Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group I need help

Oh how I absolutely love our A.S. family here. Seb, my dear, you have brought out the parent in all of us! We all care about you're future.

I, like many others are year's into this disease and what I would have given to be in you're shoe's with all of the available thing's to try. I was 28 when diagnosed with 3 children. They knew nothing about A.S. back then. They had a one page pamphlet! That was it. We had no computer's back then like Brad said. I wasn't even sent to a Rheumatologist. I had Ulcerative Colitis and he treated both with just one medication, the only thing available at the time! One thing! I was put on Sulphasalizine and sent to pool therapy for 4 year's. Guess what, I went into full remission from both! I was young and they caught it early. I was able to finish raising my children! My Dr. did not tell me that they were separate diseases. I am 54 year's old now and still in remission from Ulcerative Colitis. When my A.S. came back 9 yr.s ago it presented differently then before. I completely forgot that I had it and thought since the Colitis was gone, no problema. I had no way of knowing. I got labeled with Fibromyalgia instead and got no treatment for the A.S. until this year. I saw the term again, remembered that I used to have it, goggled it, ran for my life to a Rheumatologist. Now I have no choices at all and am completely disabled. I am on all of it now and hoping and praying that something will slow the progression because it is so aggressive now at this late stage.

Some hospitals here offer pallative care and you have a whole team of Dr.s working for you and with each other. At your age Seb, I would ask your local hospital if they have support groups for people with chronic pain or ask them if they or other hospitals have groups for people specifically in your age group. If not, it helps to discuss all of this with a psychologist. They will teach you coping method's, how to deal with the pain and help you feel confident in making these decisions. I am very glad you found this site. This family has saved me many times. Hang in there.

hi seb,

see you already have a lot of good advice, so i'll just add a few things.

i understand your fear of the drugs, but i know i am often too cautious, and when i finally try something and it works, i often wonder why i was so afraid and waited so long. it is a balance between being smartly cautious and being too afraid.

when i get like that, i try to balance my fears from the negative things i hear and read, with the positive success stories i hear and read.

in the end of course it is your decision.

and i know how easy it is to say "try not to worry about the future", but again, i used to worry way too much when i was younger. and now that i am older and can look back i can say this, the things i worried about almost never came to pass and usually turned out better than i could have ever imagined. and the things that were problems, i never saw them coming. the thing i learned along the way is that we really can't predict life and worrying about the future does no good. but it sounds like you know that and can't seem to get yourself to not worry about it.

have you thought of either a good support group especially one with people your own age going through what you are going through or maybe even talking with a therapist that can help you see things in a different light. sometimes its good just to have people to talk to.

its good that you are here, but i think also having people you can talk with face to face would be a good addition.

for me, i have both this forum, which has been quite wonderful for all the obvious reasons, but i also have the support of my husband, friends, a few doctors that i can really count on. i couldn't do it with just this forum alone. for me, its important to have a variety of support.

hope you are feeling better soon.

and as mig said, don't give up on your plans and dreams. sometimes i can't do what i want when i want, but i always hold out the hope that one day i will be able to, when the time is right. or maybe do something similar to compensate. i never just put the ideas out of my mind. where there is a will, there is a way.

Hi Seb, ditto to all the above.. I chose to trust my rhuemy and not look at what may come.. Biological were fab for 6 months... Long story short I use Enbrel @ 14-21 day intervals instead of weekly. Have done this for 12 months whilst using the nsd with the goal of weaning off my drugs.. I did it drug / diagnosed free for 12 years,working in a heavy labour type job running a concrete batching plant..and truck driving with heavy lifting. Huge pain and drive to fight thru every day.
Look at the options of assistance (drugs) with a goal of weaning off..
Again I get not letting people know my problems.. I now point them here..
Good luck and fight on my friend..
Julian in Perth Western Australia

Seb - Picking up from what Pea suggested. Apart from hospitals who may have an AS group, check with the SAA site (Spondilitis Association of America) see IF they might have a AS support group in your area. Heigh, and if there isn't one around, hows about you setting one up? Could do group swimming andeven stretching / physio classes or stuff like that... Just a thought.

