Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Enthesitis Vs Tendonitis

Hi ...

A few doctors have told me that they think I've got a low level "simmering version" of AS. I'm HLA-B27 positive, had persistent and increasing lower back pain for 20 years .... and which I've now apparently suppressed through carb elimination. So Hooray! Although my MRI's never showed any changes in bone formation ... so the whole thing is a bit of a mystery and none of the doctors have really been able to really nail down whats wrong with me.

ALSO ... I've also suffered from persistent and never ending tendontiits. Basically ... it takes very little for me to "hurt" a tendon through physical exertion ... and then once injured, it takes a long time for that tendon to heal 100% ... if it ever does. So for example, I have a very light amount of pain in my left knee which is not debilitating ... its just inflamed enough that it prevents me from engaging in serious exercise ... which is whats needed 'cause I also have high blood pressure / bad cholesterol etc.

So ... THE QUESTION:

Given that the "no starch" route (for past 6 months) worked so well for the lower back pain .... why has it had NO effect on the enthesopothy ...? What gives?

I read alfalfa tablets helped a few people over on earthclinic.com, I don't know what else to recommend , but I hope you find something that works. watch out for antibiotics, my friend just ruptured her tendon and had to have surgery and was in a boot. Take care!

thank you - I will get some and give it a try.

One of my worst problems when the joint problems started (besides my neck and SI joint) was enthesitis.

It all started in 1998. At the same time the neck started really bad, the wrists started really bad too. That was my first "enthesitis", but the doctors didn't know that or call it that until 10 years later. It was just called "tendonitis" and treated as such. It started in my left DQ tendon, then my right DQ tendon in 1998 (july and then september, respectively) and it was so bad I thought I was going to end up on disability, and the left was far worse than the right because i learned things with the left that helped me with the right.

With the left, the first doctor, an orthopedist put me in a hand/wrist/thumb brace. For me, all bracing does is cut down on the blood flow, which allows the inflammation to just accumulate there, and doesn't let the body try to clear it out. So after that, it was infinitely worse, and PT got it to a certain point, but there was so much scar tissue in there that they had to send me to a hand surgeon who gave me a well placed cortisone injection. That allowed it to start healing but it nagged on for years and years and years, but at least i could brush my hair and brush my teeth again. But i still needed to be mindful of not too much page turning or paper pushing, hard for a university professor; i had just started my position in 1998.

Over the years, just about every enthesis has been involved at one time or another. The worst were:

1. a torn left ulnar wrist ligament that took 2-3 years to heal to the point of being able to use that hand. PT and cortisone were necessary. That was 2006.

the right ulnar wrist got like that last late summer / fall (2014), and i did see my good general orthopedist and the best hand surgeon in town, just in case, as a precaution for it not to get as bad as the left had been, or I would have been disabled (I am mostly write handed (writing and such). Thankfully on humira now, it slowly healed on its own by being very careful and giving it about 6 months. It started during a flare and when i was over using it (moving into an new office).

2. torn attachment where the IT and TFL bands attach to the trochanter. That was also summer of 2006. Couldn't walk without great pain for almost 6 months. couldn't take a walk or swim for a year. required PT after that first 6 months to get functional again.

3. torn rotator cuff. hurt it a little pulling bed covers up. finished it off swimming when i didn't realize that it was already a little injured. took 6 months to a year before i could swim again. PT and just the right exercise done every so slowly.

4. hamstring tendonitis behind the knees, where they attach, both sides. They were bothering me just a little. then i went to Boston and had to walk around a lot, which made them so so bad. i think it was 2007 .by then I knew how to treat them, so for the next month I just sat and iced them all day every day. when i felt the scar tissue forming, i switched to alternating heat and ice and started stretching them. 2 weeks of that and they were better. my physiatrist was impressed i could do that on my own.

5. tore a ligament in one of my fingers turning a key in the door lock.

