Pain is invisible to the visible eye of an outsider so people don’t believe you. Especially when this condition is so variable from day to day and hour to hour. It’s a hard condition to understand unless you are the one with it.
Im in sweden and its the same here. They send people with cancer home with pain medication over the counter and everything they dont know what is, they send you to the psychiatry for.
I am 18, and was diagnosed with AS last year, despite the fact it was "impossible" because I'm not male or "old enough"! I started with AS symptoms at a very young age (4/5), and was diagnosed with Crohn's disease when I was 12. I started humira last year, and it has made a real difference. At the moment I'm flaring, but I'll be back on track soon! I wish you the best of luck with your AS xx :-)
Crohn's Disease actually is relative to the AS complexity (at least, that's what I've read). I get angry about doctors who misdiagnose. I hear a lot of stories about women who go misdiagnosed for years, because their doctor said they didn't have it (man, that really burns me up!). Well, it's true that symptomology may be different in men and women; less common in men, but there are women who have AS. I'm male, but I highly respect all you ladies out there! I read an article some time ago, about a woman named Jane Brucknell (spelling correct on this??) who had for YEARS dealt with severe pain, and no answers from doctors. Long story short, she was eventually diagnosed with AS, and if memory serves me correct, she started one of the first AS societies.
@@daveglassman4779 chrone deases gives symptoms of SA but do not gives spine fusion..and respond good at biological treatment...i mean chrone deasese...many doctors dont differentiate..... .
@@danplugaru8187 ba face diferența destul de bine doctorul ce poate să facă el sau toți doctorii și eu sânt bolnav crunt cu cea mai crunta boala fara leac numita BPOC , emfizem pulmonar și fibroze pleurale plus SA
hey Vicky first of all thanks for starting the A.S.project that's awesome. I just turned 60 I probably had A.S. since I was 11 or 12 years old. for me the onset was excruciating tailbone pain that would come and go and I thought it was because I fell hard on the ice taking a shortcut to school I grew up in Co.but really by the time I was 17 the middle of my spine joined the party and it was hurting like crazy off and on too. I know now they're called flares. but I have progressed to my whole entire spine both hips and both shoulders 24/7 .. so the awesome Doctor Who diagnosed me told me that's what progression means!!! because all MY research I have done that led me to this top researcher I almost thought I didn't have it because everything I read was talking about the pain coming and going (flares) And mine had came and had had not went anywhere at that point 10 years.....the awesome Doctor Who finally diagnosed me in 2013 he is a top researcher for A.S. and I'm sure you probably know by now here in the here in the USA there's literally only a handful of rheumatologist that take an interest and truly understand this complex disease.!!!. so. in 2002 I was working in Mississippi and had to go to the emergency room because I knew I had a fracture I feltl it happen.. well no they claim no fracture not much wrong except for a bunch of osteoarthritis although there were words on the printout of my neck like sclerosis and I'd say to Docs well what does that mean??? oh it just means hardening!!! OMG! idiots is all I can say there's more to all that story but I'm going to move forward. so from 2002 to 2013 I was diagnosed as either a crazy person., or mechanical back pain, osteoarthritis (which by the way everybody gets in their whole entire body starting in our thirties it's the normal process of Aging.).. and my favorite fibromyalgia. because that's what doctors love to do when they can't figure out what's wrong they're too lazy to do research and specially if you're a woman.with fibro. there's similar symptoms I'll give them that but I knew I didn't have fibromyalgia and I don't.. I don't know if you're aware hon but extreme fatigue goes along with Ankylosing Spondylitis too! and I'm not so sure that brain fog doesn't either!! I am so Advanced I get fractures in my spine very easily. back to the fractures they were not seen until I move back home to Co. after Hurricane Katrina 7 years later!!! unfortunately at that point it was too late to do anything about them so now I also have scoliosis caused by the fractures not being treated now that has nothing to do with spondylitis but I'm deforming into different directions. I have kyphosis from the disease process of AS inflammation...extremely bad and I did NOT have bad posture.. anyway long story short was misdiagnosed for that 10 years how I found out what I had was after all MY research led me to that top rheumatologist. by way of SAA & NASS out of the UK.. I love the way doctors never look at certain words in a printout of spinal film all they look at is the very bottom what the radiologist puts is his opinion. and I don't know if you've ever noticed but they do not include everything that they found in their findings??! I Googled a paragraph from one of my many C.T.'s where was talking about edema being in my lumbar spine.. which brought up a lot of things about ankylosing spondylitis!! let me add I have been to two rheumatologist prior to the diagnosis.. 