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Fibro and Doctors

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  • Shalena
    replied
    Most doctors do believe Fibro is a fake diagnosis for those who are "mental" or a drug addicts dream diagnosis. The last doctor I saw was rather verbally abusive to me and actually tore me down so much I cried (I don't do that). She told me "even if you get the diagnosis there is nothing we could do for you so why does it matter", and then said "but to make you happy i could put in a few calls and see if any RA doctors will see you, but i'll tell you now they wont b/c of your insurance". I've only wanted to punch 1 other doctor as badly as I did her and that was my Urologist who diagnosed me with IC. He left me on the floor unable to stand after i rolled off his table crying, then watched me as I crawled out his office dragging my newborn with me. Didn't even ask if I was okay or needed help.
    As far as I understand you need to have pain all over your body and have at least 11 of the tender points. I get the extreme burning stabbing pain when I'm in a bad flare, my arms will also have a good 2 inch difference and normally my hip will go out as well. Other times I just have the all over sore-ness where I feel like a walking bruise and can't stand to be touched even lightly. It's not uncommon for my arms or legs to go numb or for me to hurt so much I can't move my wrists, and due to my back I can't hunch over or even bend b/c I'm unable to stand back up on my own w/out extreme pain. For the last 15 years sitting is about the only thing I can do long term and that's because I sit on my tailbone with my feet under my butt to avoid the discomfort of the Vulvodynia, and even then my bed is my saving grace. I'm a big fan of temperpedic because I can go to bed in a lot of pain and wake up in less and just have to deal with the pain intensifying as the day goes on.
    Anyways, my point is keep trying. Either you'll annoy every doctor you see until they cave and send you to a RA or eventually and hopefully you'll find one willing to help you. I've been searching for my answer for 16 years and I refuse pain med's to avoid being black listed as a drug seeker. I have faith that someday i'll get somewhere and it helps knowing i'm not the only one still fighting this rediculous battle with ignorant doctors. I wish you all the best!

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  • Yoga Girl
    replied
    Hi healingthoughts and Naturegal,
    As far as vitamins and herbs, I take a lot of stuff! I sometimes worry that I'm becoming a bit like Suzanne Somers! Have you seen the amount of supplements she takes? It's a bit over the top!
    For years now, I've been taking 5htp, which is a natural antidepressant and sleep aid. You can read about it in a book that I highly recommend called '5htp" by Michael Murray, N.D. He's a naturopathic doctor. The book actually has a chapter on Fibro! It also recommends we take St. John's Wort, which I also take.

    I also take krill oil (like fish oil, but better), a B-complex Vitamin by Rainbow Light, (which is food-grown and doesn't flare my IC bladder). I take Magnesium for muscle pain and migraines. I also take Valerian and Hops at night for my insomnia. A supplement that I really like is called Phosphatidyl-Serine. I read about it in the Fibromyalgia Network magazine. It was mentioned as a possible remedy for Fibro Fog and it seems to be helping me! My Fibro Fog has decreased, but this also may be due to the fact that I'm finally sleeping through the night, thanks to the other sleep aid supplements! You can buy all of these supplements and even the 5htp book on www.iherb.com. I love this site! They have the best prices, great shipping rates, no tax -- and the package comes to your house really quickly!. You will get a 5 dollar discount on your first order if you type in this code: SAL139.
    yogagirl

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  • healingthoughts
    replied
    Hi Yogagirl,

    What vitamins and herbs are you taking?

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  • naturegal
    replied
    Hi Yoga Girl,

    I will google Multiple Drug Sensitivity Syndrome. I bet I will relate quite well to what I find! I certainly did when I started looking up fibromyalgia, but in my mind the word "fibromyalgia" connotes trigger point stuff which hardly touches on how involved it really is with the central nervous system, abnormal reactions to pain and meds, etc. I get really stressed thinking about how little "they" know about what is going on in my nervous system and how to fix it. I can have some good days and then it's like a storm comes through and I am down for the count, having tons of pelvic and bladder pain, depressed, anxious, reviewing every little thing I did and felt and ate to bring it on, but I am now concluding that there is very little I have to do with what happens to my body and mind, there's something else at work and I might have to surrender to it and find a way to make peace with it.

