Can't sleep, pain, bored, part 1 (Ankylosing Spondylitis)

[HollowmanHM]

yes all seems well known

lg from Berlin

[nashar65]

u have to ignore pain and force the joint to move and have to take medicine in the beginning when the max possible movement is restored and u continue regular exercise pain will go to 5 %, i do not take food in night to sleep in prone condition (on the stomach) i take like one sandwich & acup of tea at 6pm only.

[nashar65]

I was diagnosed a.s. 9 years back, firstly i was treated with Nsaids and exercises then started reducing so medicines were also redced now i take etoricoxib 60mg in the night sometimes. In morning i take powder almond (7 or8) and mix with a glass of water and raisins (which has seeds,big one, 7 pieces) empty stomach then for one hoir i dont take anything.doctor adviced me to sleep on stomach hands beside me. i am 95% fine now. i go to gym i am fine.

[lilmisschachty]

i also was diagnosed with a.s..... im going through a hard time as of now.... feel very unsure/disconnected..... ive looked for a.s. locations and there is no locations in minnesota, i guess ive looked for someone to connect with threw this time that close..... i would post a video but i dont know what i would even say..... but hang in there and hope the best for you!

[MrHodo123]

move to aus



[AaronSehlin]

My spine is completely fused and now its moving into my neck also I was diagnosed with hypothyroidism and the state refuses me disability but I'm fighting they also will not give me any pain meds I was told that its not a treatment for AS. I am however , at times in excruciating pain that stops me dead in my tracks. I cannot drive a car and I drop dishes alot when I get attacks! this is a horrible disease I can't believe the grief I get from so many health care professionals!

[AaronSehlin]

My spine is completely fused and now its moving into my neck also Iwas diagnosed with hypothyroidism and the state refuses me disability but I'm fighting they also will not give me any pain meds I was told that its not a treatment for AS. I am however , at times in excruciating pain that stops me dead in my tracks. I cannot drive a car and I drop dishes alot when I get attacks! this is a horrible disease I can't believe the grief I get from so many health care professionals!

[BrutusGumdrop]

I know this is video is a few years old, it personally got to me and I just wanted to see if you had any updates on either how you are doing or your struggle with disability. After 3 years in pain I just recieved a dx of AS. And from the sounds of a lot of other people stories I was lucky to get it that soon. I struggle with the pain and walk with a cain. for those who say "get over it"... it is different for everyone. Physically not just mentally. Malinger is someone who is faking.

[Bristolbrave]

I ve got similar symptoms to yours. Sulfazine and antibiotics (azythromycin) in conjucton with Fluconazole worked wonders. I stay clear of starches. Klebsiella is the organism of concern for you. Check it out. You can get better. kickas.org.

Good luck. ps steroids like prednisone will make you worse in the long run.

[chickenvirus]

You need to get on remicade or humiera they changed my life and I'm in the same boat

[prowork]

This breaks my heart man. I feel for you, and am praying for you and others who are suffering. I truly wish you the best and hope you receive the goodness you deserve in life.

[sunderlandoful]

Did you manage to get disability in the end? I really need to know if I should apply. I am 28 with your exact same symptoms and can't work anymore. Infact I can't take life anymore. I would end it all tomorrow if I could

[AdiSgoel]

i am daignosed wit this at 19 yrs age still fighting

[Economist999]

I have AS as well and I have cured though its uncurable. Hey man don't get depressed try everything you can to cure yourself. If you are interested contact me.

But don't make this thing such a big issue. Comoon you can overcome this!!!

[steffiejoable]

hey you .....I know where you stand. last night was a bad night for me. Not my worst but bad. I found you stuff yesterday and I want you to know it helped me make it thru the day. you should do more. I hate my pain not my life. keep up the good work ok.

and most of all keep the faith.

[beckerbuffalo]

I have AS too and it sucks. I refused to tkae enbrel after reading the side effects. I take mortin and lortab.

[ookkonaaoulusta]

i am 46 and have had this disease for 23 years. it has gotten worse with age.

[MrsScarlette80]

Baseball is your CALLING!! I could relate to pain which in turn laughing at our expense hurt you funny fucker my ribs are killing me, but yeah not funny i know. I was diagnosed at 27years old 2 years ago, no fusion found yet, but lots of pain!!

[missshebella]

hope you at least stopped smoking;)

[ar550n1c]

Hey... I know what you are going through! I was diagnosed with AS when I was 16 years old. A Sophomore in high school. I am now 24. I KNOW WHAT YOUR GOIN THROUGH!

