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Tonee 08-31-2011 11:42 AM

Can Ankylosing Spondylitis or other Spondyloarthropy Disease = debilitating fatigue?
Anyone experience debilitating fatigue with this sort of illness? One of my docs thinks I may have one of the spondyloathropy type disease but doesn't know which one....but then he said the extreme fatigue would be my symptom that doesn't really fit. Is this correct? The frustrating part is, the fatigue is the one symptom that is ruining my life, the others I can live around.

Can you have AS without severe or constant back pain? Without severe stiffness each morning? I do have occasional spine pain (mild daily, or a flare of it for several days), and neck pain...joint pain and 20 other symptoms, but, it all pales in comparison with the fatigue. The fatigue is so strong, I would say I have about 9% of my normal amount of energy...some days I literally just "survive", a shower is exhausting, walking across a room is exhausting, etc...

Positive HLA-B27, but I've heard that doesn't mean too much.

littlemomma0028 08-31-2011 12:33 PM

Re: Can Ankylosing Spondylitis or other Spondyloarthropy Disease = debilitating fatig
i have AS i have just about what you hae if not more i try to take it slow and one day at a time right now i am taking cho mag tris it is liquade formlike caugh med so far it has heled me but this week i have really hurt in my hipes hope this has helped some love ya littlemomma

jennybyc 08-31-2011 01:55 PM

Re: Can Ankylosing Spondylitis or other Spondyloarthropy Disease = debilitating fatig

the problem with the spondyloarthropathies is that blood work to confirm, #2, you have to wait many years for the syndesmophytes to form on the spine to confirm and #3, they can still affect the internal organs like Ra and others but then again, it could be a combination of OA and Ra. And you are right...about 8% of the population carries the HLA-B27 marker but that doesn't mean you have one of the disorders connected to it.

I recognize the fatigue you speak of...I have RA now after years of battling OA and at one point, being told I had Reactive Arthritis...another spondyloarthropathy. I had back pain. Finally, they made the determination that I had extensive OA all over, including my back and Ra had developed on top of it. My blood work was still negative for the specific tests for RA but they did an MRI of my wrist and that showed the type of inflammation that comes with

I try to explain the fatigue of RA as feeling like you are so tired from sleeping all night you need a nap. Anything and everything you breathe...and you get tired. It is overwhelming to the point of scary. I have fallen asleep while driving.

Keep seeing the rheumy. These disorders are best diagnosed by being watched and symptoms accumulated over a period of time. RA and the others form a pattern and if can be recognized with time and patience. The tests are very frustrating and often wrong but sometimes you get just one that shows you what you need to my wrist MRI. Only Ra causes erosions in the bone whereas AS caused syndesmophytes. And OA causes bone spurs that are recognizable as well. Often the x-rays and scans do better than any blood work.

But in the meantime, the doc can still treat you and that can help to identify the disorder as well. A good baseline drug for any inflammatory disorder is methotrexate and if that helps, you know something is going on. They can then progress to a biologic and if that helps, it narrows it down further....disorders like lupus don't respond to the same biologics. Until they catch up with tests that actually show something in the majority of patients, it's hit and miss with the diagnosis and treatment.

Hope this helps and I'm sorry about the fatigue...I know it way too well.


Tonee 09-01-2011 07:12 AM

Re: Can Ankylosing Spondylitis or other Spondyloarthropy Disease = debilitating fatig
Hi JennyBYC, thanks for the info!

The rheumy I went to told me she didn't need to see me again...which was confusing b/c I was pretty ready for some help in diagnosing what has been causing joint pain and neck pain, along with burning extremities, numbish type pain, tingling hands & feet, insomnia, ringing ears, several heart symptoms, iritis, fog vision, recurring bladder infections, trouble thinking of simple words, oh and sometimes I can pick up a book and a finger will hurt as if there's an extra little piece of bone under my skin and it actually makes a cracking sound...soles of feet can have the same feeling...etc. I though of the joint pain as another clue to my puzzle...and who better to help but a rheumatologist...apparently it is a more vague symptom than I thought.

Also, I felt like maybe whatever I have is taking years to develop enough to be more, the "I don't need to see you back" was unexpected. I also kind of expected them to do another MRI, since they had a baseline from years ago and now I was having new symptoms.

