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Mtngirl123

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Dec 10, 2013
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Diagnosis
12/2013
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US
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WA
I was officially diagnosed as have fibro by a Rhuemetologist yesterday, but I'm not new to chronic pain or fatigue. I've been in pain every day, at least to some extent, since a car accident four years ago. My pain almost completely went away (stayed at a 1-3 every day) while pregnant then came back with a vengeance after having my baby a year ago. My "new normal" for the past year has been pain ranging from a 3-9, sever fatigue at times and I'm basically only living a fraction of the life I used to.

I went to my PCP a couple of months ago to see if there was something else going on that hadn't been diagnosed and specifically to figure out why I felt better during pregnancy and why I seem to never heal properly after an injury and instead it just stays with me. For example, I still feel the pain of childbirth every day in my bones.

To make a long story short, my PCP ran a bunch of tests looking for inflammation and checking things like B12 and thyroid levels and they all came out normal. He referred me to a rhuemetologist who took one look at my chart, did a quick physical exam and told me I had fibromyalgia and that it could have been caused by the car accident and that I'm also hyperflexible in my joints which for some odd reason seems to result in chronic pain in some people. She literally told me there are a "couple of good books on the subject" and to google the condition to see how to help manage my pain but that there is no known cause or treatment specifically for the disease and that I'll have it my whole life :-x. She suggested I try things to assist with the pain such as an anti-depressents, gabapentin, accupuncture, meditation, counseling, etc, ALL of which I've tried before. She then said she could give me a couple of brochures but that it probably wouldn't tell me anything I don't already know and transferred care back to my PCP. I feel as though she didn't want to deal with me because they haven't come up with a specific pill that cures the condition. I also asked her if there was a possibility I have MS (because my PCP did mention we might need to rule that out because I'm blacking out and have numb hands) but she just kind of looked at me like I had a pumpkin for a head and said she had no idea and that I would need to be referred to a neuro for that and that it's just really complicated to diagnose.

This was literally the strangest Dr. appointment I've ever had. I'm not satisfied with the diagnosis and her explanation and I wonder if this is typical. We only have 2 rheumetologists in our area (and the other one is in her office) so I have no other options without driving three hours away. Is it typical for a PCP to be the provider or should I be seeking out other alternatives for care?
 

1sweed

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Joined
Feb 4, 2013
Messages
1,956
Reason
DX FIBRO
Diagnosis
01/1995
Country
US
State
Pennsylvania
I guess my first question would be, what kind of insurance do you have? Is it HMO or PPO? Meaning can you go to any doctor you want to or do you need a referral? If you can choose your doctors then I would suggest you try and find a neurologist and make a appointment. MS is not that hard to diagnosis, usually takes a MRI of your brain and sometimes a spinal tap. If you have a MRI usually it shows the white spots of damage, in your brain if you have MS. Another thing to consider is a mild seizure disorder that could cause blackouts. If you need the referral talk with your family doctor about your concerns and see if you can be referred to a neurologist.

As for your recent appointment, some doctors just don't get it and have little to offer. I would have been discouraged too. If you have more questions about your health condition you have the right to request a second opinion.

That said, welcome to the forum. By reading the posts made by other members you might find some coping skills to help you manage the pain and improve your quality of life. Please feel free to read the different topic section posts and post where ever you want to. Be sure to read the back posts as well. I hope things go well and you feel better soon. :)
 

kmpisces

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Jun 20, 2013
Messages
151
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00/0000
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Uni
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PA
I am sorry you had that experience. Some doctors just are not helpful. It is not your job to come up wit a treatment plan, it is that of the doctor. I do think asking your PCP for a referral to a Neurologist would be a realy good idea.
 

logy

New member
Joined
Jul 14, 2013
Messages
9
Diagnosis
07/2013
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US
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Indiana
My PCP made the initial diagnosis of fibro but since my ANA blood test came back positive he sent me to a rheumatologist. Once he ruled out autoimmune diseases via bloodwork, he pretty much dismissed me (rudely in my opinion) back to my PCP. Even though my doctor does try to work with me I don't feel I am getting much relief and am considering seeing a neurologist. I've never had any chronic health issues before but I think I'm beginning to realize that this is going to be something with which I need to take a more active role. This forum is so helpful - I'm learning what others are doing to manage it. I check in a couple times a week and can usually pick up at least one tip each time. My last visit I learned about keeping a journal. I found that if I went to the doctor on one of my good days, it was easy to forget how bad last Tuesday was and how difficult it was to even fix myself something to eat. So I'm planning to talk to my PCP about seeing additional specialists. I think seeing a neurologist sounds like a good next step for you. I wish you the best!
 

