Fibromyalgia Update: It Just Gets Worse?

Magnetic Resonance Imaging - Human brain side view

Magnetic Resonance Imaging – Human brain side view (Photo credit: Wikipedia)

July 30, 2012

My Fibromyalgia update is not full of rainbows and unicorns and fairy dust, it’s plunking along through a slow and painful process, apparently it goes on forever. Now, in addition to Fibromyalgia and the auto-immune disease, Hashimoto’s Thyroiditis I’ve had to deal with Nuerological issues as well. Imbalance? Ah yes, you know it well.  Now I have another doctor to include to my semi-annual repertoire  and I have a feeling it isn’t ending here. Just a feeling though…..

I’ve already had a brain and cervical spine MRI, the results were fine. My new Nuerologist (yeah, now I have one of those too) sent me a note saying that everything was normal given my age. “MY AGE” as if I don’t feel old enough. I do remember in the exam he exclaimed” So, what you are telling me is that you were basically a healthy woman until you hit the age of 50.” That grounded me, but it is so true. I know we weren’t supposed to trust anyone over 30 when we were young but no one said anything about falling apart when turning 50. You would think that would be written somewhere, or at least a warning sent when you are 45, (“ENJOY YOUR NEXT FIVE YEARS!!!!) not that we would have believed anything so preposterous.

Whoever says 50 is the new 40 does NOT have Fibromyalglia, I can pretty much bet on that. Tell a person who has Fibromyalgia that 50 is the new 40 and you are most likely to get a response like “my ass it is.” I couldn’t agree more.  I am so frustrated with different doctors and medications, I’m tempted (merely tempted) to talk to my Rheumatologist and see what he says about stopping Savella. I know, I’m ALL talk, Savella helps me, at least a little. However, my Rheumatologist put me on something called Topomax which he said would help me and I took it for many months.  I took it until my balance was so off kilter (even more than usual) and my forgetfulness was at an all time high AND I was getting tingling in my feet and hands; that scared me. One look at my medical history and the Nuerologist immediately said: Topomax: First two side effects are tingling and imbalance. Seriously, Did my Rheumatologist not know that? You would think that my Internist would be involved in some way but if it isn’t strep throat or a sinus infection, “it’s not her job.”

Once in awhile I have taken to using a cane, especially when walking our really strong 5 month old puppy, but with an 18 year old daughter, who embarrasses easily, I think I will use it more in three weeks when she goes to college. Wednesday, I am going back to the Nuerologist for results of my tests, I will see what he has to say. I’m bringing my husband along with me to listen; I am a horrible “listener” at a doctor’s appointment. I think it’s called the “white coat syndrome” whatever the doctor says, I seem to only remember the one or two bad words. My husband is much better at things like that than I am.

Next week I will go to the Rheumatologist and try to straighten things out. I would ask one doctor to talk to the other but in the past few years I have noticed they really don’t like to do that. I know, “LIKE?” I will insist, because the only one who can manage my healthcare, let’s face it, is me.

I’ll keep you posted.

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13 thoughts on “Fibromyalgia Update: It Just Gets Worse?

  1. Pingback: Should We Take A Moment To Mourn Together? | Hibernationnow's Blog

  2. I hope the neurological tests come back okay, which might mean it’s a medication issue. Also, as Ash mentioned a deficiency in a vitamin like D can cause other issues — if you are taking calicum, there is usually Vit. D3 in it. Also vitamin B12 is another vitamin that can be deficient.
    I discovered I have low sodium levels due to meds, and other things. Low sodium can lead to balance issues and other things. You might want to google it.
    I know pixie dust doesn’t “cure” you, but some whimsy when you are feeling rotten can make you smile — even a smile can be of some help. So, I’ll keep believing in fairies and pixie dust — even though I it hasn’t solved my mental and physical health. Try a smile, as corny as it sounds. But then, I prefer to believe in the magical — it can’t hurt anymore than fibro and other pains.

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  3. Laurie, Is imbalance an “obscure” side effect of any of the meds you’re on?

    I agree with you even the best fibro doctors are stabbing in the dark trying to be helpful. No one knows the whole picture and I believe there is more than one cause/disease.

    50 and peri-menopause was when my fibro became full blown too. It’s 17 years later and as my body declines with age the fibro “inclines” with creative new ways to express itself.

    Sending you my best balanced love,
    j

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  4. Its ok i went to my dr suicidal last year ,in the commercials for Lyrica it even mentions suicidal thoughts as a possible side effect and yet the nurse practitioner and family Dr both said “really i didnt know that”.It would be nice to have a team that communicates on our care but i think the problem is dr’s of different specialties just dont like to agree on anything so we definitely have to be our own advocates.
    As for the cane i use mine always ,in fact im going to get a second one with a different handle for the winter months.

