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FMaliy and Dr. P- Please Help!
meesh69 posted:
So I had another appointment with the rheumy and found out my Vitamin D was a 20. He had already prescribed Vitamin D, but I did not know what the level was. Anyway, I have tried to post this question before but did not get any responses. Even though the Rheumatologist acknowledges that both my fibromyalgia and low Vitamin D cause a lot of pain ( I can get my kids to and from school and cook dinner and that is about it), he just keeps saying okay we will "see you in a couple of months", and thinks that the Cymbalta will do it for me. My PCP is a family practice NP. He was treating me for what they thought was endometriosis, but now I wonder if it is FM related or IBS related. Anyway, now that he knows it is FM he says he cannot treat me for long term pain??? He had given me Oxycontin before for my severe cramps, but he says the laws have made it to where family practice doctors cannot treat long term pain? Has anyone else had experiences like this? Both doctors acknowledge my pain and know I have a very limited quality of life right now, but neither has even made suggestions on how, or where to go for help. Not even any recommendations as to what I can do at home to help relieve pain. I scheduled an appointment for next week with an Internal Medicine doctor and hope he will be willing/able to help me. Any suggestions or information would be greatly appreciated.
jroseland responded:
I think most of us have been in similar situations. I believe I finally got the treatment I needed because of 2 things:

1) I found a doctor who trusted me and could see that my quality of life was sub-par and was willing to treat me

2) I, to use a cliche, became my own advocate. Just because someone is a doctor does not mean they are educated on every condition. I think we often know more about FM than our doctors (but not all the time, of course). I knew what treatment I wanted and what treatment I would not do.

It can take awhile to find the right doctor. I hope the one you're going to will be able to help. Make sure to emphasize your quality of life issues. Nobody should have to suffer when there is treatment that can help.
Dollbug responded:
Hello meesh......MiMi in NC....well your Vitamin D level is a long way from where it should should be 70 and above.....and low Vitamin D can cause some of us FMers to have additional I think that you need to get your Vitamin D level up, if you can.....I hope that the doctor put you on a prescription of the high dose of D... the doctors can not treat you....then I would be looking for me someone else who is capable of doing so....I am sorry but if they told you this.....find you another doctor....we are the patients....and the last time I checked...the patients pay the takes trial and error process to figure out just what each individual needs to cope better with the wrath of the dragon....and it might take a combination of things....I have read though that there has been medical research on pain pills and it thought by some that the pain pills do not help FM....

I would suggest that you read the info under "Tips" and "Resources" to the right of this you can find other things that might help you cope better.....I am sure that there is something out there that will help you.....but it might take time and effort to figure it out...

Take care and good luck.....

IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA.... My personal exchanges are Vitamin D and Pain and Wrath of the Dragon....if you care to visit..
An_199336 replied to Dollbug's response:
I think they need to give you a referral to "pain management".
annette030 responded:
I would personally change doctors. I would first ask if they could refer me to someone who COULD manage my pain as they cannot. However, just ignoring me and going on as if I were not in pain is not acceptable to me.

I have not had this problem myself, I have always had doctors who were willing to manage my care or refer me to someone who could. Pain was always something they managed themselves.

A pain management doctor might help, but make sure before you make the appt. that he uses oral meds, PT, OT, cognitive behavioural therapy, etc. in addition to injections and procedures.

Take care, Annette
angelldakota responded:
Hi Meesh... I too have had trouble with Dr's and pain management... I just wanted to agree with the others you need to further search or ask for a pain management Dr...

Endometriosis alone can be debilitating with pain... To leave that untreated is a crime alone...

Not many Dr's know as much as they think they know about FM... I have tried several and tried to take them in some info that they said isn't proven just cus it is on the internet...

I was even just told not to look medicines up on the internet for it isn't valid info... that isn't the word she used but it is about the same... I didn't argue... but should have for I look most of them up on the websites owned by the creators of the drug... you would think they would know the side effects...

You need to do your research and find Dr's who can and will treat you... Like jroseland said be your own advocate...

You deserve to be better treated... and it may take some time and trial but you can find the ways and people to help you...

I am glad you are here and at least here you have some great support and compassion... and people who know how you feel...

keep coming back and keep us informed of what is going on... my prayers are with you...

bless you... take care... luv... jan/angelldakota
MaMaTwig responded:
Good Morning Meesh,
I am so sorry you are having to deal with this issue on top of all of your pain with FM......I would most definetely ask who you can be referred to, and I would not leave the office until they take care of that for have the right to see someone that can indeed help manage your pain. Make yourself heard, also ask around to see if anyone you know is seeing a pain mgmt specialist.

I finally have found a great Dr. hi is in Internal Medicine, and the first thing he said to me when I wnt there is what have they been doing to treat your pain, my response NOTHING.....I still have a work a full-time job so I myself need my pain meds to manage throughout the day. I take oxycodone 15mg every 4 hours and oxycontin 40mg twice a day (early morning and before bed).....I also have other back issues with several of my discs in neck and back..

Cymbalta did nothing for me, Lyrica made me swell like a big balloon had to quit taking right away. I get terrible anxiety attacks so I have xanax for when that happens, I also have hypothyroidism, so I take med for that, but I also take my vitamins, Vit E, Vit D, Vit C, Super B complex, Magnesium, or else I would have little to no energy......

I also take baths with Vitamin Therapy salts, (Walmart) There is one for Stress, one for pain, so many different kinds (not expensive) this idea I got from the Tips and Toolbox to the right. I also started Tai-Chi, I love it and it helps with relaxation and meditation techniques......

fibroinsd responded:
Well...I am going to take a different point of view...although the doctor didn't explain things well...I think he has a point..

First, go to the Internal Med. Doc. He should be able to give you high levels of Vit. D....I have heard of some people taking 50,000 units...and see what that does...Then hopefully, after you get your D levels up a bit...then you can go onto 1,000 - 2,000 units per day...

See if that helps first....before you go down the street of pain meds...There aren't side effects to bringing up the D...where as there are side effects of pain meds..

And Cymbalta took a little while before I noticed it working...but it did a great job...are you up to 60 mg. yet??? It might take a while at 60...I do know of people that went higher than that...for me...60 mg. did it...but it took a couple of weeks at 60, to even start to feel give it some time to work.

Let's put the fun back in dysfunctional !- Mary Englebright

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