Hello I am new, do I have Ankyolising spondilitus?

KittyKate

Hello, I have come here in search of some advice. This might get a bit long.

I have been ill since february and been getting worse. Here is a bit of background info,

I am 30 years old, I Was plagued with left shoulder pain, trapped nerve pain in the shoulder and upper back pain in my late teens and early 20's. Had x rays which showed nothing and had physio which did help. I was unable to raise my left shoulder above chest level but the physio helped and the arm went back to normal. I put the upper back pain down to having large boobs! I eventually got used to it and was able to ignore it. I still have it now and for years have had a constant need to crick the left shoulder. I do it without thinking. My shoulder and upper back have always been so clicky.

The upper back pain just became part of my life and it really didnt bother me much for a long time.

I also had a lot of trouble with extreme tiredness, restless legs and sleep paralisys since about the age of 18/19 and was diagnosed with CFS in 2004.

Then when I was pregnant with my 1st child Emily in 2005 I started feeling better. For the 1st time in so many years I was free of CFS. But this is when the real problems started. At the time I didnt realise it was going to become the bain of my existance. I started getting pain in my lower back and hips and niggling sciatic pain. Then my hips started clicking all day. I'd never had clicky hips or stiffness there before unless I was ill (stiffened up every time I got a bug) and apart from the stiff shoulder I had always been a very flexible person. I could even do the splits and lift my leg above my head. I could kick very high, do cartwheels, jump into splits, and bend backwards to put my hands on the floor. Also, not only could I touch my toes but I could put my hands flat on the floor. People were always impressed with my bendiness and strong legs. But now all of a sudden I was getting stiff. The doctor diagnosed symphisis pubis dysfunction and I was given physio and told that SPD disapears after pregnancy. Well I had the baby and waited for the SPD to disapear but it never really went. I wasn't as flexible anymore and if I didnt excerise I would stiffen up. I didnt go to the doctor because other than that and the mild pain in my hips and back I was feeling great. Energy wise I had over 4 really good years. I'd never felt so normal and I did so many things that never seemed possible before and despite the hips I kept active all the time with work, karaokes and my kids. I had a few funny things happen to my body though including plantar fachiitus in my right foot, tendinitus in both knees and one morning I woke up with excruciating pain in my left foot with no explanation but it put me on crutches for 2 weeks. I went to casualty and lied that I'd tripped over the cat because I thought if I told them it just happened for no reason they might just dismiss me. It was all swollen and they said probably soft tissue damage.

Then I got pregnant with Alyssa in 2008 and my back and hips started getting worse and the clicking was louder than before. The sound wakes me and my husband up at night. We bought a new superking size bed because the pain was getting worse now and I fidget so much I would keep him awake. Now we had more room it was better. With me being pregnant and also hating taking medication I used heat packs and had physio again to help with the pain. But the physiotherapist said she wasnt sure that this was just SPD and I should go back to the doctor when I have had the baby. Well I had Alyssa and waited for the SPD to die down but instead of getting better it got wose. I was still keeping active, going out dancing and doing the karaokes and chasing around after the kids but now the pain and stiffnes was starting to impead on my fun and sleep. I'd be ok in the day time but at night I would be in pain and have trouble getting comfortable. 3 months after having Alyssa I went to the doc and he moved my hips about a bit and said the SPD will go I just have to be patient. I tried to explain that I was still waiting for it to go from having Emily so he said he'd do a blood test to rule out arthritus. The blood test was fine and he said it was probably just joint damage.

So i dropped the subject with the doc and accepted that from now on I will always be stiff and clicky. I kept up my excerise on the Wii and work kept me busy but slowly things got harder. The nights got worse and mornings were awful. Keeping active wasn't helping as much.

Then in february 2010 I woke up with a very familiar feeling of drowsiness one morning and imediatly thought back to the CFS. I shrugged it off and put it down to adjusting to having 2 kids and being back to work full time. I decided to stop doing overtime (used to work 60 odd hours a week sometimes) because I didnt want to burn myself out. I still did my karaokes though although instead of being up dancing I'd sit down all evening. Because of my hips I invested in a new £700 super mattress which did some good. Remember, I hate medication so was still trying alternate methods such as heat packs, hip excersise and massages

