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Fibromyalgia - 8/4/2007 10:53:37 AM

MHOO314

Posts: 3628
Joined: 9/26/2004
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Id like to see some postings from people with, people who knew, or people who work with those with this diagnosis.

I have 2 scenarios and I am trying to understand:

A. A female friend, 55 YOA, took them two years to diagnose---she is now on massive sterioids, in pain constantly, suffers severe depression, is angry and refuses to see, be seen or get help from friends. She has become an angry recluse.

B. A male friend, 21 YOA, diagnosed, on meds, gets therapy--mood not depressed amymore, happy but convinced is is disabled, seeking SSDI and accepted he will need SSDI all his life.

Can I get some insight to this disease and its manifestations??

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Mistress Hathor

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RE: Fibromyalgia - 8/4/2007 12:23:49 PM

camille65

Posts: 5746
Joined: 7/11/2007
From: Austin Texas
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If you do a search in Health you should come up with a bunch of info, there are a lot here with autoimmune issues. Right now I'm too tired to find my posts here but there have been some really good threads.
Feel free too, to ask me on the other side if my posts don't have what you're looking for!
BTW I hover between both scenarios lol.

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Post #: 2

RE: Fibromyalgia - 8/4/2007 4:44:16 PM

Petronius

Posts: 289
Joined: 1/1/2004
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There's a lot of information on it via the net. Try wikipedia. Then run a search on yahoo and check out the federal medical sites like CDC.

But your two friends have a really bad form of the disease. I have a moderate one. Once a month I turn my head and scream when it triggers a pain that wasn't there a minute ago. So I'm real careful not to turn my head that way for two or three days. With experience I don't scream more than 5 or 6 times during that period.

(in reply to camille65)

Post #: 3

RE: Fibromyalgia - 8/4/2007 7:20:07 PM

MHOO314

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Joined: 9/26/2004
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Thank you, I have done allot of research, but the clinical does not begin to describe the variations like you and camille have shared---that is what I am seeking, to speak to others to learn----thank you for sharing---

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Post #: 4

RE: Fibromyalgia - 8/4/2007 7:39:54 PM

velvetears

Posts: 2933
Joined: 6/19/2006
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In each person this syndrom will manifest differently. It is a difficult thing to live with - you can never count on how you are going to feel. Trying to get enough sleep and eliminate stress is important to managing symptoms. There is a clinic out in Lake Tahoe - forgot the name of the doctor but he claimes to cure fibromyalgia - for about $8,000.00 plus cost of hotel room and food while you are there.

http://www.neurologychannel.com/fibromyalgia/index.shtml#symp

http://www.webmd.com/fibromyalgia/tc/Fibromyalgia-Symptoms

http://www.fibromyalgia-symptoms.org/fibromyalgia_treatment.html

http://www.orthop.washington.edu/uw/fibromyalgia/tabID__3376/ItemID__33/PageID__4/Articles/Default.aspx

http://www.immunesupport.com/

http://fmscommunity.org/lettertonormals.htm

http://www.fibromyalgia-symptoms.org/QA/answers-see_this_letter_to_normals_to_explain_the_pain_to_friends_and_family/

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Post #: 5

RE: Fibromyalgia - 8/4/2007 8:40:07 PM

LafayetteLady

Posts: 7683
Joined: 5/2/2007
From: Northern New Jersey
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quote:

ORIGINAL: velvetears

In each person this syndrom will manifest differently. It is a difficult thing to live with - you can never count on how you are going to feel. Trying to get enough sleep and eliminate stress is important to managing symptoms. There is a clinic out in Lake Tahoe - forgot the name of the doctor but he claimes to cure fibromyalgia - for about $8,000.00 plus cost of hotel room and food while you are there.

