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#515009 - 05/25/16 05:24 AM Re: How exercise saved my life [Re: cst025]
Paulo Offline
New_Member

Registered: 05/23/16
Posts: 14
Loc: Viseu - Portugak
Awesome post! Cheers!

I was a quite good athlete myself.
I only started showing AS symptoms 2 years ago and took me a long time to get it diagnosed properly.
During this time (poorly advised) I stopped my regular exercise. I'm a little out of shape now but starting to pick up.
I'm taking Simponi and finally i feel comfortable enough to start getting back in shape!

Your post was inspirational. Thank you!
_________________________
Rock on!

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#515258 - 06/21/16 05:39 AM Re: How exercise saved my life [Re: cst025]
Staffy Offline
Apprentice_AS_Kicker

Registered: 02/02/10
Posts: 79
Loc: Oxford, England
Do I remember correctly that anti-tnf biologics can cause drug induced lupus?

Going through a 3 week flare at the moment that is keeping me out of the gym and off the tennis court. NSAIDs aren't touching it. Getting very close to pulling the trigger on anti-tnf now.

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#515261 - 06/21/16 08:19 AM Re: How exercise saved my life [Re: Staffy]
cst025 Offline
Member

Registered: 12/06/15
Posts: 38
I also think I remember reading about anti-tnf's and drug-induced lupus somewhere. My rashes subsided quickly when I used a strong steroid cream, though. Have not had any skin problems since, but I've taken great care when I've been out in the sun though.

I still have a tiny cold sore (damn, this took a looooooong time to get rid of), so I haven't taken Cimzia since beginning/mid May. I haven't been able to kiss for over a month. Worst side effect ever.

My back feels fine though. It seems to me that after taking anti-tnf's I have a loooooong period with no back problems, so I don't see the need for taking the shots as often as every second week (as prescribed).

I got my last infusion of Remicade first week in january but did not feel my back getting worse until beginning of April (almost a month after I was scheduled for mye next infusion).
I got my last shot of Cimzia around the 12th of May and I feel great still, even though it's almost 4 weeks since I should have gotten my last shot.

In other (good) news my weightlifting is going GREAT! I'm getting bigger and stronger every week, and it feels amazing to acomplish something physical even though I have this disease.
And to make things even better I was selected for the 2016 Scifinder Future Leaders in Chemistry and I get to travel to Columbus, OH to visit Scifinder/Chemical Abstracts Service, AND to Philadelphia, PA to attend the American Chemical Society meeting and exposition. All expenses paid. There's a couple of hundreds of applicants every year, and I'm the first one ever to be selected from Norway.

https://www.cas.org/products/scifinder/futureleaders-stavaasbio

Since it's my first trip ever to the US, I'm gonna take a week holiday in NYC after the meeting in Philly.

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#515262 - 06/21/16 08:27 AM Re: How exercise saved my life [Re: cst025]
Staffy Offline
Apprentice_AS_Kicker

Registered: 02/02/10
Posts: 79
Loc: Oxford, England
Congratulations! I read what your doing - your trying to artificially recreate certain marine based anti-inflammatory compounds? Have I got that right? Is that for medical purposes?

Enjoy the states. Ive only been once but loved it. Cant get my wife in a plane now.

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#515263 - 06/21/16 08:42 AM Re: How exercise saved my life [Re: cst025]
cst025 Offline
Member

Registered: 12/06/15
Posts: 38
Yes, I work on increasing the metabolic stability of anti-inflammatory compounds - one of them being Protectin D1, isolated from trout and salmon - that are derived from omega-3 poly-unsaturated fatty acids.

Ideally it's for medical purposes, yes.

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#515312 - 06/28/16 03:20 AM Re: How exercise saved my life [Re: cst025]
cst025 Offline
Member

Registered: 12/06/15
Posts: 38
Damn! I'm so sick of these cold sores!!!!!! Whenever one disappears, a new one reappears on the other lip! In the beginning they were big and painful, however, now they're only small and...well, LESS bothersome.
I take anti-virals for them, but if anyone have some other good tips I'm all ears.

But, at least my back is feeling pretty good. I'm taking ibuprofen pre-emptively, because I don't want another flare-up like I had in April.

My work-out routine keeps getting better and better every week. I have also gained some more weight, which is great!

I talked to a friend yesterday, about my disease, health and life in general.

I realized that being sick and, malnutritioned, and underweight for so many years had been connected, in my mind, to AS. So everytime I step on a weight and see another pound, that is a visual and physical representation of beating the disease.

I also get a lot of emails and messages from people suffering from AS around the world, both here, on instagram, facebook and other social media. They find my story inspirational and ask for advise on keeping healthy. It's very nice to feel helpful and that I can make a change, even if it's just a small one, in someone's life.

When I was 17 I fell from a rock and injured my shoulder badly. Couple that with AS, and I was basically unable to lift my arms above my head for almost 10 years. My physical therapist showed me some exercises last year, that maybe would improve it, and improve it did! I'm now able to do shoulderpresses and other "over the head"-exercises and I have been able to put on some muscle as well. I am just so happy!