    Having said that, I once again started taking a minute amount of Cymbalta to hopefully give me enough of a lift through the holidays and my son being home so I can enjoy his visit more. I am so happy he will be here and really can't be moping on a couch! I also started taking gabapentin 100 mg at bedtime. I did wake up this morning feeling subtly different in a good way, like I slept better or something was dampened down in my nervous system that usually isn't. So this gives me hope! Today I swam laps (gently) at the health club and walked on a local beach with my husband. So I finally had a nice day after a long time.

    I admire your educational and work efforts. It sounds as if you have found your calling! I have an R.N. license but no longer use it since there are no jobs in this area that I can do or want to do at this point. I have not found my calling! If you ever want to private message me, you are more than welcome to.

    Diana

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  • Yoga Girl
    replied
    Hi Naturegal,
    Well, I had to discontine the Savella after developing a horrible rash on the insides of my cheeks! My nervous system seems poised to overreact to just about everything! I read about something called "Multiple Drug Intolerance Syndrome" that can come along with Fibro and it pretty much described me to a T. I am now back to relying on my Gabapentin and natural supplements. Occassionally I over-do it or eat something that flares my IC and then I have to take a VIcodin for the pain. But for the most part, I am having luck with vitamins, herbs, and of course, yoga.
    I just graduated with a Social Work degree in May and I'm now taking an extended break. The struggles with my health, coupled with the desires of my family to spend more time with them have caused me to take a time out. I had been working in the fields of Hospice Care and Mental Health, both of which I loved! But my constant fatigue makes it difficult to work. I hope that I can get this illness to calm down and then get back into Social Work. Helping people is such a wonderful thing and it always makes me happy.
    Thanks so much for writing! What struggles have you been dealing with lately? Yogagirl

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  • naturegal
    replied
    yogagirl, how are you doing on Savella now? I hope it's helping you and you are able to tolerate it. I can relate to your reaction to Cymbalta; I too developed awful headaches to it after a year and had to go off, it's been a nightmare ever since with my IC, severe vulvodynia after a vaginal hysterectomy, fibro fog and depression and anxiety. I will give gabapentin (Neurontin) a more concerted effort, keeping my fingers crossed. I've tried and failed so many meds, having intolerable side effects to minute doses. Often migraines from meds too. I am certain I have central sensitivity.

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  • Yoga Girl
    replied
    Fibromyalgia

    Hi Erin,
    Thanks for responding! I'm sorry to hear how much you are going through. I just graduated with a Masters of Social Work. I don't know how we do it with all these health problems and pain! Well, I guess our spirits are strong even though our bodies aren't always so tough! I wish you well with your career.

    Savella is a drug approved by the FDA in 2009. It is specifically approved to treat only Fibromyalgia. However, it is very similar to Cymbalta. It is another re-uptake inhibitor of both norepinephrine and serotonin. I am on a ridiculously small dose in an effort to outwit my hypervigilant nervous system. You see, I ended up developing constant headaches on Cymbalta and I fear the same thing could easily happen with Savella. I often react to medicines. I, too, suffer from serious brain fog. It is so maddening and humbling! It is a wonder I graduated! I am also now waking up in the early morning hours and having a hard time going back to sleep. Even the tiny dose of Savella seems to be helping me sleep more soundly.

    Thanks for replying! It helps to know I'm not alone. Take care,

    Julia

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  • ermkenne
    replied
    Yoga Girl,

    You sound a lot like me! That is all exactly what my pain management doctor told me about my central nervous system. Good to have an answer, but not good to be in pain or ill. I have been on Neurontin for over a year now, and it helps, but I also had to take a lot of other pain medications for my IC and also for my fibro to deal with my pain. I am happy that the neurontin has helped you a lot! I did notice a difference in my bladder pain while being on Neurontin as well.

    I have not heard of Savella, what is it? I was diagnosed with fibromyalgia this past month, no fun at all. It makes sense why I am always in pain though, even when my bladder is not. I have issues I notice with brain fog, and some sleep issues.

    Hope you are doing well.

    Erin

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  • Yoga Girl
    replied
    Fibromyalgia

    Hi everone,
    This is my first-ever post. I, too, have IC, Vulvodynia, and Fibromyalgia. My Urogynecologist told me that I have an "up-regulated nervous system" which is basically central nervous system sensitivity syndrome. So all of my pain disorders are related to a hypervigilant, overactive nervous system. The spinal cord and brain are amplifying sensory input and pain signals. It is not fun. I often feel lonely, marginalized and misunderstood. I had severe unrelenting pain until I began taking Neurontin (Gabapentin) two years ago. It really helps the pelvic pain. I have recently been diagnosed with Fibromyalgia and began taking a tiny dose of Savella. My system overreacts to almost all medications, which makes things challenging. I get allergic reactions and intolerable side effects. So it remains to be seen whether I'll tolerate Savella. But the all-over body aching, brain fog, and sleep problems are pretty bad. It helps to reach out to all of you. Thanks!

