(Part 1) Living with axial spondyloarthritis (axSpA) - Dr Barry O'Shea

[@sunettebrink2012]

My great great grandmother had this,skipped 3 generations and I was diagnosed after low Vir D levels and various bladder infections later. Been living with it for 20 years.

[@Chiroman527]

Excellent dissertation, folks. Very thorough explanation of this brutal condition. I am a sufferer of Spondy. No AS diagnosis, neg for the HLA-b27 gene, but axSpA to the top of my head! In addition, pretty severe DDD throughout (not really mentioned here), very thin vertebrea discs, with multiple sites of stenosis in all parts of the spine. The re is no way of confirming this, but I fractured my right femur at age 15 in 1966. Asa result, the right leg is just over 1" short. It ws left unaddressed by the Ortho Dr at the time, and after about 15 years or so, the lower back stiffness commenced. I attributed the back stiffness to the leg length discrepancy - a trauma to the body and the Physiatry of the spine. It was not until 2011 after finally pursuing this with orthopedic dr , that a lift was prescribed for the right shoe. Too late, the damages were done. MRIs (a multitude of them have been done since) confirms the encroaching conditions mentioned above. One of the worst aspects of this is the Chronic STIFFNESS and Fatigue. yes, it does Flare up too. I do not take any meds other than the occassional Advil (2). A carpenter I met recently, siad to try this: take 2 Advil with 1 Extra Strength Tylenol. That combo works very well for the short term flare ups. Also mentioned here, is that I have OA in both Knees (right knee is bone on bone) and both Hips AND SI Inflammation. My Rheumatologist also said that Sacroilitis is Ground Zero for this condition, traveling up from the SI Joints up the spine. I can confirm that is Correct. These conditions (Cervical Instabilities) affect everything.... breathing (i have 25 degrees of Dextroscoliosis too), IBS, Bladder & Bowel incontinence, ear /eye pains Tinnitus, and chronic Sinusitis with TMJ issues to boot. Unfortunatly, I am a former 1 pack a day Smoker for over 45 years - 72 YO now. And Never drank enough Water !. 5

[@sunettebrink2012]

Dr O’Shea spot-on! Thank you for this fantastic interview!

[@irw4350]

this is a great video - we all need a doctor like Dr. Barry - it took me 10.5yrs to get a diagnosis even though the symptoms were classic - and I had to do all the legwork myself - my NHS GPs were pretty much useless TBH. Diagnosis = why is a PET scan not more appropriate than MRI for highlighting inflammation? At the end of my tether, having been told by my GPs that there were no more tests or scans that could be done to diagnose my issues, I paid to get a PET scan privately & on seeing this, the rheumatologist v quickly said - within moments - that he suspected spondylitis - as all of the expected areas were showing up very clearly with inflammation ? now on amgevita these last 2yrs with moderate (but tangible) improvement.

[@silkekirby1730]

Very helpful explanation of the disease and current treatments, clear and concise. This is a great interview, Very valuable! Many thanks

[@sunettebrink2012]

Agree 100%!

[@allotmental.]

I've had AS 29 years this month and refuse to take medication. I tried a Coxib once and my heart went crazy. No thanks!!

[@Chiroman527]

My Pain management doctor, a few years ago, recommended Cymbalta to treat my axSpA and Fibromyalgia. Similar to your reaction to Coxib, with only a small dosage of 20mg per day, I was ready to jumop out of my Skin with Anxiety. I should note that I have suffered with Generalized Anxiety disorder for many years. I'm 72, male, retired, a Long Time Sufferer of this Chronic Condition. OA in both Knees (right one is Bone on Bone, Hips and as described here, Ankle tendons and calf swelling. IT SUX Big Time!! Ruining my life and now retired, curtailing any real activities.

[@PowderMill]

After trusting my pain management “Doctor” (aka = money grubbing piece of shit) for 24+ years and taking high dose narcotic pain meds, then he disappeared during the early Covid years. I was FINALLY diagnosed in under 15min at HSS Hospital for Special Surgery in NYC. I’ve since been through 6 separate biologic drugs with no help. (I’m HLA-B27 negative). Walking, breathing , standing are all huge problems now and the pain is the worst imaginable 24x7. My final act in life will be to expose the doctor who frowned on PT and missed the classic signs/symptoms. My family attorneys , my brother in law and his son, are currently working on a multi faceted lawsuit. I have no need for $$…. All proceeds will go to the AS Association. With a tiny bit held back for a large billboard in Times Square with Henry W…’s photo and few lines of text.. St. Barnabas Hospital in Livingston, NJ ? STAY AWAY ! Thanks for this video

[@PowderMill]

I’m so non litigious…. Just very motivated to disgrace the evil pill pushers who miss VERY apparent signs/symptoms.

