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Posted 1/18/2012 11:13 PM (GMT 0)
I went to my primary care physician yesterday and told him about what I thought were fibro flares and he told me that he didn't think I have fibro at all. He said that since the pain I was feeling coincided with having my period, that he thought I might benifit from hormone replacement. He said since I wasn't in constant pain that I didn't have fibro.

I am trying to assess myself to figure out if I do indeed have enough pain without fibro flares to warrent a diagnosis. My question is, how much pain do you all have when you are not flaring?  

Your input would be much appreciated.

masschaos

Posted 1/19/2012 1:36 AM (GMT 0)
Did your physician check for the tender points? If he didn't do that exam, then I don't think he knows much about Fibro at all.
I don't have constant pain. I have pain that comes and goes, and it's not bad unless I overdo.
I have a lot of other symptoms that are related to Fibro -- and then some.
Fibro does have a hormonal link, and many women seem to have flares around their menstrual cycles.

For a whole decade before menopause, I held out hope that when I got to menopause everything would go away and I'd be healthy.
My gyn said some women improve after menopause ... but some get worse.
The jury is still out on that one for me.

At any rate, "he didn't think" and "he thought I might benefit" -- those are all conjectures and not based on any testing, right?
Best to see a rheumatologist who is experienced with Fibro.
Posted 1/19/2012 5:03 AM (GMT 0)
I had a pcp who disregarded my feelings that I might have Fibro. She didn't feel my problems were 'real', she told me this the last time we had a conversation. When I first mentioned this to her, she said 'No' that I didn't have it. I finally found a list of the symptoms of FMS, I was astounded, I had all but 2 of the symptoms. She still thought I didn't have it. I asked for a referral to a rheumy, reluctantly, she agreed. He said I had Fibro after he did the tender point test and I had had all of the other tests. I went back to the pcp w/ the dx and she grudgingly accepted the dx. She was no help to me. I continued to have other problems, related to meds she was giving me. She still felt I wasn't 'trying' hard enough.

We finally had a parting of the ways when she wrote down for a paper I wanted prepared for SSD -' she is a malingerer'. I was livid. I asked her why she never told me she felt that way about me. She gave me a stupid answer - 'I can't cure you!' I told her 'I never asked you to cure me, just help me'. I have never spoken to or seen her since then, and that works for me.

My feelings are you would be better off w/ another dr. I would suggest going to a dr who actually believes in FMS. You have enough fun, w/o spending time trying to convince a dr you feel lousy.

I had problems w/ my periods since the very first day. That is also very common w/ women who have FMS. Most drs would blow off my complaints as 'women' trouble. I ended up having a hysterectomy 8 1/2 yrs ago. You know what, I feel worse now than I did then. But at least it can't be blamed on 'women' trouble.  shakehead

You deserve better care than he is willing to provide. Maybe some day he will find out FMS exists, but you need help NOW!

Good luck.

God bless.  Alice.

 

Posted 1/19/2012 5:44 AM (GMT 0)
masschaos,

We are all different, but since you asked, yes I do have daily pain. I am taking medications to try to keep it manageable, but even with that there are significant daily aches. I also have burning nerve sensations that come and go.

If I overdo things in the least, things quickly spiral out of control and there is a massive backlash both in my pain level and in my fatigue. I feel as though I've been beaten with a baseball, run over by a mack truck... you name it.

For your sake, I hope that you don't have fibro and it is hormonal and they can treat it. For those with fibro, it's just a never-ending ongoing battle that we face day in and day out. I wouldn't wish it on anyone.

Best wishes as you work to diagnose whatever is going on with you. I hope you're feeling better soon.
Posted 1/19/2012 7:04 AM (GMT 0)
Thanks Marrit, Alice and Crushfibro,

I asked him when he walked in the room if he "believed" in fibro. He said yes. He did not do the tender points check. I should have insisted he did it.

I am trying to wrap my mind around all of this. I keep thinking, why would hormones make me feel like that if I started my period? Would I really hurt that bad all over like I did? I do have pain every day, but it is not excruciating pain. Doc told me that since I didn't ache like I had the flu and didn't hurt because he sort of squeezed my thigh, that I didn't have fibro.

I think I really would like to go to a rheumatologist just to find out for sure. My problem is finding one I can trust. I googled rheumatologists in my area and I don't know how to be sure that they treat fibro. Is there a way I can fiind out which ones do?

