A.S. Face 0573: Helen

So my story.  I was diagnosed on 31st July 2012 so only a couple of weeks ago so it’s still quite new and I’m still struggling to get my head round it. I’ve always had problems with my joints but it was always put down to hypermobility syndrome which runs in my family.  I had an A & E folder a couple of inches thick and all the staff knew my name.  I had pretty much everything x-rayed and wrapped at some point.  They discussed arthritis and growing pains for a while too.  Then I started getting tired and falling asleep in class.  This was put down to me having Chronic Fatigue, so I’d be about 11 then. I hated sports at school with a passion and yet was happy to be dancing, swimming, skiing, horse riding until I had to give them all up due to my dodgy ankles and knees.  At 13 I ripped the ligaments either side of my right knee and they never seemed to heal properly, to this day it bothers me in the winter, and to this day I do NOT know how I did it.  I grew up, lost weight, started gym and swimming at secondary school, and actually had a fairly problem free couple of years between 14-17 where I lost all my puppy fat, went out and danced the night away and still got up to do whatever the next day.  I did need 9 hours sleep a night, missed school quite a lot because I couldn’t drag myself out of bed through fatigue, had a nap between getting home from school and doing anything else, and would often go for a nap at school!  That was problem free so I suppose not that normal after all.  The invitations to go anywhere tailed off because I never went, luckily my best friend (still my best friend now) stuck by me even if she didn’t understand it, and dragged me out whenever possible.
At 16 I lost my best friend overnight to meningitis. It seemed to kick off something in my body and I started to feel the strain more. I missed more school.  At 18 I went downhill rapidly and was really ill.  I missed school for months and had to go back in to do my exams.  Luckily I’m bright and managed to still do pretty well, but I had to type them all because I couldn’t hold a pen. I struggle to hold a pen at my worst and can’t write. I had to take breaks during the exams.  The teacher who was in the room with me and a couple of students told me on results day that I looked so dreadful she honestly didn’t think I’d manage to finish the papers a lot of the time.  In that 6 months I was really ill I put on 6 stone.  I met my soon to be husband on the internet, I went to university. I ended up caring for my mother who trapped a nerve in her shoulder and couldn’t drive, and for my sister who was a championship ice skater and had to be at the ice rink for 4.30 often, I had to take her, and take over caring for my grandparents.  University suffered but it wasn’t really surprising.
Life went on, then in January 2005 I was diagnosed with Polycystic  Ovary Syndrome and told if I wanted children I needed to start trying for them then because the longer I left it the lower my chances of conceiving.  All I have EVER wanted was a big family with lots of children and I love babies. We started trying, decided to ignore the fact that we couldn’t afford it because frankly we couldn’t afford not to.  We got married in the November of 2005. By this time I was obviously working full time but constantly getting infections and boil/abscesses.  I had double ear infections in each ear, constant cystitis.  I was always tired.  Because I was so tired we ended up eating rubbish and the house was a tip.  It couldn’t be helped I just couldn’t do any more.  By 2006 I’d given up work to go back  to university.  My health improved and I could sleep in on days when I needed to.  In November 2006 I found I was pregnant.  I was thrilled, we just had to get through the high miscarriage rate that PCOS carries with it and then we’d be sorted, right?  Wrong.  I started getting horrendous pains in my groin.  A friend of mine convinced me to see the Dr who said it was Symphysis Pubis Disorder, now called Pelvic Girdle Pain I believe. I had a brace, could barely walk, couldn’t sit, couldn’t lie down, it was awful (lol if only I knew this was going to be my life now!).  I was reassured it would fix itself after delivery so we carried on.  My son was born 4 weeks prem in less than 12 hours, which for a first baby was quick.  Because of problems experienced during delivery I remember (through the entenox haze) that the midwives were pulling my legs back and wouldn’t let me turn over to where I was more comfortable.  From that moment on my right hip felt wrong.  I eventually got referred to a specialist who told me it was all because I was hypermobile (I’d also had other things go on that were related and found it was very common for pregnancy hormones to make HMS rear it’s ugly head even after you think you’ve grown out of it!).  The specialist (apart from being a condescending so and so) told me I needed physio because I wasn’t in alignment.  Go away.  Went to see physio who was amazing.  She thought that what had happened was that pregnancy had loosened everything up and when it had all tightened back up it felt to her as if things were out of line as they’d gone back in.  Lots of superduper tens stuff later and a fair bit of manipulation and massage and I felt much better, she jokingly told me to get pregnant again then when it all got loose we could get it back in the right position….
So I did.  18 months after my first son was born I was pregnant again.  I dreaded it but apart from not being able to go up and downstairs, walk, drive, push a trolley, etc etc…it wasn’t too bad.  I was more active because I had a toddler running round.  My husband was working 18 hour days, 7 days a week for months, we moved house (well I moved house, he worked).  Every night I longed for my wonderful son to go to bed so I could take painkillers and lie down and be pain free for just a bit.  We had a dog so I was still dog walking and moving, although by the time I was VERY pregnant my dog went to stay with my parents because I couldn’t handle her.  So I carried on, had a beautiful baby girl and waited for the back ache to disappear…it did but the SPD twinges carried on.  It never seemed to completely leave me, was shattered all the time but just put it down to having a new baby and a toddler at home.  However I was still ok putting both kids in a double buggy and pushing them up the hill to the shops, so it can’t have been that bad.
