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neuro diagnosis says i have fibromyalgia need input please!!!!!!!

starsinhereyessstarsinhereyes Posts: 583
edited 06/11/2012 - 8:38 AM in Fibromyalgia
i need all input please,i've just come from my new neuro doc
this was my fourth visit after all the many long months,
and tests and exams.and different docs.my doc says i have firbromyalgia.
he wants me to start on cymbalta 30mg.last doc had me on lyrica and i got no relief she was telling me i had other nerve condition.
i really been getting worse leg pain and arms feelin like someone holding them down.
he also wants me to see a rheum specialist to confirm diagnosis. i can of course goolge it and he was good to explain info.
i just was cryin at first cause of fear i guess but maybe i was cryin cause after all my doctors and explainin over and over someone is actually listening to me and can put a name to all this pain...
please any of ya spiney freinds that have fibromyalgia tell me how ya deal with it.. what meds are ya on...and how do ya live with this.. i cant even fold laundry..its all really alot
please advice needed
thank you
neck,bone spurs pain started 04, back issues and fusion l4,l5 06~hardware removed.
good few yrs. 09 pain sharp, numbness feet,legs, diagnosed fibro, neurop. legs.lung issues.
daily goal do good thing for someone.


  • Hi Mary,

    A friend of mine has fibromyalgia. Some days she's practically bedridden so can only work p-t because of it and even then, has to be allowed to take sporadic days off. I don't know what meds she's on, but can ask. I know it's affected her life massively; she's very religious and that helps.

    At least you now have a diagnosis. I know from experience that it's dreadful to be in pain, have no diagnosis and have doctors sneer at you (well they did at me anyway!). I was even accused of this being psychosomatic by a very experienced PCP (elderly anyway) which was incredibly upsetting. When the neurosurgeon told me I had a collapsed disc, 2 trapped spinal nerves and DDD, I cried too, so know exactly how you feel!

    I'll ask her what meds she's taken, but the upside is that some days she's a lot better and can do a lot more.

    Bye, Val
    PS I'm almost sure there's a recent post where someone said their surgery had actually triggered fibromyalgia; I'll try to find it for you..............
  • So sorry, it sucks, I know. I've had fibro for more than 20 yrs. I don't understand these people who say they can't work; it's not easy, but the pain do'snt go away just becouse your at home in bed. I don't miss too much work becouse of it, but recently I have been down for three weeks twice. Screaming pain, I think it may be something worse.

    My chiro says narcos don't work for fibro, but a vicodin will hold me over and I can work the day through with some discomfort.

    Best thing to do, they say excercise; but who can do that when the pain sucks all your energy? I find simple yoga, cat and cow, folded lotus can give some relief. I also bend at the waist while standing and allow my head and arms to hang loose; this can give you a little boost of energy.

    I don't do admin anymore, I went to retail when I could no longer sit for long periods of time. I now own my own business and do mobile pet grooming. I believe it's important to keep going, sometimes my work takes my mind off the pain. Push yourself to be social and you will be glad you did it. Everyone has a cross to bare, don't be a victim!
  • I was diagnosed with Fibro about 15 months ago and can attest that it is horrible. The medications that worked the best for me for the Fibro was Savella and Lyrica (Lyrica 1 every 8 hours). Just when I found that this was helping, I lost my insurance. Now I am taking Doxepin 100 mg each night and Lyrica every 8 hours. Most people that you talk to about it do not understand how devastating it can be. I read a statement by someone else that helps me explain it to other people--"Remember the worst case of the flu you ever had and how bad you ached all over, now imagine that achy pain ten times worse and that is close to how Fibro flares feel". Any weather changes (I can tell if it's raining within 100 miles) bring on Fibro flares for me, lifting something more than a 5 lb bag of potatoes or walking or climbing stairs bring on delayed flares (anywhere from 1 -24 hrs later). I live in the Ohio Valley where the weather is constantly changing and it's raining right now, man it's rough. I had a hard flare one day last week and was sitting in my recliner trying to eat supper, my wife brought me a napkin and dropped it beside me. The napkin brushed my arm and I thought I was going to die, it sent waves of pain all over my body. Like Pamela said, pain meds don't touch it, and there are times when all I can do is curl up in a ball and pray for it to ease up. I bought the book, Fibromyalgia & Chronic Myofascial Pain A Survival Manual by Devin Starlanyl & Mary Ellen Copeland. This book helped me have a better understanding of my Fibro, I even read some of it to my family, to help them understand. Your local public library may also have a copy. I hope this helps you out some. Sorry for the long read, I guess I'm one of those long-winded preachers.
  • I can feel your relief at getting a diagnosis! Read up on all you can about fibromyalgia. They diagnose it by trigger points that are particularly painful to someone with fibromyalgia, as well as other symptoms such as debilitating fatigue. A lot of fibromyalgia care has to do with taking care of yourself.