[gda321]

After reading up and searching this seems to be all the symtoms im suffering from and my dad has really bad arthiritis in his back and neck so it's even more of a worry. Any info on this would be really apreciated, how do doctors find out if you got it? thanks again

[backpain99]

@gda321 they can run a blood test in search of a specific gene called HLA B 27. That along with some x-rays and a measuring tape used by a doctor, will lead to a diagnosis. Hope this helps.

[gda321]

@Backpain99, thanks alot for the info i really apreciate it.

[medicinesocks]

i got ssi on the first try, with an mri and a doc's assertion that my AS was real, and debilitating enough to qualify me. i was so surprised, not to have to argue my case! just lucky, i guess.

i don't take ANY meds... the side effects of anything, even simple stuff, can be devastating, for me, worse than the AS pain for sure... keeping myself warm and well rested really helps... distraction techniques, laughter, love, fun, interesting work are the best therapies i've found. best wishes!

[southernangel121]

@medicinesocks

You are VERY VERY Lucky I had to fight for over 3yrs to get mine and was on lots of meds and have LOTs of fusen already. Mine started very early in life. I actually only got mine because the congress woman's in my area office got social security to pull their head out of their butt and get me into court in less then 2wks. I have days where I think about how much money I use to make working goverment jobs and now on SSI/SSD. But you learn to adjust and budget but still sucks

[mike3yo]

Hi, I've was diagnosed with AS 2 years ago. I couldn't walk for about 4 months, got corticoid steroid injections on my achilles tendon, knee, and interior hip joints. After, I tried out remicade and ever since, AS has receded significantly. Good luck, and hope for the best =!

[stiffmeister0802]

Nobody has told u..the word u wer looking for is DESTINEY!! I've had AS since 18..now 39 and it's ruined my marriage, my health..my life!! Partners don't understand the pain, fatigue, shortness of patience. I have anti TNF drugs (etanercept). At first they wer a miracle cure but my body has got used to them n I'm back in pain now..bugger!!! Good luck geezer!!

[eiwaz]

Good luck with your disability claim. I've heard it's difficult for those under 50. I knew of a young man with Still's disease, another type of inflammatory arthritis. He even had much of his bowel removed due to the disease and was still denied. He passed last year. The inflammation had centered on his heart and caused his demise. Sad that our society fails to understand the plight of the disabled. I hope you can learn to live with this and find some joy in life. I too have AS. It's wicked.

[SiriusRyanw]

I think "raison d'etre" was the word you were looking for. Reason for being, in other words. I felt the same way about yoga, until I got diagnosed with AS this morning. Still hasn't sank in yet.

[rross27]

I've had AS for 25 yrs now and I can tell you for sure that "nightshade" vegatables will set off an attack. Also any cold virus, tooth infection, or bacterial infection of any kind will set off an attack. Use the steroidal cream, pills, or eye drops at the first sign of an attack and hit it hard. Keep skin cornstarched and dry in any hot area, cut off all fingernails. Use pharm. grade salmon/flax and primrose oil, for eye, skin, and depression problems.

These things helped me 8)

[Jppeterson5]

Have you yet to try TNF blocker medication, like Humira, or Remicade? You can get it for free thru the company. My CED rate is down for one thing. I mean, I still have SEVERE fatigue, and pain, but I think it is helping a little; i've only been on it for 4 months. It can't reverse the fusing i don't belive; at least it hasn't for me, but it does help a little with the inflamation. I will keep you updated if it helps me further the longer i take it.

[Jppeterson5]

Hi there. My name is Janae. I'm 21 years old and I was diagnosed with AS at age 20. Already over a year I have been hospitalized a few times, and have gained significant weight due to cortisol and prednisone treatment. I feel your pain. It is hard to do pretty much anything a person without this disease can do. I feel pain EVERYWHERE. My legs are what keep me up at night as well mostly; the pain just gets so intense. Just thought that you should know you arent the only one going thru pain.

[VisionQuest2012]

AS numbers are growing it seems. It's colony collapse disorder for humans. Arthritis is the leading cause of disability, at least that is what the CDC says. At $40,000 a year for the injections and the numbers growing, someone is making a lot of money.

