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Sweet Jasmine
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« on: May 01, 2007, 11:36:56 am »

i have fibro bad and would like to chat with others
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« Reply #1 on: May 01, 2007, 11:47:05 am »

i have fibro bad and would like to chat with others
I'm online right now. I will send you 2 links to chat rooms I use. Pick the one you want and PM me and tell me which one you want to use and I'll meet you there. wink[/size]
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I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside.
www.LupusMCTD.com Represents:
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« Reply #2 on: June 27, 2007, 02:56:47 pm »

I have it too and would like to chat during the day
Can't chat at night with hubbie home  prplbtfy
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« Reply #3 on: June 27, 2007, 03:12:08 pm »

I have it too and would like to chat during the day
Can't chat at night with hubbie home  prplbtfy

Hello Fibro Friend
I will send you via a PM (personal message) the newest chat link we are useing.  I am online during the day and can chat when you need someone to talk to.
Send me a PM or my email LupusWebsite@aol.com to tell me what time and your time zone (I'm Pacific Time)

Welcome to LupusMCTD.com
Admin/Kathy
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I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside.
www.LupusMCTD.com Represents:
1) We are patients helping researchers build a future for the lives of others...
2) Where HOPE is a WORK In Progress
3) Pay It Forward~Giving Back To The Future Lupus/MCTD Patients
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« Reply #4 on: June 27, 2007, 04:43:16 pm »

 bflydance I recieved your chat links thank you
I'm east coast
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« Reply #5 on: June 27, 2007, 06:26:44 pm »

 wlcme feel free to pm me or email me if you want someone to chat with.Welcome to a wonderful drama free board.
« Last Edit: June 27, 2007, 06:27:38 pm by Bernadette » Logged
Jenilee
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« Reply #6 on: August 27, 2007, 09:43:01 am »

I saw a new rheumatologist today, since I moved earlier this year and it's no longer convenient for me to see the one I went to before.

The examination he gave me was a very thorough one and he is certain that I have fibromyalgia, even before the results of the blood test are in. He also thought that there was nothing elso going on with me, no arthritis or anything.

I asked him whether the other symptoms I have had in the last two years, such as low platelet count, low red blood cell count, elevated sed rate and positive ANA/anti SSA/anti SSB was also a feature of fibromyalgia and he said no. However, he also said and I quote "that sometimes the results of blood tests don't fit the overall picture and then we just put them aside."

Doesn't that sound a bit irresponsible? I'm glad that I'm finally diagnosed with something, even if it is fibromyalgia, but just "putting aside" symptoms and blood test results that don't "fit", is that really good medicine?  Shocked

Anyway, I'm supposed to start taking amitriptyline (Elavil) at night, to help me sleep. It's an antidepressant and I'm definitely NOT depressed, but he says it will help my muscles relax or whatever. He doesn't want me to take Neurontin any more, but he didn't tell me to stop taking Plaquenil, which I've been taking for over a year, so I'll continue taking that.

Has anyone tried Elavil? Does it work? Does it make you gain weight?
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Sweet Jasmine
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« Reply #7 on: August 27, 2007, 10:31:27 am »

 rose I have not been on Elavil before so I don't know how it works . I hope & pray it helps with the pain for you. gdlk
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« Reply #8 on: August 27, 2007, 10:41:35 am »

I saw a new rheumatologist today, since I moved earlier this year and it's no longer convenient for me to see the one I went to before.

The examination he gave me was a very thorough one and he is certain that I have fibromyalgia, even before the results of the blood test are in. He also thought that there was nothing elso going on with me, no arthritis or anything.

I asked him whether the other symptoms I have had in the last two years, such as low platelet count, low red blood cell count, elevated sed rate and positive ANA/anti SSA/anti SSB was also a feature of fibromyalgia and he said no. However, he also said and I quote "that sometimes the results of blood tests don't fit the overall picture and then we just put them aside."

