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#529994 - 07/10/07 08:16 PM Fibromyalgia
TIADAWN TIADAWN Newbie Registered: 05/29/07 Posts: 47 Loc: The Rainy State =0)	I am just curious...who out here has been diagnoised with Fibro? I was almost 2 years ago with unrelenting symptoms. The doctors have told me that my symptoms should wax and wane and mine just continue to get worse. I am finally going to see a specailist this week, but its not like there is going to be a cure for this. I just wanted some advice and input from other fibro patients. Its so hard for people to understand what we go thru. Besides my extream pain and fatigue, i get fibro fog where I cant remember what I was saying or doing sometimes. Its so frustrating. I am 24 and trapped in my body. I really do feel like I am falling apart. Plus this summer heat is KILLING ME. The pain is so sever right now I can hardly tolerate it, and this is on my pain meds. Take care everyone. Thanks in advance! _________________________ Heres to Pain Free and Happy Days!
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#529995 - 07/10/07 08:24 PM Re: Fibromyalgia
aprilrain68 aprilrain68 Journeyman Registered: 12/01/06 Posts: 60 Loc: Northwest	I have a question for you how did you get a dx? I have like all of the symptoms plus other heath things like ddd herniated disc in my neck. i awaken tired hurting in weird places , i do hair on tuesdays and thursday only twicw a week I can hardly get through like 5 people and I start hurting, the next day i am in bed these symptoms have gotten worse over the last 2 years. I asked my primary if i could have that he pressd on a few spots and said no. i saw him only once. Just wondering what kind of doc should I GO TO? THANKS
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#529996 - 07/10/07 08:36 PM Re: Fibromyalgia
TIADAWN TIADAWN Newbie Registered: 05/29/07 Posts: 47 Loc: The Rainy State =0)	I went thru almost a year of testing. I was tested for everything under the sun that could cause all of my symptoms. I have CT Scans, X-Rays, MRI's, Blood Tests. You name it I have had it done. Everything kept coming back normal with no abnormalities. Yet I was have persistant pain, fatigue, nausea, loss of memory, sleep problems. After the dx of fibro they sent me to have a sleep study done because I was tired all the time and I didnt feel like I was sleeping and they dx'd me with Narcolepsy. For me my narcolepsy is when I sleep I wake up between 35-50 times in an hour, but I fall asleep within minutes of my head hitting the pillow. So with fibro and the narcolepsy,and other issues I have. I feel like I am falling apart. I had to push my doctors to test me....and figure out what was wrong with me. I was sent to different doctors for lots of tests. _________________________ Heres to Pain Free and Happy Days!
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#529997 - 07/10/07 08:37 PM Re: Fibromyalgia
TIADAWN TIADAWN Newbie Registered: 05/29/07 Posts: 47 Loc: The Rainy State =0)	ALso there are 18 points on the body that they use to help with the dx of fibro. If you have atleast 11 of the 18 then its more likely that you will have it. I had 16 of them. _________________________ Heres to Pain Free and Happy Days!
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#529998 - 07/10/07 08:39 PM Re: Fibromyalgia
pita pita Stranger Registered: 05/26/07 Posts: 8 Loc: NE USA	I have had FM for many years. Started off because I was extemely stressed out in a bad marriage/divorce. Then I got older and gained a lot of weight and had other health issues that compounded it. You are so young. Look at the stress in your life. Also a lot of people believe that if you have had mono, you are more susceptible to auto immune diseases. There are a lot of great FM resources, just Google it. Symptoms do wax & wane. There is no cure but you can come out of a flareup for a long time or for good for no apparent reason. TO aprilrain's post--- You want to see a rheumotologist and have a trigger point test.
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#529999 - 07/10/07 09:01 PM Re: Fibromyalgia
TIADAWN TIADAWN Newbie Registered: 05/29/07 Posts: 47 Loc: The Rainy State =0)	My Fibro was dx'd after I lost a considerable amount of weight from gastric bypass surgery. The doctor thinks the the surgery and drastic weight loss brought my fibro to a head. I actually did have mono as a teenager.. well 8th grade, but I had never heard they were possibly connected before. Interesting. I just changed jobs to something that is less stressful because I hagve heard that fibro is worse when you have alot of stress in your life. I am pretty happy other than my medical issues. I really wish this would wane right now. This has been 2 years of increasing pain! Grrr _________________________ Heres to Pain Free and Happy Days!