My journey has been like being locked in a cage for 10 years, and then finally let out.


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#515368 - 07/05/16 07:16 AM Re: How exercise saved my life [Re: cst025]
Inanna Offline
Very_Addicted_to_AS_Kickin

Registered: 11/15/01
Posts: 18059
Loc: UK
Have you ever tried Tea Tree Oil on them? Just dab a bit on and let it dry. Don't lick your lips as it's tastes awful! My mother has found this helps her cold sores very quickly.

Hope you get it resolved.

Warm hugs,
_________________________
Kat

A life lived in fear is a life half lived.
"Strictly Ballroom"


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#515370 - 07/05/16 01:39 PM Re: How exercise saved my life [Re: cst025]
cst025 Offline
Member

Registered: 12/06/15
Posts: 38
I did a quick search and it seems like tea tree oil contains lots of menthol-like terpenes (once a chemist, allways a chemist), and I'm already using menthol as it dries out the sores so it doesn't spread. So yeah, I guess tea tree oil would work as well.

I noe only have one (1) sore on my bottom lip. Hope it'll dissappear before a new one appears.

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#515386 - 07/07/16 07:38 AM Re: How exercise saved my life [Re: cst025]
Inanna Offline
Very_Addicted_to_AS_Kickin

Registered: 11/15/01
Posts: 18059
Loc: UK
I don't know anything about terpenes, I just know that it's antibacterial and kills infections. I inhale it if I have a chest infection; it kills canker sores in your mouth and cold sores on your lips; it disinfects cuts. The only thing better is Oil of Oregano, but I've never tried it on a canker sore or cold sore as Tea Tree works so well.

Mum has suffered with cold sores her entire life and she's never had such good results in getting rid of them.

Good luck!

Warm hugs,
_________________________
Kat

A life lived in fear is a life half lived.
"Strictly Ballroom"


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#519045 - 09/12/18 04:20 AM Re: How exercise saved my life [Re: FightingBack11]
ganda Offline
New_Member

Registered: 06/12/15
Posts: 11
hi,
sorry for bringing up old thread eek
Just wanna say my gratitude toward cst025, I also chatted with him a few times via instagram but perhaps this forum need yet another good news from fellow ASkicker.

dude, your thread here (and series of fortunate events) changed my life, albeit not right away... considering this lazy sexy a55 of mine grin I'm currently 33yo, been diagnosed with AS since about 10 years ago but started having pain since about 20 years ago.

I'd been an introvert all my life because of this disease, the hunchback, the pain, the silly walk.. made me hesitant to leave my room let alone having a girlfriend. My only respite from this life was video game and food, thus my overweight body (at that moment I weighted 95kg and only 163cm tall). I have been taking sulfasalazine & leflunomide daily + remicade IV twice a year. Based on my last X-ray few years ago, fortunately the fusion just affect my lower lumbar and thigh.

And then after taking my remicade iv on 2016, feeling energized, I started swimming on local pool, not too bad, but with my diet the exercise couldn't keep up with my appetite and sedentary life style.

Then I stumbled upon your thread here in 2016, started going to the gym after reading your post but for only about 2 months tired , my lazy a55 and busy work combined with inexperienced trainer, but it was mostly me being lazy (I decided if i go to the gym I need a PT because I have doubt about my ability to measure my limit and progress, I once pulled a muscle on my back just because I stretched too far and resulted in back pain for more than 2 months), but the personal trainer I got wasn't very helpful, perhaps he also hesitate to teach me because of my condition & bad posture). I stopped going to that gym but still swim once every 2 days. (I lived in a small town, there aren't many choice of gym here).

And then I found a girl in late 2016, her being with me knowing my condition I knew she's a keeper grin I married her on October 2017.

And then earlier this year, my friend came by my office & we're having a chit chat, he asked "hey, what's with your back? why is it getting worse?", his remark reminded me again of this thread and I asked him if there's any other gym with better PT that can train me, and fortunately there's a new gym in town.

I started going to that new gym and being assisted with a PT since April. Aside from the exercise, he also taught me about nutrition & supplements.

After 3 months exercising (3 days a week) I feel better already, so I took a month off and went to Thailand with my wife grin My first trip overseas!!

Now I weight 76kg, no more pain, little bit better posture and range of motion, getting a bit muscle definition on my arm & shoulder but still a long way to go to have a beach body but I'll get there, and now i can squat and when i stretch my back sometimes I can feel my back cracking and when I'm exercising sometimes i can crack my neck cool all the stiff parts and tendons are getting loose cool

btw, if there are other gym goers in here, could you guys share some of your routine? I read about fitness program called stronglifts 5x5 for beginner, only takes 5 exercises, 3 days a week but consists of compound movements using barbell:

  • barbell squat
  • barbell overhead press
  • barbell flat bench press
  • barbell squat
  • Barbell row


I can only squat using Dumbbell (hanging dumbbell squat) and I can't do overhead press because my left shoulder can't rotate normally and i can't lie flat on a bench. If any of you can share your routine so I can try and share it with my PT, it would be wonderful.

again.. cst025 (Chris), thank you!!! you've been a blessing.

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