The Start of My Journey

By SuzyQ22

2 min read

Hi, as I am fairly new to the group I thought I would share my story as to when I got diagnosed with AS.

So here goes!

Diagnosed with ankylosing spondylitis

I was 15 years old and very active in gymnastics, dance, running, and the gym at school. I think to be honest looking back my symptoms started at a much younger age as I used to complain of hip pain a lot which was like sciatica pain. But after many visits to the doctors, they just brushed it off as growing pains. Which to me is quite laughable now seeing as I didn’t grow very quickly and I am now an adult woman just shy of 5ft.

Anyway, I was doing so much exercise at school, I think partly as a stress release “ not going to bore you all with my childhood “ but my parents were sadly going through a messy breakup and the exercise I was doing gave me a massive relief and kept myself busy and overall I felt happy.

Awful back pain

So, when I woke one day with awful back pain I thought I had pulled all the muscles in my back, it hurt to sneeze, cough and just any slight movement was agony. After a few weeks of being in this pain and taking NSAIDs every day my mum took me to see the local G.P who was unfortunately very unhelpful!

She seem to be more worried about my petite size which again is madness when my dear mum is only 4ft 10, my dad was under 6ft, and my older sister is 5ft 2. So, we are a small family and unless I was going in for Britain’s top model (lol which I wasn’t) being small wasn’t really a concern of mine.

She referred me to the hospital and luckily I saw a really lovely and helpful doctor who was straight away concerned about my back pain and by this point my massive, swollen knee too that I was hobbling around on.

Blood work and imaging scans

So he referred me to see the rheumatologist who again was very helpful and did my blood, X-rays and at some point arranged for my knee to be drained which I remember was a huge relief when I could walk more freely again.

The blood work showed that I was HLA-B27 positive and X-rays that I had inflammation around my spine. I was given NSAIDs, to begin with, and over the years I have gone through many more brands, steroid injections, and now on and off oral steroids which I love as they work wonders for me even on a very small dose. But I have been told that I can not take them forever so my new journey begins with trying a biologic.

I still try to stay fairly fit with Pilates, swimming, and eating a healthy balanced diet but the AS has become more troublesome with more flare-ups. I am praying the biologics will help and that I will have fewer flare-ups in the long.

You are not alone!

Thank you if you decide to read my story. I will continue reading others and I am so grateful I found this group where people can share their experiences.