1 seemed to think nothing was wrong.. the other one thought I just had a lot of osteoarthritis at earlier age than I should have. I also want to add it while living in Mississippi from 2002 to December of 2006. I could not get any of those primary care doctors or any other doctor to send me to a rheumatologist. I kept telling them well aren't they the ones that deal with bones and joints?? yeah they are but they never when it comes to a spine They Don't Really deal with spines!! we rarely send a person to at rheumatologist over a spine. now that is not unusual even if you're not in Mississippi in Mississippi you have to have a referral to get to a rheumatologist it's the only way to see one.. other states are not like that I know that for a fact.. but like I said I had went to 2 in Colorado still diagnosed me wrong!!! and neither one of them bothered to take films of my SI joints either by the way!!! that's another thing I would tell doctors shouldn't you take films of my joints underneath my lumbar? no we rarely do that... the pain never comes by from that!!! so yes a lot needs to be done especially in the United States with all my research I think the UK is definitely more up on ankylosing spondylitis especially primary care doctors! what do they have like 98 Spondylitis centers in the UK equipped with heated pools. physiotherapists at work at each and every one of them and only people with the spondyloarthropathies. eg , inflammatory bowel disease psoriatic arthritis psoriasis ankylosing spondylitis..etc. are allowed to go to t m.. must be nice.. The only actual Spondylitis Center within a Rheumatology Department itself is in San Francisco University of San Francisco they actually have a Ankylosing Spondylitis Center within the Rheumatology Department.. must be nice!! there's so much more to say but I'm not going to go on anymore.except to say I've Also my 4 had iritis off and on since my mid twenties and nobody ever caught it with that either!!! went to chiropractors on and off for years in my younger years like a lot of people do.. I do have swallowing issues that come and go I thought it was unrelated but it's not if you can believe that one!!! I'm lucky for the reason the inflammatory bowel disease very mild 4 me psoriasis only affect my toenails... oh one more clue they missed I lived in heels all throughout my twenties thirties and early/mid forties. literally could not wear flats could not go barefoot because I had the heel inflammation and I still do!! now unfortunately I can't wear heels anymore because it's excruciating for my spine and it's a flip off you know which do I try and make the pain better my heels of my feet or my spine? oh and TMJ I suffered with that all true being a kid and in my twenties excruciating that should have been another clue for ankylosing spondylitis dentists are the ones that are not informed at all about our chronic disease and they definitely should be with TMJ involved!!! anyway I look forward to the form you're going to put out do you actually have a website the Ankylosing Spondylitis project? anyway thanks again I'm glad you finally got diagnosed too. I hope you understand what I mean, of course I'm not glad you have this but of course it's better to know is what I mean I'm sure you know that lol. thanks.
I'm glad about what you mentioned regarding the vertebral fractures (also called compression fractures) and the resulting scoliosis. Now I know that the slight deformities I'm experiencing in my spine - the scoliosis, could very well be related to the AS - more specifically, to possible compression fractures.
Took me little over 15 years to finally be diagnosed with AS. I was dismissed by multiple family doctors when I requested referrals to see a rheumatologist for the last 5 years of that 15 years trying to figure it out. Took me a long time to realize it was some kind of arthritis. But, they kept telling me to do physical therapy and yoga and that I didn’t have anything wrong. Went to a chiropractor to get adjusted for the first time and she wanted x rays before the consult. First words out of her mouth was “ I can see from the X-rays that your have arthritis”
Yep! Took me 20+ years!! Looking back, there were SOO many red flags, but of course nobody put the pieces together. I got diagnosed a decade ago, just for them to retract the diagnosis because I didn’t have the HLB gene or whatever it is. AND my first X-ray was positive for AS, as they did the proper amount of views needed to properly see AS changes. However, my MRI was mostly fine, as I wasn’t experiencing an active flare by then. I was actually doing really good in comparison to my usual. So they re did the X-ray with only 2 views. My current rheum was PISSED as she went through my history and all the time the ball got dropped. I only even got my diagnosis because I kept pushing my PCP that something more was wrong (was diagnosed with fibro all this time, despite NOT having muscle pain, but rather JOINT and back pain 😔) How in the word is this able to happen??
