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VegAthLes

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DX FIBRO
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I've been dealing with chronic pain increasingly over the last two years. (I think longer, but I really started noticing it a couple of years ago.) I had my first appointment with a rheumatologist and he said I have fibromyalgia, and he thinks I also have an autoimmune condition. He ordered a great deal of blood work, including a specialized lab test that tests specifically for fibromyalgia, RA, and lupus.

I know I have pain. And I know my doctor said I have fibromyalgia. But I have this fear that my doctor will get the blood work back and tell me that I don't actually have fibro, and that the pain is psychosomatic or something like that.

I don't know why I have this fear. Maybe because I've been trying to get answers for a couple of years, and now that I finally feel like I'm headed in the right direction, I'm waiting for the rug to be pulled out from under me.

Does anyone else feel this way? Does the feeling go away?
 

aokj

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Hi VegATHLes, All the time. In June 2000, I was diagnosed with Type 2 diabetes. I talked to my doctor (2007) about feeling very tired, to the point of exhaustion. My legs were really hurting. In short, he told me it was one part of the diabetes side-effects. I needed to get my numbers under control, and I would feel better. So I did. Everyone said "You must be thrilled that your numbers are under control. You must be feeling wonderful now?" I wanted to hit them! Four different doctors told me the same thing over and over. I wanted to scream. I understood why they weren't listening, but by this point, I've did enough research to know I had to make them understand that "something" else was wrong. Finally, my dermatologist, (of all people) sent me to see another doctor. Turns out he was a Fibromyalgia Specialist, a doctor, but also a researcher. Quite frankly, I thought he was a quack. Then, he blew me out of the water with Fibromyalgia! He gave me over 55 pages of questions to answer. When he went threw them, he said I was higher on his scale than he even thought. Great! Now how do I get rid of it. With a lot of care, patience and a whole lot of hard work. This was when I realized that now, I'm the one not listening. Then we really started talking and listening to each other. His perspective, his understanding, his knowledge was amazing and most of all, exactly what I needed. I'm not angry anymore. He was helping. I believe its the mental stress that's the worse part. No one was listening or doing anything about guiding me to get my legs back. Its definitely a whole lot more than just stress. Try to find a doctor that's into research, they analyze differently.

Will I ever be cured? Probably not. Could I possibly get better? Yes, I believe so. But I keep trying every minute. But, I have found that I'm getting stronger, and that is making feel happier!

I believe you are feeling this way because you don't feel that you're being listen too. Nor have you found someone that you could talk and really listen too. Who know what they are talking about. Fibromyalgia is well on its way to be a major health factor and doctors are paying more attention to. Its just finding that right doctor for you!

I hope this somehow helps you! But, NEVER give up on yourself!

Don't give up! Keep searching for the right doctor for you
 

VegAthLes

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Joined
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Messages
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DX FIBRO
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Thanks so much for your insight, aokj. I don't think it's that I'm not being listened to. I think a lot of it comes from people (non-medical people) telling me that fibromyalgia is not really real, including my mother who is a registered nurse telling me that fibromyalgia is the "diagnosis" that people use to abuse pain meds.

I feel like my doctor does listen to me and the meds are starting to work. I think for me it's more about my own anxieties, you know?
 

Eyesup

Senior member
Joined
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Messages
376
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DX FIBRO
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12/2015
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US
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Aokj put things nicely. I'm understanding the anxiety your talking about and I assure you most fibromyalgia sufferes have had to deal with non-believers. It takes time but you'll eventually weed out people that don't believe you or your doctor. Family is a little different.

There are many threads on the affect fibro has on our relationships. Anxiety also appears quite a bit in fibro suffers. I don't know if it contributes to fibro or if fibro triggers it, but your not alone.

You are the first person I've ran into on this sight that has actually had the test for fibromyalgia. It's been a topic on this sight recently. Having that infinitive testing should be reassuring and helpful in convincing anyone of your diagnoses. But unfortunately not everyone will.

I very sorry your mother Denys your condition. As an RN if she doesn't believe in fibromyalgia maybe she could research your symptoms along with all your test and get a less invisable diagnosis for you. As far as her belief that we are all just looking for pain medication, I have never taken pain medication for my fibro, not even during a four month spell of not being able to get from the bed to the bathroom so that disproves her theory on that.

Hopefully as your meds. Start working your anxiety will lessen. If not you might want to address it with your doctor.
 

temperance

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I believe you are feeling this way because you don't feel that you're being listen too. Nor have you found someone that you could talk and really listen too.
 

aokj

New member
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Messages
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DX FIBRO
Diagnosis
03/2016
Country
CA
State
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Hi VegAthLes,

My first question is: Do YOU feel you have Fibromyalgia?
If your answer is NO: Then, if in fact something is wrong, keep searching until you know for sure, no matter how long it takes.
If your answer is YES: Then you need to find out all you can in order t help YOURSELF.

