Just diagnosed with probable Ankylosing Spondylitis.

Hibee

Hi All

This is my first post so I would like to say hi to everyone. In 2007 I was diagnosed with reactive arthritis which was extremely painful and I was off work for 5 months. It was caused by a bad gut infection but with the use of Naproxen and a couple of steroid injection it did get better after about 6-7 months.

Ever since then I have had occasional lower back problems but just took some ibuprofen which seemed to help.

Since May this year I started to get really painful back pain in the early part of the morning usually from 3am onwards the pain was worse in lower back and upper buttocks but also had upper back and neck pain.

After getting up the pain and stiffness lasted anywhere between 1-2 hrs and then eased. I also started to get pain in other joints, I get really bad achilles heal pain and pain in the joints of my toes. I also have tender points at the end of my ribs which is painful to touch.

I went to my doctor who ran some blood tests which came back fine but i did test positive for the HLA B27 gene. He then sent me to get an x ray which suggested there was some squaring of the joints. My doctor then refered me to a rheumatologist for further testing.

I saw the rheumatologist on Monday and he did a detailed examination and looked at my previous medical history and family medical history. He looked at the blood test results and got some up to date x rays. He diagnosed me with probable Ankylosing Spondylitis (arthritis of spine) and prescribed me Naproxen and put me down for a physiotherapist lead exercise class. I have to go back and see him in 3 months and if the Naproxen has not helped he said there are other medications which can help.

This has come as a bit of a shock as I am only 36 and lead an active life until this year with all these symptoms I have been getting.

What does a diagnosis of probable ankylosing spondylitis mean? he said he was sure of diagnosis but was getting second opinion to confirm the diagnosis.

Does any one here have Ankylosing Spondylitis? would be good to here from others. Also is there a connection between reactive arthritis and ankylosing spondylitis?

Sorry for such a long post. I will look forward to meeting you guys.

Hibee

frogmorton

Dear Hebee

first fo all a huge welcome to the forums from me...

I don't have AS myself, but teher are folks on here who do so sure they will happen along sooner or later and you will find out much more

http://www.arthritiscare.org.uk/AboutArthritis/Conditions/Ankylosingspondylitis

in the meantime you could take a look at the info on this site l hope l have posted the link above.

Info on here is reputable 'googling' can be very hit and miss and scary so recomend you avoid doing this if you can x;)

The medications you will be prescribed if the diagnosis is confirmed will be the same as a lot of us on here are taking and are mentioned in the link above.

You take care

My best advice is that there is life after diagnosis, treatment options available and keep talking to others while you get your head around it all.

Love

Toni xx

Hibee

Hi Toni

Thanks for the warm welcome. I will have a look at the link you posted I know what you mean about searching google I also have generalized anxiety disorder so avoid searching my symptoms.

Thanks again and good to meet you.

Hibee

frogmorton

Good job you wont google then Hibee

and lovely to meet you x:-)

Look forward to seeing you post.

Love

Toni xx

Ps did you know that Nicky (ex character from coronation st has AS???)

dreamdaisy

Hello Hibee, it's nice to meet you although I am sorry you have had to find us. AS is quite common on here as it is a 'version' of inflammatory arthritis so you are not alone with it. It is a shock when you are first diagnosed but it is not (tho it might feel like it) the end of the world. The meds may well help to relieve and ease the symptoms, the physio is a good plan and we are always here to listen to any worries or fears. Keep yourself as active as you can but also listen to your body - if it's telling you you are tired then rest, don't force yourself to carry on with whatever you are doing. I wish you well. DD

Hibee

Hi DD

Thanks for the reply. It is good to know I am not on my own and I am glad I found this forum. As i mentioned in my first post I had reactive arthritis a few years ago which was really painful but seemed to clear up after treatment. It's the thought that this is a chronic condition that has got me down. Hopefully the Naproxen will help if not the rheumatologist said there are newer types of drugs which are effective and to exercise as much as I can. My main problem at the moment is pain in my feet and toes is this normal??

Toni

No I did not know that I had never heard of AS until monday but glad in a way that I now know what has been causing the pain.

Hibee

dreamdaisy

As my feet and toes are constantly in pain I would have to say yes, but I have psoriatic arthritis, plantar fascitis in my right heel (plus osteo in my knees and ankles) so I cannot comment on whether it is normal for AS. Keep a diary of pain levels and symptoms, what eases and aggravates matters, so that when you next see the rheumatologist he will have a better picture of how you are being affected byt this. DD

elnafinn

Hi Hibee

Welcome again - pleased to see that you posted on this zone. x;)

Diagnosis does come as a great shock, you are not alone there at all. At least you have found us lot and we shall help and support you as much as we can if you would like us to.

