Could it be AS - at my wits end now :(

Bones, joints and muscles
1

Hi everyone

Im completely new to anything like this but just really need some advice...

I am 45 year old female, since my late teens I have suffered from what I always thought was sciatica, I would get bouts that could last weeks and although no proper diagnosis, DR agreed with me that was what it could be. Ive managed that through the years (and believe sometime the pain has been excrutiating) with various pain relief concoctions. I would also always have an aching back, and if stretch to far its feels like something in lower my back has been ripped. As a florist for nearly 30 years I put most of my aches and pains down to the job (floristry is a hard, cold and very physical job). 

Also at 19 I had my first bout of iritis, Ive had it four times now in all, the last time being in 2009. The eye doctor I saw though it would be a good idea for me to have a blood test as he said iritis is a sympton of something else.

So I had the blood test and it showed the HLA marker, I was then sent to a rheumatologist who took an xray, told me I was hyper mobile and that was it... 

To cut a long story short, I have been back and forwards to the docs since then. Various referels to physio who give me excercises (which I do do) and then dismiss me. My legs now hurt sooo much, all the time in fact, Im not unfit and not overweight (I did leave the florist 2 1/2 years ago) and although work from home, I walk the dog three miles every day. But this is more than aching legs - I cant get up the chair and as for getting up from the floor, forget it. I have to hold on when I go upstairs and lower back is constantly aching

My body feels like that of an old lady.

Incidenty I developed a frozen shoulder in January and a lump at the base of my neck which physio said was down to posture!!!

Was back at the docs today who finally said she would refer me again as its sounds very much like AS

Does anyone have any tips on how I can get them to take me seriously, I have only ever had one xray in 25 years but I just cant cope with my body feeling like that of 90 year old

Thank you anyone that reads this

2

It sounds like it is a.s I to am 45 and have been diagnosed with a.s my doctor spotted it when I was in hospital with a sereice case of eyeritise that was in 2005 I still have bad days but I was given humira to slow the process down and it helps with the pain sometimes my a.s is in my spine I take two different kinds of pain killers  four times a day to ease the pain if you ask your Dr where the nearest a.s clinic is he might refere you to them

3

Hi Jen. It does sound like AS. I am a 61 year old lady and it is all new to me too. I was diagnosed when I went to A&E about 4 weeks ago. I am also suffering with Cervical Spondylosis, that is at a really advanced stage. I'm hoping that I may be put forward for surgery for this. Anyway, to cut a long story short, every time there is a change in my CS, I have to go straight to A&E. They decided to do an xray on my lower back. When the doctor came to give me the results, he said I had AS. I asked him was there a mistake as I have CS, and he said no. Its definitely AS. I feel like a 90 year old. I have also just suffered with a herniated disc, and OMG!! The pain is excruciating. It started in my back and has slowly made its way down my left leg. I now cannot lift that leg up as the pain is so bad

4

Dear Jen

So sorry to read your post.  I went to a symposium run by arthritis research uk recently - and they are planning to issue new guidelines, removing rheumatoid factor from the diagnosis pathway - because it is SO unreliable.  

I was initially diagnosed with AS, but subsequently diagnosed with psoriatic arthropathy (and I didn't even know I had psoriasis!).  I felt a massive improvement with steroid injections into my sacroiliac and hip joints.  But then regressed again.  My life has been changed with methotrexate, sulphasalazine and vitamin d (D-Lux spray).  I am still weaning off the steroids, but will probably always have to take them twice a week to counter the fatigue after methotrexate days (new Danish research).  Get a referral back to a rheumatologist and talk through which arthropathy you have with someone who knows what they are doing.