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Hi I'm a woman with ankolysing spondylitis took 15 years to diagnose and I've had a awful time getting there . I have disc prolapse l234 and ls1 problems with my pelvis and hips plus sciatica . There are times over the past fifteen years when I thought I was mad as I had no inflammitory markers but the inflammation was evident . I've had so many procedures on the nerves of my lower back my bum feels like I've sat in nettles . I have to say I had a fantastic rheumatologist who didn't give up on me . I have been on humeria since February 2017 and feel fantastic . I would love to speak to others who have this poxy thing . I can't believe I've had this since early twenties and it reared its head when I was turning forty . My only concern is my children may have inherited the gene praying they haven't. I have found there seems to be very little information on this condition and not many people who have it who you can support or be supported by . I hope to increase my knowledge on this and hope I can encourage others.

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Warm greetings, Nessa28! 👋

Ankylosing Spondylitis-ers Cherie, Mark ( healthunlocked.com/nras/pos... ), & Katie ( healthunlocked.com/cure-art... ) may have supportive information that’ll be of interest? 🤔

And, for sciatica there’s more references, experiences, & fellow comrades in sciatic nerve pain ( healthunlocked.com/search/s... ) than you can shake a ‘pinched nerve’ at! 🙃 🤣 🤪

Wishing you the very best, Nessa28. 😌 🙏 You’ve found a ‘soft place 🌥⛅️ to land.’ ☺️ 🙏 🍀 🌺 🌞

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Hi Nessa,

All Rheumatoid Diseases can be difficult to diagnose for some.

You have had a pretty rough ride so far but perhaps some others who suffer the same RD can identify.

Hope you are soon feeling a lot better. :-)

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Thank you for your thoughts I must say that from April last year having been on humeria I have not looked back stuff is marvellous so apart from solpadol and the anti histamine as I seem to be allergic to everything life is great . I have just knackered my thumb joint but have been advised that I have to accept that thumbs toes ankles knees and elbows are going to go but keep positive which I am determined to do . It's just harder when you don't know other people to bounce off when you have a bad day but hopefully your forum is the answer to my prayers 👍🤗

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Hi I also have anklossing spondlittis I know how u feel also rheumatoidarthritis. My sons don't want the gene test it's the hlab27.I've had as from 2000 but rheumatoid said it's probley been there years as my back was always bad .cause was a nurse back then I put it down to lifting patients .my dad had as pm me any time amy

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Hi

Welcome, this is a great site with some really knowledgable people on who are more than happy to share experiences

I have AS too, like you I don’t know anyone in person who also has the condition. We all seem to take an age to be diagnosed and then go thru the mill with medication and finding what works.

I am on Benepali having been switched from Enbrel and sadly am really struggling with methotrexate recently being added into the mix to try and get the Benepali working again as they say I’ve started producing antibodies to the anti tnf which is why it’s stopped working putting me back to lots of pain and the most awful fatigue I have ever experienced. So the fight with AS continues for now...

take care Lisa

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Hi Lisa so sorry to hear about your antibodies and change of drugs . I was aware this can and does happen but it's rotten when it's you . I also have Ra and that's a pain as you get on top of one pain and a joint gives out mine is thumbs and big toes at present . I'm so glad I joined this site to have heard from two other people who have even heard of the condition let alone have it is fabulous just to have someone understand what you're talking about is great thank you . I do hope you start to improve soon and the tiredness abates x

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Hi Nessa

Thanks, 😊 hopefully things will get better soon, I always try to be positive with my AS and remember a lot of people have things a lot worse.

I am really struggling with a lot of pain in my thumbs and wrists as well as my feet too now so having read lots on here I am hoping that I get some benefit from the methotrexate with this cos they are becoming problematic too. It always seems we have to trade one pain for another somehow doesn’t it.

Did they diagnose u with RA first or has that come after the AS diagnosis? I ask cos my rheumy just refers to all other pain as peripheral AS and enthestis (sp) which is so general and has left me not knowing if there are treatment options to help or if I just keep using the oramorph when really bad pain wise but this doesn’t stop any damage being caused so it concerns me a bit.

Take care Lisa

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Hi Lisa I didn't know anything until last January when I got a firm diagnosis from the rheumatologist not helped that my bloods came back as zero negative but my X-rays showed changes in my sacroiliac joints and back as well as the normal prolapse I already knew about . He then put all the other pain as generalised the same as you have . It was only in November when I had a prescription review with my gp and she was arranging some physio that I was informed that I also have RA . I so agree with you about swapping pains I think my happiest moment was the diagnosis because prior to this I had had 15 years of being told the pain and tiredness was in my head and I truly don't know what I would have done without the support of my husband and my brilliant doctor who fought alongside me and thought outside the box . It is a lonely path to walk pain and can rob you if you let it . I had to give up work in October 2016 through the pain and mobility issues which broke my heart but now I can see it's been the right move at least when I can't move I'm not having to get up three hours earlier than I need to to get pain killers down and some movement in the joints . I hope you improve soon let me know I don't think I've talked about this so much in years 😂🤗

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Hi again 😊

I know what u mean I am the same I don’t really talk about it cos I figure no one can really understand how AS can be so variable day to day even hour to hour. It’s good to chat to people who really do get it.

