I've had AS for more than 20 years now, and my pain levels were like what you described...severe. I was put on Enbrel, which worked great, until it gave me MS. So, I was back to pain, but even worse than before. With no other options, I tried the No-Starch Diet. It took a while to find and elimate all starches, but I've got my life back. My pain levels are now back to 1-4 instead of 6-9. My diet now includes lots of almond and coconut flour dishes, with fruits, veggies, and meat. Try it!
@gbash1 Well I talked with someone about the carb diet at Supper Supplements and the I was told that to avoid gluten and that it was not good for people with an auto-immune disorder. Both she and I have a problems and even I have AS.
@robjlt - Please check out the abundant AS info on kickas.org. The low/no-starch diet has solid scientific background, and there are thousands of AS sufferers who can testify to its effectiveness, even though many doctors may scoff at it (due to their training and thoughts being controlled by the big pharmas). My pain was so bad that life seemed hopeless, but I can now enjoy life again with minimal pain (which is from the permanent damage that had already occurred).
ok, I checked out the site and it seems to have some interesting information. For the diet section about the starchy foods to avoid I've actually been eating lentils and beans for a little while and I seem to be doing alright in regards to my inflammation. Along with the lentils I've also been eating broccoli for the vitamin C since I found out that I'm anemic (my Iron is low). It's very possible that it was caused because of the inflammation. Having vitamin C will help to absorb iron.
I'm 23, had juvenile rheum arthritis when I was 7 til 13. Diagnosed with AS at... 20. I have no insurance and cannot afford a rheumatologist or a PCP for that matter. I have no medication except for Aleve. It can always be worse! Thank god for narcotic pain revilers. I would be stuck in bed all day without them.
Oh no! BASDI pain scales ! I hate them !!my old consultant made me fake my pain scale saying "they" would stop my enbrel anti -tnf injections away from me if I didnt' lie +say my pain ass a 5+below. Chronic spinal pain for 18yrs+diag with advanced AS for 4 yrs,yep took them 14yrs to diag,I have chrohns,over 150 attacks of iritis/scleritis ,Bechets,,yep Lost husband ,job, life,friends I lost the lot to AS.
I've just moved by the seaside :) paint,walk,think+AS won't beat me! it can f*ck off!
Hello again, how have you been lately? I have been doing alot better but still fighting like hell. I posted a video that you should check out. I hope you are doing well! Talk to you soon.
I can relate. I have AS finally diagnosed in 1995. Been suffering since 1984. Thankyou for sharing your personal experience with AS. What is your spiritual support? Are you a believer in Jesus Christ? For me stress starts my flares. Are you being treated for depression as well. I am sure you have read, that is a secondary effect of AS. Stay strong Trudi. I pray you feel better.
Hi Trudi I'm a 35 yr old male I have had AS since 1999 . It didn't start until I recovered from a bacterial infection (shagella). I wasn't diagnosed until 2007.
After 2 mri's and an experienced arthritis doctor. He started me on Embrel right away and it was like Heaven , all the pain for years melted away , I could sleep again , and walk without pain. Good luck to you .
I know that nightmare of pain. And I am so sorry you have to go through that. I hope you get better. My medication I use is Humira and it works VERY well to eliminate the vast majority of the pain.
I'm 29. I've been on enbrel for 5 years. It's changed my life. If you can do it, give it a try. It's been worth it for me. The fear of the side effects is there, but life without pain is such a gift. I'm thinking of you. Sending you love. I don't know why we have to suffer like this.
hey i feel the same just got to remember you are not alone. I have had these problems since i was 16 only found out i had AS last year im 25 now and i have to have both my hips replaced and im thinking what the hell is gonna happen to me when im 40. I remain upbeat though, the pain somedays can be unreal but i will not let it beat me i will beat this even if i do become a tinman.
Sorry, just a few more words, I have 2 small kids and I look at them and say to myself, self......;)....are you going to be able to do the things you dreamed of doing with them? The answer is, I dont know, but I was never given a guarantee on that anyway. Its the battles, not the war. But the pain is what gets you. It takes your energy and your will. Just fight as hard as you can and read about your mind/body connection. God bless you and write back if you want.:)
I hear you! It doesn't seem fair for the kids, but then life isn't fair. And they will grow up with a special kind of compassion and fighting spirit if we talk to them about what is going on and if we have a fighting spirit too. A friend has a mom with Lupus and she always felt her mom was lazy until she started suffering with spondy herself. Now she 'gets it'. But back then, nobody knew what Lupus was so her and her siblings didn't know or understand. Knowledge is power!
I am very glad that i didnt find out until just a few years ago myself that it was AS. I dont think I would have made it. I think God everyday that I have a warrior spirit and I can fight on the inside. It is SO HARD and I feel like shedding a tear talking about it, Its like telling someone, "All you have to do is climb Mt. Everest." Take a step at a time. Win the battles and forget the war, as we pretty much know that the war is lost, its all up to the battles now. .............
