its not fair! - now including update.
- Thread starter Littleslimmingbee
- Start date
Ooh hunny you sound just like me.
I'm 22 and have ankylosing spondylitis. It took two years for me to get diagnosed till one day I sat in my gp's office and refused to move till I was offered blood tests which showed I had the HLAB27 gene. It's not only people with the gene that get A.S though so just because they say you don't have the gene means nothing. You need to put your foot down and ask to be referred to a rheumatoligist. It will mean lots of tests like MRI's and bone scans but if it finds the problem and helps them come up with a way to stop the pain then it can only be good. I now have regular steroid injections, take special medication and have physio as well as wearing splints.
Eczema (psoriasis) and stomach problems are also linked with A.S as well. What test's have they done with regards to your stomach problems? Is it triggered by certain foods at all? Have you kept a food diary?
Are you restless during the night, do you snore? (this also applies to the girl having sleep tests). With sleep apnea you have periods where you stop breathing in your sleep (only for a short time) and your body wakes itself up although you often don't know and so even though you get a full night's sleep your body isn't getting fully rested. I had my tonsils removed and use CPAP and that really really helped although I do still nap through the day but that's more because some normal daily tasks are a bit more effort than they would be to other people.
I would keep a diary if I was you labelling any symptoms, any times, any triggers etc. That way when you see your doctor you have it all there to show them.
I would also ask about ME and Fibromyalgia as well if I was you. As sometimes the simplest explanations get over looked.
Disclaimer: I am not medically trained, the above post is only from my personal experiences.
I'm 22 and have ankylosing spondylitis. It took two years for me to get diagnosed till one day I sat in my gp's office and refused to move till I was offered blood tests which showed I had the HLAB27 gene. It's not only people with the gene that get A.S though so just because they say you don't have the gene means nothing. You need to put your foot down and ask to be referred to a rheumatoligist. It will mean lots of tests like MRI's and bone scans but if it finds the problem and helps them come up with a way to stop the pain then it can only be good. I now have regular steroid injections, take special medication and have physio as well as wearing splints.
Eczema (psoriasis) and stomach problems are also linked with A.S as well. What test's have they done with regards to your stomach problems? Is it triggered by certain foods at all? Have you kept a food diary?
Are you restless during the night, do you snore? (this also applies to the girl having sleep tests). With sleep apnea you have periods where you stop breathing in your sleep (only for a short time) and your body wakes itself up although you often don't know and so even though you get a full night's sleep your body isn't getting fully rested. I had my tonsils removed and use CPAP and that really really helped although I do still nap through the day but that's more because some normal daily tasks are a bit more effort than they would be to other people.
I would keep a diary if I was you labelling any symptoms, any times, any triggers etc. That way when you see your doctor you have it all there to show them.
I would also ask about ME and Fibromyalgia as well if I was you. As sometimes the simplest explanations get over looked.
Disclaimer: I am not medically trained, the above post is only from my personal experiences.
Gettingthinnerbytheday
Gold Member
Oh honey - I am not suprised your feeling compleatly & utterly fed up!!
I really hope that you get some answers, must be awful for you.
I have no advice to offer, think the others have given some great advice, esp the last post.
Good luck with it all honey x
I really hope that you get some answers, must be awful for you.
I have no advice to offer, think the others have given some great advice, esp the last post.
Good luck with it all honey x
SlimDreams
Full Member
Sorry Fern to hear you are feeling so unwell. Have you thought of trying some complimentary therapies?? Acupuncture, Healing, Counseling? Its just that i believe that most, not all ,sickness is some kind of emotional blockage. And once unblocked the sickness goes.
Just my beliefs not necessary anyone else's.
Hope u get something sorted out very soon
xx
Just my beliefs not necessary anyone else's.
Hope u get something sorted out very soon
xx
isobels
Full Member
My mums boyfriend has ankylosing spondylitis, well it had spondylitis in the name.He has a very bad time with it, so I hope that its not that.
I dont find doctors helpful, they always wont to get you out the door asap, sometimes nurses can be better, they care.
When you more to a new surgery, they will book you in with the nurse to have a full check-up
Hope that you feel better soon x x
I dont find doctors helpful, they always wont to get you out the door asap, sometimes nurses can be better, they care.
When you more to a new surgery, they will book you in with the nurse to have a full check-up
Hope that you feel better soon x x
i for one knwo a back massage is brill. reflexology is another amazing thing but i cannot stand it due to sensitive feet, but the one session i had cleared my migranes, helped my hip pain cause by arthuritus and also my back pain. oh and clears my sinuses.
ohhhhh another thing the reflexologist pointed out my thyroid was playing up and a blood test proved her correct
Littleslimmingbee
Gold Member
i do try and have a good massage when i can and find it helpful for a few hours, but by the evening my aches and pains are back.
anchylosis spondilitous is awful condition, my brother suffers mostly in his hands and pelvis, meaning he had to give up the drums and guitar which is an awful shame.. his wife has ME so that takes a toll on them both but still keep positive.
im handing in my forms tomorrow, woman says its two weeks admin usually then i can have an appointment. Im taking my list and im not going to move till she helps. i want every test they can give me..!
i think im just s cared of wasting everyones time.. what if there actually isnt anything wrong with me?
anchylosis spondilitous is awful condition, my brother suffers mostly in his hands and pelvis, meaning he had to give up the drums and guitar which is an awful shame.. his wife has ME so that takes a toll on them both but still keep positive.
im handing in my forms tomorrow, woman says its two weeks admin usually then i can have an appointment. Im taking my list and im not going to move till she helps. i want every test they can give me..!
i think im just s cared of wasting everyones time.. what if there actually isnt anything wrong with me?
