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3/30/10 4:14 P

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Hello, Kricket57!
Welcome to SparkPeople!! I have only been a member for a few months, but I am really enjoying it. There are so many wonderful people, and so much great information on just about anything you could want to know about, that I know you'll enjoy it too!

Thank you for sharing your story with us. I am so encouraged by what you've said. I will tell you a little about what has happened to me within the past few weeks - something I haven't yet shared. Everyone has encouraged me to walk and to move and to keep it up, so I began walking. (Since I've been a member everyone told me the more I move, the better I'll be - thank you!!). The first time I walked, I only walked about 10 or 15 minutes, at a slow pace, but I hurt the rest of the day and most of the night, so I dreaded walking again. Each time I walked, although I still had some pain, it got easier and easier - and less painful. This past week-end my family and I went to a theme park and I walked - alot! I sat and rested when I needed to (and I didn't ride very many of the rides, only things I knew wouldn't hurt me) but I didn't get exhausted like I thought I would. I was a little tired, but not so tired that I was miserable! I believe I am getting better! When I went in for my 3 month check-up last week, my doctor told me my inflammation levels were very low, and he was really pleased with my progress. He also said that all my other bloodwork was all within normal limits. I am so thankful to hear that report and to think that I have a chance of not being an invalid in a few months was very encouraging to me. That is what I thought when I first learned I had AS - although no one told me that, I really thought I'd be in a wheelchair within a few months!

Thank you all for helping me get to this point! I believe when you have problems, that your attitude plays a big part in your recovery. Everyone from SparkPeople has helped me keep my attitude good and therefore has helped keep me in better health!! Also thank you for all of your thoughts and prayers!

Kricket57 - Your story is very encouraging to me, also! To know that your Rheumatologist thinks that your AS has burned itself out and that you've been stable for the past 10 years is phenomenal to me!! Thank you so much for sharing this with us. I appreciate your encouragement and words of wisdom to me and others who have this terrible disease!

You are all awesome! Thank you, again!
Bamamom00



Edited by: BAMAMOM00 at: 3/30/2010 (17:01)
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3/30/10 2:14 P

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I am new to SparkPeople, but have been dealing with AS for years. I was diagnosed when I was 25 when there was little information available. Mostly they just told me to keep moving. As I was in the military, I had little choice. Standing for long periods of time has always been painful and sometimes I wondered if I would be able to move when I needed to. Parades in the military were not fun but I did my full career and just retired at 50. I am now 53 and my AS has been stable for over 10 years. My rheumatoligist thinks it has burned itself out and unless there is a sudden trauma or something to set it off, I will not get any worse. I take anti-infammitory drugs every day and keep moving. Stretching and walking are the best but I also have a light weight routine I do as well. I will never be able to increase my weights routine much beyond 30 lbs and running is out as a form of exercise, however I can walk as fast as some people run and as long as I am mobile, I am happy.

I know I have a milder form of AS and it could have gone the other way, but keeping active, paying attention to your posture and a positive attitude help a lot. There is a lot of information available today and it is not all doom and gloom. Take the good and keep going. Above all else, keep moving, even if it hurts. Tomorrow it will hurt less.



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1/6/10 8:36 A

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Thank you, again, DCDOC123!! I will call my doctor and ask him to refer me to a therapist. I believe my insurance will pay for at least a consultation, maybe more. I'll also check into that. I guess I should have thought about that! Sometimes it seems we have blinders on and can't see our nose in front of our face, as the old saying goes. A physical therapist WOULD be able to help, I'm sure. I guess that's why SparkPeople is so valuable. Thank you again, for sharing your knowledge with me. I appreciate it.
Trish (Bamamom00)

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DCDOC123's Photo DCDOC123 Posts: 4
1/6/10 6:02 A

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Hi Bamamom00,
It is very hard to tell anyone what kind of exercise is best for them. You need to find the best type of program for you. With your diagnosis it is essential to do some type of strengthening exercises and you could begin with visiting a physical therapist. They asses your condition, muscle tone and problem zones and based on that make an individual plan just for you. This can be a number of exercises you can do at home 3-5 times a week since it is easier to stick to it. You can meet the therapist some months later for a new assessment. this is not too expensive and is easy to follow.
The most important thing is to take it slowly and adjust the difficulty and type of exercise every couple of months. The results will come but it takes time.
Good luck!
Regards
Dragana (dcdoc123)