I don't have the same type of fatigue that you describe....I do not ever feel sleepy (which is another strange symptom...I haven't felt sleepy or felt myself falling asleep for years, since this illness began!). It is more of a feeling like, I just spent 20 hours in labor, and now it's 3 am, and I have the flu (minus the other symptoms), type of exhaustion...a very sick, unhealthy feeling. It sounds like an exaggeration, but, sadly it's not. Does this brand of fatigue sound like it belongs in the world of arthritis type problems? How about my additional symptoms?

at one point in 08' my rheumatoid factor 59.7....but I don't know if that is anything....nothing ever came of it.

jennybyc 09-01-2011 06:12 PM

Re: Can Ankylosing Spondylitis or other Spondyloarthropy Disease = debilitating fatig
AS with everything else in the rheumatological world, the rheumatoid factor test only helps when it is very high. 5% of the general population has a positive RF with no symptoms of RA and 25% of those with RA don't have a positive RF. So it's only good when high and I don't think yours quite qualifies as high enough. But it does deserve watching.

I guess the rheumy feels that your GP can watch you for now until they get something more "actionable". But that is strange. I'd ask your GP why and the plan is for treatment. I know my GP did this for years until I needed some more heavy duty drugs that the rheumy needed to supervise. I have to get blood work done every 4 weeks.

Your neck pain, burning type pain and numbish feeling and tingling in the extremities is probably a neck problem and that should be checked. All of those symptoms fit with possible nerve compression from a bulging disk(or several) in the neck. They call is cervical a search on it. I've already had 2 major neck surgeries for it. It can creep up on you with little pain but increasing nerve problems in the limbs including the ones you point to.

Were the eye problems diagnosed by an ophthalmologist? Foggy vision can be early cataract symptoms and iritis needs treatment. Many of the other symptoms are just the effects of aging. Get older is the pits! And that cracking sound in the fingers and feet is usually from losing the fat that is normally around the tendons of the hands and feet and it slowly disappears. You can then hear the snapping of the tendons and they get painful.

Trying to sort out what is what and what needs treating is tough. I have a primary doc, my rheumy, my ophthalmologist, my 2 orthos(knee and shoulder docs), my physiatirst, my neurologist, my neurosurgeon, my allergist and as of next week, my dermatologist. Was able to shed the neuro-ophthalmologist and return to "just" the ophthalmologist. With their help, I finally figured out what was what.

So hang in will get it figured out when the symptoms get bad enough they have to...unfortunately.


Tonee 09-02-2011 08:07 AM

Re: Can Ankylosing Spondylitis or other Spondyloarthropy Disease = debilitating fatig
Yes, the iritis was diagnosed by an ophthalmologist, a few times, who said that I needed to get to the bottom of what disease was causing it because it is an indicator of such. I also saw him when my vision fogged over, it was like looking thru a room of smoke, it only lasted 20 min on one eye then disappeared, then the following morning the same thing happened in the other eye for about 8 hours then it completely disappeared, hasn't happened since.

If this is the effect of aging, then I hate to think of what I will be like when I'm in my 80's...because that's about how I feel. Actually, my neighbor is 81, and she feels good enough to sweep off her giant porch every week and do meals on wheels for her church, etc....WAY better than me! I hope my doc can figure it out while I'm still young....I still consider 39 young! I expect a few creaks n cracks and a little less pep in my step to laugh about, but THIS, this is for the birds. The way my symptoms can all suddenly show up together after being gone for weeks, at the exact same time, makes me think they are tied together...all part of the same problem.

I will ask my doc about the back stuff, you have a good point, there could be more than one thing going on at the same time....maybe whatever disease is causing a flare, causes inflammation that angers an existing back issue or something. Also, some of the diseases they are thinking I could have can lead to other diseases/complications. I feel like one huge complication. A true enigma...or as my doc says, a zebra.

