Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group I worry,

I'm a little better painwise for now.

But I have problems shaking the thought of what I have been going through. Do any of you have that? -I've had three or four seperate heavy "incidents" like this last one through my life and I was always blessed that when they passed, they passed from my mind completely as well.

But this time, it was so heavy and I can't just shrug it off and think "it's just my anxiety" , as I don't believe that anymore.

Just to sum it up:

I have (and am) struggling with muscle and joint pains.

I have what feels like altered sensory nerve episodes. (skin will feel wet or cold even when there is no reason to. And when it does it's like its ever increasing in magnitude. (I feel colder and colder and colder etc) I get bursts of increased smell or taste. And so on.

Fatigue

Severe stomach problems (GERD, bleeding from the food pipe, constipation, diarrhea etc)

Lacking energy to do choirs and things I need to get done.

Loss of sensation of breathing. (Yeah I breath....I just cant feel it happening even when trying. Also episodic)

Extreme need for sleep. (I can get home from work, fall asleep then wake up after 5 hours, stay awake for 1 hour then sleep through the night again.)

Larger muscles twitching and spasming. (on the lower right arm and in the front of me left shoulder)

Dizzyness and lack of coordination

Anxiety and depression (oh yes, I have to face they are both there. The nerve symptoms scare me and give me anxiety) Depression, well I call it that when I feel so exhausted and cant get anything started.)



So now I guess I worry if it could be a nerve disease. Like MS, or my personal nightmare: ALS. I guess it may just be my mind running off with me, but I struggle a little dealing with it,I admit.

Any advice? -And do any of you feel scared of what the heck is going on, when you have no diagnosis?

Hello Gilth

Not sure I have many words of wisdom for you... but I went through the anxiety/depression phase and when I could not block out the "what next".

I went through flares in back/SI, neuropathy and also severe intestinal issues at the time. I had read that intestinal issues could be tied to the brain at the time... so I wondered if that had something to do for it.

I had to get some professional help for the anxiety/depression that helped... also helped that found some answers for the pain. The intestinal issues were the worst, really messed me up emotionally.

Hope you can find some answers and some peace of mind.

Take care,

Tim

Gilth- glad your pain is better.

I get scared too thinking about the future and reality of illness. My old Rheumy used to tell me to never give up finding an antidepressant or anti-anxiety medication that my body can tolerate. He said his rheumatoid disease patients managed pain better with a psych med. Just keep on telling your docs what is going on so they can help and if you don't get answers, keep trying to find a doc who can help. I see five Specialists now, which is helping but expensive.

My fatigue was horrible due to low iron, hypothyroidism and poorly managed AS. My fatigue is improving now that I am treating my disease aggressively, taking iron and Armour thyroid.

Do any of us sleep well? I can see why you are not sleeping well. You are probably overly tired from working, GERD and then you are probably uncomfortable from being in one position for too long. Have you tried eating a super early supper, sleeping with extra incline and maybe a hot shower or bath before bed.

Hope life gets easier. Just keep on trying to fix.

Shari

Could the anxiety be from a medication you are taking? I know someone that just stopped taking tramadol because it was casueing anxiety, once the med was removed most of the anxiousness went away.That is the only thing I thought of I hope you feel better soon.

Hi

I couldn't take Tramodol because it has an antidepressent in it which is a sister drug to Effexor and I was already on Effexor. We tried decreasing the Effexor because I was getting too much and had terrible anxiety. Finally I just gave up the Tramodol. It didn't help much with the pain and sure made me anxious.


Janet

Have you ever been investigated for MS? The sensory things you are describing especially the increased feeling of cold or hot? The depression. I am sure you have already had it ruled out. Hope everything goes waaay better for you. Never give up!

Hi Gilth,

Would you mind sharing the medications you are taking with us.


Janet

Some of your symptoms also sound like Fibromyalgia...assume your rheumatologist has also checked you out for this...I agree with what everyone has said...Keep telling the doctors...and don,t minimize any of your symptoms....No wonder your anxious and depressed...Who wouldn't be when you have all these symptoms and no diagnosis...I have been there too...It's hard not to worry when your waiting for the other show to drop all the time...Your body's got to be on overdrive. I hope things get better very soon. Don't give up.

I am so sorry you are going through this. I wish I had some answers for you. You just really have a lot going on. I will be praying for you.

Hugs and Blessings
Possi

Hmmm, well I am really glad you posted. I for one want to know how you are doing and that includes worries. I'm thinking I'd like to see you consult with both a rheumatologist and a neurologist and a gastroenterologist: do you have these docs already? Total team approach just to rule stuff out and try to get to the bottom of this. I don't blame you for worrying. When you don't feel well, it is as though your body is yelling, "emergency! need help here!" and so that fuels anxiety. Best, best wishes for healing and please keep me posted.