I just found your video and I feel for you so much. I dont know if you have watched my videos ever but I have the same thing in my lower back and tailbone area. My case is a little different, only because my symptoms started at 15, really alot younger when I think of these horrible pains I would get in my knees and breastbone when I was about 9. Then at 15 the lower back pain started and it kept up till now, and Im 41 now. I guess your didnt hit until just the past few years?....................
I had pain in SI, pelvis and hips since 21 when I had the injury in the Navy. The other pains would come & go off & on since then. Then they all started hurting at the same time about 5 years ago. I am 35 in the video. I'm so sorry to hear of your struggles and suffering too!
It scarces me to. I'm right there with on all of it. I haven't been in pain as long as u but I do know it. Having this for the rest of my life is mind boggling. I hope that u can find some relief somehow. Till later be WELL and try to stay strong for u and the kids and your husband.
I'm really sorry that you have such a hard time with AS. AS is a stupid disease, its not nice. Have you ever considered the no starch diet? You probably have, just a thought. Keep fighting. You're beautiful! keep smiling!!
I'm taking 5HTP, a natural and mild antidepressant. It helps to reduce pain during sleeping. Its unexpesive. My AS symptoms started gardually at 30, and i'm 37 now.
i was dianosed with spondyloarthitis last year and im going back to the doctor because the antiinflammatories arent doing much good. they have me on 10 mg percocets but i get at best 2 hours of reduced pain out of one. i know exactly what you mean when you say it gets worse. the doctor said he cant give me anything stronger and there are times at work i cry cause the pain is too much to bear. people just dont understand what its like but i discribe it as hell on earth. good luck trudi god bless
The pain eventually diminishes as your spine becomes fused solid. I still have no energy and I can't move my neck in any direction but I don't get full body spasms anymore and I can tie my own shoes now. It takes about five years of living in constant torture and then you have to deal with the physical disability for the rest of your life. I'm glad I'm already 55 or I would have given up a long time ago.
I'm glad your pain has diminished GeorgieWise, although, many people have more pain after fusion if they've fused nerves and as their bones become brittle & start fracturing.
I'm sorry girl. I know how the bad days can get you down. I've had the "pole up the back" pain lately. That sharp pain in your chest is chrondroitis. I'm glad your making videos, it actually helps to get it out. You can do it and you do have a life, just not the one you want. Try not to grieve for what is gone. Don't give up :) (((HUGS)))
I am so sorry to hear of your difficulties with AS. The only thing that keeps me going some days is 'it COULD be worse'. My problem is the VA system isn't taking me seriously. Once the available nsaids were shown to not work well enough, they turned to anti-depressants. I've been on them before and don't wanna go back!
Now I'm hearing rumors that the biologics may NOT stop fusion, just the pain. Not much different than the nsaids, but different risks. oh well. the journey continues!
I take a low dose antidepressant to address pain and it helps. I have used antiTNF for about 3 years and my life has been transformed but the fusion continues and my structural integrity continues to deteriorate. Others have said the same but having pain reduced and mobility increased makes anitTNF worth taking, I would be very distressed if I was taken off it because I know the alternative.
NSAIDS - ask to try different types, some work better than others for people.
Now I am mobile and able to work in my garden, that's my therapy to keep me moving. I have lots of problems but I work around them, latest is collapsed vertebrae and bone density problems but I am happy. I still have pain but it is bearable.
I wish I could help you. A simple thing that worked for me was sleeping (yeah, that's a laugh) - when I sleep I use a flat pillow to ease neck pain. Keep active as you can, once you fuse there is no getting flexibility back.
For what it's worth, a lot of us know where you are right now because your story is very familiar. I have had AS for 30 years, I tried to hide it, I hid from my family so that they wouldn't see me when things were bad, I contemplated suicide, I resisted using drugs because of side-effects. Then I got psoriatic arthritis and ended up sitting in a chair for 3 years. I took the antiTNF, morphine, celebrex, methotrexate, etc because I decided quality of life was more important than length of life.