Thanks for your wisdom. I am a novice at this. I really do hope that I do not have fibromyalgia, but can't understand the symptoms that I am having.

masschaos
Posted 1/19/2012 11:45 AM (GMT 0)
Ask when making an appointmet if the doctor treats fibromyalgia patients.  Also, you could call your local hospital and see if there is a fibro support group in your area.  If there is, contact them and see who they use. 

 

I just got a name of an excellent rheumy from my hairdresser!  I have thought about seeing one because of my hips but, like you, wasn't sure who to go to.  I asked her and she said one of her clients has RA so she called her right then and got the name of her doctor.  I came home and checked him out on the Internet and he has rave reviews from patients!  So, if I decide to see a rheumy, I know who to call.

 

about pain...I have constant pain and achiness.  I take meds for the pain every day.  How many doses depends on how my pain is for that day.

 

Sherrine

Posted 1/19/2012 7:54 PM (GMT 0)
Take a look at this link off the fibro 101 thread http://www.niams.nih.gov/Health_Info/Fibromyalgia/default.asp#k

This info really helped me decide if the pain I was having could be fibro when my doctor & I first discussed the possiblity years ago.

I agree with crushfibro - I hope it is not what you are suffering from but do hope you find the answer soon.

good luck with your doctor search:)

Kelly
Posted 1/20/2012 12:20 AM (GMT 0)
Thanks for the information Sherrine and Kelly.

I will research the symptoms further and then decide when and if I will call a rheumatologist.

Thanks again,
masschaos
Posted 1/20/2012 4:28 AM (GMT 0)
I think you should see another doctor too. And like Sherrine said, ask them if they even treat fibromyalgia before making an appointment.

It is so frustrating trying to get a diagnosis. I hope that you do get one soon. So you know what you are dealing with.

I too have pain everyday, but I live with it. I take pain pills, they help, but the pain is still there. I have gotten use to it. Half the time I don't notice it, and then there are times that you can't help but notice it. But I find the less I think about it, the better.

Keep posting and letting us know how you are doing.

Hugs, Karen
Posted 1/20/2012 5:07 PM (GMT 0)
Hi, I read this yesterday but didn't have time for a reply, so I wanted to make sure that I got back to it. Of course we don't know you and are only guessing, and you do need to trust your doctor, but I wanted to relate my experience to you.

My NP was the one that brought up the possibility of fibro to me, even though his supervising doctor didn't believe in it and was ready to dismiss me, or treat me for depression. I knew something wasn't right with me, but there were many times that I doubted myself. I didn't hurt 'that bad', I was able to work and only really felt it after the rush was over. When I was home, I usually felt good for most of the day. This is not counting some bad days where yes, i really ached. But for the most part I was doing well. I'd have episodes of RLS, my hands would ache for a couple hours, I'd feel a bit weak and foggy, my legs ached.... nothing I could pinpoint and say, "I hurt RIGHT HERE!" Sharp, distressing pain only a handful of times. I spoke to my sister who has fibro, and she told me that sometimes she couldn't rest her arms on the desk for the pain it caused. This sounded really bad, I was sure the doctor was wrong.

And here I am 3 years later, and I know for sure that yes I have fibro. Do I have pain every day? YES, right now I do, this fall/ winter has been really bad. Actually I think this whole year has been worse for me. But until this point, I couldn't say that I had pain every day, especially in the summer. Or if I did, it was very negligible; Or last an hour or two, so easily forgotten. I think I am very lucky, and I pray that I will go back to that normal for me once this winter is over.

Just something to think about. Good luck to you in trying to figure all this out, it really isn't easy.
(((hugs)))
Posted 1/20/2012 9:20 PM (GMT 0)
Thanks Karen and mamanan,
I have noticed that I do have a lot of pain when I am sleeping. I wake up at night hurting so bad that I have to change positions. I also do have pain in my neck and back during the day. Today my ribs are hurting.

I am going to try to find a rheumatologist soon. I just don't know if it is going to upset the doctor when I tell him that I don't want to treat the condition with medication at this point. I have just recently gotten off of ssri medications that I had been on for years because of certain side effects. Mostly, I just want a diagnosis.

Thanks again,
masschaos
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