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#530000 - 07/10/07 09:04 PM Re: Fibromyalgia
aprilrain68 aprilrain68 Journeyman Registered: 12/01/06 Posts: 60 Loc: Northwest	I have had major stress all of my 38 years but the worst was my husband died 7 years he was 33 He died of mixing xanax ( he was prescribed alot!!! AND TOOK ONE OF HIS FRIENDS METHADONE PILLS. i FOUND HIM DEAD IN OUR BED THE NEXT MORNING.
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#530001 - 07/10/07 10:30 PM Re: Fibromyalgia
athomemomof3 athomemomof3 Member Registered: 07/05/07 Posts: 161 Loc: Lone Star State	I am 41 and was diagnosed with fibro 7 years ago. At that time, it was just a"back burner" type diagnosis. Now that it's come to the forefront of modern medicine and doctors have done their research on it, fibro patients aren't looked at like psychos! Sometimes the pain is so intense, I can't move or even breath deeply. Now that we know it's not all "in our heads", we can branch out on the medication being dispensed. I take Neurontin, which works remarkably well. For breakthrough pain, I take Vicodin ES, that is if the doctor will refill it. That's another thing...why does our country allow doctors to decide who suffers in pain and who doesn't? Really, they do have ALL the power, don't they? I just wish these law makers could suffer the type pain we do and then make their decisions! Fibro is extremely painful and deserves more respect.
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#530002 - 07/11/07 02:16 AM Re: Fibromyalgia
lovetocook lovetocook Journeyman Registered: 11/03/05 Posts: 50	I have had this horrible problem for over 10 yrs - my family dr. dx and then sent me to a couple of specialists. It is sad because there is so little that can be done and the pain is non-stop. We look just fine, walking around but inside we are suffering. For young people, I am sure it is hard to pace yourself - there are so many things you want to do - but you must go slow and not over- tax yourself because it adds to the pain and fatigue. I am with you - the heat is just about unbearable! I am ready for fall !!
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#530003 - 07/11/07 05:56 AM Re: Fibromyalgia
TIADAWN TIADAWN Newbie Registered: 05/29/07 Posts: 47 Loc: The Rainy State =0)	thank you all for your stories. Its to hard to go thru this sometimes. My Fiance is ABSOLUTLY WONDERFUL. Hes so understanding and supportive. I love him so much, but I feel like I am giving him the shortend of the stick because I am not at 100%. I am worried what a pregnancy will be like for me. I know that I will have to do it drug free and I dont know if I can make it. I am on Cymbalta, noritriyline, nuerotin,proxicam, and ROP Norco for bad pain. Its 5:53 am and I have been up since 4:45am, I am in so much pain I couldnt sleep. I hate this. I just checked the tracking on my meds and it says that it left TN at 4:00am TN time, but there is no scan hitting washington. I am praying it makes it today! I seriously dont know how much more I can take. _________________________ Heres to Pain Free and Happy Days!
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#530004 - 07/11/07 07:46 AM Re: Fibromyalgia
peknee peknee Newbie Registered: 08/04/04 Posts: 39 Loc: PNW	I too am in WA. Give it till about 7am which is in 15min. If it does show by then it will definitely show by 8:30am. Hang in there, I know how bad it can be.