[eternalease]

fluoride consumption,

sick building syndrome,

free radical exposure,

excessive refined chemical consumption,

depleted nutritional content in foods,

the chickens are coming home to roost.

each new generation is being left with a larger and larger "tab" of genetic mutations from the destructive transgressions of thier forebearers.

and the doctors say there is no point pursuing dietary treatments because they arent profitable? our environments are toxic and people wonder why we are sick.

[dale3858]

When I started all I had was aspirin. I thought I was misdiagnosed, felt like I was dying. Worked in a lumber yard piling lumber. It was killing me, 36 aspirin a day just to move. Then Motrin for 8+ yrs, Naprosin for 10 years, and now Celebrex. Of course all kinds of muscle relaxers and painkillers of all kinds along the way. Lots of problems with depression .Took 10 years to get my disability and then they screwed me over. KEEP MOVING, IT'S YOUR ONLY HOPE. I heard remicade puts it in remission.

[dale3858]

I had completely different plans for my life too. When I was told about it in the mid 70s, they should me 3 photos of a guy when he was 20, 30, and 40 years old. He went from a young good looking man, to a man that looked 75 yrs old with 2 canes. It doesn't have to happen now with the new meds they have today, but when they say stand up straight, they mean it. It's a constant battle. I know how you feel. When they told me about it I was a tough guy, still am but it was a hard pill to swallow ..

[dale3858]

I've been in a war with this disease since I was 17 yrs old. My docs say it's the worst they've seen... I'm 51 now. I've dealt with it well considering, but I'm in big trouble now, as if I wasn't before. My physical therapist hurt me real bad awhile back, don't know if I'll ever get any better. I depended on what little movement I had for my survival, now I'm in big trouble, I think she broke my neck.

Take good care of yourself. It's a long and tough road ahead for you.

[TheJulieShow]

I think you were looking for the word "dream". That makes me sad for you.

[Surf2130]

hey everyone! Sorry it has been a while since I have been on here. People are asking me what medications I take. As of To date, I'm on REMICADE,METHADONE,OXYCODONE,P­OT, and stretching. I'm a sever case of AS. some don't even know they have it untill in their 40s or 50s.

[tracy10UT]

Were you ever exposed to chemical toxins? I mean did you ever work in a factory or anything like that? I too have all of the symptoms described and much more and am concerned about the effects from flouridated water as well as living in a Canadian area for 7 years where agents orange, purple, and white were sprayed.

Surely there can't be anything more painful than this disease!

[a692poundgorilla]

This disease, ankylosing spondlyitis, is thought to be acquired through genetics. It can be set off by certain factors, but mainly people begin to notice the pain in their teens and it gets progressively worse. Usually its back pains associated with joint pains, for instance I have this disease and get joint pains from my fingers, wrist, elbows, shoulders, hips, knees, and heels. If your not sure see a doc.

[daenz]

Hey, i got AS as well. Got diagnosed at 18, 27 now. To be honest, I never really researched about the disease myself, since for the longest time i thought i was the only lucky winner with this problem.

It started on my feet, and then moved on progresively from there to lower back, uper back, neck, left shoulder, right shoulder, then the worst of all, rib cage to the point that it hurst to breathe, and last week my right hip, really sucks cuz i cant even piss standing straight.

any tips?

[jhorrall]

What type of pain management are you on?

[jiggaflex]

i live in canada and ive had AS since i was 14, i also have degenerative osteo in my hips, Rhematoid arhtritus, and i have psoratic in my feet, im fucked in other words.

and i somehow cant get healthcare insurance to pay for my meds

i take like 12 tylenol a day and indomethacin, which i have taken since i was 14 (23 now)

i was prescribed Enbrel, and ill tell you something...

its been absolute HELL trying to get this 40k a year drug paid for. i make 20k a year after taxes

[Fflamas]

Yo tengo espondilitis...

desde los 8 años de edad...

agregado con fibromialgia secundaria y condromalacia...

saludos desde mexico

y que hoy te sientas mejor

[bigbaymayor]

i got AS also.Stiff neck and stiff lower spine

What is your e-mail.Would like to chat with you

[Smoggybil]

I am now starting to get my life back together and im no longer depressed but i urge anyone to see there doctor straight away if you start to get the pain and dont let it get on top of you as i did. Im sorry about not being able to get disability but here in the UK i get more money than some of my friends working full time which is stupid really but id rather be out working than sat in my wheelchair at home.Good luck to everybody battling against it. :-)

[Smoggybil]

I have AS and it basicaly ruined my life but it was my own fault. I still worked even when the pain was terrible and just took more and more pain killers until i could not work anymore but as a typical male i didnt want to go and see a doctor. I ended up just sitting around at home doing nothing until basically i couldnt move. I ended up in hospital for 6 weeks about a year ago and then alot of rehab but i needed both hips replaced,ive had 1 done and the next 1 in the new year.