    Best wishes to you friend,

  • thank thank you for all the great respones.i've written a plan for myself goals for each day.
    and will include yoga into that. i am starting swimmin today infact slowly.
    alot of ppl i have told some say omg no. and i tell them i wont let this and anything stop me. i have not done much all summer just test and test and docs.
    altho the weather is changin here i can feel the damp.i am goin to walk and swim indoors.
    alot of ppl that i have reach out to tell in different cyper places,some have said i have it and ya just learn to live with it.i hope all those that have will share the different ways they do this,cause this is all new to me..

    thank you val,pamelaG, preacherman and marainne
    thank you for you great words
    neck,bone spurs pain started 04, back issues and fusion l4,l5 06~hardware removed.
    good few yrs. 09 pain sharp, numbness feet,legs, diagnosed fibro, neurop. legs.lung issues.
    daily goal do good thing for someone.
  • Sorry to hear that you're suffering so much. I highly recommend any books by Dr. EDITED, especially 'From Fatigued to Fantastic.' It is chock full of information, and even tells you how to talk with your doctor about these new treatments.

    If you can, try to find a doctor that uses a protocol like Dr. EDITED. I have a doctor here in Sacramento that is awesome if you are anywhere near Northern California or Reno, NV.

    Post Edited by Authority Member haglandc to remove name of medical professional
  • Edited by moderator paulgla. Inappropriate.
  • Hi Watergirl
    I hope you are feeling better since you wrote your post.
    yes a good Doctor is a must. It is difficult to find meds to help with different symptoms and potential side effects so it is a bit of a bumpy road for awhile. Have not tried it myself because of current back situation but have rx for warm water therapy that may help you as well.
    Take it ez listen to your body simplify your life.
    make sure even if you need an rx or more pain relief that you get good sleep that is what helps you feel better.
    Best wishes to you
  • Yes, I agree on the water exercise! My mother in law and sister in law have fibromyalgia. Since my husband is a massage therapist mainly as a hobby and maybe will be by trade in time, I had him press on those fibro spots (found them online), and that was before I saw the doctor. It seemed very likely I had it, and sure enough, I guessed right. I guess we are lucky - the doctor in our area is well known and goes to give conferences to doctors all over the place. He was easy to get and easy to make an appointment. He does prefer Lyrica for fibro, but I have not yet tried it as it is a third tier medication. But, I am taking gabapentin at night to help sleep. He wants me to take it during the day, and I can't drive with it, so very little do I take it during the day! Also, muscle relaxers help me sleep at night, too. The gabapentin helps existing nerve damage from severely blown L4 effects when it blew and post surgery residual - yah, I am one of those fibro and back patients. Best of all, if I lose my primary, the fibro doctor is also a primary doctor. I hope I don't lose my primary because I like her a lot.

    Hang in there, and I am going back to trying to get to the pool myself, despite back pain. I do love the water classes, and any exercise is so good for anyone's outlook! Main thing is to do it gently - do not overdo!

    Oh, and they say that fibromyalgia can cause people to be forgetful which I was surprised about. I already do have something which can cause that, so I guess I just have another reason to be kind to myself if I forget something. And, I have to be kind to others, too, when they may be forgetful. One doctor I go to has the moto, "in the end only kindness matters" - a neuro with his own practice, but is affiliated with a big hospital.