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#530005 - 07/11/07 08:40 AM Re: Fibromyalgia
missvictory missvictory Member Registered: 11/10/04 Posts: 117	God bless you. I was diagnosed with fibro over ten years ago and suffer daily. My pain meds are a lifesaver and allow me to live a somewhat normal life, but the breakthrough pain, fibro fog, depression, fatigue and constant ache that never quite goes away keep me from being completely up to par. I find great strength spiritually, which is the only way I am able to get out of bed many days. I also have herniated discs, but the fibro is the most unrelenting. I am pleased to see more respect and research dedicated to this horrible condition...finally. The medical community is at last taking it seriously. My 22 year old daughter has both fibro and rheumatoid arthritis (since age 3) and is semi-disabled. Her rheumatologist said the fibro pain can be even worse than the RA. I had rheumatic fever and many strep infections as a child, which my doctor says attributed to mine. I too, went to doctors for years before diagnosis, undergoing tests for MS, and much more. Finally, a specialist connected the dots when 15 of my tender points were positive. He wisely tested me with gentle squeezes in these areas to test my reaction, when I did not realize he was testing specifically for these. I was told that fibromyalgia sufferers have abnormally high levels of Substance P in the spinal fluid, which transmits and amplifies pain signals to the brain. The disease can also be genetic; case in point with my daughter. And our rheumatic diseases placed both of us at risk. I found a very good online support group at DailyStrength.org. There are actually 544 communities! I joined the fibromyalgia group, as well as a couple more. It's really nice to connect with those who know what you are going through, specifically. While this (DB) site is WONDERFUL, I do feel that I sometimes need support that is a little more focused on specific conditions and needs. You should register today. Blessings to all of you and I hope you have pain-free days! Much Love, Vic
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#530006 - 07/11/07 08:44 AM Re: Fibromyalgia
missvictory missvictory Member Registered: 11/10/04 Posts: 117	Quote: I have had major stress all of my 38 years but the worst was my husband died 7 years he was 33 He died of mixing xanax ( he was prescribed alot!!! AND TOOK ONE OF HIS FRIENDS METHADONE PILLS. i FOUND HIM DEAD IN OUR BED THE NEXT MORNING. April, that is so sad that you have endured so much. What a horrible tragedy to have witnessed! I admire your strength and courage and pray that your life brings you a future of joy and love. Hugs, Vic
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#530007 - 07/11/07 08:54 AM Re: Fibromyalgia
TIADAWN TIADAWN Newbie Registered: 05/29/07 Posts: 47 Loc: The Rainy State =0)	To be 100% honest...I have never told anyone this. I wish I had cancer or something that is cureable. I fight everyday to lead a normal life and its getting to a point where the pain is so bad an the fibro fog is so bad that i cant work! I feel like to some degree I am losing who I am and my indepence. I have tried sooo hard to keep fighting but sometimes I just cry and want to give up. It is supposed to be 97 here today and in WA we dont have AC...this is going to be a BAD day for pain I can already tell by how my morning started. Yeah fedex does show its out to be delivered..THANK GOD! I really need that realif especially on days like today. You know my worst fear is that the pain will be so bad on my wedding day that I will have to be on pain meds. That I am not looking forward to. I get married in 31 days from today. August 11. I am SOOO excited. I also am going to see a Fibro specalist..hes the best in the Northwest. It took me 4 months to get an appt and then I lost my medical and my fiance put me on his. But to see this dr its $471.00 and I have to pay when I go tomorrow. Right now I am not working and trying soo hard to get unemployment until we figure out if can go back to work or if I can go on temporary diablity or what. These arent the type of things girls my age should worry about. This runs in my family. My moms sister has Fibro she was dx about 7 years ago and hers really isnt bad compared to mine. My mom and grandma both have chronic fatigue syndrom which is closly realted to fibro. Thank you all for your kind words they mean so much to me. _________________________ Heres to Pain Free and Happy Days!
