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Old 09-06-2007, 04:16 AM   #1
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Anyone think they had RA instead of fibro?

Hello, everyone! I'm new to this board, but have also spent time on the Lyme's Disease board as I try to figure out what up.

I'm curious, has anyone here who's been diagnosed with fibro been convinced initially that they had rheumatoid arthritis?

I sort of feel as if I got "blown off" by the rheum yesterday! I've been convinced for the past two months that I have RA, but he moved my shoulders, legs, and had me make a fist, then said he doubted I had an inflammatory diseases because the necessary swelling wasn't there. He said it's probably fibromyalgia. He said it CAN be in the finger joints and can show up as symmetrical pain like RA.

For the record, I have morning stiffness/stiffness after sitting, knee pain, finger joint pain/feet pain, and back pain, but no fatigue or noticeable swelling. I did have costchondritis earlier this year, but I'm convinced that was from vigorous exercise. I think the rheum grasped onto that, as my other symptoms just don't sound like fibro, do they? I understand that he doesn't want to make a hasty decision, but I was the one who actually asked for x-rays and some more blood tests (my bloodwork from July was all normal)... I do wish he'd wanted to do a little more investigating so that I can at least eliminate RA for sure.

Any advice or opinions from anyone would be greatly appreciated! I'm really interested to hear if anyone else has RA symptoms instead of the muscle pain.

Many thanks!
Christina

 
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Old 09-06-2007, 06:18 AM   #2
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Re: Anyone think they had RA instead of fibro?

hi christina,
a pleasure to meet you. i actually do have both. they mimic each other symptomatically so diagnosis is a process of labs. i had fibro initally (12 years ago) and thought it must be arthritis. each year i tested again for r.a. and lupus. a couple of years ago they popped up in my blood work. gotta tell you they act so much the same it is often hard for me to tell who is active within.
you keep pestering your doc till you are satisfied all has been done that can be done for now.
one thing i do know is keeping those joints moving is very important to reducing pain levels. exercise is vital to living with fibro and/or r.a.
one more comment, if you are dissatisfied with your doc fire him/her and find another one. there are tons to choose from. you find the one that you click with. i fired 17 doctors over the past 12 years. i now have a crew of 7 doctors who assist me in my journey to the healthiest me i can be. remember this is your body and only you can decide who you trust to give you good input concerning your health. in all this journey called our health it is our peace of mind that will get us thru smiling and with grace.
peace,
bluelakelady
ps. you always have the right to tell a doctor to hush up and listen. to tell them you are feeling unheard. to ask for tests if only to gift you with peace of mind. you must be your own advocate now. your body is counting on you, not that doctor.

 
Old 09-06-2007, 07:06 AM   #3
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Re: Anyone think they had RA instead of fibro?

Thanks so much for the encouragement, bluelakelady!

This doc is running the anti-CCP for RA and HLA B27 gene marker for ankylosing spondylitis at my request (as well a complete panel and testing for hepatitis, parvovirus, and Vit D deficiency), so it was good that he was definitely open to testing... but I had to bring it up! That seemed odd to me. I guess I just thought that he was kind of hasty at his diagnosis, and it almost seemed as if he was using fibro as a "catch all" for what didn't fit into RA...

I don't want to seem that I'm not going to be happy until a doctor diagnoses RA; rather, I'd be thrilled if I did not have it. But I do worry about early intervention and getting on the appropriate meds if there is joint damage occurring. He did concede to an x-ray of my knees (the part of me where I've felt pain the entire time), so hopefully those will be more concrete proof in one direction or the other.

Again, thanks so much for your quick response. I've been perusing some of the other threads, and you seem to be such a kind and helpful person! I wish you the best in your pain management.

 
Old 09-06-2007, 07:40 AM   #4
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Re: Anyone think they had RA instead of fibro?

hello, another suguestion..while the test your dr is doing now for RA will help ease your mind you may also have him check you for OA. the symptoms you decribe also are what you experience with this diease.

does your knees swell? or your feet/ankles or your fingers? if not and you are just having the pain you may be in the early stages of it. also joint poping is another symptom of OA. morning all over body stiffness/pain also, bone pain.


while fibo can be labled and has been labled a trash can dx simply because it is not heard about like cancer or heart diease cases..anyway, alot of research has been done on it over the years..around 4/99 Fibromyalgia was finially recognized as a medically determinable impairment by Social Security.

Social Security Ruling SSR99-2p addresses fibromyalgia and chronic fatigue syndrome. This ruling clearly shows Social Security now considers fibromyalgia to be a medically determinable impairment. To see this ruling go to Social Security's web site by clicking on the ruling SSR99-2p.