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1/4/10 11:45 A

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Thank you, DCDOC 123,
I appreciate and welcome your comments. Thank you so much for your reply. I know that I need to exercise, but I don't know what exercises to do. When my doctor first discovered I had AS, I had been walking everyday for about 3 weeks, at a mild pace for about a mile. I have a compressed disc (which is not severe) as well as AS. I began hurting more each day and just kept on thinking I would "work it out." Actually I got so bad I couldn't walk. It kept getting worse. At that time he told me not to walk because I had so much inflammation. About a month ago, he told me I could begin walking, but not to walk far or fast at the beginning. I don't want to get into that predicament again, and I want to keep moving. I was wondering which exercises would be best for me, if there is something I should do before walking to limber up, how to begin exercising and walking, and how fast to progress. I'd like to know what else I can do in addition to walking to help keep limber. I have asked my doctor, but he doesn't give me too much help. I feel stupid asking these questions, because it seems I should know, but I guess I'm afraid of the AS and the compressed disc. Do they work against each other? I, too have neck problems, and it has already begun to stiffen. I can't turn my neck as much as I used to. I know I can't properly be diagnosed by email, but does anyone have any suggestions for me to try? Does anyone have a website address for exercises, or anything else that especially addresses AS patients?
Thanks for any help.

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DCDOC123's Photo DCDOC123 Posts: 4
1/3/10 9:43 A

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Hi Bamamomo00,
I agree with all the comments but want to stress the importance of exercise and physical therapy. You have to keep the muscles strong in order to have the right posture and keep some flexibility. The pain and inertia cause stiffness and that causes more pain and so on. I had to have a neck operation some ten years ago because of a disc hernia caused partly by the inflammation in the discs because of ankylosing spondylitis. I work as a doctor and took a colleagues advice who said "you will get stiff and your spine will lose the possibility to move but at least exercise so that you become stiff and straight instead of deformed". Now ten years later I feel better and can do more things in my garden then I could then. The muscles we do not use get weak an atrophied and we all need to prevent that by doing regular exercises. It often gets less painful in older age. So fight on and good luck!
Daga /dcdoc123

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12/28/09 5:49 P

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Thanks, everyone!
I appreciate your help and input. I am doing better, although (of course) I'm still having pain. The Humira helps a lot but at night I hurt a lot as I'm sure you all do, too. I, too, have found that the more I move, the better I am. My doctor has suggested that I take Ultram ER instead of Tramadol so that I can get the benefits of the Extended Release during the night. When I take it, I can sleep better, although when I wake up I am still very stiff and sore. My hands will not close until I can get them loosened up, and my back doesn't want to bend, but once I get "loose" I usually don't have as much pain, and I can stand it pretty well. I am working at a desk, and have to get up and move during the day, or I begin to get stiff again. I'm sure you all have had the same problems. If anyone has any more input, I would appreciate it.

Thank you all so much for taking the time to answer me and to make suggestions for me. This disease will not win!! I want to be able to live a normal life and play with my Grandson - and I believe I am on my way to do that!
emoticon

I do have another question. Have any of you experienced having your hair get thinner? Mine has begun to thin some. I asked the doctor about it. He said it was probably due to the Methotrexate that I take for the "other Arthritis" that I have, so he increased my Folic Acid. I thought it might be from the Humira - does anyone know anything about this, and anything that can be done to help?

Thanks again, for all of your help.
Bamamom00

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1GRNTHMB's Photo 1GRNTHMB Posts: 4,791
11/10/09 6:11 P

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Hey Erin, Welcome home emoticon

I think you are right that you have to keep moving. I made the mistake that I just gave into it and into the pain. I did not want to do anything. It just made things worse. Three years ago my doctor told me that I had to start walking. It was hard because it made me hurt more. But I stuck to it. One year ago I was sent to physical therapy. I could hardly do anything but I persisted and slowly built it up. I was told, after three months of therapy, that I had to continue doing the exercises or else I would lose the gains that I had made in therapy. So now, I spend two hours every morning exercising. It has reduced my pain considerable and increased my flexibility.

If you start doing the exercises from the beginning and stick to it you well be able to live a normal life. Don't let the diagnoses or the disease let you stop doing what you like to do our you will never be able to gain it back again. You well probably be slowed down but don't let it stop you. I speaking form my own experience here.

Mark
Leader: Gluten Free and Healthy
teams.sparkpeople.com/gfh

Co Leader: Ankylosing spondylitis is anky-losing bad habits!
teams.sparkpeople.com/as


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HALF2EAT's Photo HALF2EAT Posts: 253
11/7/09 5:12 P

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Everything about AS is exhausting until you can mentally beat it. And I mean mental. I think when I was first diagnosed I was I denial. Then depression. Then reality. I do not have Ankylosing but undifferentiated. I had a lot to be grateful for because I knew it could be worse. I just kept moving. Well, once I started, I kept moving! That and these teammates of mine, have helped me beyond what any doctors have or can. I do take Simponi which is close to Humira. Humira did make me tired but I already was. Your body will have to adapt. Mark(greenthumb) takes B-12 shots. After he told me that worked for him, I tripled my B12. It has helped dramatically! Of course, talk to the docs 1st. If you can muster positive thoughts, that will help your energy level too. I hope you keep in touch. Keep posting, you help us too!