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#530008 - 07/11/07 09:53 AM Re: Fibromyalgia
CareBearBuzz CareBearBuzz Newbie Registered: 09/07/06 Posts: 42	I'm so sorry about your condition and hope you can get some releif w/ this new specialist is able to help you out somewhat. I have been diagnosed w/ chronic myofascial pain and I have to say while I was pregnant and breastfeeding I did not suffer as bad. Yeah, it wasn't easy and I worked full time but the pain increased when I quit breastfeeding and I had to go back to really depending on meds to get me through. I hope your shipment arrives soon. Take care
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#530009 - 07/11/07 10:37 AM Re: Fibromyalgia
TIADAWN TIADAWN Newbie Registered: 05/29/07 Posts: 47 Loc: The Rainy State =0)	YEAH...My meds just arrived. I am so excited. This pain is so intense..I took a double dose to knock the pain out. I hate to do that, but its either that or go to the ER. I have been to the ER so many times this year they have labeld me a seeker. My primary doc who I have since fired wouldnt send me to a pain clinic until I no longer had medical insurance. Now that I have my fiances medical insurance they want my records and my old pcp stated in my records that I have seeking behaviors. I hate the way doctors treat fibro patients. I know that its is becoming a valid medical diagnosis and more doctors are realizing that it is a sever medical condition that is not all in our heads, but I still HATE the way the doctors act. I am so excited that this doctor I am going to tomorrow is sympathetic to fibro patients. It scares me that this is the rest of my life, but I am trying to be hopeful. I hope he takes me off the cymbalta. It gives me HORRIBLE restless legs and hands. They move constantly almost like convulsions. I have been going thru this since they put me on it a year and a half ago. Its only gotten worse since they doubled the doasge a few months ago. _________________________ Heres to Pain Free and Happy Days!
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#530010 - 07/12/07 10:46 AM Re: Fibromyalgia
aprilrain68 aprilrain68 Journeyman Registered: 12/01/06 Posts: 60 Loc: Northwest	Do you care if I ask what place do you go through?
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#530011 - 07/12/07 05:17 PM Re: Fibromyalgia
tache tache Member Registered: 07/01/07 Posts: 142 Loc: West Coast	Hi Tiadawn. I have been ill for about 12 yrs now. The original dx was ankylosing spondylitis, then rheumatoid arthritis, then inflammatory osteoarthritis, then lupus and a couple of years ago CF/FM. I know it can be very difficult, both the pain and fatigue can be so overwhelming. I am not sure they have "picked" the right diagnosis yet, I seem to respond to medications I shouldn't if I did in fact have CF/FM but I can say that as with most of the above illnesses you can have some very down times and then some not so bad times. I am currently feeling better than I have in years, don't know why or how long it will last but I will take it. It is frustrating when you feel as if it is so out of your control, I know that I need lots of sleep even when I feel better and that if I get a cold or the flu I am really down. The most amazing thing to me was the difference in my treatment by the Dr.s, when they thought I had RA etc. I was able to get the medications I needed but since I have been labelled with CF/FM I have battled to be treated seriously. I have been told to just get used to it!! Since I am feeling OK right now it is not so bad but I have had to take care of medications myself and have been looking at alternative treatments for this whole range of disorders. There is some interesting research out there indicating that many of these illnesses may be caused by mycobacterial infections and there are a couple of research groups in the states that have been treating people with antibiotic therapies. If I do get bad again I may consider following some of those treatments (if I can find a DR willing to try them). I spent the first few years getting progressively worse adding new symptoms often but I did plateau out and as I have said I am actually doing much better so hang tight, take really good care of yourself and try to ride it out.
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#530012 - 07/12/07 06:28 PM Re: Fibromyalgia
Brainache Brainache Stranger Registered: 12/07/05 Posts: 4	Hi everyone - I'm also in WA State. I don't know if we are allowed to mention places to go, but do look up the doc that's in "Seattle" under www.fibroandfatigue.com - actually in Kirkland/Bellevue, and she's done a lot for me. I have had 10 surgeries, continual fibro, brain fog, you name it. Now I do know I'm way overworked right now, which is causing some of my current suffering. I hate ordering the hydros to be quite honest. I get tired of having to take them because I think they probably make the fatigue worse. But she's a very good hunter when it comes to this stuff! She'll do some massive testing on you, and hunt down all sorts of issues. I have Lyme Disease, and you very well could, too. It seems to me that many of us in the PNW have a lot of fibro/fatigue/brain fog stuff, and I often wonder about our "moldy" environment! I have a/c in my office and in my house.. wish I could share it with you! I do need to get back in there to see her. My thyroid won't stabilize. I sure do sympathize with everyone. It would be wonderful to wake up one day and have no pain, and have a clear brain, and true energy! It's hard to not complain sometimes. I hear you, sisters!
