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Rheumatologist tells me, "I don't treat fibromyalgia"
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crystalgreeneyes posted:
I waited 3 months for an appt. with this specialist whom I was told was excellent. This was for a second opinion. In comparison the first one I saw is actually better. I had my list of notes and she did not give me a chance to elaborate on anything, just asked a few questions and typed on her laptop. She then went on to tell me that she did not treat fibromyalgia, only inflammatory diseases?? She had the door open after about 10 mins. Unfortunately, I often find (due most to fibro.) that I don't say things I want to say at the time that they are important and it all comes to me afterward. I cried, yelled and screamed all the way home. There was no one with me to see this meltdown thank goodness.
I have this awful fear and anxiety all the time. What kind of a life sentence is this? Living with constant pain, anxiety, insomnia etc.etc. The doctor told me that because I am so sensitive to medications, that I will have to rely on on other methods, exercise, water therapy and so on. I was considering have the cortisone injection but now I am so afraid of the possible side effects, I don't want to risk it. What now?
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rudyandirmouse responded:
Hello and Welcome to the fibro FMily here. I'm sorry we have to meet this way but I'm glad you're here with us as this is a wonderful FMily to belong to.

My name is Linda and I've had the fibro DX for about 34 years. I think you will find answers about fibro and it's many conditions here. Unlike a doctor's office those here suffer from fibro everyday so we all know and understand how your feeling.

When I got the DX all those years ago I was in college and the DX hit me like a ton of bricks. Even worse than the illness itself I think. I even stop attending classes for 6 months. I had anxiety, was fearful and in pain. But the thing about fibro is that it feeds on all of our fear. Likes to keep us in bed and take our life away. Anyway that's the way I felt and then my friends got me up outta bed. Back in classes and I realized even with fibro I HAD A LIFE. As long as I lived my day the way I wanted fibro and it's symptoms didn't hold me back. I got a DX, got sad, got mad and then moved my life along. This way of thinking worked well for me. Maybe it will work well for you as well.

I do hope that you are able to find a good Rhuemy that will treat your fibro symptoms. And I do agree with you that it's hard to fined a good doctor with an Open MInd about firbro, rather than an closed one. This collection of illnesses has been around since the time of Homer. Theres more written about it than on other medical conditons. So if you run into a doctor who does not treat fibro there will be many you meet that will and their the ones you want.

Since those DX'd with fibro have so many medical symptoms I've found, in my case, things work better if I use many doctors who specialize in my many fibro symptoms. I go see an ENT doctor, Rhuemy, chiropractor, Neurologist and a stomach doctor as well as my regular PCP. Doing this has worked well fro me. They all know I suffer from fibro and treat me for for speciific medical symptoms now known to be connected to fibro and it's flare ups.

As for medical scripts and side effects do t natural treatments for fibro symptoms. Vitamins are helpers as is Vitiam D3. If you haven't had your Vit D level checked please do that. It's a simple blood test and when one's Vit D level is low flare ups, mood swings ( depression and having anxiety- panic attacks ) are so common. Although fibro IS NOT A ONE SIZE FITS ALL illness we all do have similar symptoms. Some have more pain, so more depression, so more fatigue, etc. So getting a doctor, or a couple of doctors who treat the symptoms we have most often is a key to getting relief from fibro.

I've run out of characters so will have to stop here. I hope I have been of some help.
Again WELCOME, come back and see us everyday. Post how you are doing.. we really care.
Gentle hugs, Linda R
 
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franr responded:
Hi Crystal
Sorry you feel so down about the visit to the Rhematologist but don't dispair. We all here have beeen through this with a variety of doctors. Maybe if possible please see a pharmacologist-psychartrist who can help you with meds to help you sleep and with pain. I just went throug 8 weeks of insomenia and severe pain and that is the route I took. Also pain management will help with pain . They see fibro patients all the time. I went to a rhematologist and he also pass the buck to another MD. So don't give up hope. As Linda said we see many MD's to treat many problems, Good luck and keep us informed. Fran
 
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katmandulou responded:
Hi crystalgreeneyes, and welcome.

I'm sorry this doc (or her office) led you on, and they probably charged you a crazy co-pay, right? Are there any other rheumys in your area? How about a pain clinic? Unfortunately, we cannot share the names of our docs, webmd rules that we live by.

The "first" opinion, can you deal with him/her? Are you willing to be managed by a team of docs, like Linda? Have I asked enough questions?? LOL

You know that 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 the best day you can possibly have,
Lou
 
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BetteK responded:
Crystal,

By now, you're probably thoroughly confused. That's normal for us with FM.

Have you seen a comprehensive list of symptoms seen with fibromyalgia? And there are always new ones added to the list, too.