Doesn't that sound a bit irresponsible? I'm glad that I'm finally diagnosed with something, even if it is fibromyalgia, but just "putting aside" symptoms and blood test results that don't "fit", is that really good medicine?  Shocked

Anyway, I'm supposed to start taking amitriptyline (Elavil) at night, to help me sleep. It's an antidepressant and I'm definitely NOT depressed, but he says it will help my muscles relax or whatever. He doesn't want me to take Neurontin any more, but he didn't tell me to stop taking Plaquenil, which I've been taking for over a year, so I'll continue taking that.

Has anyone tried Elavil? Does it work? Does it make you gain weight?
(((Jenilee))))
I guess I should cay Congrats on the dx of Fibro, you now know it wasn't all in your head.My Drs. attitude is alot like yours and pushed aside the lab levels and just wants to concentrate & treat my symptoms not the name.

Here is side effect info for you. It states "weight gain or weight loss". So if you need to lose weight that would be good I guess.
Be sure to report any bad side effects immediantly!


from www.rxlist.com
ElavilSide Effects & Drug Interactions

Within each category the following adverse reactions are listed in order of decreasing severity. Included in the listing are a few adverse reactions which have not been reported with this specific drug. However, pharmacological similarities among the tricyclic antidepressant drugs require that each of the reactions be considered when amitriptyline is administered.

Cardiovascular: Myocardial infarction; stroke; nonspecific ECG changes and changes in AV conduction; heart block; arrhythmias; hypotension, particularly orthostatic hypotension; syncope; hypertension; tachycardia; palpitation.

CNS and Neuromuscular: Coma; seizures; hallucinations; delusions; confusional states; disorientation; incoordination; ataxia; tremors; peripheral neuropathy; numbness, tingling, and paresthesias of the extremities; extrapyramidal symptoms including abnormal involuntary movements and tardive dyskinesia; dysarthria; disturbed concentration; excitement; anxiety; insomnia; restlessness; nightmares; drowsiness; dizziness; weakness; fatigue; headache; syndrome of inappropriate ADH (antidiuretic hormone) secretion; tinnitus; alteration in EEG patterns.

Anticholinergic: Paralytic ileus; hyperpyrexia; urinary retention; dilatation of the urinary tract; constipation; blurred vision, disturbance of accommodation, increased ocular pressure, mydriasis; dry mouth.

Allergic: Skin rash; urticaria; photosensitization; edema of face and tongue.

Hematologic: Bone marrow depression including agranulocytosis, leukopenia, thrombocytopenia; purpura; eosinophilia.

Gastrointestinal: Rarely hepatitis (including altered liver function and jaundice); nausea; epigastric distress; vomiting; anorexia; stomatitis; peculiar taste; diarrhea; parotid swelling; black tongue.

Endocrine: Testicular swelling and gynecomastia in the male; breast enlargement and galactorrhea in the female; increased or decreased libido; impotence; elevation and lowering of blood sugar levels.

Other: Alopecia; edema; weight gain or loss; urinary frequency; increased perspiration.

Withdrawal Symptoms: After prolonged administration, abrupt cessation of treatment may produce nausea, headache, and malaise. Gradual dosage reduction has been reported to produce, within two weeks, transient symptoms including irritability, restlessness, and dream and sleep disturbance.

These symptoms are not indicative of addiction. Rare instances have been reported of mania or hypomania occurring within 2-7 days following cessation of chronic therapy with tricyclic antidepressants.

Causal Relationship Unknown: Other reactions, reported under circumstances where a causal relationship could not be established, are listed to serve as alerting information to physicians:

Body as a Whole: Lupus-like syndrome (migratory arthritis, positive ANA and rheumatoid factor).

Digestive: Hepatic failure, ageusia.

DRUG INTERACTIONS
Drugs Metabolized by P450 2D6 The biochemical activity of the drug metabolizing isozyme cytochrome P450 2D6 (debrisoquin hydroxylase) is reduced in a subset of the caucasian population (about 7-10% of caucasians are so called "poor metabolizers"); reliable estimates of the prevalence of reduced P450 2D6 isozyme activity among Asian, African and other populations are not yet available. Poor metabolizers have higher than expected plasma concentrations of tricyclic antidepressants (TCAs) when given usual doses. Depending on the fraction of drug metabolized by P450 2D6, the increase in plasma concentration may be small, or quite large (8-fold increase in plasma AUC of the TCA).