http://www.neurologychannel.com/fibromyalgia/index.shtml#symp

http://www.webmd.com/fibromyalgia/tc/Fibromyalgia-Symptoms

http://www.fibromyalgia-symptoms.org/fibromyalgia_treatment.html

http://www.orthop.washington.edu/uw/fibromyalgia/tabID__3376/ItemID__33/PageID__4/Articles/Default.aspx

http://www.immunesupport.com/

http://fmscommunity.org/lettertonormals.htm

http://www.fibromyalgia-symptoms.org/QA/answers-see_this_letter_to_normals_to_explain_the_pain_to_friends_and_family/

velvetears:

Thank you for such informative sights. I have been having a multitude of health problems for about 6 months. The chest pains the joint aches, the fatigue, generally feeling everyday like I have been hit by a bus. I have, over the last couple of months been battling with doctors that I should NOT feel like this and something is horribly wrong. I have been to a cardiologist who has scheduled a cardiac catheterization for the 14th of this month (terrified). I have anxiety and elevated stress and now have what a coworker refers to as my cornucopia of pharmaceuticals. The more I read about fibromyalgia, the more I am convinced that I need to talk to one of my doctors about it as a possibility. Mostly, my primary doctor has told me that basically I am a mental case and there is no help. A second doctor (who I paid an unaffordable amount of money to) has prescribed anti-depressants and anti-anxiety which has given some relief. I have a follow up with her later this month and fully intend to discuss the possibility of fibromyalgia with her if nothing is found with the cardiac catheterization, or there is little improvement after any possible angioplasty.

One other thing I have read about fibromyalgia in the past (have a friend who suffers from it) is that most doctors write women off as the things being all in their head, which certainly does nothing for the anxiety and stress. The sites you provided were very helpful. Thank you.

(in reply to velvetears)

Post #: 6

RE: Fibromyalgia - 8/4/2007 9:00:53 PM

YesMistressIrish

Posts: 1135
Joined: 5/1/2007
From: Calif
Status: offline

Heh there.
Good news A Lot of people with severe fibro go into remission, sometime that remission is permanent with only passing severe fatigue, neck and trigger point pain.

I was a Fibro support group leader locally for 3 years, and an Int SGL for 5.

Never give up! That's the secret and the price of freedom.

Metamorphize

I wish you all the best!

Miss Irish

(in reply to LafayetteLady)

Post #: 7

RE: Fibromyalgia - 8/5/2007 6:47:29 AM

velvetears

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Joined: 6/19/2006
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You're welcome LafayetteLady, i was glad i could help. The average medical doctor is very ignorant about this syndrom, you have to go to a rheumatologist who will test the 12 trigger points first, i believe most people with fibromyalgia will test positive for these. Don't let anyone tell you it's in your head or you are a hypocondriac, it's not a very well understood syndrom. Here is Dr. Whitcomb's site - he claims to have a cure - http://www.stopfibro.com/

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Post #: 8

RE: Fibromyalgia - 8/5/2007 6:55:03 AM

velvetears

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Joined: 6/19/2006
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quote:

ORIGINAL: LafayetteLady

The chest pains the joint aches, the fatigue, generally feeling everyday like I have been hit by a bus. I have, over the last couple of months been battling with doctors that I should NOT feel like this and something is horribly wrong. I have been to a cardiologist who has scheduled a cardiac catheterization for the 14th of this month (terrified).

Mostly, my primary doctor has told me that basically I am a mental case and there is no help. A second doctor (who I paid an unaffordable amount of money to) has prescribed anti-depressants and anti-anxiety which has given some relief.

As to the first paragraph - on what grounds is he ordering this catherization? Did you fail a stress test - did he do other preliminary tests - if not please question him. That's a very expensive test which carries some risk. Why take the test if its not indicated. It's not usually the first route they go.

As to the second paragraph - cymbalta is one of the only antidepressants i know of that is suppossed to relieve physical pain - it's an SSRI. You need to get rid of those doctors, for them to convey that kind of attitude to you is not professional or ethical. No doctor should ever tell a patient they have mental problems because they cannot find out why the patient is suffering - how egotistical of them.