Thanks

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SuzyQ22 Member
<inline-mention username="James Hollens" user-id="2386640"/> No thank you for letting us know about it and lol you did even better to do it so late even with a coffee to help you ! I defiantly would of gotten myself in a muddle at that time of night lol . Yes I totally agree ! Hopefully more doctors and health care workers will become more aware of these conditions happening in young people too . There needs to be a decent amount of support so it’s really good you are doing what you do by speaking out . I’m sure many other people will be grateful for that . Wishing you well .
SuzyQ22 Member
<inline-mention username="James Hollens" user-id="2386640"/> Hey I got some quiet time to listen to the radio interview and it was brilliant , well done !! I thought you did really well and it sounded very clear . I love that you spoke clearly and answered all the questions really well. If it were me I would of sounded all flappy and I start to go on a waffle lol ! It’s such a positive thing to do and hopefully lots of people that are struggling with similar things will feel more comfortable to come and and talk about it too . Crazy how they misdiagnosed you so many times as well ! Living with that pain for so long and not knowing why plus with no proper medication to help is awful . I guess like you said on the interview they don’t expect young people to get these things. But hopefully the doctors etc will start to recognise that young people do get autoimmune conditions and they will start to look into it more carefully and quicker too . I hope you had a good day and are feeling well . 
1. James Hollens Moderator & Contributor
 <inline-mention username="SuzyQ22" user-id="4536537"/> Thank you so much for listening, I'm so glad that you liked it and didn't think it was a total waste of your time haha! I am surprised that I didn't make a pig's ear of it too as it was at midnight, I had to have a late night coffee to keep me up and focused and it did the trick (although it was definitely a late bedtime after!) I know it did get pretty ridiculous but I think it's a problem most younger people with these conditions face - even the doctors assume we are too young for arthritis some of the time! Hopefully the more it is spoken about the more normal it will seem and moving forward people will get their diagnosis earlier! Wishing you all the best, James (Community Member)
SuzyQ22 Member
<inline-mention username="James Hollens" user-id="2386640"/> Ah that’s brilliant I’m so pleased to hear it went well and thank you for sending the link. I will defiantly have a listen later when I have a quiet house and moment . That’s such a shame the pool near you closed , I hope you find another not too far away . Let me know how you get on if you join one and I hope you find it helps as much as I do . Have a lovely weekend too !! Wishing you well . 
1. James Hollens Moderator & Contributor
 <inline-mention username="SuzyQ22" user-id="4536537"/> Thank you so much! It did however reveal that the signal in my flat is awful so just a heads up that my sound quality is not the cleanest haha! Hopefully you don't think it is a complete waste of time listening to it when you get around to it haha! I hope I'm able to track one down soon - I am hoping that it shouldn't be too hard to find in London but I guess we will have to see! Best wishes, James (Community Member)
SuzyQ22 Member
<inline-mention username="James Hollens" user-id="2386640"/> I havnt much planed for the weekend and then next week is half term week so I’ll be thinking of things to do and places to visit that week . Hope you have a good one and good luck in the interview let us know how it goes . Healing thoughts to you . 
1. James Hollens Moderator & Contributor
 <inline-mention username="SuzyQ22" user-id="4536537"/> Thank you so much, the interview went really well (I hope at least haha). I'll paste in the link to it at the end of this message if you want to check it out. I think I come on the show at around 1.36.30 if you wanted to skip to that! I know there was a swimming pool like 5 minutes from my house but it closed during COVID, so I'll have to search a bit further out. Ooh that sounds cool, I hope you find some exciting plans for that and enjoy your chilled weekend! All the best, James (Community Member) https://www.bbc.co.uk/programmes/p0c4r7gh
SuzyQ22 Member
<inline-mention username="James Hollens" user-id="2386640"/> oh wow that sounds really interesting and exciting , I hope the interview goes really well . Is there’s a way we can get to hear the interview ? I’m not tech at all but if you can record it or something ? Yes give the swim etc a look , hopefully you can find somewhere not too far from you to join so you could make it a regular thing . That’s good to hear once I get hold of the company to arrange the first delivery after that it will be easier for future delivery’s
SuzyQ22 Member
<inline-mention username="James Hollens" user-id="2386640"/> lol yes I took a small case with me to London when I went for my bday weekend and just dragging that up and down the stairs in the underground nearly killed me off ha ha ! So defiantly no good taking anything heavy when moving around . I havnt tried aqua aerobics but they do a class at the gym I go to , it’s always fully booked though when I have tried to get booked in . It’s definitely something I’d like to try and I reckon it would be good for A.S too. The company that I have been trying to get my delivery booked is called sciensus , is that the same as yours ? It’s good how they just do it for you and then you don’t need to worry about booking anything . Have you any plans for the weekend coming ? Hope you had a good day . 