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    • Totally agree, I am going to ask the Dr. in a few days which cane to use. I definitely need it in the winter but it also makes me feel less afraid when I have it, if only for reassurance. I fell frontwards a few weeks ago and I don’t think I blacked out but I do not remember the fall. It’s always something……..love, Laurie

      Warm wishes, Laurie https://hibernationnow.wordpress.com

      >________________________________

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  5. Okay, honey, first… breathe… this is, unfortunately, the way most doctors work. You must find a doctor who specializes in fibromyalgia and who will write all your scripts. A good place to look for a doctor is at a fellow bloggers site:
    http://quixoticmeblog.blogspot.com

    On the right hand side at the bottom, there is a place to input your location, and will give you back a list of “good doctors.” You can also google “fibromyalgia good doctor list” and there are several sites that keep lists. It doesn’t have to be a rheumatologist, either.

    In the best case scenario, you have a PCP who is knowledgeable about FMS and who works with your FMS specialist.

    I don’t know why they started you on topamax instead of Lyrica. They are both in the same category, anti-seizure medications, but topamax is often used for neuropathic pain as well as migraines (I started it back in May). Lyrica is one of the very few drugs FDA approved for FMS, and helps with both pain & fatigue. You can take both, but at lower doses than if you were only taking one or the other.

    Be very aware that those of us with FMS & ME/CFS often are VERY sensitive to medications, and often require a much lower dose than a healthy person, will often get unusual side effects, and often need to take the dose at a different time of day then a healthy person. Both Lyrica & Topamax are supposed to make you sleepy, for instance, but they have the opposite effect for me.

    Topamax should be started at 25mg taken once a day for a minimum of a week, then upped by 25mg a week, so the second week you take 2 25 mg doses, etc. But many of us need it to be spread out over a longer time period, as upping the dose too rapidly will lead to all those side effects. I’ve been taking it since May but am only taking 100mg a day.

    Also, you cannot just quit taking topamax – it should be tapered off of.

    It doesn’t have to get worse, Laurie. I left Ohio for Virginia and tried different doctors until I found one who could help me. I’m a mess right now, but I have far more than fibro, since I also have ME/CFS and Lyme.

    How about when you go to the doctor you take along a recorder, or use your phone, to record what they have to say?

    Have you read the Ash’s Advice I wrote on my blog? It might help…

    Part 1:
    http://wolfdreams.wordpress.com/2011/04/18/ashs-advice-part-one-of-many-to-come/

    Part 2:
    http://wolfdreams.wordpress.com/2011/05/12/ashs-advice-part-2/

    Cheering you on & here for you, sending lots of Love!
    Ash

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    • Also, never, ever, let them start you on 2 or more new meds at the same time unless it’s an emergency, or it’s something like vitamin D (almost all of us are deficient) that really has no side effects. If you start more than one thing at a time it will be impossible to tell what is causing what effect – good or bad – in your body. My LLMD virtually always starts me out on anything new at a low dose, and we slowly increase it to see how I do.

      Sometimes it takes a while for side effects to show up. Cymbalta and I don’t get along – it makes me very weak & shaky, but the effect is so slow that it took me a long time to realize that it was the Cymbalta causing the problem (and we repeated the Cymbalta trial to be sure).

      A little known side effect of any of the anti seizure meds such as Lyrica, Topamax, and their predecessor, Neurontin (gabapentin), is loss of bladder control. I have taken all of them and continue to, but have to be very careful with the dose – too high & I sometimes dribble, usually at night. Even my neurologist didn’t know about this side effect. But the Lyrica really helps the back pain I get from standing, so I don’t want to stop taking it. I just have to be very watchful and listen to my body.

      Everything you take is a trade off. You have to decide – in collaboration with your doctor – as to whether it’s actually helping you, and if it is, is it helping more than any problems or side effects you might be having. Some patients leave this entirely in the doctor’s hands, but you are the one who has to live with the side effects, and the one taking the risks associated with the medication.

      If your doctor doesn’t want to work collaboratively with you, or is one who spends 5 to 10 minutes with you, or doesn’t listen to what you are feeling and have to say, then look for another doctor.

      (I feel a blog post coming on…)

      *gentle hugs*

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      • My Rheumatologist is a guy I love. He is the best and very sympathetic. I guess he made a mistake. I will see him next week and talk about it with him. We want doctors to be perfect and helpful but no one can be right 100 percent. I had no idea about the side effects until the Nuerologist. I will definitely look at YOUR website and the other one you mentioned. Thanks!

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