I think this might be a long one...feel free to ignore or maybe make yourself comfortable :-)

Hi everyone, I stumbled across this website a few weeks ago and have been reading the message boards since. I finally plucked up the courage to join yesterday after a set back in my diagnosis made me frustrated that I had no-one to talk to about how I feel.

I'm a 30yr old female who has been having the most appalling year of my life so far (and I've had a few!). Since the beginning of the year I've had the most awful 'bone' pain around my SI joint, hips, and pelvis. This pain would wake me in the middle of the night and I'd have to get up and stretch or move to ease it. Coupled with ridiculous levels of anaemia and fatigue I've been in constant pain and haven't really been living any kind of life.

Initial thoughts from the GP were cancer (I disagreed entirely and was proved correct = no cancer), 'just' back pain, 'just' anaemia, and finally AS. When I read up on AS everything clicked into place and I really believe this fits. Looking back I've been having pain build up for the past 6 years but have put it down to other things until the point where I couldn't ignore it anymore.

A Rheumy gave me an initial dx of AS until results came back and this is what has upset me. I'm HLA-B27 neg, Rheumatoid Factor neg. Xray was clear and MRI showed only wear and tear. The rheumy has said he doesn't need to see me again but I disagree.

Is there anyone else here who had a similar initial response but who pursued the case and was later confirmed with AS?

I just have a gut feeling that this it and within the last couple of months my whole back/neck/ribs are hurting and it's really getting me down.

I have an incredible support network, a husband who is currently doing everything for me and very loving parents and friends but I'm about to lose my job because I can't physically do it any more and I don't know which way to turn.

I need to go back to the GP but don't know what to push for.

I hope I haven't bored you to sleep!

Thanks,

Kati x

I have very similar symptoms. One thing you should consider having done is a lyme test. But be prepared there is alotof controversy between general practitioners and lyme literate physicians. Many people are told they arenegative bytheir GP's when they are in fact positive. You can learn more here http://www.ilads.org/lyme_disease/about_lyme.html some of the symptoms you describe are symptoms of lyme as well.

You still could have AS. My mri was negative but a ct scan of the pelvis showed issues with the SI joints. I was HLA negative as well.

Hi Kati,

Sorry to hear about all that you are dealing with, it's overwhelming to say the least, isn't it?

It does sound like you are in the right place here at KickAs, your symptoms sound so familiar to me (I'm sure others here will share their opinions and views as well on their signs and symptoms).

I'd say the best thing you can do for yourself is to read up on 'things', educate yourself about inflammatory disease and what you can do yourself to tackle the 'problem'.

I have no imaging to help them prove it's AS in my case (I did test B27 positive, but I'm also Scandinavian, with northern indigenous blood, so fit the old B27 mold to a T!). I've never had Iritis for instance, but had persitent and increasing IBS for years, lots of bad colds, chest infections, then SI pain, then full blown spinal and major joint-enthesitis.

If you're open to diet and 'lifestyle' changes, that's the area I would research (I sure did!), lots of good info out there if you google no-starch diet / Paleo diet /Autoimmune protocol diet and autoimmune disease.

The interweb has been an amazing tool for me, this site in particular, since it's so important to remind yourself that all these crazy symptoms are not just 'in your head', that so many other people have these inflammatory problems, and they can be improved upon, no matter what kind of ill-informed doctor/specialist may cross you path.

Keep reading and asking questions, it's well worth it...

/Kristine

Wow, you guys are exactly why I posted!

You have no idea of the relief I feel just hearing from supportive people who aren't dismissive! Thank you so much!

I'll definitely look into the Lyme test, I'm very much a researcher so am following up all avenues :-)

Unfortunately for other reasons I can't change my diet much but I am looking into doing an apple detox and have been doing some stretches that make a big difference. I've also thought of hydrotherapy but I can't really do that when I don't have the energy to even manage the stairs! It's on my short-term goals list, though.

I think I'm going to approach the doctor and discuss the high false-negative rate of the HLA test and mention that my Aunt had AS. I'm also going to ask for a pain clinic referral and local physio.

You've really cheered me up, thank you xx

If your AS is just starting NSAIDs at an anti-inflammatory dose should work well. You probably wouldn't want the more powerful stuff till NSAIDs don't work anymore.

Oh and you need to exercise with the nsaids to see if they are working or not I recommend 30 minutes biking/elliptical or running. You could walk too... takes me an hour to = 30 minutes on those other modalities.

I'm not sure how normal it is for x-rays and MRI's to show wear and tear on a 30 year old. I would think that indicates inflammation consistent with AS, but I'm not a doctor. Still, I wouldn't trust a rheumy who puts too much stock in the HLA-B27 test. I am negative and my rheumy looked my right in the eyes and told me that I was a slam dunk AS case. It probably helps that her husband has AS, so she has more than your average familiarity with the disease.