    OPh, I almost forgot. For anyone with asthma that is aggravated by sleep medications, we find ourselves telling doctors that we cannot take anything that promotes good sleep that is that form of medication. I do take Melatonin, and have taken another 3mg of it when I may wake up after sleeping for three hours. So far though, with the gabapentin and muscle relaxer (even generic version of flexeril, although the doctor would prefer another brand name) I do get better sleep, like 5-6 hours which is better than waking up every night after three hours of sleep! Some homeopathic supplements have helped, but not any with like the true sleep inducing herbs as those do aggravate asthma. About the gabapentin, it does require a tapering onto it, as well as a taper off of it, sort of like prednisone. So, of course, check with your doctor to get it written correctly. And, if your doctor does approve of you trying gabapentin and it works, remind him that it is important to get blood tests done while on it. You can look it up on line. It is either the kidnew or liver tests that need to be done. My doctor says it is pretty safe.
  • I had heard of fibromyalgia years ago. I had a physiatrist say I had myofascial pain syndrome. I have ddd in my neck and low back, as well as nerve damage in my hands. I have ached all over for a long time. I have specific areas from the ddd and related nerve pain from my L4-L5 being herniated and almost gone from advanced degeneration. I went to a pain management Dr. recently and he wanted to do epidural injections for where he thought they could help. They have never helped. My pain is deep muscle pain, stiffness and aching. My skin doesn't feel painful. The pain doc said he would consider fibromyalgia. I looked it up and when it said there was a high correlation with IBS syndrome I took notice. I had a flare of that for no apparant reason, and it was like attacks. Nerve related in intensity and pain. Diet etc. wasn't a factor. I went to my PCP she started me on lyrica. I am not sure why this is working, but it is. Cymbalta did nothing for me. I am on Paxil for panic disorder, and have been for 10 years. Lyrica seems to work with SSRI meds from wh at I have read. Sorry it didn't work for you. Water therapy and hot tub help me. Candrews
  • Pamela G.. not sure if your a member or not, but I totally disagree with you on the matter of working with Fibro. I want to know how you expect a person that has legs that give out without notice and falls (like I do) 3-4x in a month understand how they can work. I did nursing and I can tell you that I would NOT want an employee of mine with the complications working and have their legs give out. I would love to find a job that would allow me to sit more then 2hrs in a chair without having so much hip pain or even stand for more then 1 hour without having a leg go limp or feet fall asleep that you can't walk on them. There are people that have a mild form and then there are us that have a sever form of Fibro. Even working from home there are weeks that I can barely type low and behold hold a cup in my hands and keep it from falling out within the first couple minutes. I for one can not take pain meds before going to work or I would fall asleep driving or be so washed out that I couldnt consentrate on what I would have to do. For the ones that can work and have Fibro my hats off to you cause I know it has to be hard but don't toss mud on those that can't work due to meds or our symptoms being over the top. It comes to everyone in different stages some are lucky to have mild and some are unlucky to have the sever. You made it sound like we are using it as a get of jail free card when all I would love to do is work and be able to pay my bills and keep from losing my home or a car due to not having 2 incomes. Oh and I dont have insurance due to my husbands insurance company wont take me since I have had other surgeries and seizures. So I have to figure out how to pay med bills on top of normal everyday living. Personally I think you owe some of us a sorry for what you said about the ones not working.
  • Hi and Merry Christmas. I was diagnosed many years ago with fibro but it was called Neuralgia and then myofascial syndrome. I don't remember a time in my life when I didn't have the same symptoms with more added on from time to time. My Dad had the same thing so I don't know if it's genetic. A BAD flare will begin with pain in the exactly the same spot on my upper chest. I can feel the muscle there bulge and times will spasm. After that for ever how long, the pain will travel to many areas throughout my body. I have extreme DDD/ Osteoarthritis and many discs have ruptured or buldged over the years. The last MRI I had says Rotator Cuff Tear and the reason I mention this is that with every issue that happens the fibro is so much worse. When the pain is at it's worse, I just stay put in my lift recliner with a neck heat massager. As soon as the pain lifts a little I MAKE myself get up and moving. I have ALL the symptoms as others with fibro with some being worse than others and some stopping. How I wish I knew what makes them stop! I wish for all of us more times of just a little less pain. I sure pray that ALL pain could be taken away. Merry Christmas to you and you and you..and LOVE to ALL. Ess
  • Fibromyalgia is diagnosed by tender points, not trigger points. Many of us with fibro also have chronic myofascail pain which is trigger points. Fibro is a malfucntion in the central nervous system that involves a lot of different neruotransmitters. It has been proven to affect certain areas of the brain that proves it is a real disease. Fibro affects every system in the body so it is common to have IBS, asthma, GERD, and migraines with it.

    For me the most help came in the form of massotherapy like myofascial release or trigger point release massages. I also have a wonderful psychologist who has used hypnotherapy and stress relief therapy which gave me my life back. Gentle yoga and meditation along with the deep breathing really help as well. One of the main triggers for a fibro flare up is stress and anytime you are under a lot of stress, you will probably have a bad flare up. The weather can cause flare ups as well.