You're right. I've had AS for 54 years now. It's been a long haul. It defines the person I am, for good or bad. If I was 'cured' I think my mind would reinvent it. AS and me are now the same thing. But I never give up, or maybe I just don't know when I'm beaten.. read it either way. Maybe I'm presenting a rather bleak view of AS but there is definitely an upbeat side. It's focused my mind to what's important in life and concentrate on skills that I am able to exploit. It's also given me a better appreciation and compassion for others who are suffering more. I hope this helps, so good luck and don't give up!
I hope that you are seeing a therapist. You can truly be happy facing a hopeless situation in long term chronic pain. (I see it and feel it every day!) My partner has RA, lupus, diabetes and antiphospholipid disease yet she is still a generally happy person. Her leg was amputated last May and she is constantly in and out of the hospital. I have chronic pain and am am still waiting for someone to figure out what going on with me. I hope that you can find peace within yourself! Know that many face critical issues each day and each handle it their way. Thanks for your information on AS.
I’m in SO MUCH pain this year. I’m unsure how long I can work standing all day, but how will I pay my bills, if I don’t. I’m miserable and people close to me notice the change and increased irritability. No pain pills in this post opioid prohibition and I can’t take anti inflammatories because of GI bleeds. I’m in serious despair. It’s all over me ( feet, achilles, ankles, knees, Sacral, lumbar, cervix, shoulder, elbows, wrists, hands) I am positive for the genetic 27 marker. I had Breast cancer this time last year. This is FAR worse and long lasting, getting worse each year.
Take a look at The Low/No Starch Diet for Ankylosing Spondylitis on face book, over 8000 AS+ people treating AS with fantastic results, I am one of them and I have my life back.
Hi Vikki! God bless you for your struggle. I thought I was the only one. It’s so hard to relay how awful AS is. I too had to make videos to help describe this horrible journey. Here’s a link if anyone is interested in my fight. Keep up the fight Vikki! We are AS warriors!!!!
You sound like me , l understand completely, l have had pain all my life , God Bless you , l have had to use mind over matter ,, l am 74 years old changing doctors over over over ,l found another doctor again hopefully he will listen to me the pain is unbearable! thank You for your time sharing videos about Anklelosis Spondylitis,💁♀️🙏💕
I'm glad to have heard your story here. I'll be sure to check out the links you mentioned. I was diagnosed with AS in 1990... my regular doctor - a GP, was the one who diagnosed me. He first did a complete blood panel, and I showed up pos/neg for RA factor (rheumatoid arthritis). Then he ordered a bone scan. It was the bone scan that showed the inflammation in my SI joint and lower lumbar. The doctor also ran a test for the genetic marker - HLAB27, which was positive. So, the diagnosis was clear; Ankylosing Spondylitis. I was surprised that a GP was able to make the diagnosis. What a wonderful doctor! I was put on prednisone, and then after that, a host of other meds. I now take naproxen, which seems very efficacious. I can relate to the daily pain and fatigue...I fight that battle, too. I also am part of a support group for AS on Facebook. It's nice to know I'm not alone in this!
Thank u ! I feel less alone. ur story is so much like my story! I can't stop wondering What Marly looks like? She provided some much needed comic relief! 💚
I checked out the channel I’m sad to see no updates in 3 years. This had great potential in helping a lot of people...i can related to a lot of this..I’m curious as to what happened?
