Ask me Questions about my Ankylosing Spondylitis, Telling about my pains. 09

[jsteck1956]

Hey Tylar watched your vid's for first time tonight, and it was great just hearing your voice and seeing your face again. Sorry I missed ya on my last trip to Cal. I'm now seeing new doc here in Texas so makes it somewhat easier. Hope all is well, and message me on facebook when you get a chance.

Jerry

[Crackles666]

It's HLA-B27 gene, surprised how many people state this wrong...pays to research.

[mcmedley789]

in the beggining did they say if you had the gene HL 57. I think thats it. the doctors said thats what predisposed me to ankylosing spondylitis. I got it at a young age 14 years old they want to put me on so many different meds which ones helped you the most.

[medicinesocks]

thanks for this, we're grateful fo space to share how it feels to live with pain 24/7. i'm 57, AS & fibro i'm told, misdiagnosed for so many years it wasn't fun or funny. over time I've pretty much stopped opting for meds, pharmaceutical approaches never did work well for me. weighing risks vs benefits the risks are no longer worth it in my case, but i don't mean to cast aspersions on anyone who's found something they can take that's helping. hang in, life's still sweet, go easy on yourself.

[rockcityaudio]

Hi,I went to see a Buddhist healer,they don't charge fees you can just give a donation if you want.Look them up.bodybuddha.co.uk. youtube.com/watch?v=NZodjSlfon­Q

they helped me!.good luck.

[cainede]

@antjam666 I am on Simponi too, first injection that I have seen some positive pain and inflamation decreases. How are you doing on Simponi?

[cainede]

Hi, I also have AS. I am a female 37, and have had AS for about 11 years. I am on Simponi injections along with sulfasalazine, lodine, pain meds. etc. Are you married? I am curious how you feel about marriage and having a family with a chronic pain disorder. I am married and chose to not have kids because of my pain and disability. All you AS patients please respond, we need some kind of group for us up at 4:oo am like myself!

[medicinesocks]

@cainede hi, just have to smile, only 3 AM here, but I can relate. if I had realised how hard it would be to be a mom with AS, I may not have opted to become a parent, but the kids happened anyway and I'm not at all sorry. They turned out to be lovely people! Too, distraction, for one thing, is a tried and true strategy for pain management that works for me, since pills of any 'script' just have never really helped at all-- kids have been a compelling, major distraction from the pain.

[rockcityaudio]

@antjam666..hi mate,yeah I had all the blood tests and x rays and Im fine they I dont have it,so I hope not.

[Bitt4]

hi do you get severe spasm/cramping? I have A S and I am pretty bad . i am fused cervical c1 to c6 thoracic is messed up with a few heniation as well as my lumbar. i have bad hips both sides SI joints i get shots in there every other month rotating from left to right . i also have very bad cramps severe and in my arms hand feet calves. i would like to know if you do. they say AS affected my nervous system and i have severe bilateral nuerapathies in legs and arms and hands.. med includ lyrica now

[Bitt4]

hi do you get severe spasm/cramping? I have A S and I am pretty bad . i am fused cervical c1 to c6 thoracic is messed up with a few hreniation as well as my lumbar. i have bad hips both sides SI joints i get shots in there every other month rotating from left to right . i also have very bad cramps severe and in my arms hand feet calves. i would like to know if you do. they say AS affected mt nervous system and i have severe bilateral nuerapathies in leg and arms and hands.. med includ lyrica now

[cengizmelb]

I have chronik AS.Started 9 years ago.I was 37 years old.When I had first pain,I wasn`t move my body,soo my body locked.I didn`t use any pain killer.when the pain went after 2 weeks,I started exercise.Exercises does help reduce to pain.My experience for the AS to tell you;Don`t lift any heavy objects,walk in the pool with warm water,don`t rest too long, move your body,don`t walk or stand up long times.I hope help these who has AS.

[ASsufferer]

Hey man, how have you been? I havent heard from you n a long time so I thought I would say hi! How all is going as well as it can be for you. Talk to you soon!

[rockcityaudio]

Hi Man thanx for posting these videos,very helpful and supportive.

I may have it because I developed Uveitis in my eyes.Have you ever had that?.

they took bloods and I'm waiting for the results later this month,do you also get stomach problems?god bless man...