    In addition to my fibro and chronic myofascial pain, a recent MRI showed I have stenosis in the L3 and L4 areas just above my spinal fusion done in 1998 and also significant arthritis in the low back.

    You may have to try a lot of different meds to find what works for you so do not get discouraged. Most of us with fibro also have sleep problems due to not getting enough delta sleep and having many alpha intrusions into delta sleep where you just about wake up but not enough that you remember, hence we wake up stiff and achy. I have a program of 30 min. of range of motion exercises and stretches I must do every morning as soon as I get up so I can move. Hold your head up high and don't let anyone tell you this is all in your head because it is a proven illness.

    sue in ohio
  • Please stay strong and don't let this diagonsis get you down. Crying is a good thing becasue you don't want to keep things in and cause yourself added stress = makes things and pain worse in my opnion. You can go on to have a full and fruitful life even with fibro >:D< . Each persons case is different so the best that we can do is share with you and have you take away what seems appropriate to your personal diagnosis. You can work if you can make adjustments to the work place as I have. I certainly could not stand on my feet 8 hrs a day but I'm in a position that allows me to make a contribution and a living. At 65 I have serious back problems that result in chronic pain and if that wasn't enough I was diagnosed with fibromyagia last year. I am a RN and a nursing home administrator and still working. I am taking neurontin 4 times a day for the fibrmyalga with relief withing the first 48 hours. I couldn't stand the elecrical type pains which were going from one extremity to the other constantly. I did do some water PT which is helpful - you may want to try it = feels great :))) . You are your biggest advocate so push the limits with ?'s and trial and error until you find what works for you 'cause something will even though this diagnosis can be life changing. Just think of it as a positive change and take care of yourself because we are each very precious commodities. The writer with these comments is correct "Fibromyalgia is diagnosed by tender points, not trigger points. Many with fibro also have chronic myofascail pain which is trigger points. Fibro is a malfucntion in the central nervous system that involves a lot of different neruotransmitters. It has been proven to affect certain areas of the brain that proves it is a real disease. Fibro affects every system in the body so it is common to have IBS, asthma, GERD, and migraines with it." I said to the diagnosing MD that it was an imaginary disease but the meds worked so I knew it wasn't. I am still working full time with diagnosis of fibro, DDD, scoliosis, arthritis of the spine, spinal stenosis, bulging disks at L4-5 and S 1-2, foot drop and I had dizzines and falls at first. Now I don't fall as much but I'm also much more careful with muself and do fallonce in awhile still. I take muscle relaxents and pain meds when I need them for my other diagnoses. I also see a therapist and take antidepressants. I'm physically a mess but I keep telling myself to get up and going if I can :))) . I'm fortunate to be in a position where I can work from home at times (due to phone, computer and fax) and when in work I can do things to keep comfortable. However, I must admit that only this year have I made living with my medical conditions a priority = limited bending, no lifting,etc as until my mother's passing last yr I was her primary caretaker which made this impossible at home but I still did these things when I didn't have to. And I feel better than in a long time. I would go work with severe pain looking like a pretzel over and over again which only made things worse. Now I try to not cause increasd pain by my own actions by doing something that I knew would cause an increase in my pain level. Having a good life with these kind of diseases means looking at your life clearly and adjusting it as much as possible to make this better for yourself. I wish you the best because I know you will deal with and overcome this. Just keep yourself in a good place mentally and keep following up with the MD that seems to treat your fibro the best. Only you can make that call. ;))
  • I feel awful for what you're going through! I just recovered from L5-S1 surgery for herniated disc. The pain was awful but yours sounds much worse. Staggering.
    I don't have any direct experience with fibromyalgia but the Doc who finally cured me of my issue mentioned fibromyalgia in his book as exclusively caused by the TMS that I had.
    That's the fantastic news. My treatment was just to read a book (okay two books, tho I'm still workin on the second). The first was "Healing Back Pain: the Mind-Body Solution" and the second which I feel is more appropriate for sufferers of fibromyalgia is "The Divided Mind." Both are by John Sarno, MD. I have to say they opened my eyes about the truth of my condition, and once I understood it, I began to improve. It's been a week since I started reading the first book and I now feel great! I still have flashes of pain now and then, but I just stop and think if there's anyone or anything I'm angry about and it goes away in a few minutes.
    Anyway I know how bad pain can be, for you folks it's even worse so I really hope this can be a solution for you.
    My entire story post is under the Lower Back Pain forum.
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