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Follow-up doctor appointment jitters or concern
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rowan73 posted:
I have a follow up appointment tomorrow. Long story short. It's with the doctor that has the most to offer. A neurologist. Only 1 rheumatologist in the county and she isn't taking new patients. My symptoms are becoming worse. It seems that something else is going on at the same time as fibro. And it's not just my back issues. I want to ask for more tests or a more comprehensive exam. But both the primary care and neurologist are dragging their feet. They don't let me finish when I talk. They don't. Seem to check or read the chart before coming into the room, then have preconceived ideas of what happens next. "Standard operating procedure". So, after spending most of the allocated 15 minutes Rereading the chart I get nowhere. No questions answered. No referrals, just patronizing looks.
Beyond getting new doctors, does anyone have any suggestions? I think I may have hypermobilty issues that have gone undiagnosed and most probably CHRONIC MYOFASCIAL SYNDROME in addition to the fibro. I was told by one rheumy office I called that fibro and Cms were the same thing. Duh... There's a difference between tender and points in the body that start a cascade of pain and muscle/nerve firings. When I was in PT with massage, the therapist saw it all the time. I also have other symptoms that aren't consistent with fibro but are with the myofascial syndrome. And the treatments for each are different. Low dose Norco twice a day and muscle relaxants just aren't cutting it. I'm. At a pain level that averages as 7-8 out of ten daily. And a 9 when tired.
help..please..give me strength...
and ideas...
Rowan
Smile you're never alone, and laughter is the best medicine. As Bobby McFerrin said Don't worry, be happy...an anthem for me...remember stress makes it worse ;)
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wantalive responded:
I had a rheumy tell me FM doesn't exist. That's how good our care is if that's our specialist. My pain levels are close to you. Without sounding like one of the zillions of drug seekers, my primary who I've had for ten yrs. is retiring. I need to find a new one.that will use hydrocodone as part of treatment along with excercise and counseling. You mentioned that wasn't helping you but I assume that your MD is willing to prescribe. Would you please share his name? I don't know where to look for a doc as great as the one I have. Portland,OR director of school of nursing has a awesome program. research it on line.and let me know what you think.
 
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meg_k replied to wantalive's response:
Rowan,

We have all been there. Our situation gets so minimized by professionals all the time. I think it's unrealistic for someone to expect you to live with that much pain. I have some suggestions: 1). It's reasonable to see a rheumy, neurologist, GP, endocrinologist, psychiatrist -- these professions may all have something to add to our treatment options. Rely on whatever specialist will take u most seriously.

2). Take a loved one with u to appts. It's hard to reason with a medical professional when you are blinded by pain. Get some help

3). Try acupuncture, warm baths, heating pads and get your Vit D level up to 50-60 range.

4). Consider trying one of the FDA approved fibro meds -- they are used for any chronic pain -- Cymbalta, Lyrica, Savella.

5). If all else fails, you may have to suck it up and drive to the next county or regional center to keep Dr shopping until u find someone u can work with

Good luck. You are not alone. Meg
 
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An_255674 replied to wantalive's response:
I live in Michigan so I'm sorry I can't help you there today"s visit was almost surreal. He admitted that he needed to send me to a bigger hospital. Ann Arbor"s University of Michigan hospital and teaching/research division. I tried asking about CMS (chronic myofascial syndrome, his response was there's no test for that. aka-I don't know about that stuff. He's going to take me off of ultram, but put me on Percocet 3 times daily. He forgot that @ 90 pills the pharmacy would need a prior authorization. So no mess for the weekend. That's life. I am in counseling. And have been trying to take Cymbalta. I can't tolerate it. Massage has made things worse. The doc tried to tell the nurse to work on the referral, and she responded that the last time she tried that,the insurance tried to say no, that they would prefer I go to a CHEAPER specialist first. No fooling. Straight from the horses mouth,as they say. So of to another adventure. Along with another fight with my son"s school for not following a legal contract called an IEP. Maybe I'll get disability and go visits sister. She works in the Research area of Johns Hopkins. I'd at least have somewhere to stay. I'll pass on info as I get it Soft Hugs Rowan
 
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rowan73 replied to meg_k's response:
I want to try an endocrinologist, but I think I meed a referral. My primary care will drag his feet, ignore me, then tell me no outright. That there's no reason to. Ugh. Thanks will push docs and ask persistently. Soft hug Rowan
Smile you're never alone, and laughter is the best medicine. As Bobby McFerrin said Don't worry, be happy...an anthem for me...remember stress makes it worse ;)
 
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bette_kaffitz responded:
Rowan, Wantalive, and Meg,

I would bet that 90% of us here have been severely disappointed by rheumys. They seem to think that we are wasting the time that should be spent with patients who have "real rheumatic illnesses."