These things happened by:

a flare inflamed the entheses
i injured them a little during the flare by something really mild
then injured them further by either something more strenuous like swimming
or injured them further by overuse
then as you said, they took a lot lot longer to heal, and only with PT and
sometimes with cortisone if very bad.


Fast forward.

In 2009, I started LDN (low dose naltrexone). It didn't help everything and I still flared badly. But. LDN was a life saver regarding the enthesitis.

I have not torn a tendon or ligament since 2009! yay! and my tendonitis in general has been better.

I did have a naggy enthesis where the bicep attaches at the top of the arm / front of the shoulder last year. it took a year to "heal" but was never terrible like in the past. i can't even remember how I "injured" it, but it was a trivial action I can tell you that.

and i told you about the right ulnar wrist last year.

But its been a lot better since the LDN.

and i started humira 2 years ago and that also has helped the enthesitis a lot too.

Thing is: tendonitis is treated the same way by orthopedists, physiatrists, and especially PT no matter what the cause: be it from enthesitis from spondy or from overuse or injury by anyone.

I do wonder if we have more tendonitis at the enthesis and others have it up and down the tendons and ligaments. I made that observation and comment to a rheumy and a PT. The rheumy blew me off; the PT also noticed that it was odd that my tendonitis no matter how bad never spread beyond that enthesis; that was not typical of her other patients.

Before LDN and methylpred and humira, I used a lot of ice and I still use a fair amount as needed. I did a lot of PT, which i haven't done in years now. I got a few cortisone injections but only when the joint had so much scar tissue that barely flinching it set up new rounds of inflammation and scarring so it would never heal on its own.

I had a rheumy try to dx me with fibro (conveniently tender points are at the entheses) but its definitely not fibro....long explanation here, which i won't go into. When many many doctors, some of who are experts in fibro, ask it and rule it out, one goes and researches it quite extensively. But one rheumy tried to dx me with it, and then it took over a year and a half to be able to get in to see another rheumy.

That same rheumy tried to dx me with EDS (rare collagen disorder)....you can look that up as well....again, other very good doctors asked the question and ruled it out over and over again. My joints get lose from the fluid in them from the inflammation. and that is what leads to some of my problems, along with the inflamed entheses, but I am not hypermobile. There is a difference. I've educated myself on that as well. But the two can be mistaken for one another. The way I flare and the way that humira works, would not be true if it was EDS. That's the easiest argument, there are others.

though long, I wanted to describe my ordeal, so you know, tell you how to treat them if you can't get a dx and the proper treatments (treatments to go to the heart of the inflammatory process), and how to really treat them (LDN, steroids, biologics).

when I went to another city in another state to get dx'ed after 12 years and 4 doctors not doing so where i lived and close to disability so i really needed to be treated properly (biologics as it turns out), that doctor told me perhaps one reason it took so long is that i had such bad enthesitis, worse than most with spondy, that other doctors thought, instead of severe spondy, it must be some other very strange disease. Nope. Just very severe enthesitis from severe flares.

Good luck!

My dx came down to:

enthesitis
sacroiliitis
cervical inflammation / bone spurs
GI inflammation (gastritis and inflammation and crohns like ulcers in ileum)
mild psoriasis (i always just assumed dry skin, but dermatologist dx'ed)
dry eyes and light sensitivity when flaring (thankfully not inflammation)
erythema nodosum (only during very bad flares)
mouth sores
flares
better with aleve (but gives me gastritis and edema so only here and there)
better with methylpred (but causes long term problems like osteoporosis, etc)

and now, the clincher: much much better with humira
but you can't do that test til you are dx'ed so its like the chicken and the egg problem.

and now when i have a bad flare, i get a bit of a malar rash.

hoping if you have an inflammatory arthritis, that it doesn't take you so long for a dx. but too, rule out the other stuff as well, like EDS. and if you have other symptoms like i listed above in your GI system, eyes, skin, all of that can be helpful for a dx.

its not one symptom that leads to a dx, but a whole story.