Fast forward a few months and our landlord sold our house so we had to move.  It was immensely stressful and the outcome was that me and the kids went to live with my parents for a year whilst we looked for a new house.  It was in parts brilliant because I had both parents and my sister on hand to help me with the kids, and in part horrendous because who wants to go back to living in someone else’s house?  Especially when my mother and sister fight all the time. I remember one day standing outside having a cigarette and realising that my hip hurt.  And then my heel.  It carried on so I went to see the GPs who were brilliant.  We tried physio but it made it worse, I was referred about my heel and they found a heel spur on the xray and sent me off with an insole for my shoe.  I was continually in and out trying to get pain relief for my hips/back/pelvis (SI joints actually) and my heel.  Eventually after seeing the deterioration in my back the physio asked if anyone knew what they were really treating because nobody had bothered to find out, and had always just assumed it was down to the Hypermobility and pregnancy.  I was referred to a spine specialist who took the first MRI and told me that there was no way it could be that my hips were moving whatever it felt like.  The MRI came back and showed some changes which he thought were part of the group of conditions.  He ordered a load of blood tests through my GP and asked that I be referred to a Rheumatologist to confirm which condition I had but warned that I would probably need biologicals to treat it and if I wanted any more children I had better get a move on because the two did not go together.  In the good news though my spine looked clear.
Roll on a couple more months and I see the Rheummy, I’d looked him up once I got his name and was happy that he was good.  We went in and it was rubbish the first time because he didn’t have a copy of the scans, though he diagnosed me with Fibramyalgia and said he’d write when he’d seen the MRI.  He did write, and said his radiologist thought they were old changes and that was that, but if I wasn’t happy he’d see me again.  I was gutted that things had seemed to stall at this point and my husband and I decided it really wasn’t good enough that they were “old changes” if nobody knew what they were and what had caused them and if they’d come back.  At 28 I wasn’t happy with being told to go and carry on with painkillers with no further investigations as to what it was.  So off we went to see him again, with a list of questions.  This time we were better prepared and I was also desperate for an answer.  I remember telling him that I was used to pain, I’ve dislocated joints and partially dislocated things on quite a frequent basis, I was used to being in pain, but what I was feeling in my back was beyond stupid and ended up in tears which is not like me at all.  He agreed to run some more detailed MRIs and test my Vitamin D levels.  He warned me that the chances were they would never know why I was in pain and I should just accept that if it came to it…I had the detailed MRI and received a letter in Doctor Speak.  I obviously googled the terms he’d used “Bone marrow oedema” and a couple of others, but decided that I’d wait and see what he said rather than scare myself.
So yet again we were back at the hospital.  We saw a member of his team and we both thought “oh no” when it looked like he was going to be useless…he was great. He thought I’d been put on the wrong list and so brought the main Consultant in to see us.  It was definitely Ankylosing Spondylitis…what did I want to do?  I had a strong case for starting biologicals BUT I wanted another baby.  After explaining myself so many times I finally managed to articulate that AS had already taken so much from me that it was NOT going to win and take another baby away too, but I’d compromise, I’d only try for one more not two! If I didn’t have PCOS I would have waited but at 28 my clock is ticking and I can’t wait any longer.  I can cope with pain but if I waited for a few more years and found that I’d lost all remnants of fertility then I’d be devastated, it’s a toss up between what will affect me most, what will I regret more?  Being in pain for an extra couple of years or not having a much wanted 3rd baby?
So that’s where we are right now, in a battle with Doctors about what painkillers I can take, a battle to get a referral to pain clinic, an every day battle to stay happy so my kids don’t suffer, they know I’ve got a poorly back and every time I’ve been to the hospital they ask if it’s been made better yet. It’s very sad to tell them that it’s never going to be better, but they don’t understand that yet.
I’m still trying to get my head round what this means to me, I’m aware that I’m a lot better off than many on here and I can only hope I stay that way.  I did have a cry last night in bed because it’s such a scary thing to contemplate. At worst it could be a whole host of misery, at best a lifetime of pain.  For the first time ever I’ve been thinking about my position on suicide, not for now, for much later, but I’m not going down that path and trying to keep it out of mind.   I’m not back at the hospital for another 6 months, I’ve just got to hurry up and have a baby so I can get anti-TNFs and hopefully stop it.  Just the past week my neck and shoulders have been catching with nerve pain and this morning I’ve woken up and they’re all stiff.  I’m fighting the rising panic that this is going to be my next battle and that maybe I haven’t got away quite as scot free as I thought I had.  When the kids go back to school after the holiday I’m going to start swimming again, and hydrotherapy, and if I’m feeling brave pilates, and just try and stay as active as possible.  I can still touch my toes (after lunchtime!) and I’m hoping that from what I’ve read the hypermobility has actually kept the worst of the AS away for now.  I don’t seem to have any other associated problems either to the point where I was actually wondering whether the Rheummy was right the other night but then they wouldn’t be trying to get me on Enbrel if they weren’t sure…and it does fit.  I’ve had 4 virtually pain free days after the morning bits done, and yet today I’m back to being in pain and stiff.
So that’s me, the story so far, sorry it’s so long!
Helen
England, United Kingdom
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7 Responses to “A.S. Face 0573: Helen”