There's no excuse, in my opinion, of a doctor being dismissive of your symptoms based on some normal blood work and inconclusive scans. AS and other similar disease may be active for years before they show up in scans, tests, etc. Hang in there and find a doctor who will work hard to figure it out.

Hi Kati, welcome. Next time you go to the doc, see if you can fill out this form beforehand. It can help with keeping everything on track.

Doctor's Visit fill out form

Hello Kati,

Not much help for now, can you detail some more of your symptoms... it is not uncommon to be HLA B27 negative and still have AS.

Hoping you find answers.

Tim

Yes, similar difficulties and I'm in the UK too (though I am a bit older than you). They do seem far more likely here to dismiss you if there is no absolute evidence for AS on imaging, when really they should be either considering an undiff spondy diagnosis, or looking a bit harder. You can ask for a second opinion, and I'd definitely do this - also strongly requesting that your imaging is reviewed by a musculoskeletal specialist radiologist. Make sure you get sent to an Ankylosing Spondlyitis clinic though (even if you have to travel further to it), not a general rheumatologist. You never know - what was seen as "wear and tear" could actually be inflammation, but have been misread. Just a thought - you need to find out if they did STIR sequences with that MRI. If not, then it would be useless to see inflammation. If they didn't do dye contrast as well, (injected dye, with images taken before and after) then you could ask the second rheumatologist if they would do that. You can do some research yourself (check out the ASAS/EULAR recommendations for AS diagnosis and testing) but I think you should be able to find something that would suggest that there are things that dye studies pick up that even STIR MRI sequences don't.

Consider joining NASS as well - its the UK National Ankylosing Spondylitis society, and has a wealth of information. If you don't join, there is still a lot on their website, including downloadable exercise booklets. Exercising is one of the most important things you can do regularly. They also have a helpline that you can phone or email, and were a lot of help to me in trying to sort out the whole diagnosis and treatment thing.

At the GP, ask about treatment with full doses of NSAIDs - thats the first line treatment that a rheumatologist would give anyway, so you might as well try it. Doesn't really matter which one you start with. If it doesn't work well enough, or if it upsets your gut, then take them with stomach protectors, or try a different one. There are loads and they are all slightly different. Some of us have gone through half a dozen of them over the years. Also ask your GP to refer you for physio, but see if they will put "inflammatory back pain" on the referral slip to make sure you get someone who understands AS. The other option that GPs have on offer is steroids - either as a short course (a couple of weeks at around 25 to 20 mg a day) to knock a flare, or as an IM injection to give you a bit longer relief until NSAIDs kick in. Steroids aren't a long term solution (too many side effects) and don't cure anything, but can be great to give you a breather from pain. If either steroids or NSAIDs work quickly (and pain returns when you stop them) that is another good indicator that you are dealing with inflammatory pain, not mechanical pain.

Good luck

Sounds like my history all over again. I'm 32 and have been going through this for the last 12 years. However, my GP thought it was AS off the bat, since my dad had it and it can follow a genetic pattern. I had x-rays, blood work up, etc. I had a positive rhemitiod factor, and Positive B27. However I went to the Rheummy he looked at me and said you are young. You don't have AS. Come back when you can't walk anymore. Literally, without even checking my chart! After looking at it, he still said the same thing and said not to bother coming again! So much for that help.

So I came home and luckily have a good relationship with my G.P. He's been helping me along the way. I also see a Natrapath which has been amazingly helpful. I see a physio as well - for other things but they are always willing to give me extra exercises and a hot pool when the A.S. gets out of control!

Good luck. PM me if you have any questions or need to vent! You should also join the ladies group here:)

Samantha

For 12 years I went through the same nonsense.

"Not enough evidence of inflammation." "Not enough evidence of inflammatory arthritis." "Fibromyalgia." "Rare Collagen Disorder."

All of it hogwash!

Finally I spent my own money and flew to another city in another state to get diagnosed with spondyloarthropathy.

I had a PT who told me she thought I had AS within the first few years of having symptoms. I had a physiatrist who told me I had an inflammatory arthritis, even if I couldn't find a rheumatologist who would diagnose me. Both of those women helped my symptoms immensely.

Then I moved and dealt with it largely on my own. 3 rheumatologists at this point. One tried to tell me my SI inflammation was OA….BS, total BS!

Yeh, my blood work is all negative (hence the term seronegative) for spondyloarthropathy.

And my scans were all considered "within normal".

But finally found that doctor in another city in another state who understood spondyloarthropathies and with my letter from him, was able to get into the one good practice in our town and my current doctor also understands spondyloarthropathies.