In addition, certain drugs inhibit the activity of this isozyme and make normal metabolizers resemble poor metabolizers. An individual who is stable on a given dose of TCA may become abruptly toxic when given one of these inhibiting drugs as concomitant therapy. The drugs that inhibit cytochrome P450 2D6 include some that are not metabolized by the enzyme (quinidine; cimetidine) and many that are substrates for P450 2D6 (many other antidepressants, phenothiazines, and the Type 1C antiarrhythmics propafenone and flecainide). While all the selective serotonin reuptake inhibitors (SSRIs), e.g., fluoxetine, sertraline, and paroxetine, inhibit P450 2D6, they may vary in the extent of inhibition. The extent to which SSRI-TCA interactions may pose clinical problems will depend on the degree of inhibition and the pharmacokinetics of the SSRI involved. Nevertheless, caution is indicated in the coadministration of TCAs with any of the SSRIs and also in switching from one class to the other. Of particular importance, sufficient time must elapse before initiating TCA treatment in a patient being withdrawn from fluoxetine, given the long half-life of the parent and active metabolite (at least 5 weeks may be necessary).

Concomitant use of tricyclic antidepressants with drugs that can inhibit cytochrome P450 2D6 may require lower doses than usually prescribed for either the tricyclic antidepressant or the other drug. Furthermore, whenever one of these other drugs is withdrawn from co-therapy, an increased dose of tricyclic antidepressant may be required. It is desirable to monitor TCA plasma levels whenever a TCA is going to be coadministered with another drug known to be an inhibitor of P450 2D6.

Monoamine Oxidase Inhibitors: (See CONTRAINDICATIONS.) Guanethidine or similarly acting compounds; thyroid medication; alcohol, barbiturates and other CNS depressants; and disulfiram (see WARNINGS.)

When amitriptyline HCl is given with anticholinergic agents or sympathomimetic drugs, including epinephrine combined with local anesthetics, close supervision and careful adjustment of dosages are required.

Hyperpyrexia has been reported when amitriptyline HCl is administered with anticholinergic agents or with neuroleptic drugs, particularly during hot weather.

Paralytic ileus may occur in patients taking tricyclic antidepressants in combination with anticholinergic-type drugs.

Cimetidine is reported to reduce hepatic metabolism of certain tricyclic antidepressants, thereby delaying elimination and increasing steady-state concentrations of these drugs. Clinically significant effects have been reported with the tricyclic antidepressants when used concomitantly with cimetidine. Increases in plasma levels of tricyclic antidepressants, and in the frequency and severity of side effects, particularly anticholinergic, have been reported when cimetidine was added to the drug regimen. Discontinuation of cimetidine in well-controlled patients receiving tricyclic antidepressants and cimetidine may decrease the plasma levels and efficacy of the antidepressants.

Caution is advised if patients receive large doses of ethchlorvynol concurrently. Transient delirium has been reported in patients who were treated with one gram of ethchlorvynol and 75 - 150 mg of amitriptyline HCl

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I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside.
www.LupusMCTD.com Represents:
1) We are patients helping researchers build a future for the lives of others...
2) Where HOPE is a WORK In Progress
3) Pay It Forward~Giving Back To The Future Lupus/MCTD Patients
Jenilee
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« Reply #9 on: August 27, 2007, 05:24:37 pm »

(((Jenilee))))
I guess I should cay Congrats on the dx of Fibro, you now know it wasn't all in your head.My Drs. attitude is alot like yours and pushed aside the lab levels and just wants to concentrate & treat my symptoms not the name.

Here is side effect info for you. It states "weight gain or weight loss". So if you need to lose weight that would be good I guess.
Be sure to report any bad side effects immediantly!

