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Living With Fibromyalgia - Online Support Group

So tired of DOCTORS that dont listen

#1

I have been so frustrated today. My PCP told me that he would not and does not know how to help me any more so he refers me to a Rheumatoid Doctor. It took forever to get in with him and when I get there he only spends 5 minuets in the room with me. I talked more to his PA than him. They did not answer any of my question and then told me that they would not refer me to a pain specialist and that the only thing that they are going to work on is making it so that I am able to sleep. They will not increase my muscle spasm pills and they will not give me anything for pain. He said that I need to take a hot shower and stretch in the mornings and that should help with the pain. I told him that I have been trying everything and noting is working. I started crying really hard when the doctor left, and all be PA could say was I’m sorry that is all we can do for you. I then began to tell her all of the things that I’m missing out on because of this and y’all aren’t even going to help me.
When I get the paper work for my visit. it barley describes what FM is and then at the end it says: Contact your health care provider if:
You have new symptom’s.
Your symptoms get worse.
You have side affects to your medication.
You have trouble sleeping.
Your condition is causing depression or anxiety.

Well lets see my symptoms are getting worse they have been for months. I have insomnia so bad that there are times that I don’t sleep for days because of the pain. My condition is causing depression or anxiety that was one of the first things that I told the doctor and the PA. My anxiety is through the roof, I’m taking my anxiety meds 4 to 5 times a day at 50mg each time. My depression is so bad that there are many times that I would just like to end it and never have to deal with it again. I just don’t know what to do any more. I mean, what does a girl have to do to get someone to understand the extent of my pain. Am I going to have to up myself in the hospital before I get any of their attention.

#2

Hey Wendy,
I’m sorry to say this, but for those of us with rare conditions this is not unusual, in fact I’d go as far as to say this is really very common. Often some medicos have a limited view of conditions, when we present outside of those limits they seem rather quick to push us out the door or label it all as psychosomatic, especially when we already have a psych diagnosis. Is it right? NO!! But rather than admit that their knowledge is lacking, they put it all back on us, Do we choose to be in this situation? No, but it easier to blame us than admit their own shortcomings.

As if the condition is not enough, trying to find a dr with some sort of experience in how best to manage can be another battle to add to the list, but there are some dr’s who do have an understanding of just how bad this reality can be. I see that you are in Texas and although some distance from you there are some specialists in Dallas and Oklahoma City who do have experience with Fibro. It maybe possible for your pcp to make a referral to one of them, someone with genuine knowledge rather than a generic Rheumatoid Doctor.
I do hope this does help and please let us know how you get on, there maybe others trying to deal with exactly the same situation.

Merl from the Moderator Support Team

#3

Yes, this is a typical scenario for us. I found that having a PCP who will set their ego aside and partner with you is critical. Specialists are so narrowly focused that their eyes glaze over when your symptoms are too complicated. I advocate for the whack-a-mole strategy by having a PCP that partners with you and agrees to do what you ask. Notice, YOU decide what you want to try given your current symptoms, and only visit specialists for specific issues. It takes some research to figure out what that might be, but you will feel more in control. Begging doctors to help you is self-defeating. And their arrogance is so infuriating, it only makes fibromyalgia worse.

Check your mayoclinic.org as a starting point. They have info on just about everything.

I’ll apologize in advance is I come across too blunt. I don’t have the energy to be any different any more.

#4

Hey LaurieS,
I do not believe you are coming across as too blunt. When we go through the medical systems repeatedly with a genuine issue, that is continually minimised, we learn that many of these ‘all knowing dr’s’ don’t know. I believe your statement “having a PCP who will set their ego aside and partner with you is critical” is very true, but trying to find that PCP can be very difficult.
This is why having a network such as Ben’s Friends is so beneficial, having a rare condition can be so isolating. Just having that “Phew, I’m not the only one…” release is an understanding that only those who have been there can comprehend. You see at as being blunt, I see it as being a realist.

Merl from the Moderator Support Team

#5

I know it get frustrating…trust me been there and still happens. Everyone goes through it in different ways dont give up. Keep searching for the doctor that will understand the symptoms better but when you’re alone and having a hard time pray. Praying will always calm you and get you through it read the bible or whatever holy book you would read. Listen to the ministries…God will save you in eveyway…just takes time.