I noticed that the other groups on this website have a daily chat where they have become friends. By sharing their pain and personal experiences they seem to use humor and companionship as a form of coping. We may be able to help eachother by sharing our stories.
Would any of you like to have a daily chat to share our experiences together?
For example, I'll start: The onset of my symptoms began in 1996 in my sacroiliac joints. The pain shot through my hips like bolts of lightning so bad that there were moments that I couldn't walk. The next phase of my Ankylosing Spondylitis was low back pain that spread up my spine to concentrate in an ever present knot between my shoulder blades. It sort of felt like I was having a heart attack. Once I went through enough tests to find out that I wasn't dying, I settled into a routine of taking lots of Ibuprofen to reduce the pain. That was until I started having trouble expanding my ribs enough to breath. Hmm? Breathing is sort of an essential part of life. That problem spurred me out of denile and into action. What was this weird thing happening to my body?
Plus, during this time I was blessed with a daughter in July of 1999 and then again in October of 2000. Needless to say, being pregnant and raising children diverted my attention off my spine and into the rest of my body and the precious lives of my girls. That period of time was when a Rheumatologist confirmed my diagnosis of AS. It took an HLAB27 blood test and other strong information to convince me that I really did have an autoimmune disease.
That was when they wanted to pump me with something made of rat DNA (Remicade was brand new then) and I freaked out!!! See ya Dr. Rheumy. . . I was out of there for years.
Now that I am trying to keep up with a covey of three girls that are 7, 8, and 9 years old (we adopted my niece), romancing my amazing husband and helping him run our home based contractor's business, while maintaining a household, the pain in my entire body has become unbearable.
My current AS symptoms are that it is impossible to catch a deep breath because I can't expand my ribs without having electric shocks running through my spinal cord, chest, and rib cage. Just sneezing or coughing feel like near death experiences. I wake up in the night with spasms in my back. Inflammation can be felt everywhere from my fingers to my toes and even where my ears connect to my skull. I also had my first case if Iritis, so the inflammation has gone into my eye and it felt like the pressure was going to shoot my eyeball right out of my head. At least the Pred Forte eye drops took care of that and I no longer feel like there is an unbrella shadowing the left side of my vision. Thank God!
In order to keep up with our busy lives, which definitely requires being able to drag myself out of bed in the morning, I have FINALLY decided to seek effective medication. So what if it comes from a Chinese hamster ovary. (?) That sounds like a weird science fiction flick to me! I'm starting Enbrel today.
After six weekly doses of eight 2.5 mg tablets of Methotrexate and daily taking 1 mg of Folic Acid to protect my liver, and 1600 mg of Ibuprofen to kill the pain and reduce the inflammation, I can function but the ever present knot is still persisitently aching. Plus, the stiffness in my neck and entire back leaves me feeling like a Jack-In-The-Box ATTENNA BALL. I'm tired of not being able to properly move, bend, and turn my head. It hurts! I already backed my Suburban up into A parked PT Cruiser because I couldn't turn around enough to see the silly little cartoon car behind me. Oops! That was a 0 cha-ching!
Anyway, ENOUGH ABOUT ME! I never intended my first chat to be so long. Sorry. I really need to hear from others who have similar symptoms and coping stories. My sincere hope is that we can learn to heal ourselves of this miserable disease. Why us anyway? Why does anybody have to suffer so much pain? Daily I thank God for my health and pray that those suffering even more than me will be healed. But at the same time I ask Him, "Why?" Hopefully together we can figure it out.
I'd like to close in prayer. . . Dear God, thank you for this glorious day. Please continue to protect our loved ones and fill us with your grace. Your all mighty power can comfort our pain and we can be healed. Please shine your light on us Lord and help us to see how. In the Holy name of your son, Jesus Christ, I pray that you will hear these words and work in the lives of all those who read this prayer. Amen. Please make it so, Lord!!!
Looking forward to hearing from all of you fellow SURVIVORS!!!
Like the songs say,
"Where have all the soldiers gone?''
or
"Is anybody out there? Does anybody care?"
Let's chat.
Sure I will join. It might not be as long as your but i will give it a shot.