[trebor8nat]

@rockcityaudio i think u have it

[cainede]

@rockcityaudio I get horrible stomach issues and have uveitis also. I am female 37, and have had AS for about 12 years. What meds have you tried? Are any meds making a difference for you? It is incredibly lonely being the only one (besides dr.s ) that know what this disease is and how it feels. Write back if you wanna chat about it. Jen Caine

[jennadrums]

I love seeing a nice normal guy having this problem (although it's sad) I'm 25 and feel SO alone. I went to pool therapy for arthritic people and would often get mistaken as the physical therapist there instead of a participant. I've been misdiagnosed since I was 19 with everything possible and finally diagnosed with AS (I thought I had it years ago after researching Dr.Google style). Starting Enbrel soon, very excited. Thanks for posting these!

[cainede]

@jennadrums Hi Jenna, you are not alone! I also am a female with AS. It is very lonely because about 99% of people i talk to have never heard of AS. Hang in there and right back if you need to chat. Jen Caine

[jasoli52]

Anky-losing Spondy-li-tis I have it too, had to master saying it before I could tell anyone what my chronic pain was from.

[tjsaudio]

my dad has AS and he is now 54 and 1 new hip going on 2 neck, back, hip (used 2 b4 the replacement), chest are fused. he is always in pain. but better since his hip. he just goes day by day and does what he can or what he should not do. but don't give up he hasn't and wont. Also Look at Mick Mars, and Ed Sullivan they both have got it.

Good Luck JIM

[camerongraham100]

And for all of us that have AS please don't give up. It is a vary depressing problem we have but remember to have a positive outlook on everything you do. It is hard to drive a vehicle because i cant turn my head so i got a mirror on my sun visor to see out both sides to make a turn. I sleep in a soft bed because i cant lay on a hard service. please do not sleep in a recliner you will take the shape of it. Look me up on face book. Cameron Graham Liberty tx

[camerongraham100]

i am a 35 year old male and i have AS sense i was 15 and i tried all kinds of meds and i was like you and couldn't walk and had a girlfriend help me upstairs at school and around anywhere i went. I lived on advil sense i was 18 years old and it worked great till about 4 months ago. i took around 3 to 4 doses of 4 pills at a time. i lost about 75% of my movement from tail to head. i am now taking indocin 50mg 3 times a day and i have only about 1/4 of the pain now than i did have' works great.

[jasoli52]

@camerongraham100 Is it called Indocin or Indomethacin? Is it an NSAID?

[ufbr35]

Have you been successful with getting on ssi yet?

[jasoli52]

@ufbr35 I have been waiting 3 years, had trial and AS is not a qualifier, it only causes debilitating chronic oain all day every day, different locations usually, makes you sound crazy to the Dr's for years. My Dr's are going with Degenerative Joint (disc) Disease, that is a qualifier. Fucking beurocrats...

[heahandfull]

you have anything going on with you eyes im 33 i had it for years mine is so bad by the time a doc told me what i had i had to have sugery on my neack

[NicolaWyrd]

I'm another one with AS. Not fun is it. Good luck to all of us.

[jasoli52]

@NicolaWyrd Thank you from all of us and same back to you. I wish more people could understand, but, because most of us look normal, they will NEVER know unless it happens to them.

[erequere]

hello , I´m from spain , I have spondylitis , I have 2 years with problems in my column before they found my spondylitis , now they give me a medicine call REMICADE , today I dont have any problem , this medicine its very good for me !!

thanks for the video !!!

hablas español ? be lucky

[curroydebora]

@erequere

Hi Erequete. I am Irish living in Barcelona for 20 years, recently diagnosed with AS. Haven`t heard of Remicade yet. ...... Pues yo si habla español, i catalá també!

[Chadstravels]

middle 20's male here with reiter's. Did you ever think about an underlying cause? (Mycoplasma or other parasites, viruses, bacteria, fungus) Do you ever think about 'ending it'. I do... Best wishes man. Thanks for posting...

[kg4st]

@Chadstravels Are you currently on antibiotic therapy? If so, how is it going?

