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JKerner59

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DX FIBRO
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So yesterday morning I had a second appt. with my new pain doctor to assess how I was doing. I told him my goals were to get as healthy as possible so I could go back to work (which is financially necessary). In the alternative, I explained that I may have to file for disability. He asked me what was main complaint and I said the fatigue.

I know many of you face the same issue of never knowing how your body is going to feel from day to day as well as your energy levels. I told him that I felt embarrassed and humiliated because I could not live up to the old version of me anymore and it was difficult to take the comments one gets from friends, family and co-workers regarding changes they see in your behavior.

He then told me he thought I was depressed and needed to get my mind stronger recommending some cognitive constructive behavioral therapy. I am thinking to myself as he is talking....are you kidding me?! I am a huge fan of life and taking every day for what it is worth. I think if he was on a daily basis dealing with brain fog, muscle stiffness, fatigue, exercise intolerance, pain, headache and diarrhea (the fibro Wheel of Fortune), he might feel a little down himself.

I did ask him if he believed in a diagnosis of fibromyalgia and he responded yes. He is a very kind man so I am not bashing him but I did not agree with his take on my mental state.

He recommended also that I go back to my primary care physician to get my dosages adjusted on my non-pain related meds.

His words brought me to tears because once again I felt as though no physician really understands what the fibro community goes through with our symptoms.

Carry On and Keep Calm!
 
I totally hear you! I had a very similar conversation with my rheumy. She told me that she wanted me to do the "package deal" of meds + physical therapy + cognitive behavior therapy. I flat out told her no to the CBT. I said that I'm not at all depressed, that I had the cleanest mental hygiene of anyone I know, that I probably could teach any CBT therapist a thing or two, and finally that this disease is in my body not my head. Her reply was that it was my choice whether to comply with treatment or not. What a pile of male bovine excrement!

I went home in tears, and then I got mad. I understand that a lot of people, whether sick or not, could use with some CBT counseling--there's a lot of people with dysfunctional or less than optimal thinking patterns even if they aren't actually clinically mentally ill. I also understand that chronic illness of any form takes a huge toll on a person's holistic health, and supportive counseling can be very helpful. Counseling should be offered as supportive resource, along with support groups, biofeedback and relaxation techniques, meditation, and spiritual support.

HOWEVER, offering a patient the resource of CBT is different than saying that counseling is part of the "cure" of fibro equal in necessity and effectiveness to meds and physical therapy. I am "choosing not to comply with treatment" by refusing to go to counseling? What about if I refuse to say my prayers? only check in occasionally on this forum? Am I non-compliant then, too? Or what if I were paralyzed with a spinal cord injury, would she call me non-compliant for not going to a psychologist to treat my paralyzed legs?

I hate this double standard where diseases that can't be cured but can be documented on an x-ray, MRI, or test tube are acknowledged to be "real", but diseases like fibro/cfs are considered at least in part "in our heads", making counseling a necessity rather than a supportive resource.

OK. End of rant. For now. Until the prejudice and bias against invisible illness is no more.
 
Thanks Corvid for expressing your feelings.......I appreciate someone else jumping in with an opinion on this subject.
 
I went through the same feelings you are expressing in regards to the CBT. I was not depressed and darned if I was going to let them put me in that termed box of depression. Thus I suffered mental depression for years without knowing it. My lack of ability to work and my constant pain and fatigue, the unbelief of friends and family, and countless other little hurts got stuffed inside me and I was unaware how damaging that can be to the body and mind. CBT is a wonderful refreshing way to jump start you life again. Using this type of therapy does not mean your crazy, in fact it is totally in a different direction. I had this therapy, as well as, EMDR therapy.

EMDR is used in treatment of PTSD, as well as other health issues. It is a wonderful useful tool. Do a web search for information on this therapy.

CBT
Cognitive-behavioral therapy, also called CBT, is a way to help you stay well or cope with a health problem by changing how you think. And how you think affects how you feel.

If you learn how to stop negative thoughts when they happen, you may be more able to care for yourself and handle life's challenges. You will feel better. And you may be more able to avoid or cope with stress, anxiety, and depression.

It actually helps prevent the very things that with fibro we all encounter, so you might want to think about changing your way of thinking on this subject and give it a try. Think of it this way you can always quit going if you don't like it.

One last thought, my therapist used to tell me that most people think there are only two sides to a coin, but there are three sides. The two flat sides and the narrow thin rim. Think outside the box and give the unknown a try. You might be surprised by the results. :)
 
Thanks 1sweed, you made some valid points...I am open minded and will give it some thought.
 
As someone how does suffer with drepression I can say that a lot of ppl with depression don't believe that have it. And. Most ppl get very cross if there told they do. All I can say is with the world we live in and the way our body work im surprised anyone with fibro doesn't have depression.
 
So Sad.
I wonder what it will take? Just thinking fda finding major side effects on Lyrica? After reading that it could be Fatal
For some consumers, is that it? It's so unfair! I'm sorry your disapointed. Hopefully something will change.
 
I guess I should clarify a bit to put my comments in perspective, because I did come off a bit strong. I didn't mean to bash CBT, I only meant to bash the "it's all in your head" invalidation that we so often experience, even from doctors.

Here's my context: For 20 years I was clinically depressed, so profoundly so that I've even been hospitalized for it and was considering undergoing electro-convulsive therapy. We're talking major, major depression. I've also had over 20 years of counseling from some very skilled counselors using a variety of counseling techniques, including CBT, RET, and biofeedback. I finally found the right combo of meds (including treatment for undiagnosed hypothyroid), and this plus the coping skills I learned in counseling led to a complete, stable remission which has lasted for many years and continues to this day.

I was very healthy (mentally), and then I got fibro/cfs. I know intimately and expertly what depression feels like for me, so when I say I'm not depressed, I really do know what I'm talking about. I'm not depressed, I have fibro. And so far I've managed to live with fibro without becoming depressed, for which I am thankful.

Hopefully this will make my intention clearer.
 
Thanks for the further explanation Corvid....I am 60 years old and was treated for anxiety and depression in my early forties...so like you I have been there and recovered "got the tee shirt" so to speak....I agree with you that it is more of the "It's all in your head" impression that you get from the docs that is frustrating.
 
Each doctor has his or he own views on fibro and how yo teasrt it. I have a very good pain mgt doctor that I look up to.
We do have our differences in treatment. I came to her office on ketmine. Her view is you should not have that as it is used in hospitals for surgery. I have tried it her way with her meds. They help very little n not for long. I asked her for the ketmine back. She said I don't believe in that stuff. I TT old her its not about what she believes its about what works for me! She convinced me to take fentynal mm in a spray. It seems to work,but I'm having to increase the dosage :-D. Not all doctors know how to treat people outside the common cold. Just find a new psain mgt doctor. Gt e ng ever sjoulfd I ave sent u back to the gp. He cvouldf have increased your dosage. He just didn't know that to do. Hang in there in find a real pain mgt doctor. If it were in your head your go would have sent you there. Good luck. Stay well.
 
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