[@JosRitter]

Thanks for posting, very informative.

[@Prioryllc]

A list of helpful treatments and flare reducing actions you can take (have had AS for two years and largely back to a normal life) - reduce or remove for a week if possible: smoking, alchohol, added sugar - sauna - swim - hot water bottles - fast - stretch and move in water - massage - acupuncture - very light exercise (e.g. a walk) - a lot of water An inversion table is a total game changer for reducing tension in the back, as is a standing table. Both should be used if possible (inversion table max 2 sets of 5 mins a day at 60 degree angle)

[@KateLate____]

Thanks, this is awesome! I'm coming from being misdiagnosed with fibromyalgia for 24 years! I think I have to try an inversion table. Do you get entheses (pain in ligaments and tendons)? I've always flu d swimming too hard, lifting my arms over my head repeatedly.

[@carlyc8233]

I have been recently diagnosed with this condition. I had a very traumatic birth my pubic bone separated. I was 23 when this happened ever since I gave birth I have been in pain everyday there is not a day where I don’t feel pain. I’m 27 my life feels like a waste, my family helps me with both my children I can’t even remember my son much at all when he was born because I was just in so much pain. I have days where I feel like I’m going to die from the pain, I constantly wake up through the night and it’s just so hard to live with I have to try meet half way with moving and not moving. I’m currently on tremytha I haven’t noticed anything yet. I hope it works it is extremely hard to live with my whole life changed from this condition it’s change for my children as well just seeing their mum in pain all the time. I just hope one day there is a cure.

[@mdabdussalam3517]

Of course

[@annamcdearmond19]

I'm so glad I found this video I was recently diagnosed with this at 50 years old and my life has changed tremendously.I live with daily pain all over and my ribcage.And my back my hips my feet especially my spine

[@NeillXSwain]

HELLO DR O SHEA I was confirmed with this condition by you back in 2006 at Toronto Western and it is finally doing what you predicted. I had the MRI this year and its time to treat it as aggressively. I have taken a cortisone shot and i am not sure what to do.

[@dilanairlanda3907]

Very good interview- I have a question : why take so long to see a rheumatologist?

[@lesleymcmullen961]

Thankyou for this discussion. Very enlightening but not too frightening. I would be interested to know if there are other pre-existing conditions which might predispose a person to this condition or have a high incidence of comorbidity. Also, perhaps information about an individual which would encourage a Specialist to investigate a little further than they have other than just the paIn issues, like low grade temperature or other, ie other existing medically diagnosed auto immune disease (for me it's coeliac disease, diagnosed pre school age unusually, I'm now 57, or others like reactive arthritis, in my 20's and Fibromyalgia in my early 30's. Also, very interesting about the different MRI imaging request a doctor should make to elucidate an inflammatory condition to diagnose this condition earlier. Might have to get the doc to have another look! Thanks again, Cheers.

[@frankenz66]

Am 57, and went through very much the same things you are describing for yourself. Mine started at 21 when I had a case of shingles. I apparently never developed a proper immunity to the chicken pox as I had two cases Dr. verified as a kid.

[@amomentwithgod5607]

I have Psoriatic Arthritis but a recent MRI has shown acute sacroiliitis, bone oedema and osteitis pubis with ongoing axial spondyloarthritis, is the AxSpa the same as psoriatic arthritis or are they different conditions?

[@acuriouscelt]

@ A moment with God. I was diagnosed with PsA about 15 years ago. It was caught early as I already had Psoriasis. I suspect I might also have AxSpa as I have pain in my lower back, but because I’m already on a Biologic for PsA, my symptoms are probably not extreme, which makes it difficult to get the Rheumatology team to even acknowledge the possibility, or at the very least rule it out. I find if you already have one or two autoimmune disorders, but you find you have symptoms that overlap with several other conditions and you mention it to the doctors a veil of “checking Dr. Google again” descends on their faces and they just ignore your concerns.

[@amomentwithgod5607]

@@acuriouscelt my Rheumatologist has now confirmed Axial Spondyloarthritis and my meds are being changed from Imraldi to Infliximab infusions although it took four weeks for funding to be agreed on the NHS. I hope you can get the treatment you need.

[@ItsJustMe-nq1dg]

They are different conditions but a lot of the same meds are used. I think the symptoms can be very similar, also.

[@iloveyouyoulovemeify]

theyre pretty much the same thing and closely related the treatments are the same

[@davyg8864]

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 a 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????

