Do I have Fibromyalgia?

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Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 1/27/2009 10:52 PM (GMT -7)   
I went to a new doctor today - an internist.

He looked at some records of my problems and
said, "All you have is Fibromyalgia. Did you know
that?"

I do know that I have Fibromyalgia. I think that
I've had it almost all my life. I've kinda gotten
used to it. It makes me ache. Before all this
pain set in seven years ago I used to walk and
and walk and that seemed to help it.

I can no longer walk long distances because it causes
intense pain. You guys have heard all about my pain.

This internist said to go to the pharmacy and buy some
"Gui _ _ _" I don't know how to spell it. He said it
would stop my "Fibromyalgia"

G U I S _ _ _ ? Oh what is that dam word?! G U I S A C? (No)
It's something you can't take with Aspirin.

I'm glad this dude isn't my pain doctor. He would have
prescribed anything for this pain that often leaves me laying
in bed most of the day. I don't like him. Oh no I don't!

This is the second non believer I've run into in the past month.
It's kinda scary.

Sure ... Sure ... I had a super day.

Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 1/27/2009 11:11 PM (GMT -7)   
PS

My health conditions used to just appear. Now I will write them down
instead of deleting them.

Osteoarthritis (all levels)
Spondylitis
Myofascial Pain
Fibromyalgia
Bulging Discs
Spinal Stenosis
Constipation
Scoliosis

Are these all part of the Fibromyalgia Syndrome? Anybody know?

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 1/27/2009 11:36 PM (GMT -7)   
Did he mean Glucosamine?, by any chance
as that it is supposed to help along with Vitamin d.
I've not heard of Guisa.... though.
As to your second question"are these all part of fibro syndrome- (maybe the arthritis,but constipation, can also be due to pain meds)
and the answer is a resounding "no"
I believe that they think fibro is more of an auto immunine disease and has
been linked to CFS (Chronic fatigue syndrome) and you'll find a heating
pad now to be your new best friend..
So very sorry this doctor has dx'd you with fibro as it's not easy to deal with..
You have my empathies and lots of soft gentle hugz
The fibro forum is a good place for this question, their are trigger points for
fibro I do know that and you have to have a certain amount of trigger points
to be considered as having fibro, I believe it's around 16, I've only just been
dx'd with it for a year 1/2 now and still so new to it, too...
and yep it sucks, sorry to says...
lots of soft gentle hugz for now...
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc, Fibromyalgia, Gerd, Enlarged Pituitary Gland
******** "We could never learn to be brave and patient if there were only joy in the world" from Helen Keller *********

********>^..^<********>^..^<********>^..^<********

Post Edited (Chartreux) : 1/27/2009 11:42:48 PM (GMT-7)


Dagger
Veteran Member


Date Joined Apr 2008
Total Posts : 1522
   Posted 1/27/2009 11:56 PM (GMT -7)   
I saw your post on the fibro forum. Your doc probably recommended guifennison. It's an OTC expectorant, like Mucinex, used by some people to treat their fibro. Some people swear by it but others haven't had any improvement.

If you decide to try it, there is a lot more to know than just picking up some guif from Walmart. Depending on which expert you choose to follow, you need to stop using anything containing salicylates, both internally and externally. You can do a search and get a lot of info online. The nice thing is that it is pretty cheap. I've been told you can do it for less than $10.00/month. It rarely interacts with other meds but I'd still check with a pharmacist. You really have to commit to the lifestyle changes or it's a complete waste of time.

I'd seriously consider a second opinion and possibly even dropping this doc. Claiming that guifennison stops fibro borders on malpractice and definitely shows a lack of knowledge. If it stopped fibro, we'd have no need for a forum since we'd all be better. Plus, we wouldn't have to suffer through those terrible commercials about that woman who has to "push" herself to do her daily activities.

To the best of my knowledge, fibro doesn't cause bulging discs, spinal stenosis, scoliosis, or spondylitis. Fibro's claim to fame is that you really can't see anything wrong on any tests. It's a diagnosis of exclusion, they say you have it when they can't find anything on their tests. Tender points are really the only thing you can "test" for.

Many people with fibro are constipated but I wouldn't count that.