But, as Blue stated in her post..IT is your body and you know it better than anyone else. I have heard of people having symptoms and them being attributed to fibo and it turned out to be something totally different and unrelated to fibo some with dire conciquinces..oops spelling again. sorry..

so you are on the right track to your better health..research, and insist your doctors do what is needed to help you feel better..dont feel quilty about questioning doctors..blue does it all the time..hehe..I am starting too myself..I am still part wimp..LOL

hope this helps. ~take care~

 
Old 09-06-2007, 08:01 AM   #5
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Re: Anyone think they had RA instead of fibro?

actually it is no big surprise you asked for the tests. doctors who are good respect the words of their patients. i have to remind my doc to do tests. she always thanks me for staying tuned into my own needs. after all it is up to me to remember when it is time to have them done. my body, my life, my responsibility.
i thank you for your kind words. we all do our best to be supportive and informative for each other. it is the human thing to do.
are you active?
peace,
bluelakelady
ps. cantell, you are not a wimp. you are just in second grade and one day you will graduate with honors, smiling, laughing and speaking out. i have faith in you little sister!

 
Old 09-06-2007, 08:32 AM   #6
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Re: Anyone think they had RA instead of fibro?

Quote:
Originally Posted by cantell View Post

while fibo can be labled and has been labled a trash can dx simply because it is not heard about like cancer or heart diease cases..anyway, alot of research has been done on it over the years..around 4/99 Fibromyalgia was finially recognized as a medically determinable impairment by Social Security.
Cantell, thanks for your response, too!

I'm so sorry, by the way, if my response made it seem that I didn't think fibro was a disease; that wasn't my intention. I was just sort of surprised that the rheum didn't feel for RA nodules or check for sensitivity/swelling in my finger or feet joints... not to mention that he wasn't going to do anything like x-rays until I pushed. I would think that someone who was complaining specifically of symmetrical joint pains (esp. in the small bones of the hands and feet where RA shows up) would be thoroughly evaluated for RA first, you know? But he immediately said, "Clinically, you do not present with RA."

You and bluelakelady offer great advice about staying on top of treatment and doctors. And I highly doubt you are a wimp!

I think my biggest irritation yesterday was with myself. I worry that perhaps I'd projected too much of my "I'm going to deal with this and just let it be a minor inconvenience" mantra that I've been telling myself for two months, and that I didn't reveal that certain things hurt as they do because I'm kind of in denial. Maybe that's why I subconsiously pushed for those lab tests!

Anyway, thanks so much for the great responses!

Christina

 
Old 09-07-2007, 06:56 PM   #7
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Thumbs up Re: Anyone think they had RA instead of fibro?

Welcome Drmalcolm, My Rheumy thinks i have both RA and fibro,although my RA factor is okay, Rheumy says there is a 10% that never show the factor and do have RA. Rheumy thinks i am one of the 10%. i have bloodwork every 6 months. I recently was tested for Lyme disease which i do not have. For the feet , ankle and hands,fingers swelling for some reason i am very much swelled at this time.
Good for you Blue firing 17 Docs, good to stand up for youself. You always seem to have such warm advice, Brave woman you are standing up.Thank you for sharing all that you do.
Hey Cantell, i'll have to check that ss fibro ruling, i did not know about that.Thanks.
Drmalcolm it is good you are asking for tests, like Blue says, its our own bodies we are looking out after, or similar to that. I get that darn fibro fog and have to write down things before i post, very forgetful.

BeHappy2

 
Old 09-08-2007, 06:25 AM   #8
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Re: Anyone think they had RA instead of fibro?

Drmalcolm, I have a "loose" fibro diagnosis - partially because my rheumy kind of mumbled that to me when my bloodwork wasn't abnormal enough for him to care, and partially because my regular doc thinks that I may be in the early stages of something else going on. So I understand what it's like to be caught in this wondering if it's something else in addition to fibro or something else completely. I also know what it's like to feel blown off by a rheumy! I realized I was not going to be taken seriously because I didn't have any visible signs either at each of my appointments and didn't walk in with textbook symptoms. I really think that some rheumys just aren't interested in fibro because there is too much unknown and they would actually have to think. Taking the time to think and research and truly want to find an answer takes time, and most doctors don't want to spend extra time on us because our medical system is designed for them to see as many patients as possible in the shortest amount of time, because that's more profitable.

My initial concern was (and sometimes still is) early stage lupus rather than RA, because while I have a lot of fibro symptoms I also have some lupus symptoms and some that overlap. I also have a family history of lupus on both sides and I fit the classic gender, age and race for it. Ironically, I have a slightly elevated rheumatoid factor and consistently elevated sed rates, indicating some inflammation in my body, so early stage RA could be a possibility, as well as early stages of many different autoimmune conditions. But who knows, considering all of these conditions overlap so much, and so much of the bloodwork overlaps as well. I have both joint pain and muscle pain though, as well as some occasional slight visible redness on my knuckles, backs of my hand and top of my feet, so I'm trying to accept that if I do have the start of something else, it's probably in addition to fibro.