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Religion is for people who are scared of hell, Spirituality is for people who have been there

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Post #: 9

RE: Fibromyalgia - 8/9/2007 8:14:51 AM

hot1

Posts: 455
Joined: 5/4/2004
From: Ontario Canada
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I was told I have fibromyalgia 3 years ago....since then it has been confirmed by 8 doctors that i do indeed have it. At first I refuse to admit it....I mean everyone else that I have heard that had this was disable and not able to do much. But then I handle things different...lol...to this day doctors can't figure out why I can still walk...according to the mri's and x-rays etc...walking should be impossible for me.

BUT....to have fibromyalgia....as I have been told.....is reactions to trigger points...that is how the say you have it or not.....I think you have to react to 13 of the 18 trigger points.....myself...i react to all 18 points...tis why every doctor confirms that I do infact have this.

I work at accounting 50 hours a week.....plus run a labour related business besides that. It has only be recently that I have found myself being bothered by the physical stuff.....like riding my bike to work 3 days in a row has put me on about 30 painkillers a day just to keep the pain from not making me break into tears. Although they say that is back problem...not fibromyalgia.....looks like I am heading into my 5th back surgery.

Beth

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Post #: 10

RE: Fibromyalgia - 8/9/2007 8:31:15 AM

camille65

Posts: 5746
Joined: 7/11/2007
From: Austin Texas
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I'm having a really rough time with it right now. To the point where I just don't know if I can keep going.

Yesterday I was notified that it was denial #3 from SSI and the stress of that is not helping lol.
I'm tired, crap I am so tired that I feel like I'm encased in mud. Can't find a place that doesn't ache and the meds don't seem to be touching it.

I'm sorry for the whining honest I am. Just.. today right now it is so hard to keep in mind this flare up will pass cuz it feels like it's been going on forever.

I've emailed MHOO314 some details of what fibro does/means to me and she is free to share the info if anyone wants it. For nearly 20 years I've been dealing with autoimmune 'stuff'.

Again sorry for the whine, the scroll thingie popped by just when I was hitting a meltdown lol.

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RE: Fibromyalgia - 8/9/2007 8:55:33 AM

hot1

Posts: 455
Joined: 5/4/2004
From: Ontario Canada
Status: offline

I am so sorry you are having a rough time.

I do know what pain feels like...I deal with it everyday from my back....but as I keep telling people, kids deal with things different and my back problems started when I was 10.

It took me 30 years to find a pain med that worked....then to find out I couldn't afford it when I lost my medical insurance. I am back on it now.....should be doing better in a week or so once the withdrawal stuff is over from the other meds.

Beth

_____________________________

come on guys...give the blond a break
Please Don't Confuse The Blond

(in reply to camille65)

Post #: 12

RE: Fibromyalgia - 8/9/2007 9:41:09 AM

camille65

Posts: 5746
Joined: 7/11/2007
From: Austin Texas
Status: offline

Oh ugh I know just what you're going through. I hope it passes quickly for you.
I hope too that you are being careful with the withdrawl, it can be pretty dang nasty as well as dangerous. So please be careful.

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RE: Fibromyalgia - 8/9/2007 9:46:35 AM

hot1

Posts: 455
Joined: 5/4/2004
From: Ontario Canada
Status: offline

Is tough...I hate it when my legs and arms just go off on their own. But I have recently moved in with a man that is wonderful in everyway....lol...but he was a crisis management nurse once upon a time and he is doing wonders for me. According to my doctors his care is what is making me better faster than what they have expected. And it is him that is also helping with costs so that I can afford the other meds...the one that works well and has no addictive to it. But coming off "hosiptal herione" as David puts it...is always tough.

