Diagnosed with AS

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tamneric3
New Member


Date Joined Oct 2005
Total Posts : 9
   Posted 10/21/2005 2:27 PM (GMT -7)   
just wanted to say hi to everyone, im new here and was just looking for some chat rooms, i was recently diagnosed with AS...and am having a very difficult time with it, so i thought that i would try to find others with the same, and maybe get some ideas...im 37, mom of 3 so my days are pretty long and painful..hope to talk with you all, have a great day, nice to meet you



Tammy

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 10/21/2005 4:38 PM (GMT -7)   
Hi Tammy,
Welcome to Healing Well!!!!!!!!!!!!!!!! :)
AS is the pits I know! I have AS along with RA. The pain and spasms are enough to drop ya to the floor.
Ideas: for the AS I take DMARDs (Enbrel first, now Humira); Diazepam to break the AS spasms, heat, and Lidoderm.
Since being on the TNF's drugs the AS has been pretty good. A lot better than it was.
Sitting is still a big problem.
How did everything start with you? How long have you had this?
Take care Tammy.
Looking forward to hearing from you!
Sincerely
Erin

Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 10/21/2005 4:44 PM (GMT -7)   
Hey Tammy - Welcome to Healing Well! I am 32 and also have AS along with Psoriatic Arthritis... I am also a mother of 3... Ages 8,7,6... I am on Enbrel and have been since March. I must say, it has helped me immensely. Good luck to you, hope to hear more from you, and if you ever need anything, we are always here... - Duck
Diagnosed January 2005 - Psoriatic Arthritis/Dactylitis/Spondylitis 
   -Currently taking 50mg shot weekly of Enbrel
 
Diagnosed May 1998 - Graves Disease
   -Complete Thyroidectomy September 1998 - While 11 weeks pregnant
 
Other Complications - GERD/Scoliosis/Hiatal Hernia


tamneric3
New Member


Date Joined Oct 2005
Total Posts : 9
   Posted 10/21/2005 5:30 PM (GMT -7)   

nice to hear from the both of you, it is great to actually talk to someone who has these problems, i don't know of anyone, and i have to say, my hubby is pretty sick and tired of me complaining all the time..i try real hard not too...i have to say, I LIVE for my heating pad...and sitting here in this computer chair is killing me as we speak,,,lol...as far as i can remember i have had backaches, but it changed when i was sick with bronchitis (for about a month) i hate going to the doctors..lol, but this backache i had just wasn't the same, and wouldn't go away,, i also have fibromyalgia, i thought that maybe when this came about it meant that i didn't have that, but as my doctor said, NO, you both...i just went to see him yesterday, guess it's flared up pretty good, this is the first time that i felt that my hips were going to give out, and my tail bone was killing me,,,just seems alot worse right now....gave me some percocet for the pain,,ya ok..and i have been on clinoril and zanaflex, to tell ya the truth, i don't know if they are helping at all, did any of you start on this? seems as though im not on the best medicine i could be on, maybe because it's only been a few months? i have restless leg syndrone, which drives me crazy, i can never sit still..well, i guess im ramblin' here, i just want to say, thank you for being here, and i hope i don't drive you crazy too...bye the way, i have 3 girls, there ages are 11...6...4

hope to talk soon

take care, and hope everyone can feel good

Tammy


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 10/21/2005 5:40 PM (GMT -7)   
hey Tammy,
pain relievers alone i feel did not even touch the AS. next time, talk about Enbrel. it's approved to relieve and stop the progression of AS. the injections are easy, and worth it. i think that with Enbrel, pain meds and antispamodics, the AS will become less severe.
i was really happy with the way the enbrel helped the AS.
oh, and ramble on!!! ramble away!!! that's what we do here!
:)

Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 10/21/2005 6:12 PM (GMT -7)   
Hey Tammy -

I have been on a whole bunch of different meds... mostly for my arthritis.. I have been on Feldene, Mobic, Voltaren and in March I was put on Enbrel... So far, I haven't had to take anything else with it... I know some of the other members take methotrexate and plaquinel, but I've been lucky up to this point...

It is hard for our hubby's to understand what we go through... Especially when they are healthy, my husband looks at me sometimes and says, what's wrong? And I am so tired of saying, "I hurt" or "I ache" so I say nothing and he just thinks I'm moody... I don't mean to be, but it's so hard to explain something like this to someone who isn't going through it themselves... No matter how much they may try, they will never fully get it.. Luckily, my hubby is supportive and has been very supportive of me.... I try hard not to complain too... it really doesn't do any good, I feel like then my husband will start to resent it and then not be supportive... so I rarely say anything and he knows if I finally do say something about it, it must be hurting me real bad...

