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Undaunted

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Hey everyone,

After five long years of trying to get doctors to take me seriously, lots of blood tests to rule out other possibilities, and visits to a good rheumatologist (finally!), I've officially been diagnosed with fibromyalgia. I do have what seems to be the "normal" fibro pain--widespread deep aching/getting stabbed by needles in a million places.

However, I do also have major joint pain--very sharp, localized pain in my all of my hand joints, knees, feet, hips, and elbows. They are so stiff sometimes and if I keep still for even five minutes or so, especially my hands and knees, they lock up and I get shooting pain. Same thing if I work my hands to much or try to squat/lift things "using the knees, not the back" like you are supposed to. Sometimes my joints just give out on me. And most nights, even beyind the tossing and turning because of the widespread pain, I will wake up to shooting pain in some joint or other and I will not be able to move it for several minutes.

That being said, my RA factor and CCP blood tests both came back negative, as did the general inflammation blood tests my rheumatologist ordered. In the physical exam he did, he saw no inflammation at all. So, in light of all that, he certainly ruled out RA, and I am only 19 so osteoarthritis is unlikely as well.

My question is... do others with fibro experience this type of pain as well? It feels so much like arthritis, which runs in my family in both forms on both sides. Are the joints just more sensitive? Is this completely within the realm of normal for fibro? What is going on?

Thank you for any clarity you can give me!

~Undaunted
 

remnant

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This is quite normal occurrence in fibromyalgia. In fact, the joint pains you are experiencing are typical in FM patients. Fibromyalgia expresses itself in myriads of ways in different patients because of the fact that its a syndrome. You should keep a two week pain journal and record every activity that you participate in in order to identify the triggers for your FM. Then you will be able to adjust your life accordingly by avoiding those diets and activities that prove to be triggers. You have a whole life ahead of you and you should not allow depression to take over. The best approach to win over the condition is to use the opportunity as a learning experience. Its not a terminal condition and with time and experience, you will learn to live with it and even overcome it. Best regards.
 

DK_engineer

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Jun 20, 2015
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05/2015
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Hello Undaunted, welcome

Fibromyalgia hit me kind of suddenly, one day I thought maybe I was getting tendonitis in my wrists, the next the pain spread through all my joints from elbows to wrists. A few days later it spread to my toes, then ankles and knees. The pain was always symmetrical. I also am at higher risk to develop rheumatoid arthritis or lupus so everyone - me, my PCP, my rheumatologist - all thought that's what the blood tests would show. But everything came back negative, so it was fibromyalgia.

As far as I can tell it is a little unusual for fibromyalgia to manifest mainly in the hands like this, but I have met other people on this forum who also suffer this way.

My hands and feet have not stopped hurting, sometimes less, sometimes more. Usually my joints are too sensitive to do anything the least bit strenuous. I've had to come up with a lot of new way of doing things to baby my hands at work.

The best thing I have found for this kind of pain is swimming in a heated indoor pool. Something about the slight pressure of the water and the sensation of moving through it really calms down the pain.

I hope this helps.
 

Trellum

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I have been wondering the same thing for a really long time, but no answers... til now :( I also have no inflammation in my joints, and yes, a good rheumy ruled out arthritis... been having this kind of pain since my early teens! I've always wondered if the docs got it wrong and it was arthritis... The joints that seem the most affected are my knees and my fingers :( No inflammation though.
 

terbaer

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Arthritis is usually diagnosed by x-ray from my experience. I have it in my spine, neck, hands, shoulders, ankles, feet, toes, and now I believe elbows. I use (s) to indicate both sides, but both sides do not in all areas have the same pain level. I take a daily anti-inflammatory med called, Piroxicam. I have also used Meloxicam. Periodically (every couple years or so), I go off the medication to see if it really is helping and I am hit with an excruciating 8-9 pain level. Even on the medication, I still hurt, but it is much less, with exception of when I'm having fibro flare ups, where it hurts much more regardless. After having been diagnosed with collagenous colitis in 2012, I really wanted to go off the anti-inflammatory because it has kept me from keeping my colitis flare ups under control. It's a vicious cycle, unfortunately. I am forced to take a small dose of the colitis medication daily in order to keep my arthritis pain tolerable.

I will say, it is especially bad in the mornings with the cracks in my feet, the need to stretch them to get the feeling of walking on razor blades worked out. The hands are so stiff and sore as is my back and hips. Things do usually loosen up after moving in the morning.

I too have had all the inflammatory panels testing for RA and the like, with negative readings. If they haven't taken x-rays, I would ask if it would be worthwhile. A daily dose may make a huge difference for you.
 

sureimsore

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Messages
190
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03/2016
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XO
Hi undaunted, sorry you have to experience this at such a young age, but with a username such as yours you will not let this stop you : )

Like you and others here, neg on the RA/CCP, no inflammation on the xrays.

At first I thought it was my joints, but realized later that it was just the muscles (although who knows, maybe the ligaments/tendons too).
Maybe your tender points are near the joints like mine (and probably many others) and it may seem like the joints? But when I press into the muscles, yikes! Yes, if I don't move my arms for even just minutes sometimes, the muscles get so stiff that I can barely raise my hand without pain.
I find any flexing of the joint (knees when sitting, arms when extended after being bent) causes pain, guess the stretching of the muscle.
So what you are experiencing sounds like the norm.
 
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