Personally, I'd try to avoid a fibro diagnosis. In my experience, many doctors don't believe in fibro so they won't treat you. They write you off as depressed. Many pain specialists won't let you in the door and won't treat your pain even if you can prove it's not fibro related. Other doctors start to blame the fibro for any other symptom you develop and don't want to run any tests to rule out other conditions.

Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 1/28/2009 2:11 AM (GMT -7)   
Uh Oh, Dagger,
You have confirmed my fears.
I did believe that Fibromyalgia was kind of mysterious and no medical person
really had a clue what caused it besides Depression. The doctor who takes care
of my general health needs to know the truth of my problems - my pain.
I have had many MRI's and X-Rays that confirm I have health problems that
can be visualized by radiologists or qualified doctors. (He did not see all these)
And I DO have Depression because of my pain.
Anyway, what do you suggest that I do now? Today's doctor is not my prescribing
doctor BUT he is right down the hall from my pain doctor who prescribes
the Methadone which I can't do without. (The Methadone is for pain, not addiction, of course)
Should I call this internist's office and ask politely for a copy of his report so I know
for sure? Should I just quietly leave his practice and go somewhere else? Should I talk to my pain
doctor and ask HIS guidance?
I feel like I have stepped in some kind of horror trap. Maybe it's not quite interesting enough
for King or Koontz. (I'd read it!)
Dagger, I do hope you are around to kind of give me a hand in this. (To be precise,
I will need all eight fingers, your thumbs, and your fine mind.)

Pamela Neckpain
Guifennson OTC will probably not work but I'll give it a try. I guess.
MEDICAL CONDITIONS

Osteoarthritis all levels of spine right down to Coccyx,Spondilytis,Myofascial Pain
Fibromyalgia,Bulging Discs,Spinal Stenosis,Scoliosis,Osteopenia,Chronic Constipation
Carpel Tunel Syndrome, Attention Deficit Disorder,
Depression & Anxiety

Methadone for Pain, Xanax for Anxiety, and more, of course.


kttn251977
Veteran Member


Date Joined Jul 2007
Total Posts : 554
   Posted 1/28/2009 1:22 PM (GMT -7)   
Pamela, I have been battling fibryo along with my back issues. My sypmtoms are more like a strange tingling all over, my hands often feel so sore, almost as if they are broken.... I drop things a lot due to the tenderness. The "pressure" points that were mentioned are so tender, when my dr pushed on my hip I nearly hit the floor from the pain. There are a lot of other symptoms with fibryo. I take Lyrica & Cymbalta for the management of it, and they work quite well. I think Lyrica actually has something on their website about fibryo, so check it out. They often send me literature in regards to it. I would say that the constipation is due to pain meds, I have it pretty severly, I take Senokot (OTC) overnight formula- there is a huge difference in the different types, the overnight makes me go so much easier. Hope this helps. Check out a site called diagnoseme.com..... Its a long long form, but asks everything & will give you a diagnosis. And I mean it asks everything. Hang in there!
RX's: Oxycontin 80mg 2x's daily; Oxycodone 30mg 5xs daily; Zanaflex 4mg 3x's daily; Restoril 15mg 1x; Soma 3x's daily; Lyrica 100mg 3x's daily (pain & fibro.); Phenergan 25mg (as needed); Amitriptyline 25mg 1x (chronic pain); Cymbalta 60mg 2x's daily (pain from fibro); Abilify 5mgs at bedtime (depression); Metoclopram (as needed) & Senokot (as needed).
"The most critical choice you'll ever make is the one you make about what you're going to do with this. The past is over. The future hasn't happened yet. The only time is now."
- Dr. Phil


Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 1/28/2009 3:30 PM (GMT -7)   
Thanks kttn,

I will go to diagnoseme.com but really doubt this old Mac will make it there-
it goes here to our forum and that's about it. Poor lil' Mac.

I take 4 Senokot (OTC) every night. It's expensive! But it gives relief. I
have never heard of Senokot overnight formula. Does it say that on the
box?

Lyrica and Cymbalta are too expensive for me. I am in the midst of
a financial crisis - lots of company here.

Everything??? Do you have to be honest? : - )

Thanks kttn ... later.