1. James Hollens Moderator & Contributor
 <inline-mention username="SuzyQ22" user-id="4536537"/> Oh no, I bet that was a nightmare on the tube - well done for surviving that weekend haha! Oh wow it must be very popular then! I think I will definitely give that a try too, I might see if any of the pools near me have that as an option too and I can give both that and actual swimming a go again! Yes that's the same one that I use, they're pretty good to be honest they are always restocking me early so there has never been any worries of running out so far! It is pretty convenient that they do that, although sometimes I only get a days warning that they are coming and have to shift my plans about! I hope you are able to get through to them soon and get started on Enbrel! Have a wonderful day, James (Community Member)
2. James Hollens Moderator & Contributor
 <inline-mention username="James Hollens" user-id="2386640"/> oh and no weekend plans just yet! I'm actually going to do a live interview on BBC Midlands Radio this evening about chronic illness (even though I've never set foot in the midlands haha) which is pretty exciting but after that I have nothing planned! What about you? All the best, James (Community Member)
SuzyQ22 Member
<inline-mention username="James Hollens" user-id="2386640"/> That’s so great you really loved it and your friends wedding was amazing too . Really cool how you did loads of sight seeing too and yeh deffo don’t want to be carrying a heavy case around . I love beach days but good to mix it up with seeing some of the culture . I hope you find a place near you to go swimming and if you do I hope you find it really helps . I love being in water, it’s like the pain eases so much . I try not to over do the swimming incase the next day I ache too much so if you can find a place with a sauna or jacuzzi too that is my fav part and the warmth helps me loads . Thank you I try my best in parenting lol but I do get my days when I find it over whelming with having A.S too , they are kind boys so I’m lucky there . I feel a bit better today too after a swim thanks but can you believe I had a miss call I think from the delivery company when I was swimming . I have contacted them but I have to wait for someone to ring me back again . I’m sure once I get started I can just do the delivery’s on the app , is that what you do ? Hopefully I can get the medication sorted tomorrow for a date soon . I hope you had a lovely day . Blessings to you . 
1. James Hollens Moderator & Contributor
 <inline-mention username="SuzyQ22" user-id="4536537"/> Thank you so much! I think a big case would have definitely added some stress to it all so glad I opted for the cheap option and just brought hand luggage haha. Maybe my next trip can have a bit of beach to make up for it! That sounds like a sensible thing to not over do it as well - don't want to cancel out all the benefits! Have you ever done any aqua aerobics before? I hear they are meant to be pretty good for AS! I can imagine it is very tough - I struggle looking after myself some days so I have a lot of respect for what you are able to do! That's great that the swimming helped but so annoying that they called then again! It often feels like a game of cat and mouse with these things! Yes I have an app for my deliveries but I actually haven't booked any on it myself yet. For some reason they have just been booking them in for me and texting me when they are delivering! Which service are they going to be using for yours? I hope that you can get through to them soon and get it all sorted! Hope you are having a wonderful day, James (Community Member)
SuzyQ22 Member
<inline-mention username="James Hollens" user-id="2386640"/> Hey how was your holiday in Mexico ? I hope you had a amazing time and your friends enjoyed their wedding too . Well done for travelling so light lol I honestly need one small case just for all my hair products and toiletries ha ha ! With the swimming I find it so helpful and I just keep it at a gentle swim . I often do my stretches in the pool too for my hips and then go in the sauna or jacuzzi after . Did you do much swimming in Mexico ? i love swimming in the sea just a shame our sea here is so cold and murky ! Thank you , I try and do as much as I can with my children but this last weekend I drove to my mums and skipped on a bike ride because my knee is becoming painful and a little swollen again . So I felt a bit gutted that I had to tell them that a bike ride was out of the question . Still they were understanding about it to a point and then got spoilt at nannys lol so were happy ! I have been ringing up to arrange my first delivery of the benepali now I have nearly finished some antibiotics I have been on . They have told me someone will ring me back but they only ring once so this morning I missed the called as was on the school run and they haven't rang back yet . I will try them again later as I am starting to struggle a bit more now . Hope you are feeling well and adjusting to being back home what with the time difference etc . Love and blessings to you . 
1. James Hollens Moderator & Contributor