It sounds like u have a good team around you which can make so much difference to how things go,

It must have been hard to give up work? How do you find it not having to do that in your day?

Mmmm I am seeing my rheumy next week so I need to get my self in order to try to get some clarity I think. 🤔

I am currently off sick from work because of all that’s going off thanks to AS but am having to acknowledge that I may have to have a career rethink cos I simply can’t seem to manage my job as a DC in the police because of the shifts and long hours. It’s not so bad when I am well (although I seem to work and rest to be ok for work without much else which isn’t fair on my other half) but when things are not so good it’s a nightmare. So know what u mean about having to plan Meds for working, that too can be a feit on its own 😳

Lisa

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Oh Lisa I feel for you I was working for NHS and trust me they were awful with putting you on stages which makes it so stressful when you don't know what's wrong but there is no support from your management . I felt I didn't have a choice and was under so much pressure I resigned in hindsight maybe I should have let them get rid of me . My only advice to you is to keep all documentation and be honest with yourself I didn't do this and regret it .

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That’s not good I would have hoped the NHS would be one of the best employers for illhealth. Shocking really. Isn’t hindsight a wonderful thing.

Work have been ok overall, I had a few issues last year after asking for a shift amendment so I didn’t finish as late when on afternoons under a reasonable adjustment. My DCI was an arse and sent me to OHU etc cos he couldn’t get his head round me having a condition that necessitates such a request but seem to cope ok most of the time. He wanted me to go for illhealth retirement or at least a marker that said I was no longer fit for my role.

OHU have been great and fully supported my request even saying they were surprised how well I did being at work like I was with so little support.

I have gone downhill a lot tho this last year so I may end up going down that road at some point.

With 20 years + of work life yet I am not ready to give it all up so shall keep fighting. 😊

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I so get where you're coming from I asked to reduce my hours was told the service couldn't support it . I felt totally isolated when I was off sick the nurses I worked with were fabulous but manager didn't contact me until she started to implement the stages of sickness and came to home with HR . OCH were fab but they were brilliant at returning to work but it was the fact that I was waiting for a consultant appointment that meant I could give no feedback to my manager my doctor helped but to be really honest with you I just felt a total burden and it was easier to walk away than fight as I had nothing left to fight anymore I was literally in a wheelchair Dec 2016 and it came from no where again in the July . I also think stress doesn't help I worried about how we would cope financially I was being unfair to my husband and kids and the stress at work . Finally it sort of got taken out of my hands yes it's hard financially as I have 15 years to go before retirement trying to get ESA was the most degrading experience of my life . But I'm here now and I'm going to enjoy what I can for as long as possible . If you need to talk I'm always here x

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It sounds like it’s worked out for you for the best of your health tho which is good. Must be hard to adapt to such a change tho?

That’s the thing isn’t it, the financial aspect is such that at this time I cannot afford to leave work. My salary is the safety net as my partner is self employed. With a big mortgage etc I just have to keep working for as long as I can. We are saving as much as we can as a buffer just in case I get really bad and do end up having to re think work. I am looking at asking for a reduction of hours on my return (if my employer will agree it) in the hope that I can pace better and be less stressed coz as u say stress is a major factor which doesn’t help us at all.

I have just applied for PIP and it felt like I was asking for something I shouldn’t have somehow because I still work but it would help in so many ways and take the pressure off my partner who does their best to help and support me whilst getting frustrated that I won’t give in to it all or stop fighting it 🤪

It’s always good to chat to people in a similar situation.

I have found as FB page Ankylosing Spondylitis Uk which also has a lot of nice people in the same boat, generally positive but occasionally need a shoulder or cheering up because of this damn disease.

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Keep your chin up hopefully they'll let you reduce your hours the stupid thing is when we're well we are amazing but a flair can just materialise and that's the bugger . I would love to work part time but I don't think any employer will take me now so I shall enjoy the dogs instead 😂🤗💐

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I don’t blame u, our two dogs 🐶 keep me smiling even on the most rubbish of days.

I think that is what’s so hard for people to get, I walked snowden last year and did the zip wire (albeit with morphine) but at the moment I can’t do very much even with that .. grrr as u say chins up and hopefully we will both have better times moving forward 😊

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How you feeling this week . A bit better I hope . Just thought I touch base with you x

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Hi,

Thanks for your message. 😊

I’m pretty much the same but trying to keep positive and remember all the good things in life. The hospital have upped my Methotrexate from next week so hoping that helps and I don’t suffer any side effects..

how are things with you?

Take Care

Lisa

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Hi Lisa all right I think lol humeria injection today which I've been counting down to . My hands and feet are so sore at the moment . There was a post yesterday about work and being retired due to ill health read it I thought of you . Isn't it surprising how many of us are in the same boat dragging yourself into work not looking after yourself properly as we are all slaves to money lol or keeping the roof over your head . I'm glad you're doing ok hope the increased dose helps . Keep in touch xx

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