and i waited 6 months to get specialist from public to tell me its so rare autoimmune disease that its not possible and propably just back ache that goes away on its own, even after all family history and year long symptomps i explained to her that all point to rheuma, had to go pay up for private doc to even get diagnose on paper to have meds to start fight the pain which already rised to shoulder from back cause this public care is useless, no wonder its said commonly take 6-8 years to diagnose if they just sending people home with nonsense from hospitals instead use brain and do proper diagnoses
so rare condition that i constantly keep seeing people gain it from friends or people i know and both side of family people having it and 3 people now on this random forum who ive been talking with by rng also have it, i guess we are just lucky, got this so rare disease that even public doctors keep misdiagnosing it cause they claim its too rare to be a thing. im just tilt i had to pay a fortune for private only cause public is so bad they cant diagnose even common conditions that anyone with internet can read to be the most common behind prolonged inflammatory pain and then being told by doctor its too rare to be a thing 
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It is weird, I work in an office with 1 other person and it turns out he has Ank Spond too!
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i keep hearing people develop it constantly too. seems more common than rare to me. pretty dumb to rule it out in case of being ātoo rareā by a specialist from public care.
if your allergic to anti-inflammatories you could try get on the biological treatments, my one friend started inject himself 2 time week with that for treatment and seem to get moderate help from it, anyways i didnt self get effect from anti-inflammatory pills as much as trying reduce stress and not eat too much sugar or red meat, but you can do the stretches and try have anti-inflammatory diet but it only helps for moment and the pain dont go anywhere, i think the most effective is just nuke it to rhemission early with decent ammount drugs for prolonged time and then continue with milder dosage or thats what seem to work for rheuma in any case which AS is aswell
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Ugh. I hate gaslighting doctors. I hate doctors. Had similar in getting diagnosed with stuff myself. Makes me so mad 
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it is not like she is getting paid 10k dollar month either like they get in finland to say nonsense which anyone with internet can confirm untrue, it is pretty sickening yeah 
i knew a guy who had doc papers here but said he gets paid so much he dont care to work 5 day week really so he just did weekends few time a month now and then and lived of from that 4x better than most people who work 5 day week welding on some roof or driving trucks or whatever, and people complain there is not enough doctors on public, i wonder if its cause doctors union keep their salaries high keeping graduates numbers low enough to keep this situation where doctors are like the only healer in lfg 
public has shortage with months waits but private clinics have 5 docs a day on standby 7 days week with 5 minutes notice from when you book one, you can literally get one from 5 min from now if you go pay up 200 dollars for 30min talk then + 120 dollar blood tests and + 400 dollar mri if you need etc. bring sacks of money!
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Took 13 years for them to diagnose my fibromyalgia 
doctors can be ridiculous
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have to just do everything self it seems, like always
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Fibro paaals! 
One doctor told me to MEDITATE the pain away!
I wanted to hit him with a chair and tell him the same.
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something neurological with heightened senses to pain from error in central nervous system could in theory be mildened with measures trying reduce stress but yeah saying to ājust meditate broā is good as nothing as a diagnose to a patient. i remember reading about that condition that there is chance that symptoms can go away one day if conditions change on the persons life like new relationship or promotion in job and the like, numb the system with spike on all the āfeelgoodā hormones but thats also like telling someone that your migraine will be milder if you win in lottery tomorrow
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In august i had (my faultā¦ hiking in scotland could be challenging) a pain in my left knee. Had a Us check, a rx check and after a ortophedic check. He told me. Youāll need 100% to have a surgical operation. But weāll do a RM just to confirm.
After the RM (perfect, just a lttle knee effusion) he said: as i said b4: its perfect. from tomorrow you can resume hikin.
Medicsā¦
puny you MUST publish the picture just to have some complain by us picky italians
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I ended up forcing my gp to send me to a neurologist to test me for MS, that guy told me I just needed more exercise and to lose weight!! When I pointed out my weight had gone up because the pain had reduced my mobilty and movement he admitted it might be fibro and the previous tests Iād had years before where no longer used as they werenāt accurate indicators.
Thankfully Iām now under the pain clinic and about to start my second round of acupuncture after Christmas, I recommend for anyone who has chronic pain to give it a go if they can!