[Chadstravels]

@kg4st I am about to start come Aug. for 6 months... Z packs first, then doxycycline, followed by bactruim. I tried a theraputic course of Flaygl with no success (except anti inflammitory). Have you attempted anti biotic therapy yourself? If so how did it go?

[kg4st]

@Chadstravels On Minocin for 1 1/2 months now for suspected rheumatoid arthritis. I've noticed some improvement in strange, random pains. As far as the arthritis, not much better yet. I've read that it may be 6-9 months before I realize the benefits. Good luck to you my friend. I'll pray for your recovery.

[Chadstravels]

@kg4st Yeah my doc said about 6 months is minimum for results and it might even take as long as 12, if it does indeed work...I will be praying for you in your recovery as well. Keep me updated as I will do the same... All the best to you

[kg4st]

@Chadstravels Thanks, It's good to have friends in the struggle.lol..Send me a friend request.

[dewey695]

How about fatigue? I find this is one of the worst symptoms. Sometimes I find it hard to do anything, even read a newspaper because of the tiredness. I think this is one of the least understood symptoms.

[Dinamic1998]

Hi! Would like to know where your feet pain are?

Thanks!

[MrDelrithmean]

im 14 and got diagnosed a year ago.

[smo200]

I also forgot to say that no one in my family on either side have A.S., nor do they have the HLBA-27 bacteria marker in the blood. However, I do have the hlba-27 in my blood (worst blood test I have ever had). Anyone else have it and it doesn't run in the family? Also have you tried to change beds? We changed to a faux temperpedic (notice I said faux, walmart carried them) and it helped alot. What helped the most though has been the chiropractor!

[medicinesocks]

@smo200 i don't carry the genetic marker but the rest of my blood work and an mri made the rheumatologist decide that what i have going on is AS. i've complained of some random scary pains not in my spine which he thinks is fibromyalgia. i don't find diagnoses and labels all that helpful. pills neither. NSAIDs did awful things to me and i've never been able to take anything narcotic without throwing up. i've often wondered if a better bed might help some. stress management helps, pace yourself.

[smo200]

randy - i hear ya there! I wish others could feel the pain! They don't understand and call me a hypochondriact. I am the first to be able to tell someone when a cold storm is coming - I can feel it in my bones. After about 10 different meds bewtween anti-inflammatories, pain relievers, and muscle relaxers... I have opted to start seing a chirporactor, and I finally have been gettin some relief. i also have fibromyalgia, but alot of fibro A.S. patients have fibro.

[RANDYCUJO]

I am 29 years old and was dx at about 23. Before the DX I a was unable to walk up stairs, excercise anything, couldnt work . Now I take Enbrel and painkillers.  I am able to work but it takes alot of energy out of me and I often have nothing left for my 2 daughters and wife , but what do you do you gotta make money . Life is a struggle but with these medications it is less of a struggle. I just wish some of my family members could walk a week in my shoes and then try to criticize me !! Karma

[LAHOPEFUL]

thank you so much for your videos on AS. I'm asia, 30yrs old. on 12/2/09 i was diagnose with AS. I've seen numerous specialist and finally after 10yrs i now know what i have. n after researching the disease I'm trying to stay positive but for the 1st time in my adult life i feel like a scared little girl. i have a doc appt on the 14th with my rheumatalogist to go over some sort of treatment and medication. thanks again for the info. i hope you are doing well.

[guanglu63]

hi guy, you are done good job. very inspired! I have AS for about 18 years now. I have both hip replacement. pain everyday. but I am encouraged by you.thanks

press on!

[TieDyeCreek]

I hear you it took forever for me to get diagnosed. Was crawling at times in the beginning until the dx was made and got some help. Hope you're doing well as can be! Peace&Light

[Ssofisol]

I Absolutly understand you, how does your family and friends act about your AS? Imagine AS here in Mexico... Im starting wiht Remicade. Hope is now my medicine. Thanks.

[jscolley01]

It is great you still have a sense of humor.

I have not been positively diagnosed with AS but when reading about the disease I thought 'ah, yes!' I do not have the HLA-B27 marker but, from what I understand, about 10% of people with AS don't have the marker. I know it is what I have and my doc suspects it also.

Just remember you will have good days too.

Best Wishes.