Right now I am 16 and have was diag alittle over a year ago. I was starting to show symptoms of AS when I was seven and my mom would notice after a soccer game that I would be lymping (spell) off the field. What that was from was my left nee hurting. We all though that it was because when i was younger my feet were slightly pointed towards eachother. I was supposed to get a brace to fix this but when it arrived it was to small. The doctor said I that my feet would grow out of this and they did. So we kinda shrug it off for a year or two with pain here and there during that time. It got to the point when I was needing medication to make it better, such as Robaxicet (spell). Now we are going to doctors appointment here and there and xrays which of corse were showing nothing. The after taking lots of xrays I went for a MRI which i guess they saw something there but said it shouldnt really affect anything. I even had some doctors telling me i was faking it, which of corse i wasnt and that made me very mad. And of corse you get the doctors that say he will grow out of it, its nothing. Well during my doctor appointment during these 6 year my mom was having slight stuffness, and her eye would bother her somedays. Then one day it broke out bad and she went to the doctor to get steriod drops for it and she tested possitive for AS. When this happened I got the test and I tested possitive to. Now everything made sence. When I first heard that I had this I felt like going into every doctor i ever saw and sawing I told you it wasnt just a back acke. Then i thought i guess they were just giving what they thought was the best bet. Then I got hooked up with a doctor that specialized in AS and she first gave me methotrexate in pill form. Tired it did nothing. Then we tried it in i guess it would be a shot form. There was a slight improvement but not enough to get me though the day. The I got told about Remicade and of corse the price tag. My parents talked about it and were all for it but after years of medications that were supposed to work but didnt they had second thoughts and all like all people would. Our AS specaillist then hooked us up with someone (my mom would no what it is called) that the company would pay for everything except something like 23 dollars or something just if i was to give them feedback on a test. The questions would be like rate your pain in your back out of ten. Now Since we only had to pay 23 dollars I was able to get the remicade and it has done mericals. The pain is still there but i can now move. I had a real wakeup call on vacation last week about how bad AS can be, I almost passed out due to the pain, and was alone with my imediate family. At 3a.m. i woke up to the worst ain of my life and was unable to move at all screming as loud as i could. I got to the phone and phoned my mom she pick up and told me what to do. I was so occupied with the pain i didnt really no what to do. As of no the pain is liveable, but i am now having to do school on the computer due to missing to much school due to doctor appointments.
WOW i dont no how long that is but i thgink i am finshed ahah
Shawn Stevenson
I will talk to my mom about posting here to and telling her story. It's been tuff for her to find times to do things because at the hospital where she works always has short staff and she always go in to help out.
It is tough for a mom to balance work and the rest of life. Please encourage her to take time out for herself. Plus, she can hang out with you, give you hugs, and chat.
Have a great day Shawn!
Hello out there. Am I the first Brit on this forum?
Anyway, i have had a diagnosis (suspected for 3 yrs) of AS confirmed today and feeling quite bad about it. They want to put me on methotrexate but i am completely terrified of all the side effects.
My symptoms are: sacroiliac pain (on nsaids for 15 years); bowel disorders (will be having my second sigmoidoscopy and a bowel biopsy in a few weeks checking for colitis); continuous iritis (both eyes, treated with maxidex drops); very frequent mouth ulcers (pain killer gel); so far only one genital ulcer (treated with steroid cream).
so i am already on a cocktail of drugs but i think i am managing okay. my pain these days is nowhere near as bad as kimberley's and the eyes are being managed ok.
does anyone else have any experience of methotrexate? kimberly, do you think i should, like you, resist the meds for a few more years? i don't want all my hair to fall out and then get liver failure and god knows what else!
if anyone has any good things to say, i'd love to hear them
thanks for sharing
zoester
Hi Kimberley,Shawn and Zoester,
I dont have AS but my husband does, he has terrible stomach and bowel problems. His neck and ankles give him a hard time,especially the ankles when driving. He can only drive an hour at the most now without intense pain. X-rays show that he has fusion in the lower spine. But he is so much in denial that he doesnt want to know anything about AS. he works full time with sheep skins ,lifting them and classing them. Each time his back gets bad he goes on workers comp, who send him for PT and put him on antiimflamatories. this is happening more and more ofter but he just says its a pinched nerve. I need to know all i can so that one day if or when he does want to know ,then I will be able to help him.