I`m 45 and my pelvic is completely fused and lower vertebrae 1-6 completely fused. I have been in pain for 25 years. People that do not have this disease has no clue what pain is. This pain would kill a normal person!!! I too have a short fuse and call it how I see it. For years Doctors told me I was soar because I was a construction worker. JOKE
I started with lower back pain at 16. Tailbone started @14. At 24 was diagnosed with lumbar radiculopathy and lumbosacral radiculopathy and spinal arthritis. 6 mos of pt and sciatica went away for the most part. I'm chronically tired and in pain. Now I'm having trouble with my sternum & rib cage -constant pain. I've stretched & exercised. No help. I've lost weight & eat healthy...nothing helps. I was healthy nut when I started having chronic pain that limited my functioning/mobility. Some days I just can't bend/loosen up even with stretches and meds. Now I'm having a very difficult time breathing as it hurts to expand my rib cage & I get pain in sternum too. Thinking I have chronic illness since chronic illness & immune disorders are in my family..but I get afraid to bring it up w/docs bc they underestimate everything
Hi Randy here , I have ankleosing spondylitis and fybromilgia so I can honestly say I know what your saying. And you're right about the pain scale is much different from people who don't have any issues . Also have you or anybody else you know having eye troubles my eyesight changes daily .
Hi Randy, I had AS and Fybro also probs with my eyes, but 1 month ago I started a no starch diet after a lot of study and I have been pain free for 3 weeks now without Nsaids or other meds.
I am 37, just diagnosed this year. I've been suffering from the symptoms since I was about 6 years old. It started like yours did, with gastrointestinal issues. Then it included deep pelvic pain and gradual loss of flexibility. I also have Cervical Spondylitis and it's difficult to turn my head. On top of it all, I have anemia from an unknown cause, though my Gastroenterologist thinks it's from the AS messing with my gut's ability to absorb Iron and B12. When the brain fog hits, it's hard to say what I need to say and it gets frustrating. Sometimes, it gets to the point where I hear other people speaking, I hear the words, but assigning meaning to them is impossible. I've seen about 8 doctors before I found one that took me seriously. I even had one gem of a doctor give me an X-ray, only to later admit that he didn't take me seriously so he didn't put any film into the machine. I've been called lazy, a hypochondriac, crazy, a nuisance. All of it. It wasn't until my brother was diagnosed with AS that the doctor I was seeing took me seriously. That was when she ordered a blood test and found the HLAB-27 variant and got me in contact with a rheumatologist. Though, right now, I can't do anything, treatment, wise since I can't work and have no insurance and SSI is dragging their feet approving my disability.
This sounds like my story thru and thru. I finally was just diagnosed a few days ago. After a positive HLAB27. I honestly do not even believe them. As its been hundreds of doctors over the years. Ive even tried to get my primary 3 years ago to look into AS, and my surgeon last year after spine surgery. Because my pain was still there, months PO. I am not sure I believe this. Because if its true. I cant stop running all the shit doctors in my head who dismissed my pain, treated me like a drug seeker, treated me like I was imagining it, like I was just "sensitive". Like It was purely a slipped disc, then 2 discs, then 3 and a tear, then ruptures. Then Im over sensitization and im in a pain loop. No, theres something actively causing my pain and its getting worse. I continued to state this to whom ever would listen. Ive been ready to write my WILL the last couple of months because the pain has gotten so bad. So to be just diagnosed so quickly and randomly because a NEW PT sent me to a Rheaumatologist after meeting me for 5 mins.
First în women spondylarthritis ( not spondylithis ankylozant) is different as manifestation.. is nit with fusion od verthebres.. this is explenation for very late diagnose .. and issues are at sacroiliac and fusion is very rare!! Is a great confusion. În women is different...I saw thousand cases în 60 years...