While I may not have blood markers or fusing seen on scans, I do have the following:

sacroiliitis flares
neck problems
enthesitis (LDN has helped it tons)
gastritis
inflammation and small crohn's like ulcers in my ileum
constipation when I flare, diarrhea (and lack of digestion) when I flare badly
mild psoriasis
crazy leg rash when I flare badly
dry eyes when I flare
mouth sores when I flare
fatigue and feeling like I'm coming down with the flu when I flare
osteopenia caused by the inflammation (so much worse at the joints indicates)
OA caused by the inflammation (so says the rheumy)
Bone spurs caused by the inflammation (so says the rheumy)
Flares
Aleve works (but side effects so can't take for more than a few days)
Prednisone / methylprednisone works like a charm
Humira works like a charm
Family history of "rheumatism" (it took my aunt 50 years for a dx)

And yet it took 12 years to get a diagnosis. Riddled with symptoms, but not "their symptoms". They really need to get educated on spondyloarthropathies.

My initial diagnosis was undifferentiated spondyloarthropathy.

I think my official diagnosis currently is spondyloarthropathy, as that's the code on my paperwork each time I visit my rheumy.

He has been much more interested in treating me than in the semantics of it all. Bless his heart!

Hey Kati!

Sorry you've been having trouble. I had no problems with my diagnosis so can't so I have been in the same situation. What I will add though is that I hear of so many stories of people who say it took them a very long time to get properly diagnosed and it does frustrate me when doctors dismiss cases so easily. There are many people who are Hla-b27 negative who live with AS so I don't think that it is a determining factor.

I remember a few years back my Mother took me to get one of those blood inflammation tests (I think this is what you were referring to?) and my results showed less inflammation than my older sister who doesn't even have AS. I felt so angered by this because I felt that it is in no way a true reflection of the amount of pain that I have experienced with this disease. From being unable to move from my bed in a terrible state some days and unable to play sports that I loved so much due to the pain, yet the results were 'clear'. It made no sense to me and still confuses me to this day. The MRI however revealed signs of bone fusion and joint damage. Therefore I'm not too sure if that inflammation test is always accurate.

In terms of managing the disease.. most people live pretty good lives with AS. Treatment has come so far and most people respond terrifically to meds such as biologics. There are also alternative treatment such as the no starch diet which you will hear a lot about if you hang around here. I recommend you visit the low starch diet success stories threat on the diet section of the forum. It was truly inspirational when I read it and gave me a lot of hope at the time. It can be a real struggle at times and we all go through it, but I really think you will be okay.

Nice to meet you!

Seb

I can't thank you all enough, you've given me so much to think about and go on with, I definitely feel like I need to keep on pushing to be listened to. I'll try to answer all of your questions but forgive me if I miss any, I'll try to cover them all.

Dotyisle, my main symptoms:
- Low back pain around SIJ, hips, pelvis constantly. Worse in the middle of the night or in the morning, reducing later on once up and about and able to stretch.
- Pain around neck and upper back/ribs. Sometimes find it difficult to breathe deeply.
- Extreme fatigue
- Anaemia
- Night sweats when having a really bad flare.
- Recently started to get heel pain & also shooting pain down left arm into ring finger.

Cemc - You've been so helpful, especially good to hear what the GP can offer.

Sue22 - You mentioned feeling like the flu. This is really interesting as I had a really, really bad day on Thursday. I think due to stress. All of my body hurt, even my jaw and my feet and it was very bizarre, I said to my husband that the best way to describe it was 'flu-ey', so I think I know what you mean!

Thank you ALL so much, for listening and for responding constructively. I can't believe how many people find it difficult to get a diagnosis, it's so sad that someone may have to fight to be heard. I am however glad for the people who had a quick diagnosis, it must have been a relative relief to have an action plan for a way forward.

Fingers crossed my GP is understanding this week.

Have a good week everyone,

K xx

Being here taught me a huge amount.

Before that, my husband joked about me getting these "pseudo-illnesses" where it seemed like I was starting to get a head cold: fatigue, body aches, etc but never the congestion, then I'd slowly get better……

Then I learned that that was the start of a flare and it always proceeded the SI joint flare and all the other parts of a flare.

I've learned so much here.