What are you taking for the Fibro? Has your doctor thought about putting you on Enbrel or Humira? My best to you and please, come here as much as you want and ramble on...we all do it and never get sick of hearing anyone else do it either... Keep in touch and let us know how you are doing - Duck
Diagnosed January 2005 - Psoriatic Arthritis/Dactylitis/Spondylitis 
   -Currently taking 50mg shot weekly of Enbrel
 
Diagnosed May 1998 - Graves Disease
   -Complete Thyroidectomy September 1998 - While 11 weeks pregnant
 
Other Complications - GERD/Scoliosis/Hiatal Hernia


Sailor
Regular Member


Date Joined Aug 2005
Total Posts : 66
   Posted 10/22/2005 2:03 PM (GMT -7)   
Hi,

just a guys $.02. NOTHING drives us more crazy than when someone we love hurts and we can't FIX IT!!!! When you say that you hurt, the first thing we want to do is stop the pain, when we can't, we feel that we are comming up short on our part of the relationship. It takes a long time to teach us that all we have to do is listen, tell you that we care and if there is anything we can do, let us know and we'll do it. The other stuff you see in frustration and fear and anger cause we can't so anything about your pain. Don't be afraid to say that you are hurting, just be sure that he undrstands that you don't expect him to do anything about it.
If I knew I was going to live this long I would have taken better care of myself.


Flopsie
Veteran Member


Date Joined Jun 2005
Total Posts : 1361
   Posted 10/23/2005 8:40 AM (GMT -7)   
Sailor, have to agree with you. My hubby is always looking for ways to "fix" me. He knows I hurt, and feels very inadequate because there is nothing he can do. But just a hug and an I Love You works wonders for the soul.
Don't walk in front of me....I may not follow
Don't walk behind me....I may not lead
Walk beside me..and be my friend...
                                    Albert Carnus
 
and Lord, put your arm around my shoulder and your hand over my mouth
 
Help HealingWell.com continue to help others. Donate Today....http://www.healingwell.com/donate/
 
co-moderator for Arthritis and Anxiety/Panic
 

tamneric3
New Member


Date Joined Oct 2005
Total Posts : 9
   Posted 10/24/2005 8:15 AM (GMT -7)   
thank you for your input on the hubby problem..lol, he's getting better, i just try not to talk about it much, but i hadn't thought of it that way before sailor, thank you for that...

deb in indiana
Regular Member


Date Joined Aug 2005
Total Posts : 387
   Posted 10/24/2005 7:27 PM (GMT -7)   
not only does hubby not get it my kids don't either iam like you i just take the meds and keep going but man does the tail bone and butt pain does get to you i can deal with every thing else but you can't walk set or lie down with out the darn pain can you ? deb

tamneric3
New Member


Date Joined Oct 2005
Total Posts : 9
   Posted 10/25/2005 7:06 AM (GMT -7)   
no deb i can't, right now it's pretty bad,, and seems to be heading up toward the neck...and yes, kids are hard, i keep trying really hard to have patience with them, but it's hard, mine are 11-7-4 i try to get them to help out, but don't want to make feel bad either, there still kids, and if you don't have the pain yourself (no matter how old you are) you can't fully understand how it feels..i keep hoping that my kids don't end up with this when they get older...

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 10/25/2005 2:05 PM (GMT -7)   
Sailor hit the nail right on the head! thanks for that input...my honey says the same thing...he wants to fix me, and is angry that he can't. it's got to be frustrating. i know i get upset when he gets a cold! LOL, i feel so bad! for a meesly cold! hah.
Tammy, get on the dr.s back ASAP about this pain. it sounds like it's not under control at all. there is relief out there and you need it!
try to keep off you legs and take some pressure off your back when possible, i know! WHEN?? with kids and a family there's no time, i'm sure.
i give you a lot of credit for trying to keep up with all you have going on.

tamneric3
New Member


Date Joined Oct 2005
Total Posts : 9
   Posted 10/25/2005 4:55 PM (GMT -7)   
your right erin, pain isn't under control, like i said, (i think) was waiting for the dr. to call so i could go back in for the xray and discuss this pain issue thats been going on, and well, they called today finally, at 430 and said that i have an MRI appt on the 4th, ...yup, thats it, nothing else, so i guess im just supposed to stay like this, i don't know what there doing, except making me angry, this is how it seems to be with this doctor, i swear sometime i think that he think i just make this crap up, i just don't have alot of patience when it comes to dealing with doctors, and waiting for phone calls ect..ect..now i'll get the MRI, and probably have to wait a month to find anything out...i don't know,,,guess i'll have to give it a few weeks, in the mean time, bare with me,,,,,i'll be "in a mood" (as my kids would call it)..lol thanks for the encouragement, and credit,,it isn't easy, doesn't matter if we have kids or not, this is crazy..

hugs to all
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