HipHopHappy

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Joined
Jan 18, 2014
Messages
2
Reason
DX FIBRO
Diagnosis
07/2007
Country
US
State
California
Hi Mtngirl123,

Welcome to the board. Here is my experience when I was diagnosed in 2007.

A friendly doctor who was covering for my PCP suspected FM and referred me to a rheumatologist. Until then, I had never heard about it before. Between then and my referral appointment I researched FM and realized that it is 100% applicable to my experience.

The rheumatologist who made the definite diagnosis explained FM to me and ordered doxepin for sleep and antidepressants. He was friendly and pleasant to talk to until I tried to discuss other alternatives at which point he accused me of not comprehending what he was telling me. I was in shock and nowhere near considering taking such drugs. I was completely overwhelmed. He angrily ripped apart the prescription. He was emotionally abusive to such a degree that I cried the entire time that I was in the room while he typed up my report in silence without any attempts of reassuring or comforting words. At some point he got up and slammed some FM brochures on the examination table in front of me. I felt humiliated.

I went to another rheumatologist within my HMO network. She was pleasant to talk to again until I asked for alternative options. The reoccurring theme with HMO doctors has always been that they believed FM is caused by depression, trauma, most likely sexual abuse which is not the case for me and many others.

In comparison to my own experience with many doctors I believe what your doctor told you is pretty accurate and I like that she gave you time to do your own research before deciding which route you are inclined to take. The experience when we are told about the diagnosis is extremely weird. While some doctors have better people skills than others, there is no perfect way of telling someone about this condition. I may be wrong but I am guessing patients seeking a second opinion is an extremely typical experience for many rheumatologists. Maybe she sensed that you were not going to seek her services or she didn’t want to pressure you into making a decision right then.

I am getting treatment out of pocket with a specialist outside of my insurance so I don’t know what the procedure would have been had I continued to see an HMO rheumatologist. Maybe they only make the diagnosis and recommend treatment options in their report which the PCP follows through. Call up your insurance and ask them to provide you with all Dr’s notes who have seen you. These paper trails are going to impact how future medical professionals will view you and your condition. You might as well stay informed about what is being reported on you.

Doctors who have your best interest at heart will keep up with latest news on FM and be open minded. They will value and respect patients who do their homework and make informed decisions. I always read what they write about me to make sure my impression of them matches with what they say about me. No one wants to be treated by a doctor who does not give their patients the benefit of the doubt.
 

LivetoErr

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Joined
Jan 15, 2014
Messages
137
Reason
DX FIBRO
Diagnosis
06/2012
Country
Can
State
Alberta
My PCP refuses to treat the rheumatology issues I have.

My current Rheumatologist has retired and since there isn't a whole lot they can do for me (I don't respond to any drug treatment besides Prednisone), she said I should continue to be seen by my PCC and no referral to a new Rheumatologist is necessary. I told my PCP this and now I'm back in the triage system waiting for a new Rheumatoligist.

I had a favorite Rheumy, but she decided to stop working in that field and do research on breast cancer. I am not looking forward to a new doctor, at all, because well, there is not much they can do for me.
 

twiztc

Senior member
Joined
Feb 3, 2013
Messages
244
Diagnosis
08/2000
Country
CA
State
Ontario
I recently been to see rheumatologist who put my through the usual X-ray to check out mybones and such. On the follow up appt. she asked about putting me on the usual Fibro drugs but I've already tried them all and none work so she, like your one, told me there was not anything further that she could do to help me at the moment but to call on her if I have problems later. She was very nice and there really is nothing she can do. Sometimes that's all there is to it. Why waste your time and theirs. I doubt she/he was in any way being dismissive or belittling your problem, just nothing can be done from that particular doctor at this time. It's tough being any doctor having a patient that not a lot can be done for.
 

