Sound like I have AS? Here are my symptoms.

Bones, joints and muscles
1

A couple hours after laying down in bed, my back is already stiff and painful. I can barely sit up and I can't twist side to side, and it is very painful to try. I usually can't stay laying down for more than 5 or 6 hours tops. By that time the pain is too bad to sleep. After a couple hours of being up and moving around the stiffness and pain has gone away… almost (my back is almost always at least a little stiff).

I experience a similar kind of back stiffness and pain whenever I stand (pain tends to concentrate lower) or sit. Washing dishes at the kitchen sink for 10 minutes and I'm in a lot of pain.

Mechanically, my back is fine. Strong and even relatively flexible (when loosened up), probably because I have exercised and stretched regularly for many years.

I've seen doctors. Back doctors say my back is fine. A rheumatologist said I have gene marker but the x-ray test didn't clearly show the signs of AS. He thought my pain problems were due to a congenital malformation in my lower spine. Another doctor said he disagreed but didn't know what I had.

I'm 45. I've been experiencing these symptoms for about 10 years I think. They were subtle at first, so subtle I don't really know when it started exactly. But they have definitely gotten worse over the last couple years.

Anyway, just wondering if anyone has any ideas or suggestions. Thanks.

2

Sounds like you probably do have As and it mightn't be too long til something shows up on X-ray. Mine too a while to be diagnosed, about 10 years, then got pretty bad pretty quick after that, within the next 18 months. Start doing lots research so you might be able to understand what this will mean for you and also educate others so they can be support for you. I also have the gene markers, family history and X-ray, blood test and Mri/ reports . Good luck with this. Forums are good therapy...

3

Thank you for the quick reply. Was it a rheumatologist that finally diagnosed you? It was over a year ago that the rheumatologist saw me. Is it time to see a new one? I think so, I just don't know how fast the signs can start to show. Maybe seeing a different dr would be good any way. But whatever I have its getting worse faster it seems, like you mentioned it did for you. From what I've read there's not much that can be done, no magic cure. Doesn't sound good. But I wil research it more. Thanks again.

4

Tylerlybb your symptoms sound familiar. Get a 2nd or 3rd opinion if needed - only you know the pain you are experiencing. There is a statistically bias against being diagnosed AS after 45 or even 40. But being HLA-B27positive does make it more likely. Unless your pain is isolated to the location of supposed malformation, I would go back to the doctor for further testing.

There was absolutely no way my pain a year ago was isolated to my hip and "osteoarthritis" at 43. A congental malformation and AS are not mutually exclusive - you can have both.

I had 2 MRI's done one month apart. The first showed stenosis in the lower back and on the second the doctor didn't see it. Also the first didn't confirm AS either. In the  second it was a split decision - the local doctor didn't see it but on the same MRI the clinical trial doctors did. At the early stages an AS diagnosis can be subjective.

It is not normal to not be able to sleep at night because of pain and stiffness. In the US you have to fail a few NSAIDs before doctors can put you on TNF blockers if you are non-radiographic. If you are on an NSAID and the nighttime pain and stiffness are not resolved, consider switching to new drugs - you may have to push your doctor. Sleep is very important in improving your health for inflammatory conditions.

Request an MRI specifically to determine AS - it looks for inflammation in the sacrum. It can confirm it, but doesn't rule it out if inflammation doesn't show up.

Consider requesting a sleep study. I'm not certain of all the repurcussions, but I believe inflammatory marker like TNFa are significantly increased with issues like sleep apnea.

Each time you go to the doctor, you have a story to tell and only a short time to tell it. You may want to have a list handy the next time you go. Make sure you impress on your doctor how much each symptom impacts your quality of life. Until you resolve or improve your pain and fatigue, I would not be satisfied with diagnosis or therapy.