Looking for answers. I had a back injury 6 months ago and it's not getting better. Neurosurgeon says oh there's nothing wrong, I've had a MRI that the report says sever chronic enthesopathy throughout the entire spine. Ok what is this and why did my Dr not mention it. I dig further and so some googling and it comes up with enthesopathy of the spine as being related to AS. Finding a doctor who will listen has become very much a futile effort. I'm in pain constantly. I have IBS, brain fog, extreme fatigue. I use a walker to help keep from falling. I am depressed,.so much so my new GP says I need to see a shrink.. I just want answers and not to hurt
The first rheumatologist I saw told me I had tendonitis of the foot! Imagine my surprise when I found out my neck, back, hip and knee pain was due to a tendon in my FOOT! 15 minutes in the second rheumy's office "you have ankylosing spondylitis"
So glad i found this. I have been for a few blood tests, i had test done for rhumatoid arthiritis it came back false negative, my test for imflammation came back positive, my vitamin D came back low. I had xrays in my back/hip and hand they came back as nothing showing, my neck and back came back saying i have arthitis. Its so confusing as my worst pain comes from my back and hip and right down my left leg, although my full body aches, i wake up 2-3 times a night with my forearms, elbow and shoulders aching, my hands ache, wrist, ankles, hip and lower back, And my groin. Also have plantar fascitits in both feet, if i have over done my upper body is tight and i have difficuilty breathing. After work i feel as though i have been hit by bus, my heels are so so sore. I have been referred to a rhumatalogist but going to be a long wait. Dont know if i can wait months i have been trying to get this sorted for years this is them just doing these tests. I am so down about my day to day life, my pain on a good day is a 7 out of 10 on a bad day 10. So tired and fed up. Take meloxicam and dhyrcodiene, vitamin d, and onzeprole. Does anyone ever expierence pain i there achilles and calfs. Im am so depressed every night i say to myself maybe tomorrow i will feel better, i have been living like this for years now wondering if the next day will be better and it never is. I try to explain to people how sore and fatigued i am but its like they just dont believe me or understand how i am feeling. Often feel like giving up, if it wasnt for my family i would just give up.ARE ALL THESE SYMPTOMS SIMILAR TO HOW OTHER PEOPLE FEEL????
Hi, First thank you for sharing, I was diagnosed with AS in Jan 2016 and after approx 19years of mistreatment/diagnoses. I recognize alot of the journey you have been on and are still enduring! I have been receiving treatment 'Cimzia' for 3 months, after an initial improvement I feel I am slipping slowly backwards. More pain,fatigue etc, im hoping it will level off, was this the case for you?
Try not to use corticoids i know its tempting for they relieve the stiffness but like my nutritional therapy said " corticoids are bread for today hunger for tomorrow" Muscle relaxers are better like chondriacs ect
I have herniated discs in the neck and lower back. Now going through peri menopause. While having all this stiffness on my back. The neck pain comes and goes. So I sound like a crazy 40 year old that’s always complaining about some body ache. Yes horrible stiffness. Struggle to desire to do anything.
Hope this helps someone out there with A.S I’ve had different mattresses in my life including posturepedic ones, recently I bought a different mattress as I was in a lot of pain.it was mlily premier 2000 memory foam,,, I always lie on my stomach so it took a bit of getting used to my shoulders sink in to it so now I’m sleeping all through the night.there’s different ones like Emma /tempur you never no
Since you mentioned that you have Psoriasis, I am hoping that your treating physician has good cause not to diagnose you with Psoriatic Arthritis, instead of AS. The two are sister forms of Spondyloarthritis. They both can have a positive blood test for the same genetic marker that you mentioned was positive for you. The symptoms of these two sister disorders are quite similar as well. I don't mean to frustrate you with this, but if it were me, I would want to know for sure. Peace & Grace
I was thinking about that too... psoriatic arthritis...there ARE, what I term, cross-over diseases. Interestingly, I have really bad eczema...didn't have this before my AS diagnosis. Could eczema/psoriasis be related to the AS complex?? Hmmm...
@@daveglassman4779 offf for me with long term SA is clear is not SA axial.....is spondilartritis ......and SA axiale with back fusion is majority at mens not women... at women is not fusion of spine ...is 60 years experience that i know that....
Tell me please how are your inflamatory analisis? I mean vsh and pcr( protein c reactive) i bet you have no big inflamation in blood although you accuse pains....please respond me to tell you what i believe you have ....
Blood test of inflamation is not high....important is how your x-ray are !! I have SA for 50 years my opinion you have not SA axiale...only if appears in x-ray is SA ....believe me !! Possible o form of artritis... make investigation if any infection !! If it were SA was stiffness at spine and visible on x-rays......
lol, if I had a Dr that asked whats wrong with my ankles... I'd get up and walk out, telling them I won't pay a penny for their "expertise" as I slam the door in their stupid face. Also, the website she is advertising, doesn't exist. www.AnkylosingSpondylitisproject.com And the channel died 3 years ago. Cool.
Sorry, there's no talk about what you did to help yourself... What diets did you try? Exercise? I've learnt you can't just expect doctors to help you with medicine, you need to put the effort in yourself
