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#261001 - 11/21/13 02:25 PM AS
neb5087 Offline
Registered Visitor

Registered: 11/21/13
Posts: 9
I'm new..


Edited by neb5087 (11/21/13 07:13 PM)

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#261030 - 11/22/13 10:48 AM Re: AS [Re: neb5087]
becca Offline
Registered Visitor

Registered: 02/26/11
Posts: 174
Loc: Ohio
welcome.

if you feel like it introduce yourself, share your story. We are hear to listen.
_________________________
i can't fall back i came too far, hold myself up and love my scars...

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#261035 - 11/22/13 01:23 PM Re: AS [Re: neb5087]
neb5087 Offline
Registered Visitor

Registered: 11/21/13
Posts: 9
Thank you very much!
Well I am 22 years old, and after several visits to the doctor I was sent to a rheumatologist. I have been diagnosed with AS without being HLA-B27, is that normal? It has been a struggle; I recently got put on FMLA after being threatened with losing my job because I couldnít lift a 35lb box of quarters. What a joke. It is hard to have so many people around you not know what you are going through; it is something that just canít even be explained. I always have pain and obviously it gets worse at certain times, more so when I am stressed, which anymore is all the time. For the time being I am only on steroids until they figure out what medicine they want to put me on, and it helps with the inflammation but not so much with the pain. I have also been diagnosed with Hashimotoís disease so between the two I am just physically exhausted. I also have been being pushed to go on 2 mile walks every evening, which is great but there are some nights I just donít have it in me, and Iím in so much pain that I canít even stand to go. I keep getting pushed and pushed to go, itís not that I donít want to, itís just I canít build up the energy to do so. I am under the impression that it is going to get much worse before it gets better, and it scares me to know that it is only going to progress as I get older. I have also fallen into a bit of depression, I just feel like I am alone with this most of the time. I donít get to go out and spend the time with my friends that I need, mostly because people my age only want to go out and drink, and that is something I just donít have in me anymore. But thatís my story, any suggestions would be awesome, itís so great to know that there are several people that can relate to what I am going through.


-Nicole smile

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#261182 - 11/26/13 01:04 PM Re: AS [Re: neb5087]
becca Offline
Registered Visitor

Registered: 02/26/11
Posts: 174
Loc: Ohio
Nicole,

I have heard of some people having been diagnosed with AS without the HLA-B27 marker, i don't think it is common but it happens.
I am 23. I had AS for about 8 years before i got a diagnosis, and during that time no one believed i was in pain. Believe me i know what it feels like to be alone in this.

thats pretty awesome that you try to go for a 2 mile walk every evening. keeping things moving will help. but it is also good that you don't push yourself when you can't.

Whatever you do, please don't isolate yourself. It is completely understandable that you wouldn't want to/couldn't go out drinking with friends, but still make sure you find things you can do with friends. Spend time with your friends, if you feel comfortable, maybe you could share with them what you are going through, if you think they would understand. What i am trying to say is make sure you build a support system for yourself. It will help with the depression too.

I am glad you shared your story smile looking forward to hearing more from you!

Becca
_________________________
i can't fall back i came too far, hold myself up and love my scars...

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#261218 - 11/27/13 10:50 AM Re: AS [Re: neb5087]
Shirley Offline
Registered Visitor

Registered: 10/24/11
Posts: 971
Loc: Wellington, New Zealand
I'm not a 20-something but just wanted to say welcome to the HLA B27 negative spondy club! Only about 90% of AS sufferers are positive, so there are actually alot of us in the remaining 10%... We can find it harder to get diagnosed because of the myth that people with AS are all positive (just like the myth that it's a men's disease).

It's a tricky balance between rest and doing stuff and you'll need to work out what works for you - I've found that a few days rest can help me kick a flare but "pushing through" makes it keep getting worse. It can take a while to come to terms with and it's natural to grieve right now, but do ask for help if you think the depression's settling in. Prednisone can itself make some of us more unstable/moody/hyper, so I hope you and your rheumy can work out a better treatment for you.

It might take a bit of time to settle on the right treatment, but you will get there and things will get better.


Edited by Shirley (11/27/13 10:52 AM)
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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.

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#265060 - 03/18/14 03:01 PM Re: AS [Re: neb5087]
ElizWithAS Offline
Registered Visitor

Registered: 03/07/14
Posts: 6
Loc: Portland, OR
Welcome!! I'm new here, too.

I know how you feel about going into a depression. When I was being tested, I felt so alone and afraid for what the future might hold. Thankfully, my rheumatologist saw that I looked a little frightened and asked me what my concern was. I was scared about the possibility of become disabled. She reassured me that she was going to try what she could to prevent that from happening. My disease was caught very early (less than a year after onset) so she told me that with the medications, I had a chance of little to no fusion in my spine. It is possible once you get on the right medications. And I understand, this is a learning process trying to figure out what works best for you. It is difficult. We have to learn our bodies and what it can tolerate and what it can't tolerate. Eventually, we will learn and we now have a supportive environment to help us understand this disease.

Find a good rheumatologist and communicate your concerns. It will help you in the long run and you might feel better about your future.

I hope that helps you. As for your friend situation, I would explain to them what you are going through. If they are good, supportive friends, they will want to help you. Maybe you can talk about things that you all can do together that doesn't involve long nights out drinking. Talking on the phone helps a lot, too! Then you can be comfortable and dealing with your pain, while also getting in time with your friends.
_________________________
DX: Ankylosing Spondylitis, Dec 31, 2013
HLA-B27 +
Meds: Humira (40 mg/every other week, Sulfasalazine (3000 mg/ a day), Tylenyol Arthritis as needed, Flexiril or Metaxalone as needed
Pain in SI joints/low back, left hip, and left knee.

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