I've had AS for more than 20 years now, and my pain levels were like what you described...severe. I was put on Enbrel, which worked great, until it gave me MS. So, I was back to pain, but even worse than before. With no other options, I tried the No-Starch Diet. It took a while to find and elimate all starches, but I've got my life back. My pain levels are now back to 1-4 instead of 6-9. My diet now includes lots of almond and coconut flour dishes, with fruits, veggies, and meat. Try it!
gbash1 8 months ago
@gbash1 Well I talked with someone about the carb diet at Supper Supplements and the I was told that to avoid gluten and that it was not good for people with an auto-immune disorder. Both she and I have a problems and even I have AS.
robjlt 6 months ago
@robjlt - Please check out the abundant AS info on kickas.org. The low/no-starch diet has solid scientific background, and there are thousands of AS sufferers who can testify to its effectiveness, even though many doctors may scoff at it (due to their training and thoughts being controlled by the big pharmas). My pain was so bad that life seemed hopeless, but I can now enjoy life again with minimal pain (which is from the permanent damage that had already occurred).
gbash1 6 months ago
ok, I checked out the site and it seems to have some interesting information. For the diet section about the starchy foods to avoid I've actually been eating lentils and beans for a little while and I seem to be doing alright in regards to my inflammation. Along with the lentils I've also been eating broccoli for the vitamin C since I found out that I'm anemic (my Iron is low). It's very possible that it was caused because of the inflammation. Having vitamin C will help to absorb iron.
robjlt 6 months ago
I'm 23, had juvenile rheum arthritis when I was 7 til 13. Diagnosed with AS at... 20. I have no insurance and cannot afford a rheumatologist or a PCP for that matter. I have no medication except for Aleve. It can always be worse! Thank god for narcotic pain revilers. I would be stuck in bed all day without them.
blackcr125 10 months ago
Oh no! BASDI pain scales ! I hate them !!my old consultant made me fake my pain scale saying "they" would stop my enbrel anti -tnf injections away from me if I didnt' lie +say my pain ass a 5+below. Chronic spinal pain for 18yrs+diag with advanced AS for 4 yrs,yep took them 14yrs to diag,I have chrohns,over 150 attacks of iritis/scleritis ,Bechets,,yep Lost husband ,job, life,friends I lost the lot to AS.
I've just moved by the seaside :) paint,walk,think+AS won't beat me! it can f*ck off!
MsMagicalCat 11 months ago
Hello again, how have you been lately? I have been doing alot better but still fighting like hell. I posted a video that you should check out. I hope you are doing well! Talk to you soon.
ASsufferer 1 year ago
I can relate. I have AS finally diagnosed in 1995. Been suffering since 1984. Thankyou for sharing your personal experience with AS. What is your spiritual support? Are you a believer in Jesus Christ? For me stress starts my flares. Are you being treated for depression as well. I am sure you have read, that is a secondary effect of AS. Stay strong Trudi. I pray you feel better.
DisabledVet2006 1 year ago
Hi Trudi I'm a 35 yr old male I have had AS since 1999 . It didn't start until I recovered from a bacterial infection (shagella). I wasn't diagnosed until 2007.
After 2 mri's and an experienced arthritis doctor. He started me on Embrel right away and it was like Heaven , all the pain for years melted away , I could sleep again , and walk without pain. Good luck to you .
911paulrevere 1 year ago
Hi and thanks for being so strong.
Have you tried a starch free diet?
alwayshumpin 1 year ago
I know that nightmare of pain. And I am so sorry you have to go through that. I hope you get better. My medication I use is Humira and it works VERY well to eliminate the vast majority of the pain.
Skycaptain220 1 year ago
I'm 29. I've been on enbrel for 5 years. It's changed my life. If you can do it, give it a try. It's been worth it for me. The fear of the side effects is there, but life without pain is such a gift. I'm thinking of you. Sending you love. I don't know why we have to suffer like this.
siddhartha101 1 year ago
hey i feel the same just got to remember you are not alone. I have had these problems since i was 16 only found out i had AS last year im 25 now and i have to have both my hips replaced and im thinking what the hell is gonna happen to me when im 40. I remain upbeat though, the pain somedays can be unreal but i will not let it beat me i will beat this even if i do become a tinman.
wilko2603 1 year ago
I wish I could give you a hug........your not alone.
ASsufferer 1 year ago
@ASsufferer
Sending a hug back! Thanks for sharing your story too!
madebytrudi 1 year ago
Sorry, just a few more words, I have 2 small kids and I look at them and say to myself, self......;)....are you going to be able to do the things you dreamed of doing with them? The answer is, I dont know, but I was never given a guarantee on that anyway. Its the battles, not the war. But the pain is what gets you. It takes your energy and your will. Just fight as hard as you can and read about your mind/body connection. God bless you and write back if you want.:)
ASsufferer 1 year ago
@ASsufferer
I hear you! It doesn't seem fair for the kids, but then life isn't fair. And they will grow up with a special kind of compassion and fighting spirit if we talk to them about what is going on and if we have a fighting spirit too. A friend has a mom with Lupus and she always felt her mom was lazy until she started suffering with spondy herself. Now she 'gets it'. But back then, nobody knew what Lupus was so her and her siblings didn't know or understand. Knowledge is power!
madebytrudi 1 year ago
I am very glad that i didnt find out until just a few years ago myself that it was AS. I dont think I would have made it. I think God everyday that I have a warrior spirit and I can fight on the inside. It is SO HARD and I feel like shedding a tear talking about it, Its like telling someone, "All you have to do is climb Mt. Everest." Take a step at a time. Win the battles and forget the war, as we pretty much know that the war is lost, its all up to the battles now. .............
