Crahsing... Part of the diesease?

[vdub]

Ever once in a while I start crashing. Same thing happened about two weeks ago. Not quite sure what causes it or leads up to it – nothing unusual correlates. Starts by feeling tired, then a raging headache (worse than the one I have most all the time), then start aching all over. Sort of feels like the flu, but isn’t. Is it part of the disease? I can’t nail it down to any cause or specific trigger. It usually lasts only a 12 hrs or so. Sure does suck….

[Sangye]

Yup, happens to me on a very regular basis. I don't get the headache, though. I get sudden extreme weakness and fatigue, shuddering chills, feel like someone gave me anaesthesia, diarrhea, and sudden tearfulness for no reason. My face swells into a moon face within a few minutes.

It can happen completely out of the blue, but it always happens if I get an adrenaline jolt-- like hearing stressful news or playing a video game-- or if I overexert. It's miserable and quite frightening.

[Jack]

Same here - the good day / bad day syndrome! I seem to go through these cycles every week or so.

[delorisdoe]

I am always looking for what else i can blame it on...if my shoulder hurts its my bra, if my left ankle hurts its because i was walking funny due to the pain in my right knee the week before. my writs-i twisted it stuffing the turkey and if i am tired its because I stayed up to watch american idol. It does seem to come in waves of 24-36 hours for me. damned turkey.

leigh

[vdub]

Good to know... But, dang.....

[Sangye]

I am always looking for what else i can blame it on...if my shoulder hurts its my bra, if my left ankle hurts its because i was walking funny due to the pain in my right knee the week before. my writs-i twisted it stuffing the turkey and if i am tired its because I stayed up to watch american idol. It does seem to come in waves of 24-36 hours for me. damned turkey.

leigh

LOL I do the same thing.

[delorisdoe]

YEAHHHHH i am not crazy.

[vdub]

As most of you know, I have two medical issues; panhypopit and wegs. The panhypopit was caused by wegs, but it is a totally different medical scenario and a totally different treatment issue. Soooo, I have 5 active doctors, too include a rheumy and an endo.

All my docs are giving me the best possible care I could ask for and each are tweaking things to make my life the best that it can be. Soooo, I get blood tests every two weeks and between all the docs, I have a LOT of appointments.

My problem is the tweaking. I'm getting small adjustments all the time. I know that each doc is only trying to make things as good as possible for me, but in doing that, they are making things really annoying. I'm not sure that each doc realizes how much info I'm being bombarded with.

Right now I have some aches and pains, I have marginally high blood pressure, normally I have a headache, but generally, I am happy with life as it is and I wish they would just supply my meds and leave me alone. If that amounts to only living 10 years, then so be it. At least, it will be a semi-good 10 years.

Unfortunately, in order to get the meds, you have to play the game... Life goes on....

[Jack]

I'm not so sure that you need be dictated to about your medication to that extent. I usually discus the options with my docs and if I say that I don't like the idea of something they are always receptive. Quality of life is a major consideration and has a strong influence on the treatment chosen. I think this confusion can be expected when more than one doctor becomes involved and there really should be someone in a primary role who communicates with the others.
I had a situation recently when I had to stay at a different hospital to usual and the doctors there tried to change my treatment. I simply refused the changes until they had discussed them with my Wegs specialist. The changes never happened.

[Sangye]

vdub, I can't imagine how complicated it is to manage your care. The endocrine system is delicately balanced and it might require your docs to continually make changes. If you don't tweak the endocrine system as needed it can go wildly out of control and might be too late before they get it back under control. There's no reason why you can't live a long, full life.

I think in your case it might be better to find ways to get used to the tweaking so that it doesn't annoy you so much. We like things to stay the same but nothing in life really does! Also, if your docs are all at the same institution, you might ask them to conference with each other occasionally instead of each one giving you directions.