Extreme weakness, possibly overmedicated as well

Have you had your blood checked recently? Could you be anemic? I used to get really fatigued from simple stuff, like going up stairs when my blood counts were low. Detailing the car is actually pretty intensive, but you're right, you should be able to get through it. Don't give up, I think things will improve. What are the options you've been presented with so far as moving forward? What about Entyvio or Stelara, Xeljanz? Maybe there is something out there that will work better for you.

It could be the Imuran. If you are not already doing so, you may want to take it at night.

I agree re the possibility of anemia, and vitamin deficiencies. Even if your vitamin levels aren't super low, you may want to consider upping vitamins. The B and D vitamin deficiencies can definitely cause fatigue. Based on advice of PCP and neurologist (dealing with neuropathy that is manifesting itself while tapering off steroids) husband now takes B Complex, B12 (500 mg), B12 shot once a month, B-1 (100 mg) and D3 (5000 mg).

Thanks all. BW is normal; even perfect. No anemia as I'm not bleeding. Having fairly normal bm's (since HB). My white cells are excellent too.

It's not that I'm sleepy tired, I'm just physically exhausted like every limb is empty.

I believe it's the imuran although my GI would say that it's such a low dose (supposed to go up to 225!) that it wouldn't have any effect right now.

Ewa--- yes I'd love to start a new life. Was looking into FT's in the summer but then the lady bit, fistula thing took over. Now it's not a possibility unless I get the pill. The company that makes the pill in the US, open Biome does not ship the pill internationally.
I guess on one hand that I'm lucky to have avoided all these drugs for so long by using IVIG (blood product). I read a small study in which it closed fistulas, but Canadian Blood services won't give me the dose needed. I firmly believe that's how I ended up in this mess---they cut my dose. Although I was doing well, remission eluded me. 2 months before fistulas, my scope was pretty good with no signs of anything bad to come.....

I think only if/when fistulas close I can perhaps get off 1 drug and maybe go back on ivig.

I'm overmedicated. I haven't left my bed and I'm having trouble getting air in. I was feeling much more energetic on after 5 hyperberic oxygen treatments but since imuran it's been a dramatic change. Although I believe 80mg of humira is also a culprit.

Let the doctor who changed your meds know how you are feeling asap. Not good when you're struggling for air. Better than waiting it out.

q

Q--- my Gi's are away until next week. Will try and get to family doc but it's really hard with my HB schedule.

Also 3000mg of gaba is considered an extremely high dose. I have no one helping with the issue. The last gyne said there's nothing she can do and don't come back. The Wasser pain clinic is ussless. Only saw them once at the beginning of Nov (just after I & D) but they won't return my calls/emails never mind book me in to see the neurologist who can assess, give me botox etc.

I have been able to shower twice a week now without much discomfort. But this week was bad---every time I pooped, I burned. Chiro has helped but that's on hold due to HB schedule. But still NO ONE is helping me get off gaba or figuring it out. It's an insanely high dose. When I pressed on the fistula last night I felt it in my vulva. I know it's pressing on my pudendal nerve. Gaba has blurred my vision so badly. Cognitive delays as well. Trying to do crosswords again to get some of that back

Post Edited (U B Tough) : 1/3/2017 9:40:07 AM (GMT-7)

I just edited my response.... thinking about it, I had a few days of this extreme fatigue prior to imuran....gaba is likely the culprit. But it's been steady since starting imuran.

See what I mean?? cognitively messed up too!!
Wow. how am I ever going to get over this?

Have you had your thyroid levels checked? There are other conditions that could be the cause. See you general doctor maybe?

Something is very wrong. Last night I accidently locked my dog out of my house for 2.5 hours. I don't feel like I'm "present" but I think I feel a bit better in the evening. Someone commented that I'm starring into space and that I'm not following conversations. I firmly believe I am over medicated with gabapentin. I now think I'm coming down with a sinus infection. May have to postpone HB. Will see how I do today.

Thanks everyone. I'll recheck my blood and also check thyroid.

As far as imuran---if my blood turns out ok I may have to continue. I have fistulating chrons which is the worse kind of chrons. Lucky me. I had never heard of fistulas until Aug when my lady issues started. So bascially I have a tunnel that's connecting my rectum to my vag which is why I'm passing gas through there and why I now have vulvodynia. I believe the fistula is pressing on my pudendal nerve which runs right through the pernium. I also have another that continues to abscess. This one has formed 2 exits on either side of my hole. I pass gas through there. As you can imagine, these complications are far from pleasant. Everyday I'm grateful that I'm "only" passing gas vaginally, not stool. I'm paranoid. This has also made me considerably depressed (anti depressants made me worse). I'd imagine a man with ED would feel a bit like me. Not like a woman. I have an increased lack of control in my life due to my bowel. Now it's invaded my front end. No intimacy, no tampons...and I fear passing gas, peeing and passing stool from there.

Fistulas are very hard to close. I'm lucky to now add HB to my arsenal, but I'm not myself at all. And I'm very worried.

As far as Gaba SuzyQ. Yes it's working about 70%. I'm still unable to shower more than twice a week and still don't use soap, wash my hair etc. I still burn at times when I poop. But I'm not where I was a few months ago when I was days away from taking my life. You guys heard my anguish. I'm terrified of that pain returning which is why I don't think I can reduce the gaba. However, after much pestering, I finally, FINALLY have an appointment with the pain clinic next Thurs. I see the neurologist. He may agree to do a botox injection. In which case I may be able to get off the gaba or reduce it. I hope the injection itself doesn't hurt. I wish I had someone to go with me....

Thanks Ewa--I've used a vaginal probiotic when we didn't know what was going on. As far as diet, all those things including beans would absolutely send me flaring. I can't even handle nut flours. I eat well and healthy but a person needs a little pleasure in life so a bag of chips while watching The Bachelor isn't going to hurt. This disease has almost twice killed me. And if I'm going out....it better be with chocolate cake in my mouth!!

I just saw my neighbour (my age) leave for work. Well appointed clothes, hair, makeup.....sniff, sniff, Serious case of envy. That used to be me. This disease is so much worse without working. In addition to income, it robs you of identity, self worth and a purpose.