RE: Fibromyalgia and treatment options?

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RE: Fibromyalgia and treatment options? - 7/31/2009 6:54:10 PM

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The only time I get a good night's rest is after a good whoopin! No kidding! I sleep like a baby when I am with my partner and for days after too. I actually wake up refreshed. It's a sick, twisted world we live in isn't it???? LOL

Is it funny that I usually can't remember how old I am?

lovingpet

(in reply to Lockit)

RE: Fibromyalgia and treatment options? - 7/31/2009 6:57:11 PM

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LOL... I have asked my kids my age. I once called 411 and asked what year it was. They thought it was a joke. I was serious! That was years ago though and I had no way of knowing, so I called information! lol

I am often asking those around me... Have I done this before... ah gee mom... you do it all the time. Oh... okay.

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No matter how old a woman gets, some men will think she was born yesterday! ROFL... I love this place!

(in reply to lovingpet)

RE: Fibromyalgia and treatment options? - 7/31/2009 7:08:16 PM

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i have fibro and i used to take advil or aleve with tylenol and occassionally on those bad days a vicodin or oxycontin. i got severe gastric symptoms and had to have an endoscopy. The doctor said i had to immediately go off the anti inflammatories because the lining of my stomach was raw. Without them i could barely function, which lead to depression worsening, which led to seeing a psychiatrist to go back on meds, which led to cymbalta. All i can say is WOWOWOWOWOWOWOWOWOWOWOW!! Almost overnight i felt 20 years younger. i still have pain but it is wayyyyyyyyyyy manageable. i have a life again. i haven't taken a pain med in 3 months. i sleep better as well.

i hope you get relief. You might want to try cymbalta - each med is slightly different, you may not get the same reaction with it you did with the others. i had been on cymbalta 7 years ago and i had sexual side effects and it did not afffect my pain at all, although my fibro wasn't as bad back then either. i have no sexual side effects and i am up to 60mg a day. i will never go off it, cymbalta is my new best friend

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

(in reply to Lockit)

RE: Fibromyalgia and treatment options? - 7/31/2009 7:30:44 PM

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Awesome!!!!!! It is great to hear success stories! It gives hope to the rest of us!

lovingpet

(in reply to velvetears)

RE: Fibromyalgia and treatment options? - 8/1/2009 8:07:47 AM

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Wow, there's a lot of good info here to look into. I've been very health conscious for some years, to the point of where I was studying to be a master herbalist. I try to be careful with what I eat and I don't smoke and rarely drink. It's nice to finally have a doctor to work with me, rather than against me. That's one reason why a former nurse-practitioner that I used to go to stopped seeing me and referred me to his supervising doctor. I would do research and go in asking questions he couldn't answer. He was also one of those that believes there's no such thing as fibro and that I was just stressed. It didn't matter that I'd had ongoing problems for most of my life, he just knew that there was no such thing as fibro because there was no hard and fast medical test that would say "yes - you have fibro!" but instead, other things had to be ruled out. He's also the one who insisted I was bi-polar simply because I had a bad reaction to the anti-depressants he wanted me to take. No other symptons, just a bad reaction to Effexor and Paxil so he just KNEW I was bi-polar.

I know about the sleep, it would be interesting to get a sleep study done if I ever have insurance again. I've had sleep problems for years, first off it takes me almost an hour to fall asleep, then I keep waking up. And every time I wake up, it's a good 30 minutes before I can fall back to sleep. Makes for some very short nights of sleep at times.

I've been taking folic acid and B-12 injections, when I was in Idaho I could get a whole B complex shot from my chiro but they don't do that here in Canada.

Lovingpet and Lockit, when I get the brain out of the fuzz later, I'll try to send you each a cmail. Right now, the meds are making thought a little hard, but all I've taken today is the Celebrex. I take everything else at night, since it makes me sleepy/groggy/loopy. "Loopy Lulu" should be my new nickname. *winks*

Thanks everyone, here's to all of us having good health!