[davieboy1970]

Hey dude this is Dave again well I finnally had an MRI doen a week ago and I have scheuermann's discease Don't really understand it but it is not curable. I guess I've had it for a long time just never knew it It does limit me and causes alot of pain so I am gonna try to get disability alot of people have told me I will have no problem getting it. So now I can really say I know what your going through because I also have a back disease. Keep in touch. maybe we can share pain stories.

[davieboy1970]

yeah sorry dude that sucks you getting denied. But what I have heard from so many people is that you always get denied the first time I don't know your case was that your first time applying? I know you have to apply more than once maybe a few times and you have to have a good lawyer. eventually you will get it. Our goverment sucks man. Keep trying bud hang in there.

[Surf2130]

You say you have had surg for AS?? I was told this wont matter as the bones will just continue to fuse. Have you tried Remicade??? It's pretty good stuff, and seem to slow down, stop the fusion process. With there was more I can do, I'll pray for ya.

Ty

[davieboy1970]

So If you don't mind me asking are you getting disabilty for your condition? I have lower back pains I have had them all my life On and off sometimes very servere but i still keep on working. I am in real bad pain right now. I am thinking about trying to get disability just curious if you are getting it or not? I feel your pain buddy it sucks to have to deal with such pain mine is so bad I can't walk or sit or even lay for too long at a time.

[Surf2130]

No.. Of course I don't mind you asking. You can ask anything you like du. well.. ya.. Disability..!!! Pretty much these days to get some help, you need to be missing all your limbs and be blind at the same time. To get a little bit of money help each month. I have lawyers working on my disability case. You should probably see if you have AS du. Good luck, and be strong. I still do anything I can do, and keep working hard. They hold that against you tho.

[jhorrall]

Your video is very touching.  A friend of mine (age 26) was recently diagnosed with AS. I don't know what to say but I am glad you are doing better with the pain. I am worried about her.

[Surf2130]

YES EVERYONE! I'm sorry for not posting another video in a while. But.. I was able to finally see a Pain Dr. and he put me on Methadone! it's a harsh medication, but works very well. With the Remicade infusions and Methadone, and Norco for PRN break through pain. I'm doing very well! It's different. havn't been able to do what I can do now for a long time. Thank you all for writing me!!!! LOVE and PEACE!

[baracuda40]

I have As for 20years, not diagnosed till about 20, had shed loads of drugs prescibed for me over the years, in the end i just cope with the pain (sometimes with the help of alcohol) although slight damage to liver is side effect of that.

Keep battling away guys n gals, there are days it hurts like f*** but the days that it dont are a pleasure.

[HIIOkopf]

I hope, you feel better now.

I surch for a Diagnosis, the last 2 Jears.

It is probable Morbus Bechterew, ist the

same only anouther Name.

[Surf2130]

Ya.. It's pretty much the same thing. I think. Your right.. just another name.. Hang in there, and be strong.

[bobbbob22u]

Hi there, ive got the same thing, im 33 now, wheelchair etc, cant move head bla bla bal. Anyway, what i really want to ask is have you experimented with ur diet, i left it too late, but have found that cirtain foods can triger large reactions for me personally, if u want to talk about diet then id be happy to let you know what ive learned.

Yours

Bob

[Surf2130]

I have read that certain food effect the AS. I have been on the diet for some time now. Don't really see a huge difference, but.. oh well. I'm sorry you have ended up in a wheelchair. they tell me, I'll prob be the same, as I'm alreading starting to fuse as 26 years old. I'm now 28 and can't work at all. well.. take some photos here and there and sell em.. lol... Stay in there bud.

[darkman116]

Hello!

My name is Kristy and I have AS since the age of 10. Things are getting so bad.Today I am in soooo much pain. I have had 21 surgerys since the age of 10. Need more but not enough bone left in my hips to do that. i want to scream and cry at the same time. WHY did I get this I wounder sometime. I guess everyone does. I will send a vidio response when I fell better. Oh I no how the SSI goes. It took 5 years to get mine. Good Luck and hang in their. Thanks for leasoning to me. get back to u