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Attended a seminar for Fibro

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Posted 3/21/2009 4:03 PM (GMT 0)
I attended a seminar last night for Fibromyalgia, sponsored by one of our

most prestigous hosptials in the area.  It was packed full of women.  The

dr was a rheumatologist, probably around 55 years of age.  He acknowledged that Fibro is real (Yeah!!!) and there is much research going into it. He did say one thing I found veryyyyyyy interesting....he said and I quote "Fibro is nothing more than being uptight an anxious".  That floored me. Then he went on to talk about seratonin levels being off, not enough oxygen and blood flow to the muscles and brain.  I have had anxiety for manyyyyyyyyy years, and I noticed also, some of our members here are struggling with anxiety.  He suggested we all go home and experiment with laying down for about 15 minutes, maybe reading or watching TV, then said check out how much your muscles are tense throughout your body.  We have the tendency to contract our muscles, due to anxiety, and we dont even know we are doing it.  Wow, was he right. My whole body was tense from neck to toes.  Just wanted to pass this on to all of you.  You might try it and see if you sense the same as I did

Hugs

Sue

Posted 3/21/2009 4:29 PM (GMT 0)
Uptight and anxious??? That is pretty much me in a nut shell. But all my problems began with anxiety and stress. There are some that will argue that point on here cause they do not have anxiety problems like we do Sue.

 

So what was his suggestions to increase the seratonin level, I'm on two anti depressants. I take xanax for the anxiety. I know my muscles are tense but I blame that on the all the knots that have formed over the years. I can't remember the last time the upper half of my body didn't feel tight. Any kind of stress only makes it worse.

 

I am so glad there is much research going on for fibro.

 

Thanks for sharing Sue.

 

luv and hugs

Marlee

Posted 3/21/2009 4:46 PM (GMT 0)
Marlee.......your right.....not every one suffers for anxiety. He said an antidepresssant is the best med right now, and he said Elavil was the most prescribed one that he uses.  He says it may take two or three trys before the right one is found.  He didnt mention Lyrica, and I asked the moderator after why.  She said the dr is not 100% sure it is the right drug for Fibro.

Interesting, to say the least. I know my dr will not give me lyrica

Hope you are well Marlee

Sue

Posted 3/21/2009 4:47 PM (GMT 0)
I'd be tense from head to toe if I were sitting in a room full of women with fibro and listened to the speaker/doctor say it is nothing more than being uptight and anxious!  I wonder if he would have said that to a room full of men...

 

I have had anxiety on occasion but it doesn't govern my life.  I'm generally relaxed and logical.  Tell me why I have fibromyalgia?  I don't need a doctor to tell me that tension and anxiety causes me to tense my muscles.  I figured that out in grade school.

 

Unfortunately, it's thinking like that that keeps fibro in the "dark ages", in my humble opinion.  Many doctors don't even consider this an illness...just a syndrome.  They will all look foolish when the true cause of this illness comes to light.  ~Sherrine mumbling and grumbling~

Sherrine 

Posted 3/21/2009 5:28 PM (GMT 0)
Sherrine....I dont think I made myself clear and for that I apologize. He said
there were other causes of Fibro......trauma, chemical imbalances, but he said anxiety was the most prominent one. Sorry if I made myself unclear. This dr
is working to uncover Fibro and says its a "real disabling condition". He, in no way
indicated that he didnt believe it to be all in our heads. He has started a support group for familes and people who have fibro. He does BELIEVE Fibro is real.
Sorry if my post upset you. I was just using an example he gave for people who have severe anxiety.

Sue
Posted 3/21/2009 5:33 PM (GMT 0)

I'm so glad to hear that!  I've had fibro long enough to have heard some real doozies for explanations of this illness!  I'll be praying that he helps uncover the key to fibro.

By the way, you don't have to apologize.  You did nothing wrong.  I probably didn't read it as carefully as I should have.  sad