Hi and thanks for all the replies,  wink

I feel sort of weird about ignoring blood test results, but I suppose if I get better it doesn't matter what my condition is called. I'm 100% sure that I have fibromyalgia and I feel like my previous rheumatologist ignored it, however this rheumatologist wants to ignore everything BUT the fibro... Wonder which is better.

Anyway, I looked up some patient histories on the internet and almost all of them reported a weight GAIN on Elavil and nobody mentioned weight loss. Which is kind of scary, since I gained weight on Neurontin and I hate, hate, hate being overweight and I don't want to gain any more. In fact, I'm desperate to lose weight and I'm starting a new diet as well as working out with a personal trainer.

So maybe I should wait to take the Elavil until I can see some weight loss. Does that sound really stupid? I just don't want to gain weight. I almost would prefer to continue to have pain and to be skinny, although I know that's a bit nuts. I always used to be skinny and just this year I've gained about 18 pounds, which just makes me unhappy about myself and less willing to go out and do things.   sad cat
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« Reply #10 on: August 27, 2007, 07:42:39 pm »


Quote
Hi and thanks for all the replies,  wink

I feel sort of weird about ignoring blood test results, but I suppose if I get better it doesn't matter what my condition is called. I'm 100% sure that I have fibromyalgia and I feel like my previous rheumatologist ignored it, however this rheumatologist wants to ignore everything BUT the fibro... Wonder which is better.

Anyway, I looked up some patient histories on the internet and almost all of them reported a weight GAIN on Elavil and nobody mentioned weight loss. Which is kind of scary, since I gained weight on Neurontin and I hate, hate, hate being overweight and I don't want to gain any more. In fact, I'm desperate to lose weight and I'm starting a new diet as well as working out with a personal trainer.

So maybe I should wait to take the Elavil until I can see some weight loss. Does that sound really stupid? I just don't want to gain weight. I almost would prefer to continue to have pain and to be skinny, although I know that's a bit nuts. I always used to be skinny and just this year I've gained about 18 pounds, which just makes me unhappy about myself and less willing to go out and do things.   sad cat
Jenilee,
THis isn't a stupid question, but you could call first thing tommorow and let the Dr. be aware that there is a weight issue here and you would like to try a medication that doesn't have it as a side effect. Ask what all other alternative meds are available for you.

I gain weight when I'm on Nuerontin, about 3-5 pounds. It's not much but I feel it in my pants, they fit nice (I'm 115 and have no butt or boobs so I welcome weight)


Keep us posted I'm sure others who have been on this Elavil will post soon.
Hang in there,
Kathy
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I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside.
www.LupusMCTD.com Represents:
1) We are patients helping researchers build a future for the lives of others...
2) Where HOPE is a WORK In Progress
3) Pay It Forward~Giving Back To The Future Lupus/MCTD Patients
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« Reply #11 on: August 27, 2007, 11:23:12 pm »

Jenilee,
Tommorow (Tuesday ) we are having chat and I'd love to have you join us. Perhaps you can get some imput or advice from others.


Gail gthrng Chat Room Hostess
Come and join in the fun Monday,Tuesday and Thursday,
3:00 PM and 7:00 PM Eastern time
12:00 noon and 3:00 PM Pacific

http://www.lupusmctd.com/index.php?board=18.0
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I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside.
www.LupusMCTD.com Represents:
1) We are patients helping researchers build a future for the lives of others...
2) Where HOPE is a WORK In Progress
3) Pay It Forward~Giving Back To The Future Lupus/MCTD Patients
Jenilee
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« Reply #12 on: August 28, 2007, 08:36:56 am »

Thanks for the invite. I'll try, if I can figure out the chat program.  smiley
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Jenilee
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« Reply #13 on: September 03, 2007, 01:30:22 pm »

I tried to log into the chat, but my computer wouldn't cooperate. Don't know why.  undecided
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« Reply #14 on: September 18, 2007, 04:32:30 pm »

Hi Jenilee,  wave
I hope you are feeling well.