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#530013 - 07/12/07 10:29 PM Re: Fibromyalgia
TIADAWN TIADAWN Newbie Registered: 05/29/07 Posts: 47 Loc: The Rainy State =0)	Ok so I went to my Fibro doctor today. Finally there is a light at the end of the tunnel! I am so happy today. I feel like there is hope and an answer for what I am going thru.... WE are going thru. My doctor is one of the nations leading fibromyalgia research doctors. He both pratices medicine specifically Fibromyalgia and hes doing many research studies. So here goes the novel I am about to write but I think this is VERY important for everyone to know. Many doctors dont know what to look for and fibro is almost and umbrella diagnosis when the doctor doesnt know where else to look. Research is showing that there are 2 kinds of fibromyalgia...primary and secondary. I have secondary fibromyalgia. I have to have a special MRI done of my neck with a additional set of scarns to show flexion and extension of my neck. There is a condition in the neck that is called Positional Cerivical Myelopathy. Basically the jist of this is when I look up at the ceiling, sit back in a salon chair to get my hair washed, or look to the ground my spinal cord gets compressed or irritated. It causes the exact same symptoms of Fibro- with one exceptional...it causes deep intense muscle pain. Primary fibro causes pain to the touch of the skin and to some degree in the muscles. So what the doctors need to do is confirm this diagnosis of Cervical Myelopathy with the MRI, then they can treat the secondary fibromyalgia. Treatment for this is PT/Rehab, Pain Management, and or Neurosurgery. 15% of patients need Surgery to correct the impingment if its to sever. So what this means for me. I get the MRI and get the correct diagnosis. The doctor put me on Ativan at night for sleeping to get me into Stage 4 sleep. With my Narcolepsy I have sever sleep issues. I am supposed to stay on the Nuerotin and we are increasing it to 3 pills 3 times per day. Finally I am going off the cymbalta which MAKES ME SOOOO very happy. I hate this stuff. For now he wants me to stay on the hydro to help with the pain because I am in such pain. We are going to continue to treat the fibro as we have been until I get the Cerivial Myelopathy taken care of. So Light at the end of the tunnel! If you want to know more, or have questions PLEASE ask me. I want to help out anyone else that I can. I apprecaite all of your kind words and support. Today is really the first day that I dont feel like my life is over before it really began. I feel like I can take control of what is going on, now that I know that there is more to it then just fibro. I always thought in the back of my mine there was more to it then just fibro. They think that in my back and neck injuries from some car accidents and then when the tubed me during my gastric bypass - is when the compression to the spinal cord happened. I have some handouts the doctor gave me and some websites and an article in Fibromyalgia AWARE magazine that explains most of what I am telling you here. Its hard to explain when you are not a doctor...but maybe you can take the info that I can give to your doctor and they help you too. Thank you everyone! Thank you sooo much for your Support, understanding and allowing me to vent. Sometimes talking to someone that knows what your going to is easier then talking to people who know me who-but dont live with this disease. Sorry for the rambling! I have a bad case of fibro fog right now so sometimes I ramble and forget what I am talking about....sometimes it like one right run on sentance! _________________________ Heres to Pain Free and Happy Days!
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#530014 - 07/12/07 10:31 PM Re: Fibromyalgia
TIADAWN TIADAWN Newbie Registered: 05/29/07 Posts: 47 Loc: The Rainy State =0)	April- My new ROP is MYWECARE. I found them on here. They were outstanding. Thanks! _________________________ Heres to Pain Free and Happy Days!
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#530015 - 07/13/07 07:22 AM Re: Fibromyalgia
tallhope tallhope Newbie Registered: 06/19/06 Posts: 48	My husband has fibro & myofaiscal pain syndrome....he's been in pain for 3 years...and that's being on oxycodone, avinza & Soma/carisoprodol. It's horrible, the mornings are the worst for him...we have 3 & 5 year old children...he missed Jeffrey's first day of kindergaden due to it. I really feel for anyone who has it, it's a hard disease to understand...I know it took me a while to understand, you look totally normal...it's hard to imagine that much pain without seeing somone who appears "sickly". I wish the best to you all & hope for milder days.