  1. Keep moving Helen, even through the pain.. dont let your joints fuse up!!!! We all know how you feel, we’ve been there or will be there. AS is hard to deal with but you will be better off if you keep moving. I hope you get some pain relief. Im on Humira, Tetrazepam and Tiladin.. my spine is fused and for years didnt get the right therapy so Im more or less screwed.. you have a great chance at keeping ahead here. take care and dont think twice about asking lots of questions or just talking to us.. we are here for eachother in our groups. hugs from Germany Sally

  2. Thank you for sharing your story! I can totally understand what you are going through. I was just diagnosed in November, though fortunately I am done having children. I have 3 kids, ages 11, 3, and 2, and I am positive that I cannot handle another pregnancy plus more sleepless nights! However, even had I been diagnosed when we were trying to conceive our second child, I still would have chosen to continue trying. You will never regret having children, but you may someday regret not having another baby. Do not let this disease stop you, especially if you feel that you could physically handle another pregnancy and taking care of a baby. Unfortunately I am far past that point, even at only 30 years old. On a side note, though, I have heard of other women continuing Enbrel through pregnancy. Also, are you diabetic as a result of the PCOS? If not, there are other ways that you can manage the pain through your pregnancy, including a low-dose Prednisone. In any case, I am terribly sorry that you are joining the ranks of those of us with this terrible disease. I have heard that there are ways to manage it, though I am still trying to figure out how. I have just started Remicade 2 weeks ago, and I am praying that this is the miracle drug I am hoping for. I am also practicing the anti-inflammatory diet to see if I can improve my symptoms through dietary changes. Eventually I would like to add in some exercise, which is difficult to do with 3 kids around.

  3. Welcome to our club Helen. A month ago you didn’t know, and now you’ve found the place where you’re gonna find out (among other great AS websites). AS is a constant presence, but that also helps us to “get used to” it. On FACE’s, you’re gonna see examples, real examples, of how people “mentally” deal with “getting used to it.” Telling us about it is the first step, feels good don’t it, now witnessing all the hope, optimism, and human spirit is the next step.

  4. Hi Helen! I just wanted to thank you for sharing your story. I know how hard it is, soon after an AS diagnosis, & it takes a lot of courage & strength to share your story. You are an inspiration to so many newly diagnosed spoonies (www.butyoudontlooksick.com read The Spoon Theory, if you haven’t already, I think you will really “get it” & enjoy it). You have been through so much, & we all understand, & can relate to a lot of the things you talk about. I pray that you can have a third child. I can see in your writing how important your children are to you. I also pray that once you start a biologic medicine, it will give you a better quality of life, & will prevent your AS from getting any worse. I wish you all the best, Helen. Stay strong & take care.

  5. Welcome to the group, Helen! After reading your story, I can see that you are a strong person, and you are not going to let A.S. get the best of you! Best wishes to you and your family! Stephania/Face #445

  6. Dear Helen,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

  7. Dear Helen,
    This is important to me
    I am sorry for what you are going through and hate to bother you. I’m really touched with your story and glad that people are speaking out and giving awareness to someone like me. I have never heard about this. I hate to do this since my hope is that all this may be a misunderstanding and not someone using your profile towards there advantage. Someone has maybe been pretending to be you and using your photo as there profile. I know who he/she maybe and wanted to make you aware of this. Nothing bothers me more than people who have to sneak around and stalk people while they steal someone else’s life and create it into something so terrible. Please contact me if you read this and hope to straighten this out. This isn’t fair to anyone. Especially you. Stay strong.

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