[@Jasonbis]

Yes I feel alot of these symptoms as well, getting no where with my rheumatologist after trying 2 biologics and not responding. Feel very alone in this, I used to box competitively and that’s all been ripped away from me because of my symptoms. I wish for better days and a drug to help but yet to have any success just like you

[@davyg8864]

@@Jasonbis its brutal mate, everyday is torture and soul destroying. Ask your doctor for meloxicam they have helped me quite a bit but not to the point where i say i feel great but defo worth a try. I work with tar everyday so my occupation doesnt help only the money that keeps me there but my days are numbered.

[@elizabethr.9359]

Sometimes an mri will show signs of this condition that can’t be seen on x rays

[@aneva2464]

@@Jasonbis hi there these patches that help stimulate our body’s cell healing. I’ve been on them for couple months and it’s the only thing that helps, as crazy as it sounds.

[@naimislam1019]

@@aneva2464 what kind of patches?

[@frankenz66]

I have lost 89% of my lumbar lordosis with this. Middle spine isn't much better, however the cervical spine is still fairly unaffected though C4-C5, C5-C6 ligaments show early sclerosing.

[@woolofnelson]

Hello Thank you for the explanations. What about AIP ? The way Paleo food can help and ice bath? Anyone? Someone tried that? SN

[@AmerSakr]

If anyone suspects that he has axSpA, please read about Mold toxicity and Lyme disease; this might be the underlying cause of your condition. I have been suffering from it since I was 14, and now I am 37; it turns out that it was due to my mold toxicity, and withing a couple of weeks of addressing this problem, I feel 60% to 70% better.

[@KateLate____]

That's so interesting! There are a lot of people who get diagnosed with chronic fatigue or fibromyalgia, both much less clear diagnoses than axSpA, so mold and Lyme come up fairly on. I love a good miracle cure story! How'd you treat mold toxicity though? Was is it recent or past exposure?

[@AmerSakr]

@@KateLate____ Exactly, if someone has mold toxicity or lyme disease, the cascade of inflammation in their body doesn't seem to stop. Shortly before I discovered I have mold toxicity, i was suffering from so many symptoms I thought I was aging prematurely. It turns out, that an exposure to green mold 23 years ago started my disease, fast forward, the mycotoxins I have gathered over the years reached a point where my body couldn't handle it anymore after I discovered I have a tiny bit black mold in the bathroom I am using, so I reached rock bottom. How am I curing myself? I am following a ketogenic diet, keeping a food log symptom tracker to eliminate possible food allergies (which mold is known to cause) i am taking binders to help escort these mycotoxins out, and patience is my best ingredient. As the days pass by I feel much better than the day before. My last step would be to get anti fungal nasl and oral medications, as mold can colonize in the sinus and the colon only. Btw, 25% of the population miss the gene responsible to eliminate those mold toxins from our body. Immagine how much chronic diseases, and autoimmune diseases, or even Alzheimer might all be rooted to these biotoxins and we were never diagnosed. I hope that helps.

[@allotmental.]

Avoiding as much yeast as possible, helped me quite a lot.

[@KateLate____]

@@AmerSakr I feel I've already been down this path, with no success. I was seeing a nutritional and environmental doctor in 2010. I'm more cynical now. I think all I did was spent a lot of money How can you be so sure you were exposed to mould 23 years ago? Did you have a genetic test to identify the gene that's affecting your ability to eliminate mould? I live in Australia, so Lyme is considered rare if non existent, despite people claiming to have it. How easy it is to treat this and see results? I don't want to do another whole oh try this strict diet for months, to see a 5% improvement that you can't even really measure. But I am sore and desperate for relief.

[@petersiddons9644]

had it for fifty years pain free now don't know why

[@hannahb3596]

Interesting. Can you think of anything you have changed?

[@Ohhollyf]

Possible you totally fused.

[@mickeyfoeller771]

Could a flare in the knee be misdiagnosed as a meniscus tear?

[@littleleftnut6864]

If you get imaging done you can likely see if the meniscus has detached.

[@treecek]

As a massage therapist, this sounds just like the hip jam that happens from excessive running. the only reasons it seems like "genes" is the reason is because body types are the same as your parents

[@solomoncollection]

I’m curious if there is any correlation with scoliosis. Do they go hand in hand or one causes the other?

[@ItsJustMe-nq1dg]

I have wondered this myself. I have talked with many people that have AS and scoliosis. I have a moderate thoracolumbar scoliosis. So in constant pain. 😖

[@lr9152]

I have both also!

[@iloveyouyoulovemeify]

its also hard to get a dx specially in America and if you are brown or a woman. it took me 9 years before a dr would listen.. take your biologics to prevent joint damage!!