_____________________________

"I have sold my soul to the devil for You, will You still love me when I am soiled, stained and souless in my love for You?
Or is this the beginning of the end?"
Proud member of the Clan Scarlett O'Hair

(in reply to lovingpet)

RE: Fibromyalgia and treatment options? - 8/1/2009 8:35:58 AM

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No rush at all sweetie! I think I can speak for Lockit and myself when I say we completely understand the brain fuzzies. I hope we didn't throw you into the deep end of the pool with all the vit D chit chat. It's just an avenue to explore. Hoping you can get your meds straightened out a bit soon and get to feeling more like yourself!

lovingpet

(in reply to Rainfire)

RE: Fibromyalgia and treatment options? - 8/1/2009 12:01:00 PM

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i think one of the things that made me the angriest is having a NEUROLOGIST tell me that "you cannot be awakened by pain, you will sleep through it". i just told him "then you've never had REAL pain, have you? or you've always been able to get decent pain medication because you're (a) MALE and (b) A DOCTOR."

funny, he changed the subject right quick about then. *eyeroll*

i'm now taking 10 meds a day for *other* things...and there isnt a pain med amoung them. and what do you know, i'm STILL in pain. but fibromyalgia doesnt exist, you know.

kitten, still a bit miffed by that 6 months ago now appointment.

(in reply to lovingpet)

RE: Fibromyalgia and treatment options? - 8/1/2009 12:22:02 PM

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I basically have given up. I never thought those words would be part of my personal dictionary. But after a lifetime of trying to figure out what was wrong, suffering pain even as an infant, being neglected, abused, called names like hypochondriac and drug addict... I am no longer even seeking medical care and suffering, knowing I risk a bleed and all sorts of things.

I cannot bear one more doctor out of many hundreds calling me a drug addict because I cannot take anything that thins the blood and am allergic to most everything. No, I can't bear one more judging me and calling me names, only to then neglect me after they didn't read my medical records or test me for anything. How can I be a drug addict when I don't have any drugs? I don't lie and steal or do anything that would warrant what they call me and say of me.

Now I am a difficult patient and I stood up to them and what they constantly did and now they lable me a boarderline personality because I cried when they wouldn't help me and I said you are wrong, I am not like that. All the test that prove I am in pain... all the money, all the doctors and abuse and neglect. No thanks. I will just have to do without them and comfort, because I am not letting them do that to me again. How many drug addicts have pride?

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(in reply to pixidustpet)

RE: Fibromyalgia and treatment options? - 8/1/2009 12:34:24 PM

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Your doctors would really hate me, Lockit. I have a medical background and absolutely will not take crap from them. I worked with enough doctors to know that they're human just like the rest of us mortals and fuck up just as badly. I can honestly say I have seriously pissed off some doctors because I refuse to bow down to their God-Complex. That's why I love my current doctor, I swear he's one of the best I've ever had, on 2 continents and 3 countries!

I know some people hate being labeled but in my case, it helps explain what is going on. I've had discussions with other parents with children with special needs who absolutely HATE saying their child has autism or ADHD because "it's a LABEL and we don't want him labeled like that'. I felt different, being able to say my son has PDD and ADHD gives people a starting point to understand what he's like and what he, and the family, goes through. It's not the end all, be all of his existence and I don't expect fibro to be mine, but it's a starting point to say "ok - yes, I have this. And some days I hurt like a motherfucker. So what? Life goes on....Some days are better, some are worse. I deal."

It has really helped to see the support here, I'll need to get over to Fet tonight after Mr. Smarties is down and join the fibro group....

Hugs to all of you and thanks again!

_____________________________

"I have sold my soul to the devil for You, will You still love me when I am soiled, stained and souless in my love for You?
Or is this the beginning of the end?"
Proud member of the Clan Scarlett O'Hair

(in reply to Lockit)

RE: Fibromyalgia and treatment options? - 8/4/2009 12:08:52 PM

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So does anyone else's meds make them sick to their stomach and dizzy? I'm trying to pinpoint if this is just one medication in particular or the combo I'm taking... and the sweats too - anyone else get the sweats from their meds?