Thanks for all the ideas, encouragement and info!

niecsey 09-10-2011 01:20 AM

Re: Can Ankylosing Spondylitis or other Spondyloarthropy Disease = debilitating fatig
Hi Guys x another one here waiting to see rheumy again after 2.5 years. Had hla b27 blood test not positive but l do have all the classic symptoms for AS been going on for years, still waiting xray results back. I get there extreme tiredness too at times it has been that bad l have been that tired l have felt confused if that makes sense? sometimes l just have to stop whatever lm doing and lay down not that l can do much without pain these days! My latest blood showed a higher than normal ana. Im really interested in the eye problems that have been mentioned cos my eye plays up at times it looks covered in jelly and blood streaks and sometimes it is totally blood red!! Ive noticed the eye prob flares up more when lm having bad flare up,,,, thing is l had graves disease ( thyroid removed 4.5 years ago) so no one has taking my eye probs serious until now thanks to an observant physio lady bless her hence me been looked at again! lve been told to go to the eye hospital and get it checked out when it next happens to assist a diagnosis. I will get sharp stabbing pains only split seconds lasting, blurry vision light appears too bright and other things, Do any of you know if its possible to have AS without the gene? Because lm getting confused here reading that you can have the gene and no AS!! So shuldnt it be the other way round too ? cos lm abit worried cos l havnt the gene AS wont be looked for in me now!! Still got xrays to come back. Sorry for waffling and hope you guys arnt in too much pain xxx

niecsey 09-10-2011 01:22 AM

Re: Can Ankylosing Spondylitis or other Spondyloarthropy Disease = debilitating fatig
Ps Ton know just how you feel big mystery lve been like this for years and its grinding me down now my advice dont be fobbed off and have the courage to tell them how you feel... l didnt and it aint a good place to be x

Tonee 09-10-2011 07:37 AM

Re: Can Ankylosing Spondylitis or other Spondyloarthropy Disease = debilitating fatig
Hi Niecsey, I hope you get some answers from your doc, accurate answers! Yes, you can have AS without being HLA-B27 positive. Apparently, most people that have AS do test HLA-B27 positive (it's a high percentage, something like 80-90% I believe), maybe your doc is weighing that in. Yes, a good number of people that have that gene will never get's just that having the gene can make you more susceptible.

I would get in to have my eye checked immediately if something is wrong, as you said, it could help in diagnosis (I was amazed with the specific things my ophthalmologist could tell me about my eye reactions and diseases), but also, you can't be too careful with your eyes! When I had iritis, I had sensitivity to light and I think blurred vision, and it looked like I had pink eye. I have had that jelly look in the corners during iritis (and also a different time with an allergic reaction).

I know how you feel when you say you're worried they won't consider AS without the gene. When you're undiagnosed with a mysterious illness, they need to leave no stone unturned, because it is one of them! They say the are looking "for horses and not zebras", do I have that saying right? Well the way I see it, if you've gong undiagnosed for years and therefore all of the more common diseases have been considered, there there's a good chance it's a rare one! If they are trained to shrug off the rare ones because they are less likely, we may slip through the cracks!

I hope your appointment goes well!

niecsey 09-10-2011 01:22 PM

Re: Can Ankylosing Spondylitis or other Spondyloarthropy Disease = debilitating fatig
Hi Ton and thanks x lve the jelly in the outer corners however l do get it on the inner corners too and jelly lumps... the lumps tend too go pretty quick. I will go and get checked when they flare up again l dont know what normal is meant to look like these days lm used to my eyes. Thanks for your reply and l hope you toog et sorted soon. Good luck x

bella2552 01-12-2012 02:37 PM

Re: Can Ankylosing Spondylitis or other Spondyloarthropy Disease = debilitating fatig
i have a back problem called spondylolesthesis . i am in pain and tired all the time. any exercises you can recommend?

bella2552 01-14-2012 11:52 AM

Re: Can Ankylosing Spondylitis or other Spondyloarthropy Disease = debilitating fatig
:confused:I can't seem to reach new and am frustrated by this site! bella2552

bella2552 01-14-2012 11:55 AM

Re: Can Ankylosing Spondylitis or other Spondyloarthropy Disease = debilitating fatig
am trying to reach "jenny bc" ? new and don't know how to use this site frustrating!

Tonee 01-14-2012 01:01 PM

Re: Can Ankylosing Spondylitis or other Spondyloarthropy Disease = debilitating fatig
Hi Bella2552, sorry you are having trouble....I know nothing about exercises for back problems and probably even less about how to use this site (but it have proven to be invaluable to me and getting a diagnosis, I think it's worth figuring out how to use..I'm new to any sort of message boards and so I'm slow getting around any of them). Have you tried going to one of jennybyc's old posts and when you mouse over her name, it gives the option to send her a message?

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