ASsufferer 1 year ago
I just found your video and I feel for you so much. I dont know if you have watched my videos ever but I have the same thing in my lower back and tailbone area. My case is a little different, only because my symptoms started at 15, really alot younger when I think of these horrible pains I would get in my knees and breastbone when I was about 9. Then at 15 the lower back pain started and it kept up till now, and Im 41 now. I guess your didnt hit until just the past few years?....................
ASsufferer 1 year ago
@ASsufferer
I had pain in SI, pelvis and hips since 21 when I had the injury in the Navy. The other pains would come & go off & on since then. Then they all started hurting at the same time about 5 years ago. I am 35 in the video. I'm so sorry to hear of your struggles and suffering too!
madebytrudi 1 year ago
It scarces me to. I'm right there with on all of it. I haven't been in pain as long as u but I do know it. Having this for the rest of my life is mind boggling. I hope that u can find some relief somehow. Till later be WELL and try to stay strong for u and the kids and your husband.
Reyot1 1 year ago
I'm really sorry that you have such a hard time with AS. AS is a stupid disease, its not nice. Have you ever considered the no starch diet? You probably have, just a thought. Keep fighting. You're beautiful! keep smiling!!
pepperc0rn 1 year ago
I'm taking 5HTP, a natural and mild antidepressant. It helps to reduce pain during sleeping. Its unexpesive. My AS symptoms started gardually at 30, and i'm 37 now.
Bon courage
gilou1973 2 years ago
i was dianosed with spondyloarthitis last year and im going back to the doctor because the antiinflammatories arent doing much good. they have me on 10 mg percocets but i get at best 2 hours of reduced pain out of one. i know exactly what you mean when you say it gets worse. the doctor said he cant give me anything stronger and there are times at work i cry cause the pain is too much to bear. people just dont understand what its like but i discribe it as hell on earth. good luck trudi god bless
catman63879 2 years ago
The pain eventually diminishes as your spine becomes fused solid. I still have no energy and I can't move my neck in any direction but I don't get full body spasms anymore and I can tie my own shoes now. It takes about five years of living in constant torture and then you have to deal with the physical disability for the rest of your life. I'm glad I'm already 55 or I would have given up a long time ago.
GeorgieWise 2 years ago
I'm glad your pain has diminished GeorgieWise, although, many people have more pain after fusion if they've fused nerves and as their bones become brittle & start fracturing.
madebytrudi 2 years ago
I'm sorry girl. I know how the bad days can get you down. I've had the "pole up the back" pain lately. That sharp pain in your chest is chrondroitis. I'm glad your making videos, it actually helps to get it out. You can do it and you do have a life, just not the one you want. Try not to grieve for what is gone. Don't give up :) (((HUGS)))
TheJulieShow 2 years ago
These comments came up in the wrong order, sorry
baconsoda 2 years ago
I am so sorry to hear of your difficulties with AS. The only thing that keeps me going some days is 'it COULD be worse'. My problem is the VA system isn't taking me seriously. Once the available nsaids were shown to not work well enough, they turned to anti-depressants. I've been on them before and don't wanna go back!
Now I'm hearing rumors that the biologics may NOT stop fusion, just the pain. Not much different than the nsaids, but different risks. oh well. the journey continues!
madebytrudi 2 years ago
I take a low dose antidepressant to address pain and it helps. I have used antiTNF for about 3 years and my life has been transformed but the fusion continues and my structural integrity continues to deteriorate. Others have said the same but having pain reduced and mobility increased makes anitTNF worth taking, I would be very distressed if I was taken off it because I know the alternative.
NSAIDS - ask to try different types, some work better than others for people.
Good luck,
Brendan
baconsoda 2 years ago
Now I am mobile and able to work in my garden, that's my therapy to keep me moving. I have lots of problems but I work around them, latest is collapsed vertebrae and bone density problems but I am happy. I still have pain but it is bearable.
I wish I could help you. A simple thing that worked for me was sleeping (yeah, that's a laugh) - when I sleep I use a flat pillow to ease neck pain. Keep active as you can, once you fuse there is no getting flexibility back.
Best Wishes,
Brendan
baconsoda 2 years ago
For what it's worth, a lot of us know where you are right now because your story is very familiar. I have had AS for 30 years, I tried to hide it, I hid from my family so that they wouldn't see me when things were bad, I contemplated suicide, I resisted using drugs because of side-effects. Then I got psoriatic arthritis and ended up sitting in a chair for 3 years. I took the antiTNF, morphine, celebrex, methotrexate, etc because I decided quality of life was more important than length of life.
baconsoda 2 years ago