Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Question about symptoms

Dear ASKickers,

I've been lurking at this site for awhile. You all seem to be well informed about AS. For the past several years I've struggled with some symptoms that appear AS related, but others that I'm not certain. I was hoping you could provide some enlightened feedback.

A little background, much of which will probably sound familiar:

I was dx'd with AS when I was about 17, the time I began experiencing pain in my lower back and hips. This wasn't too surprising, since my father had AS to the point where his spine was completely fused. In my 20s and early 30s I began taking different NSAIDs to help take the edge off the pain.

About five years ago, in my mid-thirties (Gads, am I that old already?) I began experiencing intense pain radiating across my upper back, rib cage, and sternum that lasted many months. At times my neck hurt so bad I could hardly move it. It also began to hurt when I breathed. The pain was so bad NASAIDs were of little help, and I lost a lot of sleep.

Over the past year my pain level has increased considerably, this time in my peripheral joints, mostly in my legs. For awhile the pain radiated up and down my legs so badly I couldn't stand or walk for long periods without having to sit down. Persistent pain settled first in my knees, then in my ankles and feet (everywhere but my heel). I still have moderate hip and back pain (love hearing the "crunch" sound it makes).

For the past six months I've been taking Celebrex, which helps to a degree. A rhuemy recently put me on antibiotic therapy but the huge drop in pain only lasted about a week. I'm HLA-B27 negative, but X-Rays confirm fused SI joints. The rest of my spine looks good on film but doesn't always feel good. Within the past several months I began to experience pain in my left shoulder and - the most telltale sign - an awful stabbing pain in my right eye that came from my first bout with iritis. I took prednisone drops for over a month.

All of the above problems seem consistent with AS, except that for the past few years I've also experienced some not-so-AS-type symptoms: numbness, tingling and electric shock-type pain in my feet; mild numbness in my hands; and periodic involuntary limb movement. I've also experienced lightheadedness and have had a several bouts with vertigo. I've seen a neuro for these symptoms for over a year but so far she's established nothing other than I have peripheral neuropathy and restless leg syndrome. Recent blood work, CT scans, and an MRI were negative.

An orthopedic/physical medicine doc I saw suggested the AS could be "impinging" on my nerves, but I'm not so sure. I've never read or heard anything about this. As you might imagine, the uncertainty is extremely frustrating and emotionally draining. By the way, several days ago I started a LSD regimen, but it's too early to tell if it helps.

I'm curious to hear if any of you have experienced similar symptom histories, especially a combination of numbness, lightheadedness, or other neuro-type symptoms, and if the doc/rhuemy you see thinks they could be related to AS.

Thanks much for taking the time. You have created a wonderful community here, and I'm pleased to be a part of it.

Mike



One can never get any but a loose and ignorant notion of such things except by experience.
~ Mark Twain on the issue of pain

Welcome Mike,

I'm sure you will get a lot of feedback on your questions. I remember my rheumy telling me once that everything isn't AS, but it can contribute to it. I get a lot of tendonitis, bursitis and joint pain that we all seem to be likely to experience.
I too have had vertigo and occasional light headiness, the first 3 month bout was contributed to inner ear. That was before my AS diagnosis.
I also have those jumpy legs and am sure that is part of this somehow. A lot of us have been bothered with foot problems lately too.
My latest bit of pain has been my heels and my toes. The toes will burn and hurt like crazy. There has to be some kind of nerve involvement. It just makes sense.
A couple of years ago I had a horrible 6 months of my crazy bone nerve [ulna] going constantly. I attributed it to carpal tunnel. The rheumy I finally went to see said I can help the ring and little finger because the inflammation in your elbow is hitting the ulna nerve. The rest of the fingers were carpal tunnel and I did have the surgery for that. So, it's easy to confuse different areas of pain........
Also, the sciatica pain is because the inflammation hits the sciatica nerve in the hip.

I hope you get this worked out because I think I'm rambling and not helping you out one bit

Good luck and welcome again......

linda

Wow. Terrific detailed intro and nice to see you're trying LSD. I think it is worth a shot for everyone since its upside potential seems high and there is o downside except a little extra effort in putting together a meal.

As for your question I have experienced most if not all the things you think may be un-AS related. Little electic shock type stabbers (feel like a TENS unit jolt) in certain trigger points in my hands and feet. Numbness or lousy circulation in my hands. Some lightheadedness (aside from my natural panchant to be a little dizzy) . The shock pains I usally get when neck is tight and I'v eeither exercised or exerted myself in the cold. Also sometime get them when I've slept or sat too long or oddly. try to note if there is a pattern when you get these "shocks."

Mu blood pressure is low so I have a suspicion that thefusing or tightness in my neck and shoulder area combined with my BP causes the dizziness or lightheaded moments. Is your BP on high or low side??? Got a few here who like me have BP of a carcass.