Make it a Great Day!!
erin :)
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ups_individual.asp?gid=24962


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DJCARR Posts: 165
11/2/09 2:31 A

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Bamamom00,
Sorry about the diagnosis. Mark is right that it AS is individual and medications effect us all differently.
I was on Humira for about 4.5 mos. and stopped in late Sept to have surgery. Have not gone back to it yet and am unsure if I'll be able to...
Did not think humira was helping, but my inflammation markers (blood test) showed that it was. Also noticed a difference (decline in mobility, increase in pain) after a few weeks without humira. I was also on medrol (steroid), sulfasalazine and celebrex at the same time and continued taking those medications.
Always experienced at least one day down after my injection every two weeks. Just built in a quiet day after the injection. The last dose (a few weeks before surgery) I had quite a severe reaction and was in bed for nearly a week and also had a rash (lupus like syndrome).
Will see my Rheumy this week to find out what he suggests for the future.
But I know people who have found the biologic medications to be life changing. Hope that you have a great experience.
Cheers,
Dahna


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1GRNTHMB's Photo 1GRNTHMB Posts: 4,791
9/29/09 4:45 P

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BAMAMOM00, Probably everyone is different and well not react to a medicine the same. Your side effect symptoms are not listed as common side effects so you really need to talk to your doctor about it. Fatigue is a part of AS and it si a very common symptom so it might be your AS that is giving you the fatigue problems after you get the shots. It might take 6-8 weeks before you start felling a benefit from the medicine. The doctor might be able to find something that well help you with the fatigue. With me, they found that i was also anemic and that contributed greatly to the fatigue.

I have not been on Humira but was on Remicade which is a very similar medication. I was on it for a little over a year and it really helped me. Then the insurance decided they did not want to pay for it and I could not afford it.

Pain levels will very. I seem to have flare ups when it becomes impossible to do anything. AS does not only affect the spine. It can affect any joint in the body. With out being on medication I can not even get out of bed in the morning. With Medication I can function, but always have some pain.

Exercise is one of the most important things to do. It really hurts to exercise but it is esential to keep the body flexible and it does in the long run reduce the amount of pain you have. I fought my doctor for years about exercising because the smallest thing made me hurt much more. But he finally insisted that I go to physical therapy. The first six weeks where agonizing. But after that I started noticing that my pain was less and my stiffness was also much less. I have now made a commitment to myself to exercise every day. So that I can keep what mobility I have and have a life instead of just sitting in front of a TV all day.

Mark
Leader: Gluten Free and Healthy
teams.sparkpeople.com/gfh

Co Leader: Ankylosing spondylitis is anky-losing bad habits!
teams.sparkpeople.com/as


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SHEILARENEE's Photo SHEILARENEE Posts: 133
9/25/09 5:45 P

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Wow, sorry to hear you got such icky news! Sparkpeople is a good place to be though. I was diagnosed about a year back "officially" but have had Crohn's disease for several years. I have not tried Humira yet; I really am trying to stay away fromt the biologic meds if possible. I have lots of problems with pain and fatigue. I manage mostly with stretching, rest, ultram (pain med), mobic (anti-inflammatory) and steroids when it gets bad. Sulfasalazine is an older, less expensive drug that is often used as a first-line treatment for A.S. Feel free to email anytime!!

If you always do what you've always done then you'll always get what you've always got..... Dr Phil

It's not the size of the dog in the fight--it's the size of the fight in the dog....Mark Twain

www.kitchenmonki.com


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9/25/09 3:37 P

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I found SparkPeople and was interested in it, then was diagnosed with A.S. and joined because of the A.S. Team. I was so happy to have someone to talk to who has this terrible infirmity! I was diagnosed with AS a couple of months ago, and am new to what is good to help and what isn't. I have been put on Humira and would like to ask some questions about it. I have arthritis in my joints also and am treated for that with several other medications which were working pretty well, when my back began to hurt so severely I couldn't sleep. When I went back to my doctor, he diagnosed me with A.S. I had never heard of it before, and was pretty devastated when he told me, and especially after I read about it and about Humira on the Internet! I then talked to my Internal Medical Doctor and he calmed me down about it. I still have many questions. I'd like to know how it affects others and if my pain is like everyone else's. I'd also like to know if anyone is taking Humira, and if so, what the side affects are for you. I take a shot every other week, and for several days after the injection, I lose most of my energy. It makes it difficult to get up in the morning, and very difficult to make myself go to work. I felt so week a couple of days after one of my shots, I couldn't sit up and had to stay home from work, but that was the worst it has been. Anyone else have those types of side affects, or any others? Anything you can share would be appreciated. Also, my computer is broken at home and until I can get it repaired, I have to answer from work, so it may be difficult for me to get back to you quickly sometimes. So, in advance, thanks for your sharing with me.

Edited by: BAMAMOM00 at: 9/25/2009 (15:39)
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