Showing symptoms of AS but doctors struggling to come to a diagnosis

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I've been suffering for some time now with lower back pain, I'm 23 years of age and work as a full time beauty therapist. I started really suffering and struggling to get through a days work about 3 months ago when I has an Amatsu treatment done which did not help or relieve the pain. The therapist said my main area of pain was in my SI joint. I went to my gp and he sent me for an MRI which came back clear. I went to back to work and struggled on while have physio as advised by my gp. 2 weeks later it got so bad I ended up out of work. I've been to a chiropractor and I've had X-rays done which came back clear. Been out of work 3 weeks has not eased my pain, Its now keeping me awake at night. I'm showing most of the common symptoms of AS but my doctor can't diagnose. Can anyone help??

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  • Posted

    My dear ,

    First I would like to say I'm not a doctor , just a very expirience patient .

    I can feel you are in pain . And looking for answers in such state is reasonable .

    But I would like to say that having a doctor who isn't quick to diagnos is a good thing .

    I was diagnosed years ago with Fibromyalgia by a doctor who never bothered to do any test apart from a physical and I ended up living with a false diagnosis for 4 years, with a lot of pain and no treatment . Only having properly diagnosed the last year with AS and final getting some relief .

    I don't know if you have AS or not . From what I hear it has to have a positive result in some imaging test XRAY or MRI . Which you don't have by your statement . Please do yourself a favour and don't look for a diagnosis online , it can be nerve-wracking and there for cause more pain by way of stress . You should go see an expert reumatologist. From what I understand you relied onot your gp and therapist but they are not the ones who can give you a diagnosis of AS anyway . Just the reumatologist. That should be your next step .

    Good health .

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    • Posted

      Thank you for your reply. My mam has fibromyalgia and was diagnosed around 17 years ago when they knew absolutely nothing about it, an American doctor diagnosed her. She's now 51 and was written off work at the age of 33. I've only recently turned to the internet because I feel I'm getting no answers from any doctors. I've racked up a bill of almost €700 so far and still no answers and have also been taking out of work for 4 weeks now. I feel it's changing me as a person as I'm getting very down in myself which isn't usually like me and I'm taking tablets to beat the band which I would never usually do either. I just want to know why I'm in so much pain, get the right medication and get on with my life 😕 I'm getting bloods done on tue and my gp has referred me to see a back specialist privately but I don't know if I should go see him or a rheumatologist??
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    • Posted

      First . I'm sending you a hug you are not alone in this . I know exactly what it's like to be in bed all day . Go insane with pain and don't have any way to stop it . But don't let it get you down , like i said before , stress and depression are the number one cause of pain weather it is a psycho-somatic response or an actual illness who is getting worse because of emotional stress . And it is a fact - your mind is connected to your body .

      So first try and get your mind off things . It will be OK .

      Second - if your gp is sending you a specialist he probably knows what he is doing better then me ( having never met you and not actually being a doctor ) . A reumatologist is the only one who can give you a diagnosis of a arthritis such as AS . But maybe your doctor sees other things and he suspects other things . It's not difinitive , this might take time , and you should take that into consideration in every aspect - financial and physical .

      Have you tried take some over the counter drugs ? Something like paracetamol or ibuprofen ? Do they help ? Because AS is a form of arthritis meaning there is inflammation and mess like NSAIDS are the first linew of medication for AS . For my doctor it was a big sign that this is actually some form of arthritis even before we got around to doing any xray when the medication got me some relief .but on the other hand he gave me some thing much stronger of the same type . Maybe your gp already gave you something ...

      I also recommend to start thinking of reasons this might happen . Maybe you don't sleep very well , maybe your bed isn't comfortable and it puts strain on your back or neck . Lower back pain can also be something that radiates from you feet ? Do you have flat feet , maybe you need insoles for your shoes ( even if this isn't the whole problem , this might solve some of the pain ) ? Knee problems ? Have you been doingiven to much sports before? Have your docor done any urine test ? Maybe you are not drinking enough and this pain is kidney related . Do you have any other parts of your body that bother you ?

      Try and get a massage , take warm baths ( before the diagnosis I did them sometimes twice a day ) I also went to somewhere in Englandifferent , a city called Bath where they have hot springs who are known to be good for reumatic problend such as AS . And it was helpful . I don't know where you are from , but there are lots of places of the sort in the world .

      I don't know if im helpful at all . I have a ton more of tips like that...

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    • Posted

      I've been on nurofen 400mg, ponston and now im on 500mg solpadol which are helping me sleep. I've had massages, I've got an amazing mattress, I do take hot baths with aromatherapy lavender oils.

      The chiropractor said I've got arthritis in my cervical and lumber spine, she said my neck should be at -43 degrees and mine is at -1 and my lower back should be at -42 and mine is at -35 she said it's a deferred degeneration, this is why I insisted the doc sent me for X-Rays as I wanted a medical opinion and diagnosis and she said everything is as normal??

      I'm just really confused and want to get back to work, get this pain under control and get on with life. I've literally been going from work to bed to work to bed, not seeing my friends, boyfriend no social life at all. As eager as I am to get back to work I don't want to go back to be feeling this way.... I don't know what to do next, I live in Ireland, as I already said I've wracked up a pricey bill, for me to see the specialist will cost me min €250. Nothing else is showing up anywhere I'm afraid it might be 1 a waste of money and 2 what do I do from there if he can't find anything wrong... This pain is not in my head and I feel I'm trying to justify myself because nobody can see my pain. I feel I'm going around in square circles ...