No one wants to believe that someone they care about is sick! Regardless if they are Medical or Non-Medical, family or not. But I agree your mom is a different story. Particularly since she is a RN.

You need to keep in mind not everyone 'really' knows about Fibromyalgia. Everyone has their own opinions about Fibro. Like it or not. That's life.

Its also very important to remember: Your mom ... IS YOUR MOM FIRST AND FORMOST! She loves you! You are MOST important to her heart! Then, she is an RN. That's her JOB. There is a very big difference there!!

You wrote: "... I think a lot of it comes from people (non-medical people) telling me that fibromyalgia is not really real, including my mother who is a registered nurse telling me that fibromyalgia is the "diagnosis" that people use to abuse pain meds...."

What YOUR comment means to me: Non-Medical people are telling you that Fibro is not really real, is because they don't 'really' know what Fibro is. They don't have it. Hopefully, they never do. Fibro comes on differently for everyone and in different ways, different speeds, and so on. There is so much research going on right now for Fibro. No one really knows everything. Time, with real good researcher ... will bring the answers

In regards to your mom's comment: "...abuse pain meds...". Well, I have to agree with her. I'm certain there are those who could take it too far, for good and bad reasons. In anything, there are those that do abuse meds. I can't deny that.

Personally, I take a lot of meds, vitamins, supplements and insulin, I WANT off the meds. But unfortunately, I know that may never happen. I need them to live, hopefully a long life.

People are different, that's for sure.

I'm very glad to hear that your doctor DOES listen to you!! That's very important!!!

As to your comment, "...more about my own anxieties...". I do understand your anxieties, that's for sure. Particularly at the beginning. Is this really happening to me? Am I making this up? Well, you are the only one that know for certain. You need to make that decision!

It is my believe that you have made that decision already! Its not my intention to upset you further. But, I also think the anxieties are coming from your RN mom and not your real mom. I'm not certain if you know what I mean. Your RN mom deals with on a regular basis at work. She has patients that need the meds and others that maybe abusing the situation, which makes it hard to know. Now your real mom would be concerned about how you are and make some suggests to find out what's happening. I guess my concern is, not to take her first comment to heart. She needs time to digest the facts.

May I guess that you talk to her. Ask what she thinks about what is happening to you. You might want to write your list of abnormalities and have them ready. Ask her for her help. She, also might be scared for you...

I think your concern is because you believe, your mom doesn't really believe you. Therefore, you may think no else will! Hence, why you think you're an imposter.

I apologize if I've over stepped my bounds!
 
Joined
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Messages
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For 20 years I was in pain and every doctor I went to told me I was depressed. My own mother kept saying every one has pain, just get up and deal with it. They don't get it and won't any time soon. I ruined my life using cocaine and alcohol to deal with the pain, which only complicated things, because then they really didn't want to hear that I had physical pain, that it wasn't my head that was screwed up. I now have been getting treatment, with non narcotic pain meds because I am scared of using anything else, and I finally have some kind of life. I still struggle to pay bills, but I wake up look forward to being able to have most of my day in action of some kind. I just wish I could have gotten someone to hear me earlier. The most important thing I have learned is that if the person in front of me doesn't get it, or doesn't care to, I need to talk to someone else. For most of a year, I was dizzy and puking and had a rheumatologist who did absolutely nothing. When I told the nurse at my primary doctor the same symptoms, she almost screamed and asked why I didn't go to the emergency room. Night and day reaction. Needless to say the primary actually ended up being the one who gave me treatment.
 

diamond

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Messages
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DX FIBRO
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UK
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anywhere
Hi denellblackwell...what treatments did you find helpful?

Hi Vegathles....I didn't know there was a definitive blood test for fibro...I'd heard of the test but didn't realize it was totally conclusive.