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  • ermkenne
    replied
    SandraCT,

    You discuss my fibro symptoms to a T. I get pain all over my body in my joints/muscles, especially in my back/hip. When it gets bad I get it in my neck, wrists, elbows, and knees to a point where I feel completely crippled. It is kind of like my whole body just locks up and cannot move right anymore. It just hurts to move anything for fear of more pain. My pain management doctor just diagnosed me with fibro. He was the first doctor to ever ask me if I had pain anywhere else, I finally told him about the other pain, and he did a fibro check and said that I did have it. He barely touched me and said that I had a severe reaction. It does not flare up all of the time, but when it does I feel completely crippled. I thought I was the only one who felt that way.

    I already go through pain management for my IC, but since my pain in all is not getting better they are not sure what to do with me. My doctors believe in it, and they do not label me as one who just wants some narcotics. I take my medication when I need it, and when the pain is out of control. It was good to finally have the fibro be answered though, since I always thought I might have it, but just dealt with the pain and just attributed all to stress. My new pain doc says I have a central sensitivity syndrome, where my bladder, my body, my bowels, are so sensitive that they can be set into pain or flares very easily.

    It sucks. I am on a lot of meds to help with the fibro, the IC, and other items I have wrong with me. They are looking into a spinal cord stimulator for me. I hope you can find some help or some solace. There are a lot of articles in the medical world that support fibromyalgia and central sensitivity syndrome.

    Erin

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  • curlycue
    replied
    Fibro

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  • ICNDonna
    replied
    When I had the ache-all-over symptoms it was caused by potassium deficiency. I feel fortunate that I don't have fibro.

    Donna

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  • arkitekton
    replied
    Donna, question for you on symptoms

    You mention the "ache-all-over symptom". Is "burning-all-over" also a symptom of fibromyalgia?

    My pain management doc, when he tests for fibro, simply and quickly runs his hands over all the body parts and repeats "Does it hurt?"

    My symptoms, when I have them, are the burning I mentioned, particularly in my torso, an extreme sensitivity to touch and pressure (a light pressure in various places is very painful--I was surprised to learn other people don't experience light pressure this way), but I don't have much joint pain. Does this sound like fibromyalgia to you, and if other diagnoses are possible, in what direction might you suggest I look?

    Thanks,
    ark

    Originally posted by ICNDonna View Post
    There may be some doctors who don't recognize fibro, but I think many, if not most will test for it if a patient has the symptoms. If you feel you may have it, by all means talk with your primary care doctor. Fibro, much like IC, is at least partially diagnosed by ruling out other possible diseases. There are some pressure points that can lead to diagnosis. There are other conditions that can have the ache-all-over symptom --- including deficiencies of some critical nutrients.

    Donna

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  • Daisy Mae
    replied
    I was told by one of my charge nurses before that "fibromyalgia is a waste basket diagnosis... when someone keeps complaining and the doctors don't have a label for it." I was furious! I asked her where she got her information and it turns out she was told this by an instructor in the class where she became a massage therapist.
    Fibromyalgia is very real, and doctors now know this. There are even a few things that started showing up with fm that is tangible on labs. Vitamin D deficiency is one of them. When your muscles are so knotted up and burning that you go through a tube of icy hot in a week and still hurt, it's very real!!
    I have followed up with a neurology team and rheumatologist and they have now diagnosed me with inflammatory arthritis and connective tissue disease and your symptoms seem a lot like mine. Please, see a doctor, you don't need to suffer in silence. I'm glad your sister has her health. Maybe she could use her career platform to educate doctors on the reality of autoimmune disorders. I am a nurse and use mine shamelessly to help others recognize the struggles people deal with when they have "invisible illnesses."
    Sorry. I'll be stepping off my soapbox now.

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  • sailawaygrl
    replied
    Whatever it is you should see a Dr. You shouldn't have to suffer in pain when there are plenty of options to help. I take cymbalta and gabapentin, they help my IC and my fibro.

    Sandra

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