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i was suggested to try acupuncture for ankylosing spondylitis when i said the basic anti-inflammatory drugs didnt have effect on pain, i could give it a try. it affects nerves so i dont see why it wouldnt give relief on pain treatment
i imagine it be more helpful than blessing, like i received from this one boxer in a gym i went before pain was not as bad yet, one guy asked if he can say prayer to my back and so i laughed that give it a shot and there i received prayer to god from this gentleman to my autoimmune disease, hand on back and prayer to god and all that. it was comical and i said that i dont believe in anything but thanks anyway
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Fibro doesnāt ever go away. It has managable days and unmanagable days. We have flares. Stress is absolutely the biggest trigger for my pain flares but also being too happy causes it too.
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I thankfully found a doctor who had some experience in rheumatology to get me diagnosedā¦ and then got sent home with a leaflet. The pain clinic was basically useless, I had just learnt how to cope on my own with much research and by the time I got to see someone they only told me what I knew.
I wasnāt offered any medication or alternate therapies. At most given a TENS machine which does nothing. Tried hydrotherapy but made me worse. Tbf I have ME/CFS as well.
The only way I got remotely better was to stop work and going out in general. Iām glad something is helping you, the idea of acupuncture makes my muscles clench in horror!
You do better than me I would have wanted to slap them.
nah, no reason. they just try to help, no harm in it. they get better feel for trying to be helpful and i dont get nothing from saying to their face that its nonsense, technically can even get little dopamine for doing something nice. its all part of the trying to reduce stress thing
i hope something starts give relief soon tho so can continue with physical activities like gym or do physical labor or if i need to go study new occupation, its all mystery yet how this will develop. currently not day goes by when backs not in flame or stiff from morning to night, still waiting on something start take effect, but stress is big factor on general in all conditions yeah, heightens the senses for pain and increases inflammation on system
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I thought your condition was the gradual and inevitable fusing of the spine? Iām not sure there is anything to really stop thatā¦
Edit: Quickly searched on the NHS website. As usual exercise is the magical cure(!)
Loads of medicine typesā¦ guess it is a very long process to be offered any at all though. If only we were rich and could afford private medicine, eh?
that is the late stage which you fight your entire life to not get to or prolong it as long as can, theres dozen of drugs for rheumas and other autoimmune diseases, they all come with side effects and need monitoring so you dont develop organ failure. the latest and most effective medicine for rheumas are biological treatments which can be bit of hassle to get if you dont do it through private. it tricks the immune system to stop attacking healthy matter due to fault in the immune system
around 30-50 years ago people just died to heart conditions from it cause there were no treatment at all, one relative was put to wheelchair cause back then there was not even any common pills they start on public these days before consider something like biological treatments which are about 1600 dollar month the meds. the treatment plan on rheumas are pretty new, about 30-50 years or so its all quite new still that medical science has discovered that you can put these autoimmune conditions on remission with effective dosage of drugs. the goal is to put it hibernate and maintain it like it, thats why its really important to start nuke it effectively enough and the more early its done the better effects long term. worst case is if its prolonged due to incompetence of some public doctor misdiagnose but still the treatment is same to nuke it into hibernation and prolong as so with milder dosages, this all i had to figure myself and eventually go pay private clinic as public care were of no help in my country
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Heres the thing - AS can affect ANY moving joint in your body - it affects my lower back and hips (not sure where it affects Alythena and Porenn though). While exercise can stave it off a while, there only so far that will help. Iāve known people where it affect thei shoulders, wrists, ankles etc - they guy with the ankle prob literally was walking with the soles of his feet turned inwards. will add to this soon as i have to dash out, but theres another story i got for ya
It definitely helped, my overall pain lessened and my flare ups happened less often plus I was sleeping a lot better which is a big problem with fibro. So far I havenāt had a return of the bad ankle pain either which was the main focus point for the last lot of sessions.
I got TENS machine too, it works for my back and arms but not for my legs/ankles so thats a weird one.
Honestly its not as bad as your mind makes you think its going to be, just take a book along and read for the 20 minutes youāre a porcupine 
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