_____________________________

"I have sold my soul to the devil for You, will You still love me when I am soiled, stained and souless in my love for You?
Or is this the beginning of the end?"
Proud member of the Clan Scarlett O'Hair

(in reply to Rainfire)

RE: Fibromyalgia and treatment options? - 8/4/2009 1:09:45 PM

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I just started a new med and it's not for fibromyalgia but yeah I've definitely been sweating like a pig. If it doesn't go away I'm going to cry lol

(in reply to Rainfire)

RE: Fibromyalgia and treatment options? - 8/4/2009 2:51:26 PM

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It's most of them Rain (dizziness and nausea are pretty common). What meds are you on? I know they were not sure if you needed an adjustment when you started this thread. Lyrica, Cymbalta, and Savella all have one of their primary potential side effect being those two and profuse sweating. It sucks eggs, doesn't it?

My new neuro told me today that Topamax, which worked well in controlling my migraines before I couldn't afford it anymore, can help with fibro pain too. I am going back on it since they now have a generic which I might be able to afford. Just something to throw out there. Also, for those of you tenacious enough to try to get it. Look up the info on Nabilone. I will be fighting for this med the moment these smart asses run out of options. If I go for it too soon, I will just looking like a freaking addict.... But look at the efficacy rate and side effects and their severity.

Fine, I'm a druggie (who has done most of of my fibro stint with absolutely NO drugs, against my will but yanno). Just hook me up maaaaan!!!! LOL

lovingpet

(in reply to lostyoungling)

RE: Fibromyalgia and treatment options? - 8/5/2009 9:25:01 AM

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lovingpet, I'm on Lyrica, Celebrex, Zytram (tramadol), Ativan, Xanax and Percocet right now. Good grief, I had to line them all up to remember what I'm on..... talk about a pill popper.

I also use Gravol to help with the dizziness and nausea, ummmm, it's called Dramamine in the states. I'm trying to figure out if its the weather, the meds or a combo that has me sweating like this - can't say that I like it, ya know?

I was on Topimax for migraines, lost some weight on it too... but it's $100 a month here and out of my price range right now, what with everything else I have to take.

_____________________________

"I have sold my soul to the devil for You, will You still love me when I am soiled, stained and souless in my love for You?
Or is this the beginning of the end?"
Proud member of the Clan Scarlett O'Hair

(in reply to lovingpet)

RE: Fibromyalgia and treatment options? - 8/5/2009 12:38:53 PM

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Topamax I just found out is available generic. I don't know how long ago you were on it, but that has me gettting back on it. Mostly, it looks like it's the Lyrica that is doing the bulk of it to you. The others have their own weird side effects, although darn near all of them have dizziness as a side effect. Careful taking tramadol and percocet. Might want to discuss that with your dr. One is synthetic opioid and the other is opioid based. Ativan and Xanax are both anti anxiety meds. I just wonder if you are taking too many different things. That can get the body loopy in a real hurry. One thing I don't really see on the list is a good muscle relaxer, though if you are that chilled out on anxiety meds maybe it's not an issue. I also have no clue what Celebrex is, so I might be talking out of my ass. LOL

It's been a rough couple days here. If I'm a little off, my apologies.

lovingpet

(in reply to Rainfire)

RE: Fibromyalgia and treatment options? - 8/5/2009 1:01:22 PM

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*chuckles*

No, you're doing good. I've been on anti-anxiety meds for years due to GAD that I've had forever and ever. It's flared up and the Xanax alone wasn't cutting it so they added in the Ativan to help. Celebrex is an anti-inflammatory, used for arthritis. Right now, I'm taking the Zytram and Percocet only when necessary, like I can tell that I'll be using it tonight - I'm already hurting. Did a fair bit today including some running around. I wish I could just curl up and take a nap but the landlord has been here doing some repairs and we have a personal situation that might require us to go get Mr. Smarties from his mother's, about 30 minutes from here. So got some final tidying up to do and Lumus will be home soon from work.

*sigh* Just when I want to rest, there's still so much to do......

_____________________________

"I have sold my soul to the devil for You, will You still love me when I am soiled, stained and souless in my love for You?
Or is this the beginning of the end?"
Proud member of the Clan Scarlett O'Hair

(in reply to lovingpet)

RE: Fibromyalgia and treatment options? - 8/5/2009 1:23:57 PM

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I know the feeling. It was all my strength to agree to the cancellation appt I got for yesterday. It was going to be the first day in almost three weeks that I had to myself and could just REST. That got blown all to hell by that appt. It meant driving two hours each way and, since it was an initial consultation I was in the appt for nearly two hours. Then I came home to scheduling all the testing and getting my insurance approvals for the tests since they will all be next week. I finally crashed for about two hours before it was time to get hubby. Then it was only a short time before time for the little one to come home. I had to take what pain stuff I have left in order to even stand my body pressing into the bed. Just my butt on a chair was bad enough. I am only just now coming out of my haze from meds I took at MIDNIGHT! I sooooo know the feeling. Just try to rest when you can.