 <inline-mention username="SuzyQ22" user-id="4536537"/> It was incredible, I really fell in love with the country and the wedding was amazing! It was actually the first one that I have been to as an adult haha. I would normally be the same but we were travelling about so much I didn't want to overdo it by hurling a suitcase across the country. So I had to make do with hair products under 50ml! That sounds great, I definitely need to get into that myself! I was putting it off because of the pandemic but I think the trip has given me confidence to go near people again so I might look up pools in my area. Unfortunately I didn't get a chance to do any swimming - we actually stayed at a beach town for a couple days and didn't even get to see the beach as we had so much already planned haha. Oh no! Sorry to hear that, how is it feeling now? That's great that your kids were so understanding though - clearly done a good job raising them! That always happens to me, I swear they love calling when you are the most busy! I hope you get a call back to sort it all out soon! Sending love, James (Community Member)
SuzyQ22 Member
<inline-mention username="Nadine Cruz" user-id="4610320"/> Hey , thank you so much for replying to my story . So sorry to hear you go diagnosed at a early age too and underwent jaw surgery . How did that go for you ? I have in the past had A.S inflammation in my jaw and it was awful ! The physio gave me a tense machine to use which I think from memory did help . Fortunately I havnt had that kind of pain for years but my jaw is a little stiff from time to time . True it really is like a roller coster , some days I feel good and have good energy levels and then today I feel so tired like everything feels an effort . But I did go for a bike ride yesterday “ not that far “ still maybe it was a bit too much for me . Please share on the surgery you had when you get the chance . Also what do you take medication wise to help with A.S ? Thank you and hope you having a lovely weekend . Take care . Blessings.
Nadine Cruz Member
<inline-mention username="SuzyQ22" user-id="4536537"/> Hey There Suzy, I'm new here also thank you for sharing your story i hope that you have found ways to manage as i know this journey can be a roller coaster and difficult to manage my symptoms also started as a teen but with my jaw i underwent double jaw surgery that i will share in a post soon. wishing you all the best Nadine (Team Member)
SuzyQ22 Member
<inline-mention username="James Hollens" user-id="2386640"/> sorry it lost my message again ! Running a marathon was meant to say. That’s cool you have a type of gym set up at home , saves on pricy memberships too . I only pay for swim at my gym but it would be costly otherwise with a whole gym package . Then I do a separate Pilate class with a lady locally and I love doing that . Sounds like you keep active with a good balance . It’s trying to find things we enjoy but with out causing a flare up or something . Hope you having a lovely weekend and have got your holiday items sorted and packed . I love that bit but always pack far too much that I know I won’t wear lol . Take care blessings to you .
1. James Hollens Moderator & Contributor
 <inline-mention username="SuzyQ22" user-id="4536537"/> Absolutely, I spent a long time thinking I was the only young person with a condition like this, so seeing other people with similar stories definitely made me feel less alone. Haha if only there was something I could use my double arthritis points on! Thank you ever so much, I hope that your medication does the same for you! How is that going so far? I can imagine its pretty exhausting chasing after them - hats off to you for finding the energy to be a great mum and fight this condition at the same time! Very true, I had a look online at local gym prices and I am sure they have all doubled since the start of COVID! So I will definitely be sticking to my living room for now haha. So glad to hear that you found ways of keeping active that you enjoy too! I've been meaning to get into swimming myself, do you find it helps your condition a lot? Haha thank you very much, I actually didn't pay for check in luggage so my problems were the actual opposite, but it all worked out in the end! Sending love and positive vibes, James (Community Member)
SuzyQ22 Member
<inline-mention username="James Hollens" user-id="2386640"/> Yes I agree, I have enjoyed reading other peoples stories too and grateful for others sharing . Like you say it brings a little comfort knowing that others can understand how we may feel and the kind of pain we deal with . Ha ha I think you can claim more ratings for having both R.A and A.S . Yes could be so that you did have both but the A.S took longer to be diagnosed . I am so glad you have found a medication that helps you so far and pray this carries on helping you too . lol yeh when the boys are off it certainly feels like i am running
SuzyQ22 Member
<inline-mention username="James Hollens" user-id="2386640"/> Thank you so much for taking the time to read it and for replying too . I do feel like we are all fighters living with this condition and any chronic illness, it’s almost like it becomes built in us for a way in which we can survive . I think as the years have gone on I have become more excepting of it and try not to let it get me down. Poor you though as I was meant to say in a previous message that you said you have been diagnosed with R.A as well so you are a even stronger fighter ! Did you get diagnosed at the same time as the A.S or at different times ? I wondered if I had R.A at the time because of my swollen knee and my auntie by my mums bothers marriage so not blood related , has R.A but my knee is the only thing that swells and she has problems in her hands too . I feel lucky I got help in the end and since then the physio and rheumatology Deparment have been really great and supportive . Sadly I don’t do any gymnastics now and to be honest after I got diagnosed I almost felt too scared to carry on incase I caused another flare up . So I just stopped but carried on with other hobbies I felt I would be ok with . Do you play any sports or go to a gym ? I just joined back at my local gym but just to carrying on with swimming . I think I need to do some cardio but then my children are like having a work ha ha ! They would have me running around a park all day playing football so I’m glad they are both boys and I can send them to play it together lol . Blessings to you . 
