Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Eeny, Meeny, Mineey, Mo, which problem now?

Alright fellow research/scientist/pain suffers/my A.S. family what is my problem now.

Got my labs back taken a week ago right prior to my infusion:
Highs and lows only:
RBC 3.18 shows a low sign
HgB 11.1 also a low sign
MCV 101 shows high
MCH 35.1 shows high

These were ordered from my Rheumacrapologist. His nurse said that he read them, no new orders and he will go over them in June when I see him. To me, it look's like I am a little anemic. I know he is always looking for Leukemia or any other signs of Remicade side effects.

Sent this off to my G.P. as well and she said, thank's for the update. In the meanwhile...my problem.

I hit the wall at 2:00 p.m. and am barely functioning through dinner and then have to lay down by 6:30. No juice left to run on. I felt this way twice when dx'd with Adrenal Exhaustion by a Naturalpath. Another fly in the ointment is that even though I now have my groovy pain pump kicking AS pain, I still feel like I am flaring. I feel inflamed, sweat like a pig, and feel tired. Dead dawg flaring kind of tired. This started 2 days ago. I usually feel like this during a flare with increased pain and I have had to use more bolus' for my pump the last few days.

Okay, so there is my delicious dilemma. On an apple fast too now that my little moms has left. Is is anemia, adrenal exhaustion, delayed flare from surgery? Please all pipe in with all of your knowledgeable knowledge. Wiseacres are also included as I need some chirping up

Uhh ohh, I forgot one thing...depressed too. My mother who has never had surgery pushed me too much while she was here and I overdid. My husband who has Aspergers (Autism) was in a constant state of anxiety and blew his top way too many times to count. The only people that I got some encouragement from and shared in my little victories of having less pain and my new ability to get out more, we all of you and a few friends and I am very thankful for all of you.

I am a sad stressed sack eh?

Well, my guess is post-surg tiredness. How much blood loss was there? Probably not enough to drop HGB to 11.1 unless it was already that low.

Tiredness from overdoing things while mom was there could be a cause. And pain pumps help with pain, not tiredness. Flaring can cause other stuff besides pain, like tiredness....

I wish you had a doc who would put all the pieces together and do something. And I don't know any jokes. Too tired from the past 2 weeks of OT. Today, doing laundry and fixing up the guest room for my mom who is coming on Sunday. I work every day till then except today. And waiting for a lawyer to call...she put me off last week and this is her last chance before I start looking for another one. Grrr.

Hope you find peace in the household....and answers to your issues. (((((Pea))))

I'm afraid I have no words of wisdom being so new to all this myself, just wanted to say I hope you can find some answers and start to feel better soon - I know when I am that exhausted, everything becomes totally overwhelming! Hugs

Girl you are just as bad as me. I never want to get crap from you about overdoing it ok. You naughty thing.

Seriously I agree with the others, I think it may be a combination of overdoing it and a possible flare or just recovery from surgery. From my understanding the pain pump is just that, it works to decrease your pain not to actually help in any real way with your AS. One would assume that you will still get all of the other symptoms of a flare just with less pain. If this is the case you need to be aware of this and take it easy as your body will still need time to rest and recover.

It seems the doctors don't seem very concerned with you bloods so my advice would be try not to get too concerned but perhaps get more regular tests for a little while to keep an eye on things.

All the very best. You are my sanity so please don't fall. lol

rather than just testing haemoglobin, did they test iron stores? I know in my pre-coeliac diagnosis days I used to have problems with malabsorption, but often my haemoglobin would be within the normal range (just), but when they did more detailed testing of iron stores (not quite sure exactly what the tests were) I was way low - meant I had nothing in reserve. I really noticed it the last time I ever gave blood (before I was told not to do it again) - they had tested me fine, but the donation just took it all out of me, and I was incredibly slow getting my levels back up again.

Pain pump will deal with pain. If you are flaring, and its inflammation, no amount of pain meds will get rid of the inflammation. That might kind of make it feel that the pain meds aren't working as well, when its really that there is some residual stuff that the pain meds just cant deal with (unless you got to the kind of dose that would virtually knock you out). Delayed flare from surgery sounds quite plausible. Don't know enough about adrenal fatigue to comment.

Glad you could come here to vent. You need to have somewhere like this with stressed mother and hubby.

Sorry to hear your having problems Pea. I don't know about the blood work numbers...But it sure makes sense to me that your body would react now that the surgery is done and your mom has gone home...Glad the pain is more tolerable...hope you can figure out the fatigue....Cerc....was talking about stores in her post...I believe it's called ferritin.

Hope u can get sorted and start feeling better:)

I can never figure it all out, but if I'm tired, I sleep!

I'd say flaring plus stress is enough to do it.

My naturpath and PA in GYN office who helps with my hormone stuff told me I had adrenal fatigue. My new endocrinologist (who is no longer my doctor, she told me I don't need her) told me adrenal fatigue is a bunch of fooey. I know its a controversial topic; I've read books on adrenal fatigue that my PA recommended, and have read the opposing information on the web. So, who knows regarding that.

For me, flaring always makes me tired in the same way that coming down with a head cold or the flu does. And I just sleep it off if I can.

But too, blood sugar can really do me in if I don't eat properly. Too much sugar or complex carb and I'm out for the count. Or just eating too much period and I'm in LaLa land.

Seriously,
I love you guys. Whether or not you have answers for me, you still are there to lift me up. Could a person ask for anything more? I think not.

Rheumacrapologist called me a Medrol pack since I am flaring. Yes, I still have to be conscience of everything A.S. even though I don't feel the pain of it. Everything else on my blood test which is a complete comprehensive that he always does, show's A-okay.

I am going to listen to you all and my body and lay low for a few weeks. Can't do anything else but rest...tooooo sleepy . Thank's again.

Probably totally irrelevant, but I used to get horrendous wipe out brain foggy tiredness pre-coeliac diagnosis - always after eating protein (but sometimes at other times). I had it explained to me as resulting from leaky gut - protein molecules weren't getting broken down in my gut properly (right down to amino acids) because of the coeliac damage which meant that slightly bigger molecules were getting into my blood stream. Some of these breakdown products had some similarity to sedating things, so when it hit my poor braincells I was out for the count. It was funny though that if I kept doing physical things I was fine. The moment I stopped I'd be asleep. It was hard to understand how I could walk several miles and feel absolutely fine, then totally wipe out the moment I stopped.

Well I started my Medrol dosepack so I will let it do it's work while I rest. Today I did have to drive for 30 minutes to get to my grocery/pharmacy. I have a young woman that I mentor and I had called her prior to going knowing there was no way I could push a cart around yet this soon after surgery, and asked her if she would be my cart pusher. Bless her heart, she met me there, slung that heavy cart around and we got to catch up. Did my heart good to at least get out and get one thing accomplished today and she a good friend.

I hear you Cemc. We are gluten free here as my hub has Celiac Disease. There is a gut/blood barrier brain connection to a lot of things and illness'. Right now, I am sticking to apples and will have a spinach salad for dinner.