Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Fibro seems very differant then A.S....HELP

Today I met with GP and we discussed the Rheumi's opinion that I know have FM and what it means...Looking to discuss this with other AS'ers who have an FM diagnosis too...I spent so much time with inflammation pain that this is all new to me...She suggested that FM isn't considered a muscle pain problem anymore...more a brain message problem...people with AS are susceptible to FM because we spend so much time in pain...Kind of makes sense?....The difference is this FM pain isn't causing damage and in a sense should be ignored...Her word is to 'distract' oneself..and try to reprogram the brain not to send the message is a problem...As you all know that is kind of the opposite of listening to our bodies to avoid flares...This all makes sense but scares me...If the Rhuemi is wrong and the AS isn't controlled I could do worse damage to my joints...and more activity usually equals more pain and fatigue....Anyone got ideas? Thoughts?...I have read ...When the body says no...which a few people mentioned...And I am re- reading How the Brain Heals itself....There's a chapter in there on pain....Hard not to feel like it,s all in your head...???...HELP Pls.

Hi Laurel,

It is very common to have Fibro as well when you have any pain condition. I don't have it at this point, but that could change. I have neuropathic pain, and that is also comming from the brain. My pain signals are all screwed up from the AS, and my brain started sending pain to my skin receptors. My skin burns like I am on fire, without the meds to help block these pain signals. I know some people with Fibro also get neuropathic pain, and I pray you don't get that. I take amitri[tyline, Effexor and Neurontin to slow the pain signals down from the brain.

Did either of your doc's suggest how to treat the fibro ? I wasn't quite clear, if your doctor doesn't feel you have A/S now, or you have both ?

Hugs,
Janet

Hi Janet...sorry I was trying to think clearly...which doesn't always make it to the page...She definitely thinks I have AS...just not active inflammation...She is basing that on my ESR which is only a 2... I know really low...but at my worst flare it was a 6.

Both docs think more mild to moderate aerobic exercise(30 minutes daily) Cognitve Beh. program.= distraction...The Rheumi said we could try NSAIDS in the fall if the exercise isn't working when I see her again...And the GP said ok to 5 HTP for now...I don't do well with Narcotics...I have vestibular damage from taking Remicade...And sleeping pills haven't worked for long...Feels like they are suggesting mind over matter...buck up cowboy:)

HI Laurel,

I don't think they are suggesting "mind over matter " at all. I have had completely normal sed rates, but always elevated CRP. Do you take any antidepressents ? If you do make sure it is one that is used for pain. Effexor was a life saver for me and the neuropathic pain. Exercise is key for distraction. I use distraction everyday of my life and it works. You can learn to block pain . would they consider trying you on Amitriptyline very low dose. Do your research on Fibro, but make sure you get recnet info, because it sure has changed from ten years ago. What do you take for the A/S ? I see that you did Remicade at one point. I live on Omega 3 fish oil. 6 gms a day and work excellent as an Nsaid and no GI issues from it.


Janet

Janet

I don't have Fibro, but for the first 10 years or more, it kept coming up, a rheumy misdiagnosed me with it, and that made getting my dx all the more difficult.

How do I know I don't have it? A number of other doctors, including one who specialized in it, explained to me how they knew I didn't have it. When I read about it, it really didn't seem to fit me, at all. When I go on a 6 day pred taper, all my pain problems practically vanish.

So, read all you can on it and see if you see yourself (or not) in the descriptions.

Also, see if you can find a pain clinic or a doctor that specializes in it to get the best treatment you can for it.

I constantly see and read info on cymbalta and lyrica for fibro pain, so i know there are other options besides "distract yourself from it."

Deciding if our pain is from inflammation or other through the blood work is not the best way to do that. My PTs in the past and my chiro now, can feel when things are inflamed. and have taught me the signs of inflammation. For me that's "spongy" tissues and loose rather fluid filled joints (not to the point of visible swelling), but its there and if one learns how to recognize it, one can tell, even if the rheumies can't tell the way the PTs and chiros and physiatrists can. My ESR and CRP are never above borderline, at least not when i've been tested. From everything I've read, CRP and ESR should only be used to see if treatments change our levels (if they start out high especially).

Not saying you do or don't have it. Only saying i've misdx'ed with it, and that can be a common thing for people in pain. So read all you can, seek out specialists in it and/or pain clinic / pain doc. and go from there. there are meds that can be used to control the pain if you have it. That doctors thoughts are just one thought, i'd get a second opinion, on the dx and especially how to go about treating it.

Also things like sleep, exercise, eating right, etc helps all, regardless of the root of the problem.

Send me a PM Laurel if you want and I will help you. I have both.

I have had Fibro for probably 35 years. When I got the diagnosis I had never heard the word. The Fibro pain the best I can describe it is more nerve pain. It doesn't affect the joints. Exercise especially water exercise really helps my Fibro.

Hugs.

I just read your next post. I don't think that they mean "mind over matter" and to "buck up". Fibro is real. There is just no definitive lab work for it and it doesn't affect organs. It is real pain and fatigue. I have been treated with meds for sleep/rest and urged to exercise and that truly does help. I have been able to not be very concerned about the Fibro because I was so concerned about the Lupus, RA, AS and other life threatening things. I was very upset with the first diagnosis of Fibro because I felt like he was belittling how I felt. My PCP finally explained it to me to where I was able to understand it. I thought he was saying it was all in my head. That is not the case. They just can't do labs and lay it out in front of you and say you have Fibro.

I have been very very sick in the past with my Sed Rate very low. It doesn't always indicate how much pain you have or how sick you are. Thankfully my dr. says he treats people and not lab results.

Hugs.
Possi

Good doctor:)!...Thanks everybody. I think that I too feel as though the suggestion is that it's in my head...and I just need to get it out. I see how distraction helps, I too use it daily...I think I just want to wake up with this all gone. The pool definitely helps and I am now going 5 days a week instead of 3.
the 5HTP is like antidepressant but natural...seems to be helping with mood but not great for sleep...but I have only uped the dose recently...I will give it a month and if it doesn't work I will Flexeril or amytryline.

Thanks again.

Laurel,

Do you have inflammation markers on your bloodwork? The only reason I ask is because that proves its not all in your head. I know you don't have to have elevated inflammation markers to have AS, I was just wondering if that might help you with your dilemma.
One thing I read that was interesting was if you look at a chart where alot of the lymph nodes are in the body it is where people with fibro feel pain and tenderness. Lymph nodes catch viruses or bad stuff and work on getting rid of it and when your sick your lymph nodes swell sometimes and are tender. I read about a doctor in San Marino, CAlifornia that uses Mucinex becasue it is an expectorant and he had success with his fibro patients.Maybe it gets rid of what is in the lymph nodes and makes for less tenderness and less pain ??
It sounds interesting.
My idea is this: Some of the junk food we eat enters our body and it is so natural and artificial our bidy sees it as foriegn and then goes to attack it and we feel pain. I read this somewhere but some of our food is not what I call food anymore its so far from it. I hope you feel better and get some releif soon, take care.