Previous Thread
Next Thread
Print Thread
Page 2 of 2 1 2
Re: Tinglings and others? [Re: pinou] #280679
06/29/18 07:09 PM
06/29/18 07:09 PM
Joined: Jun 2018
Posts: 5
P
pinou Offline OP
Registered Visitor
pinou  Offline OP
Registered Visitor
P

Joined: Jun 2018
Posts: 5
Indeed, seymour you are 100% right!

It struck me while reading your post. I am currently exactly doing that. I am jumping from symptoms to symptoms and cannot even recall how many of them I went through and which ones freaked me out at the beginning. As a new one arrives, I forget about the previous one and focus all my brain on this new thing. For instance I went through a crazy phase, like believing my iris was not perfectly round, where in fact, it was obviously perfectly round, plus I was seeing an ophthalmologist on a weekly basis. He would have noticed days before me since he was examining my eyes with eyes microscopes and such.

This is exactly what is driving me crazy since end of March. And yes, it's a long time! But because I am abroad It complicated everything (quick remark : having an auto-immune disease in a flare/active period while being abroad is a really extreme shi**y situation).

While speaking about flares, I guess my irits is the result of one, followed by my back pain that emerged one morning (better now). I guess I can consider it the same flare? Do you believe that flares are very sensible to stress, and environments? I am asking because, maybe 2 weeks after arriving abroad, I started to have more and more pain in my feet (this is where the AS first took for me), at some point I even remarked that it has been a long time since I didn't have that much pain. Which led as you know, a few months later to my first iritis.

I know that I am whining while in fact at this very moment I am in good health. Lots of people are in way worse situation and deal with it. I don't know, when I am going crazy about this, I cannot help it ...

I guess we are in the same kind of boat on the fear level.

Cheers!

Last edited by pinou; 06/29/18 07:10 PM.
Re: Tinglings and others? [Re: pinou] #280680
06/30/18 05:30 AM
06/30/18 05:30 AM
Joined: Sep 2009
Posts: 195
B
Barbara57 Offline
Registered Visitor
Barbara57  Offline
Registered Visitor
B

Joined: Sep 2009
Posts: 195
Hi Pinou- Try to take a deep breath and be gentle with yourself. You’ve been through a lot, you have AS and had a recent bout of uveitis so you’re probably a little shaken. It’s not unusual to become hypervigilant and start going google crazy. We’ve all done it. I’ve made tons of bookmarks about things I thought I had only to go back and delete them all when my rheumatologist reassured me that I didn’t have them! And if seeing a neurologist and having an MRI of your brain will address your concerns about MS and you have access to care maybe it’s worth it. Not that I think you have MS but if it will relieve your anxiety and let you cross it off the list I say go for it. I think a lot of us have had weird tingling and numbness at various times. I certainly have.

The experience of a chronic, serious illness can leave anyone a bit traumatized and sensitized to every ache and pain. Chronic illness is a different beast because of all of the twists and turns, hopes and fears that go on for your whole life. It helps me to remind myself that I’ve been through a lot and I’m still ok, that this is still new to me and I’m doing the best I can and moving forward. Find a reasonable plan that will let you check things out with your doctor so you can put your fears to rest and move on. Then find something else that interests you and distracts you so that all of your focus is not on your disease. You will find a path that works for you and it will get easier.

I’m glad you’re sharing your fears - as my favorite James Taylor song says “When you tell somebody the way that you feel, you can feel it beginning to ease.”

Take good care:)

Barbara


Barbara/Age 66. Diagnosed with SpA in 2009. Unable to take NSAIDs due to gastritis. Failed sulfasalazine, Humira, Actemra, Enbrel, Rituxan, Orencia and Xeljanz. Currently taking Cosentyx and prednisone.
Re: Tinglings and others? [Re: pinou] #280683
07/01/18 04:20 PM
07/01/18 04:20 PM
Joined: Jun 2018
Posts: 5
P
pinou Offline OP
Registered Visitor
pinou  Offline OP
Registered Visitor
P

Joined: Jun 2018
Posts: 5
Hello Barbara57,

thank you for your message. It is relieve to know that I am far from being the only that experienced a few weird tinglings. Yes, I plan to do the MRI because I know that if I don't, I will be anxious about this for a long time and I want to escape this anxiety loop.

Definitely, the unknown that comes with AS and other things of this sort is not easy to handle every day. Sometimes it is easier than others ... I guess this kind of "unknowness" comes in the whole package of having an auto-immune disease.

Thank you for you help!

Take care.

Last edited by pinou; 07/01/18 05:49 PM.
Page 2 of 2 1 2

Moderated by  ElinAslanyan, RyanMiyamoto 

Powered by UBB.threads™ PHP Forum Software 7.6.2