Let us know how you go with the results...we all come up against the prejudice and basket case diagnosis from doctors and family....it's very frustrating..but stay strong as stressing about what others think will affect you not them...put your own care first and love yourself because you are brave to be coping with this condition and all the toll it takes on us. x
 

VegAthLes

Member
Joined
Jun 20, 2016
Messages
29
Reason
DX FIBRO
Diagnosis
06/2016
Country
US
State
FL
aokj, THANK YOU THANK YOU! (not shouting, just emphatic!) This was very helpful. I sometimes forget that because my mom is an RN, her responses to me come from a this-is-what-I-see-at-work place instead of a "mom" place. Especially because she works hospice and sees a lot of people in pain and with changing regulations about opioids, etc., etc. I know I have to make decisions based on what is true for me. (Not true in the sense that I'm deluding myself to adhere to a narrative in my head, but true in the sense that I'm not letting others' opinions and partial knowledge impact the decisions I make when I know what I need.) I do think some of my anxieties are coming from my mom's opinions. Though she is very alarmist when it comes to my children, her responses about my own health concerns are typically, "No, you're okay." And I have to remember that, too. I'm educating myself about my diagnosis. I'm an avid reader, so I'm doing a lot of research about fibro itself as well as advice for living with a chronic illness. And I will educate my mom as much as I can, so long as it doesn't make things harder/more stressful for me. Again, thank you for your thoughtful and articulate response!

denellblackwell, I'm so sorry for what you've gone through, but I'm glad you're on a better path now!

willow, I'm sure it's not totally conclusive, but it's something! :) That being said, my rheumatologist's primary goal with the specialized blood work is to determine what other condition I have. He thinks it may be lupus or Sjorgren's Syndrome. He also wanted to check for RA. :)
 

aokj

New member
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Messages
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DX FIBRO
Diagnosis
03/2016
Country
CA
State
ON
Hi VegAthLes,

YOU are doing GREAT!!!

As I said before, Never give up on yourself!! You are the only one that 'knows' what is going on with your body! You know when 'something' is wrong and its up to you to do something about it! And, you are!! You are the only one dealing with the problems and you need guidance and help!

I believe your anxiety is coming from that 'dark unknown' of what is happening to your body?? I don't know of a single person that hasn't dealt with that, including me. But, we all do survive it!!

Remember ... Knowledge is Key to Power & Success!! Your body health is critical to you! Its important you take care of yourself!

Remember ... Confidence comes from within! The more you know, the more confident you will be!!

Good Luck!!
 

aokj

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Messages
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DX FIBRO
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03/2016
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State
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Hi denellblackwell,

Some people judge others by their personal pre-conceived ideas. Although sad, but true. We have to deal with it and move on.

Its possible your doctor judged you on your cocaine & alcohol and not why you are in pain. Your persistence (talking to his nurse) may have opened his mind. Or, his mind was already opened, but just wasn't sure. Maybe he thought all you wanted was stronger meds. Then he was just being cautious. Either way, he is listening to you now, and that's what's important.

I also believe, the use of cocaine (all drugs) and alcohol, makes rich people only richer beyond imagination, while we are still in pain.

I can't think of anything that instills more power and confidence than Knowledge!

Good Luck!!! :)
 

aokj

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Jun 28, 2016
Messages
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DX FIBRO
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03/2016
Country
CA
State
ON
Hi Horizon,

Persistence is critical for you!! Talking to your doctor and he will have no choice but to listen to you! Now you need to figure out if he is the Right doctor for you!

Good Luck! :)
 

VegAthLes

Member
Joined
Jun 20, 2016
Messages
29
Reason
DX FIBRO
Diagnosis
06/2016
Country
US
State
FL
I believe your anxiety is coming from that 'dark unknown' of what is happening to your body?? I don't know of a single person that hasn't dealt with that, including me. But, we all do survive it!!

Thanks! I think that's where the anxiety is coming from, too. Though I have a diagnosis, there's still a lot that's up in the air, especially about how this diagnosis will progress in my body. It can be nerve-wracking. But I'm taking it one step at a time.
 

aokj

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Jun 28, 2016
Messages
6
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DX FIBRO
Diagnosis
03/2016
Country
CA
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ON
Hi VegAthLes,

I believe you are right!

I truly believe the worst of all diseases is the one THAT CAN'T BE SEEN! I find no one believes you're sick. And, you have to explain right from the beginning, over and over, again. I feel like I'm constantly educating people. Some know, some THINK they know and some have no idea what it is. And then there are those that don't want to believe it. I find there are times that I even don't believe it. Then I stand up and I'm instantly reminded that I do have Fibro, and I've been dealing with for over 10 years.

What I truly don't understand is why can't I just get up and walk? I haven't broken my leg. It hasn't fallen off. Its right there and it doesn't want to do its JOB! I want a new ones, right now. I have a life to live.

There I go complaining. Its very nice to talk to someone that KNOWS and FEELS what I'm talking about!!! I really appreciate the support!!!

You are definitely not kidding when you say 'Nerve-wracking"! And, yes, its one step at a time!! No words have been more truly spoken!!
 
Joined
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Messages
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DX FIBRO
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03/2008
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LA
IT IS truly mind-boggling that when u explain the symptoms in great detail, over and over, people still cannot wrap their head around what u are saying! It used to make me feel like my head would explode from the frustration!
 
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