In a way they are right. Back in the dark ages, doctors thought we had musculoskeletal aches and pains. So they sent us to rheumatologists. Now that there have been so many documented changes in our brain and spinal cord chemistry, it makes more sense to see a neurologist. Many of them treat us with respect--AND want to help treat us. (Of course, there are a few who still consider that it's a psychological problem. It only takes one visit to recognize THEM.)

Whatever doctor you see, it is important to understand that fibromyalgia CAN cause many varied and confusing symptoms. You may be sent to any number of specialists just to be sure that it IS the fibro and not something else. You will get used to getting back all kinds of "negative" test results--unless someone is testing your spinal fluid or interpreting a fMRI exam. Normal labs and X-rays just don't find fibro.

However, fibro does find new and interesting parts of your body to visit. It is frustrating for both you and your doctor. As any potentially dangerous reasons for your new symptoms are ruled out, you and your doctor will be back to finding ways to alleviate your symptoms and make you just FEEL better without knowing why you have those symptoms.

As you can see, it doesn't really matter what type of doctor is caring for you as much as it matters that your doctor understands that you are feeling this weird pain or seeing this new anomaly. Your doctor has to believe you and be willing to find ways to make you feel better--and willing to refer you to other specialties as needed.

To better understand the complexities of fibromyalgia, and its connection with myofascial pain syndromes, hunt up Dr. Devin Starlanyl's most recent book, Healing through Trigger Point Therapy. She is great. She's one of US. She writes both as a practicing physician, and as someone who has to deal with this confusing illness. Try your local library first, but I'm betting you will want to own this book for yourself.

Towards better days,

Bette
 
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rowan73 replied to bette_kaffitz's response:
Oh, Bette.....thank you...thank you thank you. . Zen hug....this is why I love this site...why it's so important. I do have that book. And the other one....can't remember name right now ( ha ha-fibro moment!). It's the green covered one. I have read "sections" of each , but not the whole thing. Eyes blur and hands hurt( fibro moment! . ). But will continue to push..too important..HAVE TOO EDUCATE MYSELF and OTHERS. Doctors, family, and unsupported or undiagnosed FMamily members.
I'm sorry for whining/complaining lately. I have had a daily and nightly, pain level of between 7 and 9 for almost 2 weeks. It hurts to wear clothes . My neuro has been unwilling to send me to a pain management specialist. But my primary care did, YEA! REFERRED IN JANUARY, APPOINTMENT on April 30th...a lot of people in pain around here..and there's only one other pain specialist in the area.

you are wonderful!
thank you again, Bette
Rowan/Erica
Smile you're never alone, and laughter is the best medicine. As Bobby McFerrin said Don't worry, be happy...an anthem for me...remember stress makes it worse ;)
 
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katmandulou responded:
Hi Rowan, and welcome:

I was dx'ed seven years this coming Friday, and I know what you're going through. Here are a couple of things that help me:

1. I bring a written list of questions and complaints, and I make a point of taking notes when the doc talks. And be specific - it's not your arm that hurts, but "right here inside my elbow" etc. My doc now knows I'm serious about getting to the bottom of what ails me and I want to know how to get rid of it.

2. Don't make suggestions until he's answered your questions. Tell him your symptom, let him answer, then suggest "could I also have CMS?" The Internet is both the best thing AND the worst thing to happen to medicine! We can look up anything and say we have it, but only the docs know for sure.

3. If your doc doesn't listen, interrupts etc (basically blows you off) you might have to take as long drive to find a better one. If you think you'll have the energy there has to be someone to complain to, medical board, hospital etc. Malpractice is a serious thing, and if he's not paying attention, well, you really deserve better than that. You could try a pain clinic, a new neurologist or another rheumy.

Remember that what works for me might not work for you - and it might make your symptoms worse. Unfortunately, FM is an illness of elimination - they have to check for what it's not before they decide what it is. Maybe the neuro hasn't seen many cases of FM and isn't sure what he's doing. Your local hospital or clinic might be able to help find the right doc. Are you near a med school or teaching hospital? That might work too.

There are some good resources in the right-hand column. Also check out http://www.butyoudontlooksick.com/ . It has good tips for us, and you have to check out The Spoon Theory - it will help you explain to people what it's like to be in your body.


Have your doc check you for Vitamin D deficiency. Sounds simple, but we who live in the northern hemisphere are usually lacking in D.


Have the best day you can possibly have,
Lou


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