Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group How to deal with AS - Newly Diagnosed

Hi my name is Zaida, I am 36 years old, from Puerto Rico, last month I was diagnosed with sero-negative spondyloarthropathy and sacroiliitis (AS). At this moment I am on a STD from my work as a Financial Analyst, because of the back pain and problem with my hands. I also have IBS, and Hashimothos Thyroiditis uncontrolled.

I am writing to see if someone could help understand how do you deal with your initial diagnosis with AS, because for me has been the hardest part: How I will be doing after all of this? I have problems to stay seated for a long time, because of the low-back pain, and for me is seeing my entire career going in front on me. I received a lot of pressure from my family, because they don’t understand the pain, and this is like being in this circle where you enter and there is no way out.

And believe me, Yesterday I start looking information for self-employment, later for SS, and later for Sacroiliitis and finally I get to this group, that for me was, Tank’s God! Because, everyone said you need support, but where you will get it, since none one understands.

Please, I will appreciate all your help. Zaida

Zaida, welcome!

Try to look at the situation the other way around ....... there are people who stay undiagnosed for veeeeeeery long, but you know what you are facing which gives you a great advantage in the match. I was glad when I finally knew I had AS because until then it was just "everyone has some pain in their back, it is just aging" which didnt help a bit. Now I know and I can seek help and docs know and can help.

I am just having a hard week myself, luckily my husband supports me a took great care of me and the kids, but my doc could help so I hope I am over the worst this time.

Wish you all the best, dont give up and keep your life, it may be a bit harder at times, but sure is worth it!

Zaida, I was diagnosed when I was just 2 years older than you. Like you probably did, I had lived for many years with back pain. Nobody could tell me why and I put it down to any number of stupid things.

Hana is right. Now you know what you are dealing with, which means you can plot a course of action.

I know how it is to sit all day at a desk, to have trouble standing up and to end the day feeling about 100 years old. There are ways you can make changes to your work area, so that you are always moving. For instance, my monitor is between my keyboard and my mouse. That way, if I'm working on the keyboard, I have to look to the right to see my monitor. If I'm working with the mouse, I have to look to the left to see my monitor. Also, I have an ergonomic keyboard, so that my wrists (and by association elbows and shoulders) are not being forced into an unnatural position while I type.

My chair has excellent lumbar support, so if I get tired, I can lean back without my lower back going into a bad position. I also have a special stool that I can put my feet on while I work to take the pressure off my lower back.

My telephone is to my extreme left, so if I am typing I must twist in that direction to reach it.

My printer is behind me, so I have to turn completely to get work off of it, and my paper supply is to the right of the printer and also below and to the left of it. I work with sometimes 7 different types of paper, so I always have to turn, twist or bend to reach the paper depending which type I need.

And, my employers installed a special shelf for me to work at sometimes, so that I can stand up and continue working, without hunching over. You might find that to be of benefit too.

As for the IBS, I suggest you take a serious look at the low starch diet. Many of us have found it to be of great benefit in bringing down our AS pain levels; however, it can also be extremely beneficial to someone with IBS. If nothing else, eliminate wheat from your diet if at all possible. Then listen to your body when it comes to the other types of starch.

Zeida, there are so many things you can do on your own to keep moving. A good exercise program involving stretching and strengthening of your muscles is key. Walking, swimming, dancing (several of the women here do Belly Dancing and I do Flamenco) are all good, depending on the severity of your AS. You will find Tai Chi, Pilates and Yoga are all extremely good, especially if you can find a teacher willing to work with you on so that adjustments to the moves can be made depending on your physical limitations.

And keep coming here. Too many of us understand what it is like when family and friends seem to think that there's nothing wrong because we "don't look sick". I know you will hear from alot of people about that.

Welcome to KA.

Hugs,

Zaida,

I was a couple of years older when I diagnosed but I'd had similar episodes for years. One started and did n't finiish.

