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Do you have severe pain without fusion?
#282918 04/21/19 01:41 PM
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Hi everyone,
My pain level has been very severe since age 18 when it started. I’m now 35. I have not been able to work. I sound more severe than others in that I don’t have flares. It’s bad bad or crisis. No good days. I am HLA B27-. I’ve been on biologics from day one. Every description of AS matches me, but I feel like I’m missing something. I have spinal changes (cervical disc issues, facet arthritis, foraminal stenosis, radicopathy, and a few other things) and sacroilitis (previously almost fully fused on right side and partially on left). The fusion reversed somehow, which I just attribute to biologics. However, I don’t think my pain and stiffness correlate to what I show on xrays.

I’m seeing a new brilliant rheumatologist who thinks it is AS and Crohn’s and Colitis. But it has felt like just another wild goose chase of tests that won’t lead to improvement anyway. I’ve done this for years and feel finished chasing my tail.

Are there other AS patients without spinal fusion (despite 17 year disease) with severe pain, stiffness, and fatigue that seem worse than everyone else? A relative described an employee with AS and she is much better than I am. She can work a physically demanding job and I’m having so much trouble being a stay at home mom to one child. I haven’t found another disease that matches me better than AS. Do you think I’m missing the true diagnosis or does pain level just vary from person to person? One doctor told me it has to be AS because there is no other disease that causes sacroilitis. Maybe my brain is wired wrong after so many years of pain. Biologics may have prevented fusion, but they don’t dazzle in the pain and fatigue department. It does help morning stiffness and smaller joint pain though.

I’ve read many descriptions and Dr.Khan’s book described me exactly. Even the same order of symptoms appearing. I’m a woman and the disease can be different in women, but his book was spot on.

I have lost all hope and it’s daunting thinking about living more years like this and dealing with other health issues as you age. I would appreciate any feedback! Thank you!

Re: Do you have severe pain without fusion?
TexasGirl #282919 04/21/19 05:17 PM
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From one Texas girl to another. There is so much variation in this disease that we are like a rainbow of possible manifestations. So yes you can have severe pain without fusing but you actually do have fusing. It has been discussed in past years on here that there is more than just the HLAB27 gene that can trigger AS. This "constellation" of genes affect how we manifest the condition. Also in women and probably men hormone levels play a role. I had severe fatigue for about two years before the chronic sacroiliitis kicked in. I do believe I remember someone saying that their fatigue was their worst symptom.
What is interesting to me is that you said that your fusing had reversed spontaneously. That is interesting. Did your doctors tell you that? Were your images done by different clinics?
The forum tends to be quiet on holidays and weekends so folks may wander back and comment over the next few days.
Happy Easter, Danielle

Last edited by theyoungestmuse; 04/21/19 07:55 PM.

25 years a pharmacist HLAB27+(thanks dad!)iritis at 17, plantar fasciitis at 22, sacroiliitis at 25,first image at 31,diagnosis of AS at 48(hello medical community!!) it's all been downhill since Taltz, Celebrex,Trazodone,Tramadol,benztropine(antispasmodic), high Omega3,A&D to tame immune system,quercetin,bromelain) previous meds were Enbrel Humira Simponi, biggest issues are subacromial bursitis and weight gain on biologics. As of Nov 2021 seropositive RA
Re: Do you have severe pain without fusion?
TexasGirl #282921 04/21/19 07:14 PM
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Your story sounds quite familiar to me. I've got terrible pain in my peripheral joints, no spinal involvement yet and it doesn't seem like my pain is as bad as yours. Pain started around 16 y.o., diagnosed at 31 (32 now).

There are days when I can't even move my fingers when I wake up, and just holding my toothbrush is alarmingly painful. But there is no sign of fusion or degeneration in any of my joints! It might be why some of us take so long to get diagnosed -- it's an extremely variable disease. I hope you find something that works better for you!

Re: Do you have severe pain without fusion?
TexasGirl #282923 04/22/19 01:31 PM
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I've never read anything suggesting that fusion can be reversed by biologics or otherwise. So I'm curious about that and wondering if the fusion was actually there in the first place or if your imaging was just mis-read. You also seem to have some symptoms that are not typically associated with AS (or IBD). It's quite possible that you have those diseases along with something else. Have you been to a medical center that specializes in looking at the big picture, e.g., Mayo Clinic?

Re: Do you have severe pain without fusion?
TexasGirl #282926 04/22/19 04:10 PM
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Thank you so much for your feedback!

The majority of my pain is axial. Whole spine and muscle spasms on each side of my spine. Then I’ve had hip bursitis and SI pain. The small joints are no big deal and haven’t bothered me for a long time. I do wake up sometimes with stiff, red, and swollen finger joints.

The doctors attributed the reversal to the biologics. There is nothing else that could explain it. Some docs say there have been studies that have shown that.
I have seen rheumatologists everywhere and has imaging at UCSF, Cedars, and many other places. I have been thinking about Mayo. It might be worth it.

the SI joint pain used to be one of my worst spots. I was looking forward to full fusion because it was so painful. Then the pain got a million times better and the imaging looked better. The recent doc mentioned that Crohn’s can cause SI pain by collecting and leaking near the SI joint. But that is usually only on one side.