Hi Kati
I'm so sorry your having a ruff year I can completely relate to you and all the problem your having as we'll , I'm also from the uk I'm 33 and have been having the same issues as you since the end of April this year,
* my pain is also in my si joints, lower back and hips
* Waking up in the night due to the pain
*morning Back stiffness that lasts for around 2 hours per day
* Moving helps relive the pain
* I'm wheat and gluten free as I'm an undianoiged coeliac
* I've got a high sensitivity to sunlight
* and in the last week I'm now having problem with pain in the arches of my feet and my heels

So far I've been doing physio, had to have cortisone injections in my hips (as I've also got bursitius) and at present I'm having acupuchture on Thursday and in just over a week an MRI to see what is going ....then my doc will see if he will refer me to a rhmy. I have a family history of back problems and my mum has got arthrist of the spine so I asked my doc about AS and he said that my symptoms def follow suit but he said it's very hard to get a dianoignoses ...... I don't know if that is a uk thing , but so far from a physiophyaphist I've been told my problem is si joint dysfunction , gluteal tendonpathey, bursitis and OA in my left hip but I will keep pushing to have this check as I truly believe like your self it's AS

Good luck I hope everything works out for you
Kerry x

Oh my goodness Kerry, sounds like you're really going through it and I really, really hope that you have a positive outcome soon. Isn't it bizarre kind of 'hoping' that an mri shows something?! People all say that it's better to have it come out negative but when you just want to know what's wrong and have a treatment plan you almost hope that the tests do show something. You must let me know how you go.

I'm going to be asking the doctor for injections this week as I'm just not coping anymore and I'm about to lose my job so my next hope is for some short term relief while pushing for the longer term big picture.

Whereabouts in the UK are you (Please don't answer if you don't want to)? I'm on the Northants/Bucks border. Feel free to message me if you want to.

K x

Other than the anemia and shooting pain, the remainder sounds/feels familiar. I would not dismiss AS or other similar spondy arthritis for now. But will be more difficult with rheumies most likely to get properly diagnosed if some sort of arthritic pain.

How is your diet? Maybe clean that up first.. not necessarily No Starch like some here have good results... just getting rid of junk food, processed foods etc... emphasize veggies/fruits/whole grains if still want the starch.

You may be in for the long haul in getting diagnosis, so everything you do to help your body will help in the long term.

Best to you and keep up the good fight.

Tim

I know I'm the same , I don't want anything really horrible showing up (cancer etc...) but at the same time I need to know as I I want to be doing the best I can to help my situation because at the moment with what I've have been told so far I've got everything seems to contradict each other and I really don't know what to do for the best even the physio exercises hurt me and the ones they have given me for my hips really hurt my bad like teeth clenching pain.

The injection I had were in the bursa of the hips, I didn't feel a thing and they have really helped with my walking but since then I realised how bad my lower back was ( I thought it was due to my hips) that's how I came across this site as I kept seeing si joint dysfunction linked with AS

I'm in the south East London way, and I will you too I hope everything work out for you
Kerry x

Hi, Kati!

I'm like you. I have the pain that was making normal activities impossible, but I am b27 negative, no ra factor, normal sed rate, normal si joint mri and normal si joint xray ( well the xray showed scarring, but since the mri didn't, they said it was a "shadow" lol). I had mris of my hands and shoulders that show inflammation, and that's basically the only tangible evidence.

My dr is treating me with mobic 15mg daily and sulfasalzine 1000mg daily (we will prob go up to 2000mg in the next couple months). I have also done two steroid dose packs. He def thinks this is autoimmune arthritis, but exactly what it is is unknown. Due to the si joint involvement, I believe it is as alone or as and ra (my hands are pretty painful).

My ortho drs also both suspected autoimmune arthritis, and one other rheumatologist that I saw said I have carpal tunnel. But the carpal tunnel surgeon I saw said I definitely don't have carpal tunnel. So, it's kind of a mess. I just kept pushing for answers, and finally I found a dr who really listened and said that this just wasn't normal and I should be treated. I think you should get a second rheumy opinion. It took me two tries to get one who listened. I'm still not positive that I have autoimmune arthritis, but other than Lyme disease (I live in a region where this would be highly unlikely), I have no idea what else this could be and neither does my dr, which is why he is treating me. He told me that arthritis doesn't always show on blood tests, and it's possible for the mri not to show the inflammation especially because it was without contrast. I'm improving due to the medication and diet changes. For me, diet alone was not enough, but it definitely helped a great deal. I follow the paleo diet and avoid starch, but I've cheated a couple times on the starch. Even though all my blood tests were normal, they got even better when I changed my diet. I'm hoping to wean off the meds and manage with diet alone, but I'm not there yet.

I'm going to try and get pregnant soon, and if I improve during pregnancy that will be a big indicator that this is autoimmune.

Just keep pushing for answers, obviously something is wrong. Sadly, sometimes only time can tell. Good luck. You're going to be okay. Just don't give up!

I hope you get a dx soon. I would see a pain specialist in the meantime to help you handle your pain.

I agree with Pam about seeing a pain specialist. They can help a lot.