[astrid21zna9]

I just got diagnosed last month with AS, After going through the last year being misdiagnosed, unsure and dis functional. I took my second shot of Humira tonight. I guess what I am looking for is someone around my age or any really to talk to (I am 24) I guess I can count on youtube.

[skitles242]

I'm 23 and got diagnosed 6 monthes ago. I am having early symptoms but not shots yet. I am currently just taking Naproxen.

[DenCoBro]

Bro I have AS, and it stole my hopes and dreams, maybe I will win the lottery, because ssi won't give me the life I want, or should have had.

[animalxfactor]

Your so cool and positive, Iv had spondy for 20 years and all the pains you have, its good to see others that feel about it the way I do as i know some dont cope at all- what choice do we have eh? Good on you mate, gotta make the best of it- the life we have that is. Soo.X

[ASCanadian]

My eye speicalist and physio therapist think i have it, but my doctor doesn't. When telling him about my back pain (and had the area of pain circled on my back) he asked "Did you fall down? Did you hit your spine? Did anyone else hit yoru spine? After asnwering no to these questions he said, "well you don't have a spine issue". I'm not waiting for the Rheumatologist to confirm July 3rd that I actualy have AS. The back pain is so INTENSE I usually can't sleep in my bed for longer then 3-4 hours.

[ASCanadian]

Hi,

I'm in the Canadian Navy, and started having intense back pain March 1st. March 19 I came down with a serious case of Iritis (a form of Uveitis). The doc ordered a ton of blood work (results were back in 2 days) and after seeing him every 3 days for 6 weeks he asked how I was doing. I said my eye was great, but still can't sleep due to intense back pain. He asked if he had seen me before and if he had review my blood work, ends up I tested positive for HLA-B27. Still waiting 2 confirm AS

[wisegeorge365]

When you apply for SSDI they ask you: "What is the nature of your alleged disability?" That pretty much sets the tone you can look forward too from then on.

[TheJulieShow]

Aww it's a "Dr. House" cane! I was misdiagnosed for years. My diagnosis is new and I'm pretty miserable with these flares. Tons of pain! I also have a secondary condition eczema on my hands. It has kept me in the house for a long time now. It's really tough because my hubby doesn't understand, he has no interest in learning about this disease. Thank you for being so encouraging!

[v508]

hi, i have AS for about 7 years, same as rhezekim, some sport accident trigger the genetic marker, about 6 months ago, it got worst and i go for a medical check up, which was when i know that i have AS, the doctor told me that i have 2 choice of medicine, one is anti inflamatory drugs and the other is steroid, i choose the first one, long stroy short, i started learning yoga, and what do you know, after 3 months, i'm 90 % free of pain, i think everyone with AS should try, it hepled me alot !!

[Rhezekim]

I have AS, have had it since 1980 at the age of 23. I was in the Army when a blunt force trauma caused the genetic marker to become active. I am 100% Service Connected Disabled American Veteran and get decent health care for free, had a right total hip replacement Oct 06, I have been married 30 years and have two kids who don't have AS, you can live a great life, just have to know your limitations and except that, find what you can do and excel at it, that is what I have done. Best Wishes.

[nelly19as]

I just want to say thank you for all your Videos i have AS and Rheumatoid Arthritis. and with the two of them i now have Uveitis and just after my 19th birthday i found out i have Glaucoma,  so thank you for giving me some hope.

[myspinehatesme]

hi, i have just been told that i have a A.S. ive had bad back pain since i was bout 16. kept geting told that ill grow out of it, or its just in my head. i now know that im not crazy! i have started nsaids and on pain managment plan but as you know it dosnt take it all away. im so tired all the time dont get much if any sleep. i try to keep the pain away as much as i can as i am a single mum of three boys and there very active.

[baconsoda]

Hi, I have AS for 30 yrs, got psoriatic arthritis 5 yrs ago that finished me off work wise. I'm on Humira and it's good stuff. You described your pain pattern and mine is much the same esp the bit about the 'spongy spot' in your spine. I think mine is like that and when I lie down in bed I get a violent sliding or slipping movement in my spine that is very painful. My wife can actually assess the intensity by the sound of the movement, like a grating noise. Ever had that?

Best wishes, Brendan

[jhorrall]

I think you are a doll. I am so glad you make your videos. I am sorry you have to deal with this.