Sherrine


Posted 3/21/2009 6:16 PM (GMT 0)
Just signed in to this forum. This is great ! Ineed a community that can relate to the pain. I have just been diagnosed with fibro. I actually knew I had it before a dr. diagnosed it. I do believe that there are still many drs. that do no believe this is a disease or syndrome. I waited 3 month to see a rheumy at a well known medical center that I thought would be great. Went to see him and his PA did most of my exam and then reported to him in the next room. I could hear everything they were talking about. It was so unprofessional. Then he came in, talked to me fo 5minutes, never examined me and said I have "chronic pain" and basically to live with it. Gave me an appointment for 6 months from now. Never offered any meds or whatever. ! I mentioned fibro and he just made some sort of an off handed joke about it. I was very upset and angry. Then I went to a local dr. who checked my bloodwork, trigger points and diagnosed me. I am on Lyrica, Cymbalta, and Tramadol. He explained it all to me and gave me a great brochure put out by the Arthritis foundation.
The brochure states
"Studies have suggested that people with fibromyalgia have abnormal levels of several different chemicals in their blood or cerebrospinal fluid that help transmit and amplify pain signals to and from the brain. There is also evidence that the central nervous system's ability to inhibit pain is impaired in these people. In addition to patient's reports, brain-imaging studies have confirmed that when fibromyalgia patients are given a small amount of pressure or heat, they experience higher amounts of pain, as if the 'volume control' is set too high on pain processing.Whether these abnormalities are a cause or result of fibromyalgia is unknown."
This felt true to my pain and makes sense as to why some of the central nervous system meds help. Anyway, it is REAL for all of us and thankfully the word is slowly getting out to the medical community.
Suzanne
Posted 3/21/2009 6:59 PM (GMT 0)
It's good to know that there is someone out there doing research on Fibro.  I just wish some of my family members could understand that it isn't in our heads.

 

God Bless!

Shannon

Posted 3/21/2009 7:54 PM (GMT 0)

Hey Sue,

Thanks for sharing this information with us!!  Wow!!  I wish there was a seminar going on in my area.  Do you mind me asking what part of the country you live in?

I know anxiety has been a long term problem for me and I'm sure it contributed to my FMS.  But.... I was dx'd w/ CFS after my last bout w/Lyme (10 yrs ago).  Then it was updated or upgraded to FMS earlier this year.  I honestly can't remember ever feeling "normal" so I don't know if it was Lyme related or life related.. I think everyone that has FMS wants to know HOW IN GOD'S NAME DID I GET THIS??  Since the medical industry doesn't really know how to treat it or what the cause is, perhaps we'll never know.  But I'm praying that in my lifetime they'll find a cause and cure.

I also wanted to welcome Suzanne to our forum!! 

How did you find out about the seminar???  I'd like to see one come to my area.. N/E Indiana.  I'm wondering who I have to get motivated to bring a program like this to our area.

Thanks again for sharing!!

Hugs and happieness!!

Posted 3/21/2009 8:06 PM (GMT 0)
Hi Patti

I live in Southeast Michigan. A gal, who has fibro, who lives in my area, wrote a book about her battle with Fibro. A dr from the hospital contacted her and they
started working together. They now have a support group, starting April 2, at the hospital, once a month. Last night was the introduction. Will have many speakers, including drs, physical therapists. etc. I just happened to see the book in our local paper and wrote her an email. She is a nutrionist and she emailed me back, informing me of all the happenings. You could call your local hospital, clinic and ask if there are any support groups. Thank goodness we are being recognized.

I know my fibro was after surgery to have my ovaries removed in 2005, but I look back probably 20 years, and realized I had all these aches and pains, but my Dr
(now deceased) told me it was just anxiety, which it was, but never put a name to it.

Good luck on finding a group. If I should hear anything up my way about this group traveling around, I will certainly let you know.

Hugs to you

Sue
Posted 3/21/2009 11:51 PM (GMT 0)

Cool, thanks Sue!!!

What's the name of her book???  I might want to read it.  Since we live within reasonable closeness maybe she'd come to our larger city, Ft Wayne, and bring some awareness to the area!!  Our little local hospital basically... well... sux.  They specialize in removing fish hooks from fishermen's fingers and that's about it.  The local joke is.. if you want to die go to THAT hospital, if not, go to one of the hospitals in Ft Wayne!  Sad but true.

Thanks again!!

Posted 3/22/2009 12:00 AM (GMT 0)
Hey, Sue,

Whereabouts in SE Michigan are you? I live in the same area, and would love to attend something like this if it was closeby. Feel free to email me if you don't want to post too much info on the board.

Patti, one of our nearby hospital's has a reputation similar to the one you have. Hubby and I joke that you don't go to this hospital unless you want to come out with a limb missing or something.

The anxiety connection to fibro is interesting. I have to wonder if this isn't a chicken or the egg kind of thing, though. I had some anxiety issues pre-fibro, but they were relatively mild. However, since my symptoms began, my anxiety issues have gotten much, much worse.

I remember reading something somewhere (I should write the sources for these things down because I can never remember them when I need to...) that part of the problem with fibro is that our muscles don't fully relax ever. This article was stating that the problem was a central nervous system issue of some kind, if I remember correctly. I personally have noticed that when my muscles are tense (especially my neck and shoulders) my anxiety increases, which makes the muscles even tesner. So, again, which came first?
Posted 3/22/2009 12:30 AM (GMT 0)

Hey Sue,  I too live in SE Michigan.  Which hosptial hosted the seminar.  I would love to attend.