Did you anxiety happen to increase when they added the tramadol? I am just wondering because I become restless and anxious on it myself. It cuts the edge off the pain (not always), but the trade off is tossing and turning, nightmares, and more. Lyrica can have some of the same issues too. I don't really have anxiety as part of my fibro, but the meds sure do bring it on. I have a feeling the Lyrica is going to turn out to not be the best thing for you. The other options at that point get difficult for you, as they do for me, because of your issues with antidepressants. Neurontin (sp?) is probably the next thing the dr will want to try. For some it's a miracle and others a nightmare. From there, it just gets weird. Keep in mind though, the dosages of antidepressants used for fibro are much smaller than therapeutic doses for depression. Savella so far seems to have the least side effect and better symptom control, but it is like the rest some adore it and others hate it. Since you are in Canada, on the pain relief side (and really most of the fibro symptoms, but I digress), you might want to ask about Sativex. It's not approved in the US, but it is in up your way. People have some good results (near 100%) and either no or mild side effects. Might want to check into it instead of the tramadol and percocet.

Hoping you get some rest and relief soon!

Gentle hugs,
lovingpet

(in reply to Rainfire)

RE: Fibromyalgia and treatment options? - 8/5/2009 2:49:41 PM

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Lyrica is actually used off-label to treat anxiety as well. I was put on it because of GAD and there was a hope that it might help with the fibro. It didn't but it helped my anxiety quite a bit. I'm looking to up my dosage soon in the hopes that maybe more is better.

(in reply to lovingpet)

RE: Fibromyalgia and treatment options? - 8/5/2009 3:02:02 PM

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I'm glad it's helping your anxiety issues! That is wonderful!

A lot of drugs, though, can intensify the very thing they are supposed to treat. It is a matter of how it responds to a given person's body chemistry apparently. I personally had NO response to Lyrica at all. I may as well have been taking a sugar pill. I read a lot from people who have tried a medication before I decide to give it a go myself. It's always the same. Some love the drug, others hate it, and still others had no response at all. It really is just a trial and error process. It just gets incredibly hard when antidepressants are pretty much off the table for consideration. That is very limiting. I will give them a go cautiously, but I don't stick around long if I start having an adverse reaction.

lovingpet

(in reply to lostyoungling)

RE: Fibromyalgia and treatment options? - 8/15/2009 8:26:32 PM

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Its been awhile since posted on here. I just move back to Canada from the states. I found a doctor and told her about my fibromyalgia, she didnt even ask me about my history or work on a plan. She asked what has helped with the pain I told her my doc in the states prescribed me tramodal and it worked well for pain and sleep, she instantly told me no absolutely not because its a narcotic. She then prescribed me antidepressants. My concern was she didnt listen to me or even try to understand what I am going through. I didnt buy the antidepressants and found another doctor who I will see next week. This doctor on the phone said we will work out a plan and discuss this indepth, which I am excited about, finally a doc who will listen and work with me to see what works best and whats right for me. This is rare in canada. My last two weeks has been fibro hell, but I get through it each day and I never give up thou at times I feel like it. I have been more depressed lately and hopefully next weeks doc appntmnt will give me new hope.

Sensura

(in reply to lovingpet)

RE: Fibromyalgia and treatment options? - 8/15/2009 8:46:32 PM

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My thoughts will be with you as you see this new doc. That's the hardest part really is finding a doctor who not only believes you, but has enough compssion and expertise to work with fibro patients successfully. I ask them, since it is the case in the US, if they want to be paid. Since they always say yes, I tell them that they had better plan to do their job. I have fought and won more than a few attempts to collect fees in court. I'm not paying for incompetent and irresponsible management of the trust I have given.

lovingpet

(in reply to sensura)

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