Pamela
MEDICAL CONDITIONS

Osteoarthritis all levels of spine right down to Coccyx,Spondilytis,Myofascial Pain
Fibromyalgia,Bulging Discs,Spinal Stenosis,Scoliosis,Osteopenia,Chronic Constipation
Carpel Tunel Syndrome, Attention Deficit Disorder,
Depression & Anxiety

Methadone for Pain, Xanax for Anxiety, and more, of course.


kttn251977
Veteran Member


Date Joined Jul 2007
Total Posts : 554
   Posted 1/28/2009 6:02 PM (GMT -7)   
Pamela, ask your dr for samples, they should have them on hand. My PCP even has samples as its becoming so commonly prescribed. Its a wonderful medication. At first it made me really groggy, but after I adjusted I was fine. And I can take some strong meds without becoming sleepy! Also, Pfizer has a discount program for people without insurance help. I know its expensive, but believe me- its worth it. It also helps with the nerve pain in my legs from my back. And as for the Senokot, yes- it does say overnight. Take 2 and you will be fine. I had to take a ton of the regular. I hope you have a wrong diagnosis, did he check your pressure points?
And yes, be honest! You want the right diagnosis!!! Hope you feel better. Oh and John Hopkins website has a lot about fibryo, might wanna check it out too. Its not as bad as it seems, unless you have it really bad.... some people can have it so bad they can't sleep with sheets at night! I hope neither of us, or anyone else, gets that bad off. I can't imagine. Its more annoying to me than anything! And make sure you ask for those samples!! You will need them if its fibryo.
RX's: Oxycontin 80mg 2x's daily; Oxycodone 30mg 5xs daily; Zanaflex 4mg 3x's daily; Restoril 15mg 1x; Soma 3x's daily; Lyrica 100mg 3x's daily (pain & fibro.); Phenergan 25mg (as needed); Amitriptyline 25mg 1x (chronic pain); Cymbalta 60mg 2x's daily (pain from fibro); Abilify 5mgs at bedtime (depression); Metoclopram (as needed) & Senokot (as needed).
"The most critical choice you'll ever make is the one you make about what you're going to do with this. The past is over. The future hasn't happened yet. The only time is now."
- Dr. Phil


Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 1/28/2009 6:21 PM (GMT -7)   
Just asking, have you a Sam's Club near you?, they do offer up low cost
prescriptions, ask at walgreens or the pharmacy you usually go to if they
have a low cost precription plan or discounts you could get, I hope this
might be of some help. good luck on diagnosme.com and I agree with
Kttn in that this doctor should've checked you for the trigger points..
and fibro is very real and very painful dx to recieve, I was like you with
this dx at first and you are lucky if the lyrica helps, it did not work for me,
has your doctor have tried you on Celebrex it's in the same medicine group
as Lyrica, but might not cost as much, does something called a hot toddy (sp)
help in trying to get some rest or maybe some warm milk, just trying to help
as you do deserve a break from the pain and I so hope you can get one soon!
Take care..
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc, Fibromyalgia, Gerd, Enlarged Pituitary Gland
******** "We could never learn to be brave and patient if there were only joy in the world" from Helen Keller *********

********>^..^<********>^..^<********>^..^<********


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13466
   Posted 1/28/2009 9:37 PM (GMT -7)   
Pam, I suggest a good rheumatologist. Several of the peeps on the fibro board are under the care of a rheumy and thats how they got a proper diagnosis. Bottom line is, if you got Fibro going on, get under the care of a rheumy who actually treats people with fibro. Since this guy didn't really do a true exam, I woulldn't bother wanting his little piece of paper so I would just let him slip on by. My rheumy did an evaluation on me the first visit to make sure I did not have fibro-thank goodness I don't,lol. I gotta enough to deal with w/o that crap.... Susie


Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 1/29/2009 4:11 AM (GMT -7)   
A "good" rheumatologist said this to me:

"You either have a serious condition and need surgery OR you have Fibromyalgia.
If you have Fibromyaliga there is no treatment. We do not prescribe AT ALL."

This happened six years ago. He did do my pressure points. Ow ow ow ow ow.
He pressed so hard it would have done in a foot ball player -- left bruises even.

Night night.

Pamela

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13466
   Posted 1/29/2009 8:04 PM (GMT -7)   
Well, for what is worth they can treat it. That was 6 yrs ago and there is more than one rheumy out there gal. And based on what you said he wasn't even sure it was fibro so he wasn't that good of a rheumy. If he had been one he would have been able to dx you. They have come a long way in 6 yrs on treatment. Hugs, Susie

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