What are the beginning changes called or look like on spinal imaging before they call it AS fusion? Maybe what I have is pre fusion changes and it hasn’t progressed as much because of the biologics. The pain is so great and it’s definitely inflammatory pain.

Re: Do you have severe pain without fusion?
TexasGirl #282929 04/22/19 05:46 PM
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This Radiopaedia article is helpful re the various pre-fusion changes/damage that can occur: https://radiopaedia.org/articles/ankylosing-spondylitis?lang=us. Pay particular attention to what can be seen on MRI versus plain xray and CT.

Re: Do you have severe pain without fusion?
TexasGirl #282930 04/22/19 06:48 PM
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And you may find this article (actually, the entire website if you're curious) especially helpful in understanding what your doctors may have been talking about when they said your "fusion" was "reversed" by biologics: http://enthesis.info/spondyloarthritis/bone_erosion.html . The inflammation and erosions that precede the repair process that results in new bone formation and fusion can be alleviated by treatment. See http://enthesis.info/spondyloarthritis/new_bone_formation.html. But once the fusion has occurred -- once new bone has formed -- it is permanent, unless surgically repaired. At least that's my rudimentary understanding of the disease.

Last edited by Winston; 04/22/19 07:03 PM. Reason: added something
Re: Do you have severe pain without fusion?
TexasGirl #282934 04/23/19 01:43 AM
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Wow, thank you so much for the links!

I remember years ago (when SI pain at its worst) , the xrays showed very blurry SI joints lines or no lines. The SI joint injections got more and more painful and sometimes the doctors would say they could barely get the needle in. Since then, those injections (when I’ve needed them a few times) aren’t as painful and the doctor says the joint looks better.

I will go through those sites with a fine tooth comb. Thank you! I typed out some of my imaging results below to see if anyone can tell me off the top of their head if this is what an AS person might look like.

Oh thank you guys so much. I e had a doctor tell me I shouldn’t complain because there are probably a million people with my spine who are fine.



good tracer uptake activity in SI joints on triple phase bone scans in 2005 and 2008. .


11/2011 X-ray and MRI said-mild sclerosis and heterogenous marrow signal in iliac bones adjacent to the sacroiliac joints is suggestive of prior episodes of sacroilitis. Mildly heterogenous T1 and T2 signal. Appearance suggests prior healed episodes of sacrolilitis.
Then a focal tear in right iliotibial tract lateral to the greater trochanter with free fluid. Also right and left gluteus minimums tendinitis.

2017-SI X-ray-borderline sclerosis on left. No underlying erosion.

2017 lumbar MRI- K5-S1 disc mildly narrowed
Minimal levoscoliosis
L5-S1- small central protrusion without significant effect on the thecal sac


2016 cervical spine c5-6 moderate degenerative change with disc space narrowing and anterior and posterior disc osteopaths complex. The posterior disc osteopaths complex may be causing central and neural foraminal stenosis.


2017 cervical spine MRI-
C4-5 left sided disc protrusion with slight anterior dural sac impression and thinning of anterior subarachnoid space. Small posterior annular tear.
C5-6 slight retrolistgesis with degenerative decreased intervertebral disc height, mild broad disc bulge and prominent bilateral unconvertebral spurring causing left sided recess and moderate bilateral foraminal stenosis.

Re: Do you have severe pain without fusion?
TexasGirl #282935 04/23/19 05:10 AM
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Quote
I e had a doctor tell me I shouldn’t complain because there are probably a million people with my spine who are fine.


I hope you are no longer using that doctor.


Quote
Are there other AS patients without spinal fusion (despite 17 year disease) with severe pain, stiffness, and fatigue that seem worse than everyone else?


Yes. There is not a direct correlation between pain levels and disease activity. As theyoungestmuse said, everyone experiences this disease differently.

Something to keep in mind is that having one condition does not preclude you from having another condition. There are many forms of arthritis, and you can have more than one. You can also have fibromyalgia, sleep apnea, and other conditions that cause pain and/or fatigue.

The advantage of a facility like Mayo is that you can have a complete workup where you see specialists in multiple fields, not just rheumatology. Looking at the big picture, as Winston said. It's worth considering.


Ginny - 58 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis, both currently in remission
unicompartmental knee replacements: right-June 2014, left-Aug 2018
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Culturelle probiotic, Melatonin (as needed)
Re: Do you have severe pain without fusion?
TexasGirl #283134 05/24/19 11:54 AM
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I have no fusion, and my dx is undifferentiated spondyloarthropathy. Basically, it’s AS without the fusion, or psoriatic arthritis without the psoriasis!


Rach

"Knowledge is power" - Francis Bacon
"Try all things, and hold on to that which is good" - Thomas Jefferson
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