Because of FM's many facets, itdoesn't really matter what type of doctor you see. A pain specialist, rheumy, or neurologist is probably most common, but the most important thingS for you to consider are:

CAN I WORK WITH THIS PERSON?

IS THE OFFICE STAFF PLEASANT AND HELPFUL?

IF I NEEDED AN APPOINTMENT TODAY OR TOMORROW, WOULD THAT BE POSSIBLE?

CAN THE DOC AND I LEARN ABOUT FIBROMYALGIA TOGETHER?

SOMETIME IN THE FUTURE, I MAY NEED OPIOIDS MEDICATIONS. WOULD THIS DOCTOR PRESCRIBE THEM AS NEEDED?

Crystal, your regular family practicioner could be your FM doctor too. She could refer you to any specialists as your illness presents in new ways.

The important thing is a relationship of mutual trust between you and your doctor. Over the years, you may have some pretty wierd symptoms. Your doctor has to believe you when you explain what's going on--even if sounds completely impossible. That kind of relationship is something that is built up slowly. After all, YOU are the one feeling pain in your right knee every time you scratch your left ear--or whatever impossible twist you woke up with today.

You are in this for the long haul. Your doctor has to be too.

Towards better days,

BetteK
 
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xperky responded:
Hi crystal,

She seemed to jump to conclusions quickly! You are better off moving on to a different doctor who asks more questions and takes more time.

Sorry you had such a hard time. Sometimes doctor appointments are upsetting. It has happened to me too. I love it when an appointment goes well, and the doctor has compassion and actually offers Help!

Things will look better tomorrow.
With Compassion,
Margaret
 
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lb707 responded:
That sounds somewhat familiar to me. Back in the early 90's my Dr. sent me to a Rheumatologist for official DX. He did spend more time with me, but in the end said if the meds do not work don't bother. Checked my blood work for RA and some other things and told me I had fibro and he does not treat it.

Where I live I have never found a Rheumy who will treat fibro. So it is my Chiropractor, PCP and Physc. As far as meds go less is best for me as I to am sensitive.......small dose of any med causes less side effects. I also need to shake things up and use different ones for a while to keep them working.

Hang in there the frustration of chronic pain and little help will increase the anxiety.

Remember when you see a Dr. you are hiring them not the other way around.

lauarb
 
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katmandulou replied to lb707's response:
lauarb:
What good point you've made - a doc is OUR employee, not the other way around.


Which reminds me of a kinda funny story: when I started my business, I was looking for an accountant. I talked with two and called a third for an appointment. I told the receptionist what I was looking for, and she told me that he'd charge me $150 for a consultation. I asked, "why?", and she said because his time is valuable. I said, "So is mine, and I don't pay people to interview them for a job." I met the guy a few years later, and my suspicion was confirmed - his ego is enormous.
Lou
 
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swatts35 responded:
Just got my diagnosis. I had the shots and was in unbearable pain for about a week. Than within a couple days the pain was back. No one warned me of the side effects. I too am sensitive to most meds so I'm trying B12, Iron, D3 and Omegas. Most days I'm only out of bed a couple hours. It's next to impossible to raise 3 kids and be a wife.
 
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booch007 responded:
Crystal...Ohhh I send you a huge hug...(without touching the sore spots!)
I had the same thing in my past...and was told a riduculous reason for my issues...and paid out of pocket and he even called me FAT..........YIKES, talk about tears and mad in the parking lot!!

You learned a lesson though, ask if the specialist sees patients with FM before the appointment. Otherwise it is a waste of time and money....Geez I hate really hate these stories.

Maybe even come my way and look into neurology and ask for the MD who deals with myofascial issues.....my neurologist has alot of patients with my problems. I love her....(see if Travelle and Simmons is on their desk or on the shelf....* (major myfascial medical reference with our story in it).

I am so sorry and we all know how painfulit is to get no where or be hurt with words when you are already hurting.....

Back to square one . Nancy B
 
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BIGDUDE7767 responded:
I have had fibromalgia since 1999. I know exactly what you are talking about and went through many specialists with no answers. Thank God I had such a great MD who saw through the real bad times with this horrible disease. Find yourself a good MD to take care of you. After years my doctor put me on 100mg of Zoloft. Fibromalgia is your brains inactivity to process nureotransmitters that help the body react to pain. I started feeling much better after the Zoloft kicked in. I have been on it for years now. Instead of getting flairups for months I get them and they last a couple of days. Stress is just about the worse thing when you have fibromalgia. If you spend most of your day saying over and over--This is terrible and it's never gonna go away--then you will never get rid of it. You will get better.


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