My advice, do not read too much some of the stuff you read is wrong, some of it is scary. Try and keep it to newly diagnosed. Learn more as you need to....

The diet if it works can really help.

Exercise, is a bit trickey as at different stages and even when in flares you may respond differently. You get to learn in the end. Start off low impact, stretching, soft surfaces and for me heat. I only use ice on certain joints when they swell and that does n't happen often these days. Hydrotherapy can really help.

Some things you need to know. Enthesitis is the general problem in Spondy, it's inflammation of the points where muscles tendons and ligaments join the bone. It's easy to stretch strain ligaments etc so go careful.

The spine is joined to the pelvis by heaps of ligaments, called the sacral illiac joints. It's the point they usually look for in Spondy. These are the sore bits you get either side of your lower back almost on the pelvis.

Keep an eye out for eye pain redness, sore swollen joints and gastro problems. Go see your Dr and let them know.

Your best indicators of your condition are stiffness (after rest), pain, and fatigue....fatigue is noit just tiredness it includes I have a cold/flu coming, unwell.

The people that do better are those with good support at home and at work and who make changes as they need to/as opposed to long afterwards when it is too late.

Watch your gastro, especially when you start new medicines. If you get any changes or worsening tell your Dr.s

Are you HLA B27 positive ?

Dave

Thanks Kat, it is the first time that I am thinking that maybe I only need to make modifications in my actual job to go back, great ideas, and thank you for the support.

Thanks Hana, It feel better when you received support from others that are feeling just like you.

Hi Dave

Thanks for the information. No I am not HLA B27, the Dr. explain to me that this is why is seronegative, but it was find on Bone Scan and confirmed in the MRI in both lumbo-sacral areas, but with more damage on the right side. He explain that I should have it a lot time ago, since the simptons that I was showing and the damage that was discovered.

The bone scan also shows arthritis in both hands, like RA, and my R-Factor is quite high. At the beginning he told me that I have one of two not related conditions: AS or RA, but after the HLA B27 arrived negative and the MRI confirmed the sacroiliitis, he told me that my condition was seronegative spondy, with like a / RA. I believe that this is to see how my body will continue, also he told me that medications are the same.

At this moment I am on HUMIRA, Ultracet and Ultram ER, since I am alergic to aspirin.

Dave, one question, I have been seen a lot related to diet that could help to control the condition, If you could give me more information or tell me where I could get it.

Thanks a lot Zaida

Hi Zaida!

Welcome!

You've already recieved some really good advice, I don't think I can add to it really.
You just take it one day at a time. You'll amaze yourself as to how adaptable you are, so don't give up on yourself.

Take care!

Marne

Zaida - welcome

Like others have said - thank goodness you have a diagnosis. I went for almost 20 years with the wrong diagnosis.

I too work computers - there are many adaptive pieces that help with workstation re-configuration. I have an adjustable work surface so that I can sit - stand or lean on something. I also have a wonderful chair called BodyBuilt J3500 that adjust all ways. I have brought several heating pads and ice packs to work that help when pain hits the "10" range.

There are many people here with great wisdom.

Personally I just found this site after 38 years of AS. I started the diet and it helped immediately.

I wish you luck and tenacity with work and your journey.

If I can help please PM me.

Brian

Hello Zaida,

Welcome to Kickas and glad you found the site. It is very helpful in battling AS from a learning standpoint and also for support if you feel you have no where to turn.

I hope you can find some answers to help you. In regards to your question posted to David... you can navigate this site from main page to learn regarding diet and/or visit the diet forum. There is also a site regarding the diet translated to Spanish if that helps you out by Pelo.

Here are some links to make it a bit quicker at first...

https://www.kickas.org/londondiet.shtml - Basics on diet in English

https://www.kickas.org/ubbthreads/postlist.php?Cat=0&Board=starch - Diet forum if you want to ask questions

http://www.izorrategi.org/ - Diet discussed in Spanish

Best to you Zaida, you are not alone in your fight. There is much to learn and learning about AS can only help.

Tim