Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group 3rd opinion????

Hello!
I was diagnosed with AS a few years ago from mild xray abnormalities and CAT scan showing inflammation. She mentioned that my knee problem as a teen was probably the first presenting symptom. My bloodwork is all within normal range. I had to switch doctor's for insurance reasons and this new doctor is doubting the previous AS diagnosis and leaning toward fibromyalgia. He is sending me in for the b27 marker test and an MRI. I do not feel that I have fibromyalgia, to me it doesn't make sense unless it was in addition to AS (though unlikely I'm sure). I know the gene test is not definative; I am wondering if the MRI will be? I have pain consistent with AS, stiffness, etc... The thing that sent the doctor in the other direction was that I have a brief feeling of wellness after the usual stiffness/pain in the morning followed by more pain in the late afternoon and loads of pain in the evening. My rheumy said that people with AS are practically addicted to exercise and that it didn't make sense that I would get worse after extended periods of walking (meaning a trip to the mall for an hour having taken narcotics prior to the trip. Is anyone here addicted to exercise?

Should I get a third opinion if this new diagnosis of fibro sticks?

Thank all!

Not 'addicted' to exercise, but have to keep very active indeed to stave off significant pain and stiffness.

Run/walk everyday for about an hour or I sure do feel bad.

It is an important factor for the management oif this incidious condition.

Addicted to exercise...I don't think so, I have never heard that one...pttttt

I do exactly like you do, get out of bed with pain but in time it goes a bit, then pain in the afternoon, followed by more in the evening..and then pulling out the heavy pain meds at night.

I have both AS and Fibro.

I dont know for me it is a no brainer...is it your joints or your muscles? AS is joints, Fibro is muscles BIG difference..I had AS for 15 years before I got the diagnosis of Fibro and I knew right away.

AS is the red, painful, joint swelling, cortison shooting, hard to walk, can't sit do anything you use to do disease.

Fibro is the muscles burn, ache, can't lift your arms to do your hair, read the newspaper, feel like you just ran a 40 mile marathon disease.

Just my opinion I would forget the MRI did nothing for me, I am HLA-B27 negative.

I would do the Sed rate, C-Reactive Protein, and the ANA.

I have no damage on X-rays (signs of fusing)

My opinion, if you feel in your heart you have it, keep trying Drs. until you find one that agrees with you.

I have seen in the past alot of Drs. dont think woman can have AS.

Good luck!

Lisa

hiya,

in my experience he sounds like a right idiot.....

Dave

Is the muscle pain with fibromyalgia a soreness as if you ran a marathon or lifted weights to the extremes.... or is it more like nerve pain, sharp shooting? To me it feels like its concentrated in the joints and the pain radiates outward a bit.

Thanks

Hi Monine,

You may want to try an experiment due to this comment of yours....

Quote:

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I have a brief feeling of wellness after the usual stiffness/pain in the morning followed by more pain in the late afternoon and loads of pain in the evening

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If this is indeed a fact and you do have AS, you may be perfect candidate for diet. Some respond well to No Starch Diet here as treatment. If you are feeling pain in late afternoon and in evening, I am curious if it is following a few hours after you eat starchy meals.

Maybe take 1 week and reduce and/or eliminate starches and see if you feel better in late afternoon and evening.

Are you currently on any medications?

Addicted to exercise comment is a ripe one... you may have found a real winner with this doctor.

Best to you,

Tim

You really need to find another doctor.

With AS the pain decreases during the exercise to a point. As soon as you stop the pain continues or worsens. People with AS are not addicted to exercise. They understand that you must move it or lose it. Meaning that immobility can increase the chances of spinal immobility. In my case I have not been able to exercise for two years because I am in a constant flare. Plus B27 and an MRI cannot alone verify if you have AS. There are a list of symptoms and markers that must be met to diagnose someone with AS. Plus 10% of people can be B27- and still have AS. I listed the symptoms below but AS does not normally affect the whole body at once. It kind of moves around depending on where the inflammation is. You can have swelling in the affected joints. It can affects the tendons but not the muscles. The skin for AS does not hurt by touching it. You have to press in around the joint or tendon to feel the pain. If you have allot of swelling it does not take much pressure to induce pain but you can feel the swelling. As causes sharp shooting pains, locked joints, constant hurting joints, disaability in walking, standing, using your hands and arms, stooped posture, forcing your head down, curved spine, severe fatigue, disturbed sleep due to pain, and etc.

Symptoms

The primary symptoms of fibromyalgia include widespread musculoskeletal pain, severe fatigue, and disturbed sleep. Fibromyalgia means pain in the muscles, ligaments, and tendons – the soft fibrous tissues in the body.

Most patients with fibromyalgia say that they ache all over. Their muscles may feel like they were pulled or overworked. Sometimes fibromyalgia symptoms include muscle twitches and burning sensations. More women than men are afflicted with fibromyalgia, and it shows up in people of all ages. A conservative estimate of its prevalence is 2% of the general population, but it may be as high as 3-5%.

To help your family and friends relate to your fibromyalgia symptoms, have them think back to the last time they had a bad flu. Every muscle in their body shouted out in pain. In addition, they felt devoid of energy as though someone had unplugged their power supply. While the severity of symptoms fluctuates from person to person, fibromyalgia may resemble a post-viral state. This similarity is the reason experts believe that fibromyalgia syndrome (FMS) and chronic fatigue syndrome (CFS) may actually be the same condition. Gulf War syndrome also overlaps with FMS/CFS.

Tim

Yes, I've been reading about that here. I think I'm going to try it.

I'm on a lot of meds. I have tried Enbrel and Humira with not much luck and I was about to try Remicade when I had to switch doctor who is now withholding any AS medication until I have my MRI, which I've heard doesn't always show anything. I really NEED the narcotics I take, let me rephrase that... I really DESERVE the narcotics, along with everyone else out there whose doctors refuse to write them a presription. (I'm bitter, bad experience with a former doctor who accused me of being an addict.)

As far as my diet is concerned, I eat very little. You'd think I'd be a stick, though I am not. I do like starch, and I suppose when I feel sick, meat and veggies don't seem like the answer. So this will be hard, but I'm truly considering it...

Thanks. I really don't think its FMS. It doesn't feel like the flu and I am tired but only due to the fact that I have a hard time sleeping. If I sleep well, I am not tired, which sounds unlike FMS/CFS. I have always felt that I've had joint pains, from the time I was a teen (in my knees, which made sense to my first rheumy as women often present in ways other than the spine). My body tells me that the bones/joints in my hips (knees too) are causing the majority of my pain. I will definately get another opinion.

Hi Monine,

It is like running the marathon and then feeling like your so exhausted and you cant move your muscles....I like Tims response the big long response.

I hope you find some answers.

Hugs,

Lisa