Hi Allycat
Sorry to hear about your husband. Other people talk about denial of AS - maybe it's because of the 'worst case scenario' of people with humps. The British AS Society has an awful logo that shows a stooped, humped figure! BUT, from research I've done and talks with docs this is really not the only prognosis. The main thing is to keep up with exercise and maintain good posture - the fitter he is the less likely he will have problems and posture will stop the fusion becoming a hump or stoop. I think he needs to see that As doesn't have to mean disability, although i have worries i really don't see it like that. But it'll only come from within so see if your GP can give you any leaflets just to get him thinking on more positive lines first - one day maybe he'll come on here himself to chat about his condition!
Take care, perhaps some others who've been on here longer than me have some other useful things to say.
zoester
Hi
Well my rheumy doesnt know if i have AS for sure yet
Just found out i also have a bladder prolapse for which i am waiting to go for an op.
As for the AS, i dont know what will happen next. I had an MRI scan, of my pelvic area 2 months ago and i am getting the results in 2 weeks when i see my Rheumatologist.
Nice to meet you all anyway
But my xrays show I'm doing well. I take Voltaren for my inflammation and it has been a real lifesaver. I had to laugh at Kimberly when she talked about how much it hurt to sneeze! I wasn't laughing because of the pain, but because of the double disaster I have of also being a little incontinent. When I feel a sneeze coming on, I have to lean on something to protect my back and cross my legs for the other thing! It's so embarassing at the grocery store. Oh well, at least my neck isn't fused like my brother's (he has AS too).
Please, everyone, try to remember that AS doesn't have to define you. You CAN work around it and live a good life if you take your appropriate meds, exercise, stretch your body as much as you can tolerate, and try a gluten-free diet. It just might help you and I know it won't hurt!
Take care,
1kwords
Nineldo (Denise),
Regarding fatigue: Are you sleeping well at night? If you aren't sleeping through the night and getting enough of that good ol' rem sleep, your body will be tired during the day. I have trouble sleeping sometimes, and it's always a killer the next day. I've been doing better since we got a more comfortable bed. Just a thought ..
First, sorry about the large font. I didn't realize it until it was too late!
Your doctor should do more for you than ask if you're depressed. Of course you're depressed ... from being so tired and sore all the time! This is going to sound silly, but do you sleep on your side with a pillow between your knees? The reason I ask is because I have to sleep that way. It straightens my spine up in a way that makes it more comfortable. The more comfortable you are, the less likely it is you'll wake up. We have a sleep number bed; that helps. Also, I'm giving up caffeine to see if it helps. Right now, I'm dealing with the caffeine withdrawal headaches. But I hope it gets better. Tonight, I'll drink some hot Valerian Root tea before bedtime. That's a real relaxer! Good luck. The suggestion of the pillow I've heard before but never tried. I'll give it a try. I've not hear of Valerian Root tea. Can you tell me a little more about it? I don't drink much caffeine, but I love tea and if it helps you out I'll give that a shot too! Just out of curiosity, does anyone suffer from lots of nauseousness? It seems I get these "flare ups" of going a couple of weeks at a time with nauseousness. Sometimes it just comes out of the blue. I believe I'm going nuts at times!
Thank you for sharing your experiences. Now, that I am on weekly Enbrel shots and take about 800 mg of Ibuprofen and a Vitamin B complex (pantothenic and folic acid included) my life is back to normal again. What is "normal" anyway? What I mean to say is that the pain is very well managed and I can accomplish all of my responsibilities on a daily basis. Hooray!!! ENBREL IS AMAZING! Please check into it for your circumstances. Thank you for e-mailing me personally. I enjoy hearing from all of you. Take care! Kindly, Kimberly
Sulfasalazine
can't even begin to explain how much i hate living with AS. i hate these
stupid injections, i hate the chronic pain, i hate the constant doctor
appointments ... i just ... hate. i'm applying to college right now and i cant
help but worry that all of this bullsh*t is going to follow me to college.
:( i hope not. does this ever get any "easier"? or less infuriating?
after another week ... hoping to make more progress ...
so thanks for listening .. not sure what will happen next .. I just try to help her thorough it all !
hang in there everyone and have a great new year!
Hi Everyone,