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#530016 - 07/13/07 09:50 AM Re: Fibromyalgia
frogspit frogspit Banned: reported to be soliciting for e-mail source scammers Threadhead Registered: 03/13/07 Posts: 954 Loc: on the sea	Do they not give opiate pain meds to treat the pain?Thats very unfair for all of you to suffer with no pain relief.I saw a program on the news where they were using antidepressants and narcotics to treat most people once fibro/cfs is diagnosed and where some patients were even put on strong antibiotics.I really hope you all find the right pcp's and ger some relief. _________________________ Tears of the dragon
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#530017 - 07/13/07 10:18 AM Re: Fibromyalgia
SMagnolia SMagnolia Member Registered: 05/15/07 Posts: 119 Loc: GRITS Girls Raised in the So.	Hi all, I just want to extend my deepest heartfelt regards to all w/ CP for whatever reason...it's horrible and so debilitating. I also want to share that I have been having several very serious conversations w/ the Man UpStairs lately about how desparately I need help w/ my Fibro. You all sharing your experiences on here has been literally an answer to prayer and I am so grateful to you all for being strong enough to share. I am suffering miserably w/ every symptom of Fibro (one of many things debilitated in this 50 yr old body) and I have no one to turn to. I just called my PCP today to leave a message for her to please recommend a specialist in Fibro because I cannot stand it any more. Bless her heart she's tried her best to help me symptomatically but she is literally learning along w/ me about this disease...needless to say it's a wee bit disheartening. I live in the NE area now and if anyone can recommend a DR w/in 100 miles of Long Island, NY I'd be grateful. Please know you are all in my thoughts and prayers and I would love it if we could keep this thread "alive" regarding Fibro. Thank you so much..... "SteelMagnolia" _________________________ "Steel Magnolia" A Woman may become callous on the outside from life's trying times but she NEVER forgets how to be Lovely and Feminine from within!
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#530018 - 07/13/07 03:02 PM Re: Fibromyalgia
neofate neofate GRAND Pooh-Bah Registered: 10/30/02 Posts: 1734 Loc: Southern, US	Quote: I live in the NE area now and if anyone can recommend a DR w/in 100 miles of Long Island, NY I'd be grateful. Please know you are all in my thoughts and prayers and I would love it if we could keep this thread "alive" regarding Fibro. Thank you so much..... "SteelMagnolia" Magnolia,.. Here is a comprehensive listing in New York of Rheumatologists (Many specialize in Fibro/CF etc) -- Take a look at those closest that seem to be up to par, and make a few calls. http://doctor.webmd.com/physician_finder...oc=NY&ln=&sd=96 _________________________ -/\/eofate "Efforts and courage are not enough, without purpose and direction."
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#530019 - 07/13/07 03:16 PM Re: Fibromyalgia
fibrogal fibrogal Enthusiast Registered: 06/23/06 Posts: 205 Loc: The South	I went to the rhemy "specialist" in my are and he pretty much blew me off. Refused to prescribe anything and told me that excersice would take care of everything. Yeah, but I need something to help me get out of bed in the morning first! Geez, thanks so much...not. I have been diagnosed with Fibro by several docs and they just don't get it. Unless you have it, or know someone who does, it is a nebulous "disease" that is in your head. I describe it as Chronic Fatigue with a nasty pain element. But that doesn't really cover it. Can anyone reccomend any doc in the metro Richmond area? _________________________ Remember, providing meds for pain patients is a business. Not to say the reps don't care, but when friendship and money come together, it's the money that wins!
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#530020 - 07/13/07 04:14 PM Re: Fibromyalgia
ocd1 ocd1 Banned: too many silly one liners... Member Registered: 02/19/07 Posts: 170	Clonazapam per myPCP.
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