The biologic TNF blockers like Humira, Cimzia, etc. are capable of putting this disease into remission. Don't be shy about inquiring about them, it's never to early to ask questions. Even if the MRI, blood tests do not confirm AS you could still be nr-AxSpA (non-radiographic Axial Spondyloarthritis). If you get a diagnosis of a Spondyloarthropathy a positive response to treatment with a TNF blocker could confirm a correct diagnosis. Most importantly don't let the expense of the biologic drugs deter you or make you feel that you are a burden. They are stupidly expensive, but you should be able to find a way to get access. The cost should have zero impact on you expressing interest in them or your doctor determining you need them; guilt free!

FYI, every time i see my rheumitologist he makes a comment that he is still suspicous of my DX. So it goes. I'm only three weeks into Cimzia on second loading does and no response yet, may be a bit worse (but I've been very stressed at work). I'm pretty down on the whole pain thing right now and concerned the TNF blocker isn't going to work. Then what? - everything about my pain profile and symptems fit AS to a T - excluding the NR, B27-, seronegative and age. 

I still feel like I fail coming out of every doctors visit. I fail to mention something or am too timid to ask questions about other diagnostic possibilities. I have a half-assed Dx and a real treatment for now, but still in pain and limbo.

5

I'm happy to help Tyler..Sylvester explained it better than I could...

..I had an X-ray on pelvis one day then that afternoon an appt with chiropractor..he said he reckoned I have inflammation in sacriilliolic hip joint, X-ray results reported active stage 1 in right hip next day then all test over next 6-8 MONTHS verified it including the BLA-27 marker. Rheumatologist asked for another X-ray after 12mnths to look for any changes and it reported stage 2-3 in right hip and now stage 1 in left hip. This initially confused me because all my pain was in lower left hand side of my pelvis. They all said it was deferred pain because it was so close to my spine!

..I decided to regularly see the same two drs and stay with the rheumatologist that I have coz I don't want to go through all this again- decided to follow care plan drs devised, plan, list and communicate any changes prior to appts and rheumatologist asked me also to take photos of any obvious swelling that occurs. Hope this is helpful..cheers,:-)

6

Hi Tyler,

  Your story including your pattern of pain and difficulty in diagnosis is familiar to man of us.  If you have the pain, positive HLA-B27 and no solid x-ray evidence of AS then you better be prepared to go through many contradictory doctor's opinions.  Your best hope is to find a good rheumatologist who is very familiar with the family of spondyloarthropathys.  This is often easier said than done since this constellation of diseases is a developing area of study and has not had the research money or notoriety of other autoimmune diseases.  There are other diseases that often tie to AS and can be seen as supportive evidence.  People who have AS sometimes show other inflammatory ailments such as plantar fascitis, irritable bowel syndrome, chronic eye inflammation (iritis) or even some forms of heart valve problems like aortic regurgitation.  If you have a history of any of these things then it can be seen as supportive evidence since these diseases often come in clusters.  I don't generally trust wikipedia for technial information but it actually does a pretty good job in this case of summarizing this information in an easy to understand format.  Simply look up spondyloarthropathy in wikipedia.

But again, it is important to get good help and if you find a rheumatologist that does not seem very deep in this particular are of autoimmune diseases look for a different one.  Some very good rheumys are not particularly deep in this area.

7

Thanks to all of you. I appreciate your help very much. It sounds like first order of business is to find a rheumatologist who is very familiar with spondyloarthropathys. I will also study up more on my own. I keep coming back to this: This isn't normal, something is wrong. Maybe it is or isn't AS but it's SOMETHING, and at this point I mainly want to know what it is. Hopefully, then I can find a treatment that can help, at least a little. Thanks again.

 

8

Hello, can I suggest that you ask your doctor to arrange an MRI...this may show anomilies in your spine which ordinary X Rays cannot pick up. Once that is done they will be able to advise you more on meds and suggestions on sitting and lying down. Most of us have been where you are at present as doctors don't seem to understand AS...they need proof from an MRI...Get one done asap then on to a specialist who can help you. Good luck....and hugs too...