I completely understand what you said about not wanting to appear as though you were searching for RA as an answer rather than fibro because you didn't think it was a real disease, and I didn't interpret it that way. Probably maybe you feel the same way I do: you don't want a diagnosis of RA or any autoimmune disorder (who does?!) but you want a treatment to help, and at least these better known disorders can point you in the direction of treatment, more so than how doctors view fibro. What has angered me most about this loose fibro diagnosis is that I felt like the rheumy just said it in some offhand way to pacify me with a diagnosis. And while having a name for something is helpful when you're searching the internet for info, I personally could care less what you call it, I want someone to point me in the direction of a useful treatment for it. And mentioning fibro to me and sending me on my way shows me you're not going to treat it.

I agree with having to be your own advocate, and that's something I need to get better at, especially about demanding specific bloodwork. I started off that way, when my regular doc referred me to the rheumy, but that rheumy was very offended about me asking about specific bloodowork and asking about specific diseases! That's why I love my regular doc - she knows something is wrong with me, but she admits that we just may not know what it is yet. I admire that because she says the medical profession wants to appear like they have all the answers - but they don't, and if they don't know something they can't just admit they don't know. Bluelakelady is so right about it being up to us to fight for our own treatment, because we DO know our bodies better than a doctor that sees us for 15 minutes. And I'm very impressed about firing so many doctors - although frustrating, I bet you must feel very empowered by doing that.

Sorry for the rant, but I want to let you know that I do understand! Take care.

Last edited by Minerva78; 09-08-2007 at 06:27 AM.

 
Old 09-08-2007, 06:52 AM   #9
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Re: Anyone think they had RA instead of fibro?

dear minerva,
i am always empowered with amazing strenght of will when i put the health of my body ahead of everything else. including my ego and those egos around me. firing doctors was an inconvience. the only time i was frustrated was when i was not sticking up for my body.
be well my friends, be strong, be your advocate.
peace,
bluelakelady

 
Old 09-09-2007, 02:31 PM   #10
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Re: Anyone think they had RA instead of fibro?

Hi drmalcom and minerva, You posted the below and yes for sure!! this is how I feel also and alot of other people who are suffering from this invisible diease.
Quote:
I completely understand what you said about not wanting to appear as though you were searching for RA as an answer rather than fibro because you didn't think it was a real disease, and I didn't interpret it that way. Probably maybe you feel the same way I do: you don't want a diagnosis of RA or any autoimmune disorder (who does?!) but you want a treatment to help, and at least these better known disorders can point you in the direction of treatment, more so than how doctors view fibro. What has angered me most about this loose fibro diagnosis is that I felt like the rheumy just said it in some offhand way to pacify me with a diagnosis. And while having a name for something is helpful when you're searching the internet for info, I personally could care less what you call it, I want someone to point me in the direction of a useful treatment for it. And mentioning fibro to me and sending me on my way shows me you're not going to treat it.

I compleatly understand what you ladys are going threw. i have been told for years I am in the beganing stages of ra..LOL my test results showed neg also..the only thing that has changed is I got dianosed with fibro and also now I am "having symptoms of OA..arggggg..bottom line is the doc's just dont know whats wrong or right with me. I do good to duck and dodge when they start talking surgery..if it was left up to them I would be a human scar tissue.

I also cheer you on not only for posting but, the last few sentences..I hear you girl!! I also want to treat the diease not the symptom..I want to be free of this thing that is ruining my health and mental stability. (dont you just hate it when the doc pats you on the shoulder and writes out scripts for pain pills and says see ya in a couple months)?

Fibro although, reconised..it was as a SYMPTOM of????? not reconised as a Diease in itself. hence trash can dx...I could be wrong...but, thats what I gather about it..cause like you I went hunting the internet trying to see what I was up against. but, here I am beaten and battered still hunting and still stoping every once in a while to smell the roses and swat at the bees..LOL

behappy to, yw..I only found this information out this year on fibro and i know that if someone else had not posted it I still would not know about it..the good thing is fibro was acknowledge. and it really helped me by knowing this..its not much but its something...so I thought I would pass this info on to others who has been dx'd with this invisible diease to give so hope that there are people out there trying to help figure this diease out and it is not just in our headsl

blue, see I am learning everyday from you..I still wish I had your easy ways with words.

Last edited by cantell; 09-09-2007 at 02:45 PM. Reason: mistakes, grammer, spelling the usual

 
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