I have heard that people who have had reactive arthritis recover fully from the initial flare of symptoms like you did but studies have shown that some patients will develop symptoms again sometime later and back pain and arthritis are the ones that unfortunately most commonly reappear.

I hope your referral to a physio lead exercise class comes through quickly. My daughter attended a few sessions of those classes and found them beneficial. She now swims and does pilates to try to keep her lower back pain in order. (she does not have AS). She is 32 years old.

Look after yourself,

Elna x

Hibee

Thanks guys.

I think the HLA B27 gene is linked to a group of inflammatory arthritis. I did read that in some cases reactive arthritis can cause AS at a later date. It has been really helpful to read your comments.

I heard also that a starch free diet can help with the symptoms of AS?.

DD that is a good suggestion about a pain diary I will do that. The pain in my feet is bad at the moment especially in the heal and Achilles tendon. What is plantar fascitis? I find my feet go very red but are not warm which is a bit weird. Hopefully I will here back soon from the rheumatologist to confirm the diagnosis.

Thanks again

Hibee

dreamdaisy

Good question Hibee, I haven't a clue! I showed my rheumatologist where I was having the trouble and she said 'Plantar Fasciitis' but as the apppointment was about other stuff I forgot to pursue it further. I never google preferring to ask those who know about such matters, so I shall either raise it with my GP or the rheumatologist - whoever I see next! It is a common problem and I believe it is to do with the tightening of the calf and foot muscles - elna has done a very good reply about it (she always does very good replies) on kellerman's thread which I think is called Now Feet - or Feet Now - one of the two! It's on this page of the LWA forum. DD

Hibee

Hi

I will look the post up. Just received a letter from the consultant radiologist asking me to go for more x-rays on monday as he feels the ones taken are not sufficient enough to provide an adequate report to my doctor. He wants to take further or different views from the standard examination performed. He says at the end that this does not necessarily mean that there is anything wrong. Unfortunately I have generalized anxiety disorder so my anxiety is now high and my mind has gone in to over drive.

Hibee

dreamdaisy

He is doing exactly what he should to help determine exactly what is going on with you, so I think this is a good thing. Some forms of arthritis can be very hard to diagnose so the more detail he can glean the better, and the more detail you can give him the better too. Keeping a diary is a very useful exercise because you find yourself thinking 'I'll remember that.' but invariably one forgets! I hope you can settle your mind somehow, you take care please, and if it helps to talk to us then do just that. I'll be around until about 6.30pm. DD

Hibee

Thanks DD

Your right they just want to be clear in there diagnosis I suppose. He did mention on Monday that an mri or ultra sound may be asked for as these show more detail. My anxiety just plays with my mind.

Thanks again

Hibee

Ankyspond

Hi,
Don't post anymore but just put Christmas message on and seen your post so thought I would answer.

I am 43 and was diagnosed like you in the beginning with reactive arthritis and after a couple of years trying different meds and more tests they confirmed ankylosing Spondilitis at the age of 41. I have three teenage children and it has stopped me doing certain things like wearing heels, ten pin bowling, walking too much but there is also a lot I can do so please don't be too down. I tried lots of different meds but am now on Enbrel (anti TNF), methotrexate, cocodomol, naproxen and it manages the AS in my back and hips very well. Unfortunately I have also been diagnosed recently with fibromyalgia and am trying to deal with that. Swimming is good for AS and low impact exercise, I have tried the Margaret hills diet which is very extreme but some say low starch and carbs are good it's an individual thing I think. Have a look around on the AS website www.nass.org  also www.kickass.org both are specifically for AS and have lots if info.

Remember that each person is different and it may take time to get the meds right but hang in there, make adaptions that may help, get a blue badge anything that can help your life. I still work three days a week and have a pretty good life so chin up. If you want to ask anything else mail me a copy gets sent to my other email so I will see it. Good luck,  Anky xx

Hibee

Hi Anky

Thanks for replying to my post and I hope you have a good christmas. That is interesting to here you had reactive arthritis before AS. I think if my diagnoses in confirmed that the AS is a direct result from having RA.

Could I ask do you get pain in your feet? I have been getting really painful feet also pain at the end of my ribs.

Thanks again

Hibee

Ankyspond

Hi,

Yes I get pain I my toes, heels and all over feet I told the consultant it is like walking on broken bones. Nothing with my ribs though but fingers, elbows, wrists, neck. I also get very fatigued and have hot flushes (feels like being in Barbados). I did a pain chart which I use and share with many on here if you send me an email address which accepts attachments (use this email address to send the other and will send then delete it)I will send you it and you will see from my example where my pain in and how often. Xx