Beth

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come on guys...give the blond a break
Please Don't Confuse The Blond

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Post #: 14

RE: Fibromyalgia - 8/9/2007 10:07:31 AM

MHOO314

Posts: 3628
Joined: 9/26/2004
Status: offline

I feel so deeply for you both--and wish I could help----cj, you have a loving, caring Dom--doesn't take the pain, however, One hopes it warms the heart and at times, allows you comfort and a tad of spoiling----and hot1, you are blessed as well not to be alone--the young person I wanted to help, chooses not to take the help and allow others to chart his course---so sad, I havehad to remove Myself a bit from the emotional involvement in his future---however, I am always here with a hug and a heart---I wish others would post too so we could identify a community here---

< Message edited by MHOO314 -- 8/9/2007 10:08:03 AM >

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SLUTS: Southern Ladies Under Tremendous Stress...

Mistress Hathor

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RE: Fibromyalgia - 8/9/2007 6:38:00 PM

adoracat

Posts: 1779
Joined: 2/16/2007
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quote:

ORIGINAL: MHOO314

Thank you, I have done allot of research, but the clinical does not begin to describe the variations like you and camille have shared---that is what I am seeking, to speak to others to learn----thank you for sharing---

what really sucks is that it changes from day to day.

one day i can manage ok. the next, i'm in so much pain i cant think straight, i dont want to leave my bed, and the house could burn down around me and i wouldnt care. i'm not under a doctor's care at the moment...and i know i have "other" autoimmune issues going on, also.

fibromyalgia can be diagnosed fairly easily by a knowlegible doctor...its all in the tender points. the problem is, fibro comes hand-in-fist with other things, and its hard to separate one from another.

today, i know i have just over a month to finish sorting things to toss, pack up this 3 bedroom household and move down to a 2 bedroom apartment. i know i'll be laid up at least a week afterwards.

kitten

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RE: Fibromyalgia - 8/10/2007 5:30:49 AM

hot1

Posts: 455
Joined: 5/4/2004
From: Ontario Canada
Status: offline

The other thing that really gets to me...is most of the time when you go to the doctor...they blame everything elso on the Fibromyalgia.......right now my arm is bothering me.....last time it hurt like this I could not brush my hair for 6 months.......and they just say deal with it is a condition of the Fibromyalgia......is so stupid at times.

Beth

_____________________________

come on guys...give the blond a break
Please Don't Confuse The Blond

(in reply to adoracat)

Post #: 17

RE: Fibromyalgia - 8/11/2007 6:20:07 AM

Manawyddan

Posts: 701
Joined: 1/2/2005
From: Petaluma (Northern California)
Status: offline

I personally and without bias recommend my wife's website: immuneweb.org

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RE: Fibromyalgia - 8/11/2007 6:41:02 AM

pearlmoongirl

Posts: 68
Joined: 12/8/2006
Status: offline

One of my best friends has fibro, and she is doing MUCH better now that she's changed her diet.

There is an undeniable link between the food you eat and the state of your immune system; most people don't know this, but two thirds of your immune system is in your intestines. So if you have any sensitivity to something like wheat, corn, or dairy (the most common food type allergens), it can trigger all sorts of reactions, including ones that have no "logical" connection to your stomach.

So I would say, in addition to seeing a rheumatologist, go find a nutritionist - preferably one that's holistic or has an advertised preference for organic foods. This sort of visit is rarely covered by health insurance, though, but if you can find such a person and get some good advice, it's worth the money.

~ pmg

(in reply to MHOO314)

Post #: 19

RE: Fibromyalgia - 8/12/2007 4:15:54 PM

PghSpanking

Posts: 42
Joined: 6/30/2006
Status: offline

I had been almost totally crippled with fiibromyalgia. About 18 months ago I found something that has reversed over 60% of the symptoms and pain, while giving me 100% more energy. I now sleep 7-8 hours a night, I dont have severe bouts of IBS, I am not hopelessly depressed anymore, I can move alot more and alot better, I have alot less pain, alot more strength, stamina and energy. For the last 3 weeks I have been walking in a pool for 3-4 hours to get more strength and stamina. Before, I could only walk for about 20 min, and it hurt, and at that time I couldnt straighten up. I walked bent over like a little old lady.

If anyone wants to know what helped me, feel free to contact me.

(in reply to pearlmoongirl)

Post #: 20

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