      I don't make a good patient! 🙈

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    • Posted

      First , a chiropracter isn't much of a doctor and can't diagnose arthritis , with all due respect. And letting you be misled by his diagnosis means that you might Insist your doctor take the wrong path as far as test an dignosis . Again . You might have arthritis and you might not . This might be Fibromyalgia too ... I was asking if you have pain in other areas of the body ...

      Im not familiar with those medication's . I am getting naproxen . It's not 100 % but I have relief after years of suffering . Years !

      So yes . This might take time . And I do want to mention that people with AS are better off if they stay active because staying in bed all day brings on more pain in the back as it becomes rigid . So try getting out of bed . Maybe go swimming.

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    • Posted

      Yes recently I've been getting shooting sharp pains in my legs, feet, toes, arms, hands, fingers, pelvis etc but it only lasts for a very short time and then it's gone and it's only in 1 area at any 1 time... I did not solely believe the chiropractor that's why I went back to my doctor, I just feel I need to keep at my gp to investigate further as I don't think they think I'm

      in as much pain as I am... I do go walking everyday as I'm not used to been out of work never mind staying in bed all day...

      It's so frustrating as the weeks just keep going by and I'm

      still no better off. I'm eager to get back to work and the bed rest hasn't done me any use but I know this is going to get so much worse when I do get back to work as my job is so physically demanding...

      I think I will just have to get the blood tests done and pay to see this specialist and pray they can find out what's wrong and get me on the right meds....

      I hope it's not fibro as I see how debitating life is for my mam.... My heart breaks for her seen how much pain she is in. She's 51 trapped in the body of a 90 year old... It's awful!!

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    • Posted

      I agree . Fibromyalgia doesn't mean you are better off . Having lived with this torture sentence for years . It is more then just a disease. It is the mark of cane . Nobody treats you right with it . Not your doctor . Not your friends or family . Not even yourself . Its funny but I think my husband was somewhat relived to fins out its not Fibromyalgia . I think he thought fibro to be a sign that I am crazy or not happy with my lot to the point of depression and the doc just don't want to tell me something like that . I don't think he realised yet that I might look like a question mark one day because of AS .

      Take it one day at a time . Maybe you can find a new job , one that is less demanding physically . I don't know how it works in Ireland but maybe there are organization's that help people with health issues and less money . Just a thoughthought . You should check this thing out until we find the solution.

      It does sound like arthritis of some sort . But there are a 100 types . Have you thought about changing your diet . I feel it help me to limit certain things and in courage others. Like eat more fruit and vegetables. Less animal product like meat . Less alcohol . Never been a smoker but cutting that is helpfully too and also less cafein drinks . Look it up there are other tips about anti inflammatory diet . It works for healthy people and people with fibro too so you can't go wrong .

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    • Posted

      Thanks for all your advice. My ideal outcome of all of this will be to find out what is going on and to get medication to manage it so I can get back to my normal self, I studied very hard to do what I do and I'm only 4 years into my career and I love every minute of it except for recently because they pain out did everything. I may end up having to look for a new job but I'm not going to rush into that.

      With regards to my food intake etc I do eat fairly healthy, I only drink 1 tea a day and the rest peppermint which I love, I dont drink coffee, I've never smoked, eat all fruit and veg and dinners are generally healthy, I drink plenty of water. I would usually have a few beers on a sat night but in recent times I haven't even bothered going out and if I did go out I would be no more interested in drinking. I have started to gain some weight because I haven't been going to the gym but I'm keeping up the walking.

      Do you ever just feel like people think it's in ur head? And I don't know how or why but anytime I gear myself up to ask my doc can i go back to work the shooting pains tend to get more severe and frequent....?

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  • Posted

    i feel that way a lot . i think every person walking around with fibromyalgia is thinking twice a day "what if im crazy and it is all in my head ..."

    today , after having gotten a diffrent diagnosis , i guess i know its not in my head. but on the other hand , sickness has allways a bog impact on our state of mind and our state of mind has an impact on our sickness , no matter what it is ,weather it be fibro  or cancer .  

    i've diagnosed with fibromyalgia for 4 years before i got the recent diagnosis (which i hope and thinnk is the last one for now ) , but before that i had symptoms for several years before that and i got all sort of assumptions by doctors who thought i might be suffering from deppression  or anxiety or other form of humilating solutions that modern medicine has up her sleve for when a doctor doesnt know  whats wrong with you . but year later , here i am , with signs of damage from AS because of about 7 years or maybe more of not taking care of myself ... 

    in the past they had other such solutions , woman who presented with symptoms very much like fibromyalgia whould be diagnosed with Histeria , which was considerd a firm of mental illness , 

    so it doesnt feel like we moved up in the world , but atleast eventually i got an answer , and hopefully so will you . nd i hope it wouldnt take 7 years for you . 

    if we are talking about mind over matter connection , i would suggest taking up yoga , 

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  • Posted

    Just wondering, Ashling if you got a diagnosis? And if you did, could you tell me about it? Your symptoms and story sound like mine. I have had several tests but no diagnosis. I am frustrated and in pain. Hope you are doing well.
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