In april I had a nasty virus and ended up in casualty and thats when it all went down hill. My energy levels never returned to normal and I started struggling with work. In june I started getting headaches unlike anything I have ever felt before. I've always suffered the odd migraine and had a lot in my teens but had never felt anything like this. They made me dizzy and nauseaous and my mornings got harder to cope with. I was already stiff as a board every morning but the migraines were doing my head in. I went on holiday in July and was finding all the activities extremely difficult. Swimming was making me out of breath and my legs cramped up after one lap when I used to go about 60 before hand. The year earlier I had been in the pool on hols slowly going up and down the lanes for hours. I couldn't understand why I was cramping up and stiff in the summer when usually I only cramp and am only that stiff when its cold. I pushed myself to the brink to entertain my kids and then I got a chest infection and I just snapped. I went to the doctor and explained about the migraine which never seemed to go away and said my chest hurt and couldnt stop coughing. He prescribed antibiotics and a big box of migraleve and signed me off for 2 weeks. After 2 weeks I was still exhausted and ill but I went back to work, fighting the fatigue and migraines. The pain in my head made me completely forget that my hip pain was getting worse. No pain killer was helping the head pain and I was still dizzy and nauseous. Then one day at work I fainted and they took me to casualty. I was checked out and apart from a fast heart beat they said I was fine. Ever since that faint my hips were worse than ever but I didnt care because the head pain was crippling. I was off work again and stuck in a dark room all day. I couldnt do anything and I saw flashing lights all day long. My husband dragged me to the doc every week and I saw a nuroloist who was useless and said it was a CFS problem. I was prescribed tramadol and the 1st time I took them I came to the realsation that my hips had gotten a lot worse than I realised. The tramadol didnt help my head so much but I did notice the difference in my middle. My arms, hands and right leg also seemed to hurt all the time now days as well but none of that mattered because I was so pre ocupied by my head. Every blood test was normal except low vit D and low ferritin. I tried going back to work and lasted 3 days before my area manager insisted I take long term sick so I can get better. I week later I had somekind of reaction to the pain meds and my husband thought it was a fit and dragged me to casualty. I was kept in 3 days and they couldnt find anything wrong except low BP and a slight temperature. I had an MRI and saw a private nuro who said my brain was fine and it was chronic daily migraine. Along with these migraines I also noticed the left side of my face tingled all the time, my left leg has decreased strength and sensitivity and I have no reflexes in my feet. But there is no nurological reason for it. I was prescribed gabapentin and 6 days later the migraine just stopped! Along with the niggling feeling in the bottom of my back. But now I didnt have the pain in my head I knew I needed to tackle the hips and CFS or I would never get back to work. I receieved my CFS clinic apointment which is on the 22nd of feb so not long to wait now. I went back to the doctor for the hips but she didnt examine my back and said she'd send me for physio. She also gave me antibiotics for another chest infection. I have heard nothing about physio yet and have chased up the doc but still waiting.

Then a few weeks ago the pain stepped up a notch and I am now finding it very hard to cope. The pain is traveling down my right and my right bum cheek is killing me. The bottom of my back hurts like hell and I am stiffer than ever. Excersise isnt helping and most of the time I am to exhusted to do anything anyway. All I do most days is lie on my left side. My husband bought me a stick and a special cushion for christmas which helps and I cried because I had to admit that the stick does help. I find walking hard these days and I have had a waddly walk for years but now I waddle more than ever. I went back to the doc AGAIN and this one actually examined me. He pushed on my spine and told me to tell him where it hurt. The upper part was just slightly tender but it got worse the further down he went. Then he pressed one point right at the bottom and a screamed and nearly flew accross the room. I wasnt expecting that! He said it was my sacrilic joint and I need to see a rheumatologist. FINALY! someone who is going to help me! I am now taking tramadol, diclofenac, piroxicam gel and gabapentin as well as my multi vitamines, high strentgh vit D and iron tablets. If I start getting tramadol headache I take codiene instead but only if I am desperate. All that is a hell of a lot for a girl who hates pills. I went 5 years with this pain before giving in and using pain relief.

Anyway, nearly at the end now, thankyou for reading if you have got this far. On boxing day I started feeling really ill and pain all over. My hands and feet are puffed up and I was getting a high temp as well. Yesterday I went back to the doc because I cant shake it off and the pain is crippling. I almost didnt make it there and nearly canceled. I hardly ever get to leave the house at the moment. But I needed a new sick note so i forced myself to go. I explained the pain is so bad at night and I spend my nights crying and that I cant sleep and thats not good for someone with CFS. I wont be able to fight it if I cant sleep at night. While I was there my chest had filled with goo again and I chucked it up in her sink, how embarresing! She said it was another chest infection and gave me more antibiotics. She also said that the stick and cushion are a good idea, I was hoping she would say its a bit dramatic and a silly idea. But shes right coz I cant sit my right bum cheek on a seat. I broke down and asked to see a psychiatrist because if all my tests are normal then it must be in my head. She said that she believes that the pain IS real and not caused by a psycological issue and there is a real condition to do with the sacriolic joint. She also said that the rheumatologist can run more tests and will be able to help. Oh and I have also had a hip x ray but it was ok.

Other things I need to mention are that I get shakey hands and sometimes have trouble with my grip. I wonder if that is to do with nerve damage in my back or something? Also I used to get a lot of eye infections and once had an ulcer in my eye that clamped it shut for weeks. I've had laser eye surgery and ditched the contacts so no more gunky infections but I still randomly get red eyes for no reason. I have only just learned about Ankyolising spondilitus but it sounds like what I have. I had heard of it before but i thought it was to do with ankles! Duh!

So after 5 years of pain round my middle and other stuff I have gone from being very flexible, bendy and bubbly person who is obssessed with karaoke to a grumpy and virtually recluse person who feels like shes turning into a statue. I cant reach to pick things up off the floor anymore and every task I do means pain. Nights and mornings are worst. I take painkillers every night but days are easier and I can usually stick to taking the diclofenac. I am still on gabapentin to keep the migraines at bay and its working thank god but my left leg still feels funny, a bit numb and almost cramps. Also my right foots been hurting a bit lately.