Posted 3/22/2009 12:35 AM (GMT 0)
Also wanted to add that I have anxiety and have been treated for it for years. Had a few panic attacks. I started with Chronic Fatigue 20 years ago. Then I had all of my fillings taken out of my teeth thinking it was mercury toxicity. I got alot better in a short period of time and felt pretty good for years. Then I had alot of stress in my life and developed fibro in the last 2 years. I have had surgery on both shoulders, one shoulder twice. Torn rotator second time. Need surgery on my leg and then my left shoulder again. For me it seems like the stress put my body into alot of pain. Cold weather has been awful. I was thinking once I get the surgeries over with that I would start a chronic pain support group. People really need to be able to share this with others who know how they feel. Family and friends don't always get it. That is why I am in therapy right now. So glad this group is out here. Sorry about bad spelling and short sentences. I am typing with one hand.
Posted 3/22/2009 6:23 AM (GMT 0)

I'd say fibro gives me anxiety.  I don't have a problem with anxiety originally.  But wondering what shoes to wear and if I will be able to walk or not each day and not being able to do what I used to do can cause some anxiety.  Pain that the meds don't touch causes anxiety too.  Hurting now. 

Thanks for sharing the meeting info with us.

Sue

Posted 3/22/2009 12:27 PM (GMT 0)
I live in Novi, Michigan, and the meetings are held at Beaumont Hospital in Royal Oak
The support group starts meeting every Thursday, the first one being April 2 from 7-9 p.m.
The name of the book is 100 Questions and Answers by Sharon Ostalecki. For those of you in this area, it might be well worth your while to attend. If any of you need directions just let me know.

Hugs
Sue
Posted 3/22/2009 12:59 PM (GMT 0)

Thanks Sue, That's pretty far for me, I looked it up and its about 160 miles. Bummer!!!  But I will look up her book on Amazon.

Hugs,

Posted 3/22/2009 1:01 PM (GMT 0)
I live in Ferndale.  I was born a Beaumont.  So were my kids and Grandkids.

Ferndale is the kind of city that kind of sucks you in and you never leave.

I will definately check out the meetings on Thursdays and I'll look for the book.

My life has been spinning the last few years.  too many medical test, dr. appointments and trial and error on medications. 

Looking for a new PCP. Mine is not very supported.  She even went as far as to say that I need to except the fact that I'm 48 and am in a lot of pain with alot of pain conditions.  She doesn't except that my pain comes from fibro.  She said my pain is going to get worse every year and that's just something I need to except.

 

Posted 3/22/2009 1:30 PM (GMT 0)
Awww, Patti, sorry it isnt closer for you.

Bet, its right down the street from you. Check it out!!! And yes, get another PCP. 48 is wayyyyyyyy to young to accept pain.

Sue
Posted 3/22/2009 1:37 PM (GMT 0)
I still want to know why there are so many people in Michigan with fibro??? It's like half of the people on the forum live in Michigan.

 

We have a little hospital in our town with the same reputation. skull I think most small hospitals do.

 

luv and hugs

Marlee

Posted 3/22/2009 2:19 PM (GMT 0)
Good question Marlee........i always thought it was the crazy ever-changing weather we have, but I sure noticed a lot of fibromites from Michigan
Posted 3/22/2009 8:10 PM (GMT 0)

Sue

Is there an email address for the seminar or do you have a phone number.  My husband and I both would love to attend.  I am going to see if I can get the book from Borders.  I am really looking forward to this. 

Thanks

Betty

Posted 3/22/2009 9:27 PM (GMT 0)
If it were true that the fibro pain is just caused by anxiety and tense muscles, then why do so many of us feel horribly stiff, tight, and in pain first thing in the morning after we have "relaxed" all night? (not directed at you, Sue - just kind of rhetorical :-) ) 

 

I've heard so many "causes" for fibro that I'm skeptical of them all.  I've even had two rheumies in the same practice tell me two different things.  One said that it was solely a sleep disorder.  The other said that it was purely a central nervous system pain interpretation problem and that we interpret pain that should be a "2" as a "10". Then you have the micro-bacteria, virus, and trauma theories (and many more I've heard of over the years).

 

I guess I have little "alarm bells" that go off when a doctor says that fibro is caused by anxiety.  It's too close to the "It's all in your head" school of thought.  I believe that anxiety makes fibro worse, and I know that many people with chronic illnesses develop anxiety and depression, but I'm not so sure I'm on board with the fibro is caused by anxiety theory. 

 

I'm really glad that you posted this, Sue because it opens up a lot of good dialogue, and it helps us see what ideas are floating around out there.  I'm thrilled that there is so much new research going on and very, very hopeful that eventually the cause (or causes) will be definitively determined so a cure can be found. 

 

Hugs - Austen

Posted 3/22/2009 9:45 PM (GMT 0)

Bet

you can call Beaumont Hospital - 248-898-5000 and ask them to refer you to their upcoming classes.  The first meeting is April 2nd.  Hope this helps!!!

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