I could probably compare my symptoms to a number of diseases and get a 75% match, and have nothing wrong with me. I never gave any of the above symptoms a second thought and attributed them as normal due to they are not debilitating and I can cope with them as they happen. Combined they are not an everyday occurence. Although some of them are an everyday occurence. The main syptom of Fibro muscle/joint pain is not everyday for me and I would only describe it as mild discomfort like pulling a muscle, which it could be.
So, Linz and JenX, my question is what do you think? What are your symptoms? Do you have severe pain? And how did you go about getting diagnosed? Should I bother with my General Practitioner or go to a specialist?
Jen, since your in MD can I ask who you got diagnosed by and how?
Thanks Guys,
Christie
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Christie
~Hoping and Praying for Sleep!~
Edited by Tissy (09/16/04 02:39 PM)
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Hi, Christie! I also have fibromyalgia so maybe I can answer some of your questions. From your description it certainly sounds like a strong possibility that you have it. You're not depressed, you're just exhausted! I have a confirmed diagnosis from a rheumatologist (although my primary care physician diagnosed it first) and I don't have extreme pain at the tender points, they're just tender like you said.
The biggest clue is that you are waking up exhausted. This is called non-refreshed sleep and is due to a fibromyalgia related sleep disorder called the alpha-EEG anomaly. It means that although we seem to be asleep we never reach the deep delta wave stage 4 sleep that our bodies need to heal from the damages of the day. We keep having bursts of alpha waves intruding just as if we were awake.
The fact that this sleep disorder can be easily treated resulting in enough improvement to be worth it (not 100%, there's no cure), is the main reason I would strongly encourage you to talk to your GP about it.
Good luck, sweetie, and let us know what happens, okay?!
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Laura
Keep it simple!
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Thanks Laura Sue! I guess I will call my GP but like I said I just hate to be labeled as a nut case or head case. I got that feeling during my diagnosis of IBS until I found a good GI who sympathized with me. (A woman of course!)
Christie
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Christie
~Hoping and Praying for Sleep!~
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If there is no cure is there any point in getting diagnosed? Are there things I can do to help me feel better? What will a doctor be able to do for me? Are there any medications that can help? Like I take NuLev for my IBS and Nexium for my GERD. Or do you just have to cope? That's waht I have been doing with this darn fatigue and laziness feeling.
Thanks Again,
Christie
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Christie
~Hoping and Praying for Sleep!~
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Doctors are taking fibromyalgia more and more seriously. There's new research all the time about how it's a central nervous system disorder and has nothing to do with psychological problems. Your doctor may very well be up on it. It's worth asking because there ARE treatments that can help. Like I said before, getting the sleep disorder treated will result in significant improvement in the fatigue (NOT laziness at all -- it's actually been proven that the mitochondria in our cells aren't making enough energy, like an airconditioner in a brown out). You'll be amazed when you realize just how sleep deprived you are.
So for that reason alone it would be worth talking to your doctor. There are things you can do in the meantime with OTC meds. Try taking two Benadryl or the equivalent before bed. My doctor and her husband both swear by it. You get some dry mouth but it does promote stage 4 sleep that you need. The next stronger sleep med is Elavil, which was originally an antidepressant but now is used for many other things. It also helps with the stage 4 sleep. Then the next stronger after that are Ambien, Sonata, Remeron (sp?) and others. So there's a lot your doctor can do.
For the aches and pains, there are stronger prescription painkillers that are not addictive and don't make you dopey. IMHO the best one is tramadol or Ultram. I take it with Extra Strength Tylenol. It doesn't get rid of all the pain but it sure knocks the edge off!
And do you take anything for your migraines? (BTW, recent studies have shown that most sinus headaches are in fact migraines!) There are some new wonder drugs for migraines call triptans -- Imitrex, Relpax, etc. You might have to try different ones to find the best for you, but it's WORTH it. I feel MUCH better fibro wise now that I got my migraines under control.
So NO, you don't have to just cope. There's lots and lots of things that help, even though there's no cure. Just like with asthma or diabetes. There's no cure for those either but there's lots of meds and other ways to manage them.
And there are other things you can do on your own to feel better. I highly recommend doing a search on the internet. There's a number of excellent websites with really good suggestions on different types of exercises or meditation that can help. Also, the drug companies have finally started some research on fibro meds so there will be lots of new treatments and (MAYBE) even a cure in the next 5-10 years.
So DON'T give up!! 
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Laura
Keep it simple!
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I gotta tell ya lady you are like a fountain of knowledge! I really appreciate you giving me all this info. I will call my doc tomorrow and see what she says.
Again Thanks So Much 
Christie
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Christie
~Hoping and Praying for Sleep!~
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Good luck with this Christie. It does sound awfully like you have Fibro, you poor thing! Like LS said, although there isn't s cure, there are loads to things that can help with symptoms (kinda like IBS! ). And the non-refreshing sleep is the easiest thing to treat!
I like Fibrohugs but there are loads of websites on this. Just be very sceptical of some! 
Btw, for about 8 years, my Fibro symptoms were very intermittent, so not having the pain everyday has nothing to do with it! Also, remember that having IBS along with the other symptoms is an indicator of Fibro in itself.
I'd go to your GP and talk to them about this. If they're not sympathetic, ask to see another doctor. Fibromyalgia Syndrome is a recognised illness, so it's not acceptable for your doctor to not take you seriously. Some GPs will diagnose Fibro, some will need you to see arheumatologist before you can get a diagnosis.
Good luck! {{{{HUGS}}}}
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My god, I have some of those symptoms too. I ALWAYS wake up exhausted and even went for an overnight sleep study. They didn't find anything unusal at all. Plus I'm always fatigued but just thought it was the IBS.
Is there a test they do to tell is you have fibro?
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Not really I'm afraid. It's diagnosed mainly from your symptomology and history. They do do a tender points test, poking 18 spots on your body. 11 or more as tender is a good indicator it's Fibro, but it isn't a definitive diagnosis.
Check out Fibro symptoms on the Fibro hugs site. Or Fibro diagnosis on the eFibro site.
Your non-refreshing sleep, fatigue, IBS and GERDs are a damn good possible for Fibro I have to admit. Eeek!
Good luck.
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Thanks Linz.
Yikes.  I do have many of those symptoms. One main symptom that I DO NOT have is muscle pain. I don't get soreness anywhere excpet my jaw (TMJ).
But if I do have this, I've had it for the past 5-6 years, if not longer.
Thanks again for those links. I printed it out and will show my doctor and see what he says.
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Christie, You're very welcome, sweetie pie! That's what we're here for!!
I also agree with everything Linz said, BTW.
Tina, sounds like you might have it too, unfortunately.
OH! The biggest reason for diagnosis and treatment early is the prognosis for improvement and even remission is much greater the younger you are when diagnosed!
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Laura
Keep it simple!
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Hi Laura Sue. Is fibro that terrible to have? It seems like there are a few people here with both.
I'll mention it to my doctor. Hey, maybe it's good that I'm finally putting real names on all these thing that make me feel crappy. There's got to be a light at the end of the tunnel somewhere, right?
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No it's not terrible to have. It's not like cancer or multiple scelrosis (sp?) or even as bad as rheumatoid arthritis. It's just another chronic medical condition like asthma or IBS that needs managing in order to feel your best.
And yes, there's a definite overlap in people with IBS and fibro as both are related to dysfunction of the autonomic nervous system. Conveniently what helps one often helps the other!
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Laura
Keep it simple!
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Thanks! You're always so positive!
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