Ankylosing Spondylitis - Personal Opinion on Coping

[stetelle]

I have this shit and everyday I wanna kill myself. Lost friends, life, gf, university, everything.

I'm 20 and I'm feel with 100. Maybe is better die.

[elcarim77]

Excellent video on AS..Well done.. You find the words I fail to find when trying to explain this condition and the affects it has on me /us spondy types.. You should get on twitter along with us other spondy's as your videos are a great help and for that I thank you!!

[daybates]

You say you are not sure about the starch , Have you tried not eating starch ?

Do it now , You say your neck and back are fusing these are irreversible so just give it a go and you will be amazed by a book by carrol Sinclair google it Or you could borrow mine :-)

[uwdcry2]

Thank you for sharing! You are funny. Dx this year with AS. My first pain was when I was 12. At that time I was told I had Scoliosis. I wore a back brace for a few years and just dealt with the pain. My Iritis started at 29 but was only tested for RA which was neg. My "focus" was always on the back. Had surgery at 43 to correct some of the curves. No connection to the back and eyes until this year!! Now 53 yrs old. New hand pain got me to the right doctor. No help so far... just glad for Diag!

[sunderlandoful]

Do you feel angry towards your GP? I had the same problem at 16 and kept getting told "your just young. Its back pain." until after 15 visits and 4 misdiagnosises he sends me to a rheumatologist (by accident i might add). Everytime I see him now I feel hatred. Im a 28 year old guy who used toplay rugby 5 days a week and now every day is a battle even though Im on anti-tnf. I agree with the standing tall thing. I go to the gym 3 times a week. Keep fighting to stand tall mate.

[wilko2603]

totally agree with the exercise i have been doing stretches, swimming (only when it let up a bit) and i have been walking without my stick for the first time in ages. It does still hurt like a bitch but it is so much more manageable.

[dewey695]

Good advice on AS. Exercise is vital for managing AS, particularly breathing.. The trouble is, it can be hard to motivate yourself to do it. Best to do something you enjoy, for example walking, swimming etc.Also useful to lie face down for some time during the day. This helps with posture.

[soulduck33]

Great video. You have a good positive outlook on life, keep that . Your road will be a tough one but, one day you will be an inspiration to some one such as my friend with A.S. was to me.

[adobe7263]

I really like your video, I like the style and the black and white. I identify with and experience all the things you talk about. It does help to hear it expressed, and you cover everything - what to do, emotions, attitudes, the cycles we go through. I would like to better help my husband and children. I imagine the only thing worse than the disease is watching it happen to someone you love.

[astrid21zna9]

I got diagnosed with AS last month after a year of misdiagnoses, uncertainty, and dis function, I am looking for someone to talk to. I don't know anyone with the same problem so I feel like a bother when I talk about my pains and problems to loved ones and friends. I really want someone to talk to about it, even if it is pen pals. Kelly,24

[totaledcarfixer]

I would luv to chat with you !! i also have A S .

[naturalsystah]

@astrid21zna9 Haveyou heard of the NASS? They have support groups, hopefully there's one in your area...

[ShelterShock]

more problems. I went to go see my specialist again and now we have to wait tell my parents get coverage for the drug Enbrel. Which is in November. Apparently this Enbrel drug is suppost to be amazing but for many people (like my father) it can cause quite dreadful side effects. Otherwise this drug is known as a Miracle drug. Now at the age of 15 I wait to use the drug Enbrel not being able to sleep some nights due to the weather and constantly being sick with a cold or some other sickness.

[ShelterShock]

and he subscribed me the medicine Naproxen. After a while of taking this otherwise useless medicine we went to go see my specialist again after having Iritis twice during the 6 month period. Me and my parents told my specialist that Naproxen was not making any changes in my pain but causing severe stomach pains and problems. So he subscribed me methotrexate, folic acid, and omeprazol. now durring a year period I took these medicines with no pain decrease. All it seemed to do was cause....

[ShelterShock]

As me being a child I really did not see the excitment in doing something that put me in a tone of pain so I just stopped going to physio. My parents didn't seem to care. A while after that we kept trying to get in to see my specialist and found that it was getting to be almost impossible to get in to see my current specialist. So we waited and waited until I was 13. We finally found out that there was another specialist taking more people in. After a while we went to go see him.....

[ShelterShock]

I am currently 15. As a child I complained alot about my lower back area feeling an immense amount of pain. After awhile of complaining my parents brought me into the doctor and tested me for HLB-27. The test results came back possitive. Also with the fact of my father having Ankylosing Spondylitis(AS) increased my chances of having AS. They took me in for xrays and nothing had been seen. About 2 years later I started seeing a specialist. My specialist just recommened me to do physio.....

[rross27]

Great Video! 25 yrs. of AS and still kicking here! I have learned: No Nightshade Vegatables espically raw, (peppers, tomatoes, and potatoes are the worst). A low PH diet in general. Sit in a comfortable chair that your neck can lay back on, even to sleep (lazy boy). Roll up a fluffy hand towel, wet it down, 1-2 min in microwave, and hang it over neck and shoulders (repeat 5-10 times hot). Vaporize some bud for pain, relaxation. Shiatsu neck massager to dig in deep on muscles after heat.

[deepsnotebook]

TNF ALPHA (injections) are only treatment for AS they may cure AS about 99% take care my dear friend

[getbentforever2]

hiya, I'm 28 from sussex and have had AS for ten years. Exactly the same symptoms as you, car journeys are a right pain in the legs and getting in cars is like a perculiar puzzle game everytime. I'm active and healthy despite the fusion and refuse to pander to it or let it get me down, it's made me live my life for right now and enjoy the present for all its worth :)

[tracy10UT]

I noticed that every one of my comments on this topic have been deleted, no matter where I posted them so I'll try again. Were you exposed to chemicals of any sort or did you work in a factory? I am really concerned about this because I have all of your symptoms and much worse. I live in a fluoridated city and also lived in a Canadian city for 7 years that was sprayed with Agents orange, white, and purple.

[ELoney]

You're not alone my friend, ive had AS for 15 years and im only 34 !! Each day is a struggle, taking celebrex is the only thing helping me day to day but the side effects are terrible. Excersice hurts but I still do it.

[ChrisMichaud]

BTW,

The no starch diet and weight loss DID work for me. Maybe it's psychosomatic, but who cares....

yes, stress is also a huge contributor....golf is great for me. walking 18 holes helps keep everything moving.

[ChrisMichaud]

Not only does sneezing hurt, but when you try to suppress it, it blows your back out. So it's chest agony or back destruction.

I'm with you brother...I was diagnosed in May 06, although lived with this for many years without knowing what it was.

Its incredible; I'm writing this post as I listen to your video. I've experienced everything you have.

My family always refers to my AS as my "bad back". They have no idea...

I'm starting a Facebook group for people with AS. Search my name 4 it.

[SpaceOfOrigin]

keep going brother.

thanks for this.

excercise and meditation is good for reducing stress. maybe check out some ayurvedic treatments. i will try it.

[8Hanuman8]

Thanks for the testimony, it's sometimes good to feel a bit less lonely facing this burden.

[baconsoda]

Yeah. AS is a very lonely illness. AS and stress - VERY bad mixture. Diet, I tried the no starch, no everything diets and all they did was remind me all day that I had AS. I feel no worse on normal diet. If diets works for some people, great. I drink milk to supplement the calcium being robbed during fusion, hopefully won't have osteoporosis later. Exercise - VERY important. Yoga, my doc told me not to go past beginner level. I stopped alcohol cos the 3 days after were hell.

Good video/advice.