1. James Hollens Moderator & Contributor
 Hi <inline-mention username="SuzyQ22" user-id="4536537"/> , No thank you for speaking out, I think it is amazing when people speak out about their stories as it helps show others in the same situation that they aren't alone! I definitely agree, sometimes I wonder whether AS choses the strongest of us to attack, or whether it is the AS that turns us that way. Maybe it is a combination of the two! Haha thank you, although I wouldn't claim any more ratings for doubling up on the conditions. They were diagnosed 3 years apart, RA came 3 years before AS but I wonder if I always had them both and it just took a bit longer for the AS to make itself more obvious to the doctors. I'm so glad that you were able to find such a supportive network of doctors and I hope they continue to operate this way! I hear you, I had the same situation with football as I was scared that a bad tackle may lead to something more serious now. I still lift weights but since COVID I have been a bit scared to go to an actual gym so I have set up somewhat of a prison gym set up in my flat that I have been using since haha. How has the gymming / swimming been going? I can imagine every day of the Easter holidays must have felt like a marathon haha. Wishing you all the best, James (Community Member)
James Hollens Moderator & Contributor
Hi <inline-mention username="SuzyQ22" user-id="4536537"/> , Thank you for being brave enough to share your story and I am so sorry to hear that it was a bit of a rocky road for you. I can't imagine how tough that must have been to deal with at such a young age. I thought I was young when I was diagnosed at 21, but having to deal with that at school must have been something else. So hats off to you for being such a strong fighter! That is crazy how they chose to focus on height being the issue! But I am I am glad that the rheumatologist was so helpful and got to the bottom of it all. I really hope that you feel a big difference when you finally get your hands on those biologics! It's so great that you still keep so active and healthy. Have you been able to do any gymnastics since your schooldays? Sending positive vibes, James (Community Member)
Lisa Marie Basile Moderator & Contributor
Hi Suzy! (At least I think your name is Suzy, judging by your username!) Thank you so much for sharing your story. I’m glad that you found this community, because having ankylosing spondylitis can really make you feel alone sometimes…so it’s great that you felt comfortable sharing here! There are so many awesome people here that can help you along with your journey. I totally understand what you mean. I lived many years of my life feeling totally great. I’ve never had surgery, never got sick, and was generally pretty proud of the fact that I was healthy. I remember always being capable of doing everything. I could move freely and nothing ever hurt. I didn’t even understand what arthritis could be! I couldn’t even understand how people had invisible pain! I’m sorry that your original doctor wasn’t very caring, and that he was more focused on your size. I’ve heard from a lot of people that doctors get caught up on size, rather than the actual issue. I think more and more of us are speaking out, so hopefully doctors are catching up! It’s great that you had a rheumatologist who really looked into things for you and helped with pain medication. I’m glad to hear that you’re starting Biologics. I really hope that it helps you! Sometimes it takes a while to work, but I hope that won’t be the case for you. I am going to be starting my second biologic this year. Remember to keep moving, keep eating well, and keep treating your body with love. Wishing you the best! 
1. SuzyQ22 Member
 <inline-mention username="Lisa Marie Basile" user-id="2390344"/> Hi thank you so much for replying to my story. Yes I feel lucky that I at least found a sympathetic and good rheumatologist who could help me to get diagnosed quickly . As I know for some that sadly they live with this awful pain for ages but not knowing why they have it and then not knowing any possible ways to help cope with it . Once I could research A.S and I found out different ways in which may help with the pain and inflammation I felt like I was doing something to at least help my self. Plus knowing that we are not alone living with A.S is some kind of comfort . Feeling like others with this condition can understand what we experience . As like you say it can seem a invisible pain so people don’t always realise that we are in pain . I hope starting your second biologic helps you too . Which one have you tried already?? what will the second one be ?? I feel a little nervous but reassured to see that lots of people on here use them and get a good results from them too. Yes I stay moving with Pilates and swimming ! They help loads and like you say remembering to send love to my body and thanks to each day that I stay moving. Blessings to you and wishing you the best .