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

Hi laurel,

sorry you are in pain, I know how you feel. The fibro pain can really hurt. I was diagnosed a few years back and have suffered everyday with it. Along with oxycodone,I take Cymbalta max dose which helps a little. I also to an arthritis exercise program at the local pool. The water is about 90 degrees and the gentle movements really can help. I have talked to my doctor about the fatigue and he is looking into it.

Keep working with your rhuemy and GP till you can function as best you can.

My thought to fibro is that all sensations are perceived as pain through the brain. Cold feels like pain, exercise feels like pain, even a wind can be painful.

Other thoughts that are more untraditional would be acupuncture and biofeedback . I wish I had an answer that works. It took time with trail and error to figure things out. Also look on the Internet for a fibro diet and see if that is something that might help. Hope you find relief soon.

Hello, Laurel64:


I regret very much the tendency of certain physicians to mistake AS for fibromyalgia: In fact, this trivializes AS, and can delay proper treatments.

Any doctor unable to properly diagnose AS should then never be allowed to 'try' and treat it! Same with fibromyalgia--if all they have are ridiculous "visualization" techniques, it is way long past to drop that quack and send them a bill for wasting Your time!

The single most common misdiagnosis for women with AS is fibromyalgia, and it is very sad that people continue to believe that AS cannot look so much like fibromyalgia that their physicians can be CONFUSED. AS is a collection of MYRIAD symptoms, and it can masquerade as many different diseases, but fibromyalgia seems to be the focus, so it deserves our extreme wrath.

People who really have fibromyalgia really do HAVE FIBROMYALGIA. I have met several personally, and discussed their symptoms at great length--it is a real condition, but it is NOT AS! One woman, previously bed-bound for over a year, responded to treatments rapidly and in under a week was back at her job absolutely 'normal' except for slight fatigue and has remained 'fibro-free' for over two years. THAT does not sound like AS! If it were, we could close our doors today!

PAIN is not "IAIYH;" it has a purpose: "The CURSE, causeless shall not come." The pain of AS is a real WARNING that something is being DAMAGED--and it is so intense that it should not be ignored by just dulling or deadening it. You purchase a new car and the red warning light comes on and it is irrational to put electrical tape over it and continue driving! So many of us with AS just want to be out of pain, and actually believe that relief from this is "TREATMENT;" it is obviously not!

And the pain of AS should not be ignored because some quack calls it FIBROMYALGIA!

HEALTH,
John

Thanks Jeff really appreciate your encouragement and suggestions:)...Terrible to hear that you are still in that much pain.

Thanks John, I hear your frustration regarding misdiagnosis. But in my case the Rheumi wasn't suggesting I don't have AS...she just thinks there is a overlapping condition....and it appears to be FM. My frustration is more with myself for not being more assertive to have new X rays or an MRI to be sure the AS isn't all active....And with my GP who seems to be saying that I can somehow talk myself out of the daily pain I have...I really appreciate Jeff's point about the sensory messages all equaling pain for the FM part.

Thanks for your passion and support:)

I know they mean well, but until one has daily pain, I'm not sure one really understands that we can't just simply talk ourselves out of it, try as we might.

Laurel64,
If it helps you, you are in real pain. And, that sucks, but its okay and the right provider will help you. ESRs are non specific and frequently can be false negative. Much like rheumatoid factor. It can be both false negative and false positive. Likewise, an HLA-B27 alone can be non-conclusive and non- specific. Seek the help of providers that listen to your symptoms and treat them, not your bloodwork. These people will help you, they are not only patient care providers but patient advocates. You deserve that kind of care!

Bless you,
JennyMay
I have a lot to learn!

Thanks Sue and Jenny!...I called my Rheumi's office today she doesn't have any appointments till July...that was a little shocking!...I had no idea she was that busy...The receptionist was able to get me a telephone consult for next Wed....Wish me luck trying to be heard and get a new MRI. Thank you both for your kind words.

Felt like a great HUG!

Laurel64,

I hope the phone consult offers relief! You deserve it! I tend to repeat the main points 3 times to get my point clearly across. Usually reiteration with re- emphasis each time helps the important concerns from you come across. I usually say it 3 different ways:
For example: "I have chronic, recurrent sacroilitus and chostrochrondritis with less frequent anterior uveitis and plantar fasciitis. I feel like these are hard symptoms to develop effect and control over at a psych level. Wouldn't you agree these kind of pain developments have more than a psych component? I just have a hard time believing my mental focus alone can alter my sacroilitus, costrochondritis, plantar fasciitis and uveitis. Can you please offer me more faucets to addressing my complaints that compliment a two step therapy of psychological and physiological treatments because I believe my psych is only a portion of the picture of my myriad of symptoms."

Then I would agree to prescription drugs and physical therapy. This invokes a social mechanical composite for the psych component providers like to push with the disease. Then you also get physical fitness that is tailored to your specific needs. And, ideally it ends with RX treatment to help maintain in times of crisis. Everyone ends up happy in the end, I hope! I believe you'll like physical therapy constructed for AS, some places offer ice/heat/massage therapy and can cater to you health.

Hoping for a great phone consult for you!

JennyMay

Uh, last post- Ambien post... I worried about you in my sleep!

Fibro is associated with sensory small fiber neuropathy and QSART abnormalities in a large portion of patients.