Hopefully

Member
Joined
Jan 21, 2014
Messages
14
Reason
DX FIBRO
Diagnosis
01/2000
Country
Ca
State
Ontario
Hi mtngirl123,
I can really relate to your rheumatologist experience. I spent years going to my GP (general practitioner is what we call them in Canada) complaining of extreme exhaustion and body pain. He would then do a battery of bloodwork which would inevitably show that I was in perfect health. All test were in the so called normal range. I remember sitting in his office crying and saying "if I'm the picture of health, why do I feel like I'm dying?" He had no answer and referred me to a psychiatrist for depression. I definitely was depressed but that's because I physically was not functioning and stressed from trying to keep up with 'normal' people. I finally brought up the fibro and he referred me to a rheumatologist. All she did was confirm the diagnosis and showed me the door. Great! Now what?
I know there are clinics and doctors who have done great work with fibro patients but when I asked my GP for a referral he had no idea who or where to refer me to. He told me to go home, do my own research and if I found someone he would send the referral. I came up with a couple of places but no one was taking new patients. You would think that in a city the size of Toronto, I could find some help. Nope! Not so!
I personally do not want to get hooked on pharmaceuticals just to mask the pain. The depression meds helped a bit with the pain but but after 12 years I weaned myself off the antidepressants because they did very little to help my depression.
Most doctors are probably really frustrated with fibro because they just don't know what to do. Many are just too lazy to stay on top of the latest findings, and worse still there are many that secretly believe that it's all in our heads. Most likely it's on forums like this one where we can pick up the best information.
Good luck with your neurologist appointment. Let us know how it went.
Hopefully
 

MEgersheim

Active member
Joined
Jan 18, 2014
Messages
53
Reason
DX FIBRO
Diagnosis
01/2014
Country
US
State
Massachusetts
Mtngirl123,

I may also be new to the Forum, but I have been through the ringer as far as doctors and medications are concerned.
I have been tested for MS twice, and my doctors have suspected it more times than that. I have been having symptoms of MS for over 20 years and I am 33 years old. Turns out it was Fibro.

What exactly are you looking for in a doctor as far as someone to help you with your Fibro? If your GP believes you may have MS, you should definitely go see a Neurologist. He will then take a history, do a long exam on you and order an MRI of your brain. Keep in mind MS mirrors the symptoms of Fibro. I believe if you go to the Neurologist he/she may also have some insight into Fibro for you, but if that is not what you are at the appointment for, he/she may not be willing to speak with you about it just then. A Neurologist could offer some information on Fibro that a Rheumatologist may not, however, he/she would most likely also start with medication as an option.

If you are looking for something besides medication, I would ask your GP about yoga (my PCP told me I have to start with aerobics or water therapy) or acupuncture.

Good luck!
 

Katieboosmama

New member
Joined
Jan 26, 2014
Messages
1
Reason
Undiagnosed
Diagnosis
09/2013
Country
US
State
NC
I can so relate. I went through this with my PCP when I went to discover why I felt so bad all the time. I asked specifically about Fibro and he was quite dismissive about it. His opinion was that Fibro was not an actual diagnosis but a term physicians used when they were unable to find any other explanation for the symptoms I was exhibiting. Thousands of dollars and multiple tests later I am now on thyroid medicine, diagnosed with vitamin D deficiency and he sent me to a rheumatologist as he suspected RA. Rheumatologist diagnoses me with fibromyalgia and sends me back to PCP to maintain treatment for a condition he does not believe exists...Time to find a new PCP. Your comment about hyper flexible joints rang a bell with me as I have a friend with Ehler-Dahnlos syndrome. Again an autoimmune condition with symptoms similar to ME MS and Fibro. It is a rare genetic condition is often missed when diagnosing these symptoms. Good Luck!
 

Jeralyn

New member
Joined
Apr 3, 2014
Messages
6
Reason
DX FIBRO
Diagnosis
03/2014
Country
Aus
State
Tasmania
Hi mtngirl. I read your post fully but I only want to comment on your joints because your other questions have been well answered by others. You said you have hyperflexible joints. Is that the same as Hypermobility? If yes have you been checked out for ehlers Danlos? I know there is a hypermobility type and it's a painful condition which is sometimes misdiagnosed as fms or exists comorbidly with fms or cfs.
 
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katydid

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Joined
May 5, 2013
Messages
200
Reason
Other
Diagnosis
00/0000
Country
US
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Somewhere
Hi mtngirl. I read your post fully but I only want to comment on your joints because your other questions have been well answered by others. You said you have hyperflexible joints. Is that the same as Hypermobility? If yes have you been checked out for ehlers Danlos? I know there is a hypermobility type and it's a painful condition which is sometimes misdiagnosed as fms or exists comorbidly with fms or cfs.


I was also going to suggest you research and ask your Dr about elhers-danlos syndrome. There are different types of the syndrome, but from what you decsribe, it's could definitely be a possibility that this elhers-danlos syndrome could be at least part of what's going on with you. I've researched this before because my friend has EDS and I wanted to better understand how she felt, and it has been noted that patients can have both EDS and fibro, some Dr's even believe they're correlated.
I strongly suggest you research this! It might give you a direction to go in and maybe even some answers!
Good luck!
 

Scotch

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Joined
Apr 4, 2014
Messages
37
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OP, is there anyway you can see someone else? Perhaps a doctor that actually knows what they're doing.
 
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