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I finaly went to a Dr out of Kaiser and she has helped me with the mood swings i have that get so bad with dealing with the pain, she is a psychiatrist, and helps by talking to me about things to do to deal with the negative attitudes I get when I have to explain my condition, the rolling of the eyes I get when I say I suffer from chronic pain. Its been 11 years and I really feel she is helping me work with my condition and not just try to jam medication at me, Like Kaiser has always done.
I hate that with Kaiser once you are tossed into a file they stop helping you or doing any more research to make sure that is what I truly have.
I would like to suggest that you ask the doctor to check your
Vitamin D level....if you have not already done so....low Vitamin D can cause some of us additional pain and it can also affect other illnesses as well....it is a simple blood test but you MUST ASK the doctor to run it....as it is not included (YET) in the normal bloodwork that the doctors do....
I hope that you will also check out the info here under "tips" and "resources" to the right of this page....be sure to read the *member toolbox* and *nutrition and vitamins*.....
I am sure you will find some good tools and tips that perhaps you have not thought of trying.....which just might help you cope better...
There is something that will help you.....you just have to figure out what it is....we are all different and I think this is one reason why it is so hard for doctors to know how to treat us FMers...
and you should also note that what helps one may or may not help another....it takes a trial and error process of at least 6-8 weeks of whatever you decide to try before you should decide whether or not something is working for you....
One last thing.....next time could you please break up you post....so that for those of us who have eye problems can read the post better....
Take care and good luck....keep us posted on how things are going for you....
MiMi
My personal exchanges are Vitamin D and Pain and Wrath of the Dragon....if you care to visit..
I read somewhere in an article that said even when the thyroid level is normalized, it doesn't help get rid of the fibro symptoms.
Go figure?!
I personally believe that thyroid problems and FMS are two different problems and are often not connected at all.
Take care, Annette
Had two thoughts one was first , there are a few doctors that are going in to the low dose thyroid medicine box to help with peoples complaints. If not science backed, they have explaining to do in the future if negative events occur. So caution is alwyas there for the MD's and law suits and explaining themselves is always heavy on their heart. So some are more conservative then others.
The other thing I thought was that The thyroid is so valuable to so many functions in the body...almost the conductor of the orchestra.....so having it at top function is so beneficial. Too much will harm you and too little will harm you too. There are effects for both avenues. To stop something that was working does GIVE ME THE WILLIES......I hate reading this stuff. You have many symptoms of hypothyroidism. Can you see another physician and share this story?
We are not classed under an endocrine title at this time , as the research has it in our brains....it should be in neurology. A couple of years ao at the big rheumy meeting there was a lecture to pass us off to neurology (now I don't know if it is beacuse we are hard to treat, to get us away...or if it is for real.) BUT I am in neurology for myself. Fixing your body chemistry as best you can is the key here.
The toolbox you create. I am now on Savella which is a SNRI, but more a NSRI as the norepinephrine side of this med is 3 times that of seratonin. Hence it is pushing the body. Adrenal fatigue has also been a thought out there for us as an issue. This med accomplishs this too...adrenals are helped.
I am sorry you have gotten in a hole here with medical management. You must be your own advocate. You sound educated in reading and know you***, go for it. Defend yourself and going with the "I need help doc mantra" "Why take this away and my symptoms are all here again?"
If no satisfaction go to another physician to find asistance. It took me 9 doctors to find my *physician champion. I now see her partner, no questions unanswered or problem not attempted to fix. She is neurology with a specialty in myofascial issues (strokes, MS, CIDP etc.adding the FM crowd there too). I have referred many to her for help. The validation of our problem was the biggest gift and then a plan...the second best, and it takes time to get that right.
I just want to hug you, ask you to be strong as an advocate for yourself and be gentle with the doctor..it is his license and thinking you are working with. Be gentle yet firm and clinical. Hit him with the clinical, with what your symptoms are and how they subsided...write it down ALL down and bring it in.
The written word for me is so much stronger. If he is not in defense mode and just sees* the syptoms all presented he might see it. No labwork is perfect but it is the standard we use to see* inside people. Try this mode with him.
Best of luck...I hope you don't lose too much hair before you get this back in place...(bring him your hair!! show him!!!) I love a good visual.
O/T: A good visual....a patient came to me in a wheelchair, in his underwear the other day....slippers, a shirt..unshaved and a mess. Two minutes of exam, I was sending him to the hospital...but I went and got his attending to see him....The VISUAL was all I needed. Pale, trouble breathing the exam not good...BUT THE UNDERWEAR*. THE VISUAL had me. Some one is very sick to arrive in the office in their underwear (boxers). He wouldn't go...but exentually despite our office measures he was admitted. So I said later...he had me at underwear. The attending laughed and agreed, you didn't need a stethoscope or the echocardiogram,chest xray, the labs....all that we did. HE showed us how sick* he was with the underwear. (You just don't care when you are that ill).
So good luck, I hope you get the care you hope for and it is the right fit of physician. Be gentle but clinical. Hugs, Nancy B
The neuroendrocrine system is what constitutes our glands and hormones etc, so the thyroid, hypothalamus, pituitary, adrenals, etc are involved in FM. A number of researchers have published on FM-related abnormalities such as growth hormone, HPA-axis, estrogen/androgen, and even vitamin D (more a hormone than a vitamin) as you've mentioned.
Fortunately the research continues and more and more doctors and others are becoming more educated. Individual doctors certainly vary in their understanding and acceptance of the presumed pathology in FM,and there is a wide range of thought on what constitutes an "abnormal" endocrine problem related to FM. I tend to treat "low normal" lab values because I find that many need hormone levels more in the mid to higher range rather than the low normal range.
So I think there is recognition among the knowledgable ones (you included!) that FM is related to the endocrine system. It's not simple, as everything is so complicated with fibro, but there is a relationship. We will continue to learn more...
Dr. P
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