Fibro & CFS? Or what's the difference

Some members here have both fibro and CFS, yes? Can you help me think about this a bit?

I go back to my rheumy next week. Last time I saw him he said that if the bloodwork he ordered didn't show anything, I'd get a dx of fibro. Oh, okay.

I went to see him because I develop tendinitis at the drop of a hat, and my tendinitis in both hands has been constant for over a year. That started after I got Lyme, but all the doctors are like "oh, it can't be lyme anymore!!!" and at this point I don't care anymore what they think.

I can see why the rheumy thinks fibro (since he doesn't believe in post-treatment lyme disease syndrome). I hurt. Everything hurts. I get tendinitis all the time. I guess that's pretty common in fibro.

But, everything hurts because I have tendinitis. The tendinitis is mostly in my hands and feet, with a bit less in my elbows and knees and chest. My palmar and plantar fascia hurt. I also have arthalgia. The pain makes my muscles hurt (I think). When my feet really hurt I just sorta shuffle-walk, and I know that puts more strain on my muscles than walking properly.

So I'm not sure if the "myalgia" of fibromyalgia is the root of my problem.

Then I came across CFS the other day. Like, I knew of it, but I just thought "chronic fatigue" meant being tired all the time. I struggle with fatigue, but not ALL the time. But then I learned that CFS better termed "exertion intolerance" or "post exertion malaise" and that's something I recognize. Over the past year I've had "good days" where I get up and try to get a bunch of stuff done, and then have "bad days" to recover. I've told my husband numerous times this past year "I did too much yesterday, I have to rest." Uh, that's CFS in a nutshell I guess. Ooops.

And looking at this /www.womenshealth.gov/a-z-topics/chronic-fatigue-syndrome I can check off a lot of things on that list. Low body temp, dizziness when standing, arthalgia, tingling in hands and feet (which is not a nerve problem, already had the s.e.p. for that), etc.

And CFS is known to be triggered by infections like EBV, which I think I had a few months before Lyme.

Sooo.... now I'm really wondering if fibro is the best dx, or if it should be CFS. Do rheumy's dx CFS, or is it some other specialty? But there's people who have both, so maybe I have both? I mean, I do have the constant tendinitis, which doesn't seem to go with CFS so much.

Honestly, I don't care too much. I'm pretty certain I have PTLDS, but that still isn't an actual diagnosis. So I'm happy with any "I hurt, and it's not all in my head" dx right now. But I'd like the dx to be close to the actual me so I don't get offered useless or harmful therapies.

But where is the line between fibro and CFS? Is it mostly just in the post-exertional malaise?

Hi, Eiren, and welcome! Some doctors think Chronic Fatigue Syndrome and fibro are the same. We sure have many of the same symptoms...just like we have many of the same symptoms with Lyme disease, lupus, and others. I’m really glad to see your rheumatologist is ruling out the other illnesses first. There really isn’t a good test for fibro but there are good tests for the other illnesses. Yep, if our tests say we are the picture of health, we are then diagnosed with fibromyalgia. ☹️

You need to have pain in all four quadrants of the body for several months to get a diagnosis of fibro...along with the proper testing too.

Some of us have more fatigue than others. I will go in spurts. I have more energy for a while and the bottom drops out. I do stay as active as possible and this does help with the fatigue! The more I sit, the more pain and fatigue I am in..

Fibro isn’t considered an inflammatory illness according to the National Institutes of Health and the American College of Rheumatology so you could have something along with fibro bothering you. My back always was so bad and I chalked it up to fibro. But then I was getting worse and worse. Fibro usually isn’t a progressive illness so I went to a rheumatologist for the first time. He did about 25 exrays and took eight vials of blood work along with an extensive family medical history. It turned out I not only had fibro but also ankylosing spondylitis and sacroiliitis. These things were really adding to my regular fibro pain. I was put on ibuprofen with food and a muscle relaxer called Robaxin (methocarbamol) and the muscle relaxer really made a significant difference in my pain!

I also take Tylenol as needed, vitamin D3, and magnesium malate to help with pain. I do pace myself and try not to over do things. If I don’t, I pay a price for that. Yep, that’s also fibro in a nutshell!

Do read Fibro 101...the first thread on the forum. There is a lot of good info about fibro...including many of the various symptoms...and you will learn a lot there. You will see that almost all your symptoms fit with fibro also. So this is why some doctors think these two illnesses may may be the same.

I’m looking forward to getting to know you better. Do let us know what your rheumatologist has to say next week because we do care about you. I hope to hear more from you soon

Sherrine