Here is Gail's Wolf Wing's Chat Room.
Click this link http://www.lupusmctd.com/index.php?board=18.0



I tried the chat link again today. Every time I click on the topic "out chat room link" my browser shuts down.

Does the chat not work for Macs?
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« Reply #15 on: September 18, 2007, 04:33:04 pm »

Hi Jenilee,  wave
I hope you are feeling well.

Here is Gail's Wolf Wing's Chat Room.
Click this link http://www.lupusmctd.com/index.php?board=18.0



I tried the chat link again today. Every time I click on the topic "our chat room link" my browser shuts down.

Does the chat not work for Macs?
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« Reply #16 on: September 18, 2007, 05:30:44 pm »

Jennilee,
When you sign into our website this is where the chat box is located on the front page.
I don't know anything about if a Mac would not cause it to show up

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I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside.
www.LupusMCTD.com Represents:
1) We are patients helping researchers build a future for the lives of others...
2) Where HOPE is a WORK In Progress
3) Pay It Forward~Giving Back To The Future Lupus/MCTD Patients
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« Reply #17 on: November 14, 2007, 05:04:37 pm »

Jenilee,
Honey, how are you feeling?
 I just came across this today. We have several new Fibro members. When you have time could you update us on how you are feeling.

Kathy
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I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside.
www.LupusMCTD.com Represents:
1) We are patients helping researchers build a future for the lives of others...
2) Where HOPE is a WORK In Progress
3) Pay It Forward~Giving Back To The Future Lupus/MCTD Patients
AnnieHasFibro
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« Reply #18 on: November 14, 2007, 05:13:50 pm »

 CandleSmilie
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Annie has fibro 33 no kids and no husband
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« Reply #19 on: November 14, 2007, 08:14:53 pm »

Jenilee,

First and foremost, I'm keeping you in my prayers! About the chat box...do you have any firewalls or surf controls that may keep it from showing up? The chat box on The Coffee Shop will not show up on some computers that have these. I'll try to find a solution if I can.
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« Reply #20 on: March 18, 2008, 08:30:59 pm »

I saw a new rheumatologist today, since I moved earlier this year and it's no longer convenient for me to see the one I went to before.

The examination he gave me was a very thorough one and he is certain that I have fibromyalgia, even before the results of the blood test are in. He also thought that there was nothing elso going on with me, no arthritis or anything.

I asked him whether the other symptoms I have had in the last two years, such as low platelet count, low red blood cell count, elevated sed rate and positive ANA/anti SSA/anti SSB was also a feature of fibromyalgia and he said no. However, he also said and I quote "that sometimes the results of blood tests don't fit the overall picture and then we just put them aside."

Doesn't that sound a bit irresponsible? I'm glad that I'm finally diagnosed with something, even if it is fibromyalgia, but just "putting aside" symptoms and blood test results that don't "fit", is that really good medicine?  Shocked

Anyway, I'm supposed to start taking amitriptyline (Elavil) at night, to help me sleep. It's an antidepressant and I'm definitely NOT depressed, but he says it will help my muscles relax or whatever. He doesn't want me to take Neurontin any more, but he didn't tell me to stop taking Plaquenil, which I've been taking for over a year, so I'll continue taking that.

Has anyone tried Elavil? Does it work? Does it make you gain weight?
Jennilee,
It's been a few months, how are you doing? Have your meds changed?
Praying you have been doing well,
Kathy
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I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside.
www.LupusMCTD.com Represents:
1) We are patients helping researchers build a future for the lives of others...
2) Where HOPE is a WORK In Progress
3) Pay It Forward~Giving Back To The Future Lupus/MCTD Patients
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« Reply #21 on: May 25, 2008, 01:41:39 pm »

A new place for conversations and helpful tips to share
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I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside.
www.LupusMCTD.com Represents:
1) We are patients helping researchers build a future for the lives of others...
2) Where HOPE is a WORK In Progress
3) Pay It Forward~Giving Back To The Future Lupus/MCTD Patients
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