Well, thats my story. I need my life back. I do still make an effort with anything to do with my girls but everything else has gone out of the window. I cry all the time and I know that any test the rheumatologist does will probably come back normal and every scan will be ok. It always the same. NO REASON AT ALL for my pain. When my downward spiral started I was in such a happy place and everything was perfect. I have always yo yo'd with my weight but at that time I was so confident and happy. Why did this have to happen?

Please tell me your thoughts on this. Thank you so much to anyone who read it all.

dreamdaisy

Oh dear, you poor, poor thing KittyKate, you are going thro the mill, aren't you? I have read thro, and I have no idea. I am not a doctor, I cannot even begin to work out what it all adds up to but I do know that arthritis comes in quite a few variations, shapes and forms, not all can be diagnosed by a blood test, and it can take a while for symptoms etc to be recognised, if not diagnosed. You are already taking meds which are used to treat some arthritises, and I hope they helkp if only a little. Two questions: what is CFS (I thought cystic fibrosis at first but isn't that just CF?) and do you ever feel any numbness/lose your balance? DD (forum member)

KittyKate

Sorry, CFS stands for chronic fatigue syndrome, also known as ME. Yes I get numbness in my left leg and down one side of my face. Sometimes I wake up with dead leg or dead arm. I am very clumsy and drop things a lot.

also I should add that I do have real pain experiences to compare this too and I'm not exagerating when I say that this is HELL.

I gave birth to my 1st with no pain relief and my 2nd with nothing but a failed epidural, and once I almost chopped off my toe when a grill pan fell out of a cupboard onto it.

Plus I think my dad may have had undiagnosed AS. I have been thinking about it alot today. He waddled when he walked and used a stick mainly for ballance though but he had diabetes and skitzophrenia so I always wondered why he walked that way. When ever i asked him he said he was just stiff. He never saw a doctor about it and put it down to side effects of the meds. His neck was always really clicky and stiff and he would spend hours rubbing it and clicking it. I used to tell him to see a doctor about it but he was mentally ill and he told me that it was his mind mending itself and the clicking was putting bits of it back together. Mad I know but that was the my dad was.

Lastly, the main thing that convinces me is that I read up about how AS can affect the heart and I read somewhere that the valves can become calcified and that is the exact reason why my dad had a heart attack and died.

So maybe its possible that he had it and i inheritted it from him. Plus my mum has rheumatoid arthritus so I supposed its not too far fetched to think I could have AS.

dreamdaisy

I know that these things can run in families, if AS sounds a possibility then that should be addressed by a rheumatologist I would have thought. I don't know anything about it - and I wouldn't make any suggestions anyway as I am not a doc! I know that the helpline has all sorts of information about the various arthritic conditions, I am sure they will be in touch with you soon. I am sorry I cannot be more constructive. Thank you for the clarification of my two questions! I wish you well. DD

helpline_team

Hi Kittykate,
I'm really sorry to hear that you've been going through hell recently.I think it's completely natural to want to attach a name to the horrible array of painful symptoms you've been experiencing, but I wouldn't get too hung on the Ankylosing Spondylitis link just yet. It's not an inherited condition. We're not doctors here so I don't want to speculate too much on what the diagnosis could be - the symptoms you describe are indicative of different conditions - so Dreamdaisy is right, this needs to be discovered by the rheumatologist. It may take more than one consultation to get to the bottom of this, so don't go in expecting a eureka moment. But don't worry that you're tests will all come back normal and they'll say you're ok. When they see how much pain you're in they will want to find answers so they know how best to treat you.
In the meantime, I think it's important that you look for ways to try and distract yourself from the pain even if it's only for short periods.
And to find ways to stop worrying. Easier said than done I know, but arthritis loves nothing more than some stress and anxiety on top so it can turn up the pain volume. And here's the crucial one - accept support. Wherever or whoever is offering it. When we've led very active lives we delude ourselves that we're invincible and can do everything on own. Then if we're cut down in our prime we hate to accept help as it makes us think we're a burden to the people closest to us. But everybody around you wants you to feel better, so the more support you accept, the more it will enable you to gradually get your life back. And remember that we are here - this forum gets checked every day so if you're feeling lousy or grumpy or just want a rant, then fire off a message. There are also loads of very smart, caring, helpful people that contribute to these forums and they can be an invaluable source of support when times are tough.
All the best
Paul

frogmorton

Hi Kittykate

Oh poor poor you :sad:

What a long and sad tale. I am so sad for you reading it.

So very glad you found us and that the appt is next month - you've made it this far so you WILL get there.

I agree with everyone - the rheumatologist WILL help[ - taht nice dr will have told him everything she (he?) can so you will not be 'written off' too quickly.

Would you think about joining our forums and listening to us lot being silly or helping each other? I have found them a wonderful distraction and to be honest they about saved my life when I was at rock bottom.

Oh by the way - could you buy a pick up stick? That would help you grab stuff that is out of your reach.

In the meantime please take care

Love

Toni xx