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Re: Welcome to the 20-Something Club [Re: spondylitis025] #225532
01/17/12 03:04 PM
01/17/12 03:04 PM
Joined: Jan 2012
Posts: 3
Boise, idaho
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AnJulua Offline
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AnJulua  Offline
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Boise, idaho
I am new to the whole as game and just started enbrel. It took over 5 years to diagnose me because the drs in idaho refuse to test young females for as. My father and brother both have as and along with that my entire family is swimming in autoimmune diseases. I'm trying to get tested for sjogrens as well. Most drs I have seen have confused my legit pain for hypochondria or a way to get drugs. I saw a specialist who refused to give me anything based on the fact that I have tattoos and piercings. My parents believed something was wrong with me and my father write an email to his rheumy because my dr would not give me a referral. This rheumy was kind enough to see me and he believes me. It has been a hard few years feeling like maybe the pain really isn't there and now I have a name for it and treatment. The only thing still bothering me is my fatigue. Anyone have advice on how to deal with my fatigue?

Angie in Boise
AS- indomethacin, enbrel, klonopin

Last edited by AnJulua; 01/17/12 03:06 PM.

Angie 29 in Boise
AS- indomethacin, enbrel, klonopin
Re: Welcome to the 20-Something Club [Re: AnJulua] #225587
01/18/12 02:11 PM
01/18/12 02:11 PM
Joined: Nov 2010
Posts: 2,008
North Texas
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iviary Offline
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Welcome, Angie! Glad you've finally found a doctor who will listen and treat you. It shouldn't have to be so hard. frown

Now that my Humira has kicked in, it deals with my fatigue for me, thankfully. Before it knocked out my fatigue though (as Enbrel hopefully will for you), I made sure to get a full 8 hours of sleep every night, took naps as needed and as able, and gave myself a good long while in the mornings to wake up before going anywhere. It's also good to pace yourself with any sort of strenuous activity, whether that's house-cleaning or physically active work. Take breaks, ask for help as needed, and break things down into smaller tasks.


Mary, 25, happily married pro photographer, momma to 2 great danes.
Dx: Psoriatic Arthritis, Fibromyalgia, Psoriasis, Sjogren's, IBS, Hiatal Hernia, & possible Endometriosis.
Meds: Stelara, Methotrexate, Relafen, Omeprazole, Lyrica, Tizanidine, Voltaren Gel, Tramadol
Re: Welcome to the 20-Something Club [Re: iviary] #225604
01/18/12 07:16 PM
01/18/12 07:16 PM
Joined: Jan 2012
Posts: 3
Boise, idaho
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AnJulua Offline
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Boise, idaho
Yesterday I saw my med manager and she suggested nuvigil/provigil to help with my chronic fatigue. I'm not so sure what I should do. Got any experience with those? I'm so lost and so tired I have created a little cave in my room and I have a hard time lea ving my bed. I also work 55 hours a week. I do go to bed at 8pm to wake up st 6am. So I am getting sleep but then I go home from work just to take a 3 hour nap then wake up for dinner, walk the dogs and back to bed.


Angie 29 in Boise
AS- indomethacin, enbrel, klonopin
Re: Welcome to the 20-Something Club [Re: JamesChoi] #227770
02/19/12 07:36 PM
02/19/12 07:36 PM
Joined: Feb 2012
Posts: 1
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KevC Offline
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Posts: 1
just found this site, thanks. My 23 yr. old mildly autistic son was diag. almost 1 1/2 yrs, ago. It took almost that long to get that diag. Thank God he has little pain. Most all of his spine is already fused. We are trying chiro. again, also adding swimming (of sorts). Yesterday lab work showed anemia and low vit. D. He takes Baclofin, and advil as needed for pain. He also has chol.,H., B/P, diabetes. Anyone else have these comp.? Hope he will post himself soon. Thanks for the site. KevC's Mom

Re: Welcome to the 20-Something Club [Re: KevC] #230874
04/07/12 05:42 AM
04/07/12 05:42 AM
Joined: Dec 2008
Posts: 2,183
Perth, Western Australia
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winelover Offline
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Posts: 2,183
Perth, Western Australia
Originally Posted By: KevC
...... Most all of his spine is already fused. We are trying chiro......


chiro may not be the best for someone with fused vertebrae - can someone else comment about this please?
Are you there Spenser? you know about fusion.......

Last edited by winelover; 04/07/12 05:42 AM.
Re: Welcome to the 20-Something Club [Re: winelover] #230881
04/07/12 07:51 AM
04/07/12 07:51 AM
Joined: Oct 2011
Posts: 971
Wellington, New Zealand
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Shirley Offline
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Wellington, New Zealand
I'm no expert but I'm sure I've read that chiro can be dangerous for fused spines as the new bone is quite brittle.


Shirley
Peripheral and axial AS diagnosed October 2011 aged 50, more than 15 years after the symptoms started. Also PCOS, GERD/oesophagitis/dysphagia, IBS, asthma,chronic rhinitis. Taking enbrel, methotrexate, folic acid, omeprazole, vitamin D, metformin, steroid inhaler and eating low starch/low GI.
Re: Welcome to the 20-Something Club [Re: Shirley] #231196
04/12/12 10:50 PM
04/12/12 10:50 PM

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sequoia
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sequoia
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no chiros for fused. please see your rheumatologist new for appropriate treatment. also, low vit d needs to be addressed. many here take prescription strength.

come on over to the main forum for general information.

welcome all, prayers and peace, sequoia

Re: Welcome to the 20-Something Club [Re: spondylitis025] #232864
05/07/12 05:58 PM
05/07/12 05:58 PM
Joined: May 2012
Posts: 4
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Saurav Offline
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Posts: 4
Can A Person Havin Spondylitis ankylosing for over 40 years be cured..??

Re: Welcome to the 20-Something Club [Re: Saurav] #232901
05/08/12 12:36 AM
05/08/12 12:36 AM
Joined: Nov 2010
Posts: 2,008
North Texas
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iviary Offline
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North Texas
Saurav, you might experience remission, but there is no currently known cure for AS.


Mary, 25, happily married pro photographer, momma to 2 great danes.
Dx: Psoriatic Arthritis, Fibromyalgia, Psoriasis, Sjogren's, IBS, Hiatal Hernia, & possible Endometriosis.
Meds: Stelara, Methotrexate, Relafen, Omeprazole, Lyrica, Tizanidine, Voltaren Gel, Tramadol
Re: Welcome to the 20-Something Club [Re: spondylitis025] #232955
05/08/12 06:20 PM
05/08/12 06:20 PM
Joined: May 2012
Posts: 12
UK
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chloe Offline
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Posts: 12
UK
having one of them days where nothing in my head works and my body is having the same kinda day frown

grip in hand isnt there which is scarey smirk
everything changes from day to day & i dunno what real any more



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