Otherwise just want to say welcome.

 
stevec-they also serve who stand and wait

Mike,

Sounds AS to me. I have at one time or the other experienced all of the above. I know the rib cage thing well. Funny thing about it some of these Pains hang around for a while and then all of a sudden I do not see them again. Its weird sometimes, just stay on top of things best you can. Good luck.

Rickey

Welcome to our little (BIG!) group!

Remember that autoimmune diseases sometimes come in clusters -- I have the Blue Plate special of lupus, mild AS and possible some scleroderma (I have problems with the esophagus). And may be developing RA. My daughter has severe AS and mild anticardiolipin antibodies......We are both B
27 negative.

I have problems with the nerve in one elbow, chronic tendonitis in my shoulders and elbows and vasculitis in my legs that causes them to feel like bugs crawling in them -- something like RLS. Which disease causes what??? Who knows?

Did the neuro give you something for the PN and RLS? There is a good neuropathy website at neuropathy.org

Sandi

Mike,
Just wanted to welcome you and wish the best in dealing with your systoms. I am always amazed how this thing we call AS affects us differently. I have had some minor tingling in the hands when I sleep in a certain position, but without the shock. It sounds like some others hae had similar problems so you may already have your answer.
My only other suggestion is that you presented these systoms to a Rheumy if you have not already. She should be able to tell you if these are AS related or not or order the test that will help determine if there is another cause.

Harry

Live not as though there were a thousand years ahead of you.
Marcus Aurelius

I want to thank everyone for their warm welcome and feedback. Given that only five folks responded it's probably a good bet that certain symptoms I'm experiencing probably aren't very common to AS sufferers.

I'll be seing my ortho/physical medicine doc later today (the guy whose said the AS may be "impinging" on my nerves). I think I'm going to pitch a bone scan to him (not that I'm itching to do this, but I've never had one). Based on what others have posted, it appears that a scan could at least help clarify the cause of much of the pain I'm feeling, and possibly shed light on some of the other symptoms.

Thanks again! It's good to finally be part of this community.

Mike

One can never get any but a loose and ignorant notion of such things except by experience.
~ Mark Twain on the issue of pain

Hi Mike and welcome!

The thing with a bone scan, at least the way mine went, is that it will show hot spots in the spine where they can tell there is inflammation. Basically, all mine told me was that there was inflammation in my spine. "Well, duh," I thought as I popped some Advil, "tell me something I don't already know!"

I sometimes get tingly fingertips and toe tips. Yesterday, the wierdest things happened! I stood up to get off the streetcar and couldn't feel my right heel! It was downright wacky. Thank goodness it stopped, because I literally couldn't feel my shoe, let alone anything else I might have been stepping on. Apparently there's something called Rheiter's (????) that causes the fingertips to turn blue that might be associated with AS. They don't think I have that, but lately I've been wondering.

Again, Welcome to KickAS!!

Hugs,

Kat

Hi Mike

And WELCOME TO THE KICKAS FAMILY

I also get alot of numbness and tingling. My hands especially will go numb. Also been having a problem with my right thumb. It started with aching, then went to tingling, then numbness. And when I would try to bend it, it would spasm really bad. Looked like it had a mind of its own....and that mind was on some serious drugs
I honestly don't know if these are AS related or not. Just got done with another "its all in your head, here have a happy pill" doctor. The search goes on.

Have a great day and glad to see you posting.

Pam

"Just like moons and like suns, with the certainty of tides. Just like hopes springing high, Still I'll rise." Maya Angelou

I visited my physical medicine/pain control doc today (please note that this guy is not a chiropractor). Although his specialty less well known as a rheumy's, he has probably done more so far to try to help me than the half dozen other docs and rheumys I've seen over the past few years. Despite my curious neuro-symptoms he still firmly believes my primary problem is AS. After all, he said, it is a systemic disease and not one that simply affects the spine. I want to believe that's all there is too it (which is enough!), but the uncertain guy inside me would like to see proof, so I asked if he could do a bone scan.

As he explained, bone scans show a "snapshot" picture of inflammation - e.g. if I come in for the test and am having a good day pain wise, or merely feel pain in a few areas and not in others, I'll get only a partial picture of what's going on. His recommendation was to do excercise therapy in a hot pool and after several weeks if I still find that particular sites hurt we can do a scan of them.

For now I'm going along with the plan. I have a follow up appointment with a new rheumy in several weeks so I can cover my bases with him as well. I also have a follow-up with a neuro to see how my neuropathy and RLS is coming along. It's strange. If someone said to me five years ago I'd be seeing as many doctors as I am now I would have told them they were nuts to their face. Ah, what life does to you when you hit 40!

Thanks again for the open-armed welcomes.

Mike

One can never get any but a loose and ignorant notion of such things except by experience.
~ Mark Twain on the issue of pain