Littleslimmingbee
Gold Member
So,
my boss turned round to me on friday (after id had no sleep due to stomach pains, and had been in tears when i finally got to work as i felt so sick..
shes now said if i dont get better she will have to cut my hours/ loose my job.. because by friday im always ill . In her words 'clearly three days is too much for me' - i was absoloutly guttted. I didnt know what to say to her, i love my job, and although there is some truth in what she is saying, its pathetic that at 18, im struggeling holding down 3 days because im so poorly all the time, granted iv only had two sick days, but im always in work poorly.
so, i went to doctors and demanded an app. asap. However, he caught me of guard by saying i could have one then and there, so was not prepared with my list.
so, anywho. iv got some blood tests on thursday, and will be having the results back within a week, and have an appt. to discuss them. As a new patient he gave me a check over and i told him as much as i could off the top of my head..
he says its unlikley i have A.S, but that i may have mild arthritus in my fingers, and knees, and its possible i have somthing i can pronounce, but after speaking to my brother, he says the word is the umbrella term for ME - which would explain alot, possibly even the slow weight loss now.. but i suspect thats just me being so close to target also.
i am exhausted today, and the stress of what my boss said has freaked me out. the last thing i want is to lose my job. i assured her my job means everything to me, and that'd id do my best to prove myself reliable and il do all i can to get sorted..
OH is mad because my job is now at risk, but i think he is just scared there is somthing wrong with me, he doesnt want to say so he's just getting mad at me when i say im not feeling well, am tired or have a headache etc.. i think he's struggeling to cope with me now too.
huff. not looking forward to having blood taken on thurs, but i can only hope its worth it.
xxx
my boss turned round to me on friday (after id had no sleep due to stomach pains, and had been in tears when i finally got to work as i felt so sick..
shes now said if i dont get better she will have to cut my hours/ loose my job.. because by friday im always ill . In her words 'clearly three days is too much for me' - i was absoloutly guttted. I didnt know what to say to her, i love my job, and although there is some truth in what she is saying, its pathetic that at 18, im struggeling holding down 3 days because im so poorly all the time, granted iv only had two sick days, but im always in work poorly.
so, i went to doctors and demanded an app. asap. However, he caught me of guard by saying i could have one then and there, so was not prepared with my list.
so, anywho. iv got some blood tests on thursday, and will be having the results back within a week, and have an appt. to discuss them. As a new patient he gave me a check over and i told him as much as i could off the top of my head..
he says its unlikley i have A.S, but that i may have mild arthritus in my fingers, and knees, and its possible i have somthing i can pronounce, but after speaking to my brother, he says the word is the umbrella term for ME - which would explain alot, possibly even the slow weight loss now.. but i suspect thats just me being so close to target also.
i am exhausted today, and the stress of what my boss said has freaked me out. the last thing i want is to lose my job. i assured her my job means everything to me, and that'd id do my best to prove myself reliable and il do all i can to get sorted..
OH is mad because my job is now at risk, but i think he is just scared there is somthing wrong with me, he doesnt want to say so he's just getting mad at me when i say im not feeling well, am tired or have a headache etc.. i think he's struggeling to cope with me now too.
huff. not looking forward to having blood taken on thurs, but i can only hope its worth it.
xxx
frugal fifer
Silver Member
Oh Fern, it must be awful for you. Sending you a big hug and hoping this all gets sorted for you soon. It is hard when you push yourself into work to have your boss turn round and say that. Can you work less hours but keep your job? Is it a possibility?
Littleslimmingbee
Gold Member
Thanks guys. I hope so too.
Im going to try and up my fitness level, even though im exhausted it might help, im just trying to 'get on with it' and not pay too much attention to it.. iv just been for a 'run'/walk and i am completely knackered, but now iv had a bath etc, im feeling a little bit more awake, which is a nice change from feeling tired. lol
just had a nice fresh fruit salad, .. pinapple and strawbs.. yum. xx
Im going to try and up my fitness level, even though im exhausted it might help, im just trying to 'get on with it' and not pay too much attention to it.. iv just been for a 'run'/walk and i am completely knackered, but now iv had a bath etc, im feeling a little bit more awake, which is a nice change from feeling tired. lol
just had a nice fresh fruit salad, .. pinapple and strawbs.. yum. xx