Go well -

Seb,
I think we should encourage Kancie:

"""I might be a pain free culinary genius right now, making all of your lives SO much better!"""

it is not too late for all of us to persue goals of health and career!

Seb, you have been given some wonderful advise here. I wish that I had known that I had AS when I was in my early 20's and having a bad flare. My GP just told me to put a piece of plywood under my mattress and take aspirin for the pain. When my hip started hurting, he said to ice it. Had I known what I had, I would have pushed for better meds and would have avoided many of the problems I have had for many years.

You are young and have the opportunity to change the course of this disease and provide for a better future. There are so many medications that are available now that we older people didn't have the opportunity to use. Go for them!

The biologics can turn your life around, if you give them a chance. The risks of cancer or MS are extremely rare. The chances of you fusing and living a life of pain and disability is going to be your future if you do not do something to control your AS now. The longer you wait, the greater your chances of disability.

I took Humira and it gave me back my life. Before Humira, I couldn't drive the 60 miles to see my family without crying, because the pain was so bad. A few weeks after I started Humira, I was able to take a 10 day, 4,000 mile road trip to visit my brother and take my granddaughters to see some of the wonders of our country, like Yellowstone Park.

If I were young like you, and I was offered the chance to try any of the biologics, I would take them in a heartbeat. Stop the pain, perhaps slow the progress of the AS. Then you can take your time researching things like diet to help with the progression of the As until something new and better comes along.

thanks donna, i needed to hear that. i've been so back and forth about what i want to do. its helpful to hear these words, even if i've heard them before.

Hello Seb,

Sorry to hear you need some help. Regarding the direction you want to go, natural or medicine... you can always use a combination of both as well. Maybe you can limit the amount of meds you need if complimenting with natural helps.

Life is a long journey, take one day at a time.

Tim

Hey everybody,

The support and advice that you have all provided me here has been truly amazing. I want to thank you all for everything, I really do appreciate it. I have read every single comment and each one has CERTAINLY helped me try and sort this out. I went away on holiday with my family for a week and I can probably say that it has been the toughest week of my life. I have been in ridiculously unbearable pain and was in bed for most of the trip. On a pain scale of 10, the pain that I experienced was definitely 10. I went through stages where I felt like I didn't want to be alive because the pain was so severe.

But by being at the lowest point of my life, it helped me to understand that I can't live like this anymore. I've got to try and get my life back. So I'm wondering if I could ask another question. It's a very broad question that is potentially unanswerable but what are the safest and most effective drugs for AS out there/what drugs have really worked well for you? If you are on the biologics, do you continue to take other meds in attempt to slow the progression? The only drugs that I have taken are NSAIDS which do absolutely nothing for me and aparently they accelerate the disease which is one reason why I have always been reluctant to take them.

Anyway thanks again for the help, you guys are great.

Seb

in my opinion, the biologics seem to be the gold standard. a lot of people tolerate them very well and have much success with them as you've seen on here.

another thing you could try is LDN. almost certainly not as effective as the biologics, but as far as i can tell from both my experience and everything i've read, very safe.

i'm trying very hard to do it with LDN, topical nsaid patches and gel/creme, supplements, diet, and exercise, and while i feel much better between flares, i still flare. if allergy shots don't stop my flares, i will be moving on to sulfasalazine or a biologic, probably humira to start.

i should add: the reason i took this approach is that it took me a long time to find a rheumatologist who could dx and therefore treat me with the proper meds for inflammatory arthritis. if i had presented more classically, perhaps i'd have traveled a different path. just wanted to add that. i'm not necessarily doing things this way because of a conscious decision that i made; it was merely the best decision at the time, being limited in what i was allowed to ask for. if it works in the end, great, but if not, i'm prepared to add in either the SSZ or humira. i'll probably still continue much of what i'm already doing, i just need a bit more, as what i'm currently doing, while better than in the past, still isn't quite enough.