Monday, December 13, 2010 Ms.D asks

Q: fibro or ra? even the dr not sure..what to do?

hi everyone, i hope someone out there can shed some light on my situation or someone has been through the same thing. it started in january of this year. The pain. in june i seen the rheumy who told me it was ra. put me on methotrexate and continued to use the prednisone my dr gave me after a month i seen some but not alot of improvement the pain started shifting to more muscle than joint. called the rheumy they gave an injection and swithed my meds to plaquinel in august again some improvement but my pain became more intense and although there was some joint it was more all over pain. in september he told me to stop all meds and prescribed soma and see him in two weeks. soma did help slept really good. seen him two weeks later and stated he thought it wasn't ra but that i had more symptoms of fibro and was prescribed cymbalta 30 mg and ambien. when i returned 1 month later his Nurse practitioner stated that the dr. was confused about me. that i was a confusing pt. she increased the cymbalta to 60 mg and when i told her about my joint pain she told me just to take a tylenol or alleve and that should help. she said we all have aches and pains as we get older and thats what i could do for that. the muscle pain has since decreased to a level 2 in pain range, but the joint pain is what continues only i have no joint swelling and all labs are normal except for a lab done to check for human parvovirus which was elevated.and to what i have read parvo only last for weeks to months. well this has been almost a year. my joints are very painful. i sometimes can't walk from the pain in my ankles. they feel like they are going to break. i"m stiff in the morning for about 2-3 hrs and if i stay in one place for a short period i stiffen up. my hands are very painful. and can't hold a cup for a long period of time. i can't go shopping for to long or i will have pain after 20 minutes of walking mostly in the knees,ankles, and feet. joints feel hot, tight,painful but no swelling again all labs within normal limits. i still get tired mostly at about midday or after lunch not all day like before. could this be all fibro? anyone out there with similar symptoms? or could this be the human parvovirus? my rheumy doesn't think so but his nurse practitioner does.(thats confusing!). any advice would be appreciated. so for the lenghty note, very fustrated and i thought the more info maybe the better.

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Answers (2)
Lene Andersen, Health Guide
1/ 5/11 7:48pm

One of the defining characteristics of RA is morning stiffness and joint pain, so that's certainly a vote in that column. On the other hand, with fibromyalgia, the pain and stiffness increases after prolonged periods of inactivity, which can also explain the pain and stiffness - you mentioned that if you stay still for too long, you get stiff and have more pain, so that sounds like fibro. I have both RA and fibro and have discovered that one of the ways to keep fibro pain at bay is to fidget a lot. When I'm awake, I make sure I move around every 30 min. or so, because the more still you are, the more your body seizes up. The fact that your Cymbalta prescription seems to have improved things also speaks to you having fibromyalgia, as antidepressants can be very helpful for this condition.

 

You mentioned you don't have any swelling and that is also one of the defining characteristics of RA. However, there are many forms of arthritis, so just because you don't have any swelling doesn't mean you don't have a type of arthritis. You describing your joints are feeling hot and tight also speaks to arthritis and the symptoms in your ankles are definitely worrisome. Of course, it's also possible that you have both the time of arthritis and fibromyalgia, but it's hard for me to say which. What is less hard for me to comment on, though, is your nurse practitioner's statement about how we all get ache as we grow older. You don't mention how old you are, but in my opinion, a medical professional dismissing your symptoms as belonging to the natural progression of age right after they admit yours is a confusing case to me seems to indicate that they're more comfortable shrugging off your symptoms rather than admitting they don't know what's going on and sending you to someone who might.

 

I'd recommend that you go back to your rheumatologist - not the NP - to talk more details about what's going on. Before you do that, do some research and our basics of RA area, as well as the fibromyalgia area of our Chronic Pain site so you know more about the different diseases which will help you formulate better questions. Also check out my post on how to be a good self advocate, because that's what you're going to have to do. Talk to your doctor in more detail about what's going on, about certain of your symptoms improving, but others not, ask questions about other types of arthritis, ask them about whether this could be RA despite not having any swelling, etc. Have you had any x-rays? If not, ask for some to see if there's any erosion in your joints - although it usually takes quite a while for joint damage to occur, this is almost one of those situations where you sort of wish that you had just the teensiest bit of joint damage, because it would indicate that you have something akin to RA. In other words, I'd suggest you push harder.

 

Good luck! Please keep us posted on what happens?

 

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12/13/10 3:30pm

Hi Ms. D.  I do believe I have seen you here before. 

 

I am sorry you are having so much trouble with your Rheumie.  Uncertainty is distressing and aggravates our issues.  I don't remember if you said in the past whether you have gone for a second or even a third opinion.  Sometimes that is a necessary evil. 

 

Misdiagnoses between RA and Fibro is common and distressing.  The big differences are blood markers, and types and intensities of pain.  Most RA patients (though not all) have some sort of positive test for it. There are no sure fire tests for Fibro.  But the differences though slight to the untrained eye are paramount when you are living with both.  We monitor these differences to know which meds are working and not. 

 

Most RA pain is not muscular as is Fibro.  We don't feel the RA activity we only feel it's wrath (damage).  Since Fibro is nerves misfiring, you can feel the activity of it.  And yes as I have said before Fibro will mimic RA with joint pain and stiffness. If you truly do not have RA, no need to worry about deterioration. 

Fibro pain is more generalized throughout the body whereas RA pain can usually be pinpointed.  RA likes to do a much damage to one spot as possible or to a collective area of joints like the hands and feet. 

 

Here is a little chart to help pinpoint the pain of RA.

http://www.fmpartnership.org/tender_points.htm

 

Mainly the big difference is ruling out RA and or other forms of autoimmune diseases.  I hope you can get a straight answer soon.  In the meantime, take the cymbalta, get some exercise and do a bit of breathing exercises to calm the nerves.  Anxiety and distress can trigger fibro pain. 

 

Let us know how things are going or whether or not you have strangled your doc.  Heck that might make ya feel better too.  And slap the NP while you're at it if it makes a bit of the pain go ahead... LOL.

 

Neurontin may also help get the nerve pain under control.

 

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12/13/10 7:06pm

hi ronie,

and yes i have been on here a few times.you have helped me alot through this journey and have greatly appreciated it. if it wasn't for this site and all of you i don't what would be of me. you guys have saved my life a few times you will never know how much. the pain at times was so unbareable at times you all helped through it. and no i have not gotten a second opinion. this dr. is the only one in our county and well to travel now is not financially possible. well i hope its not ra as i don't want the lasting damage that it can cause so i can except the fibro as long as the meds make the pain disappear. thank you again for taking the time to answer my questions. may god bless you and keep you safe.

 

best wishes,

Ms. D

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By Ms.D— Last Modified: 01/05/11, First Published: 12/13/10