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. :biggrin1:

[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.

[pberggren1]

Conferencing is good when so many docs are involved like that. I too crash from time to time, but I think it is more of a case of me overdoing it the day before.

[vdub]

I just have to vent once in a while, then get over it. :wink1:

My docs are spread all over. Two are 100 miles from me and 100 miles from each other. One (SLC) is about 400 miles. Two docs are only about 2 miles from me (that's nice). That's the hazard of living in a small town. On the upside, we don't have traffic jams, crime, etc.

[pberggren1]

I love small towns and cities. Where I live we have about 16,000 people and can drive from one end to the other in about 10 minutes or less.

[Sangye]

I just have to vent once in a while, then get over it. :wink1:

My docs are spread all over. Two are 100 miles from me and 100 miles from each other. One (SLC) is about 400 miles. Two docs are only about 2 miles from me (that's nice). That's the hazard of living in a small town. On the upside, we don't have traffic jams, crime, etc.

LOL Vent away!!

That does complicate things even more to have docs all over the place. I had a similar situation in Arizona, with several docs in my town, several at Mayo 200 miles away, and another in Phoenix 200 miles away. Thankfully they all were pretty good about staying in touch with each other. Hang in there, vdub!

[me2]

This all has a very familiar ring to it. I know that some other WG patients would say that crashing does not happen to them. When I was young and developed severe problems with WG and at last I had remission I was almost one hundred percent for a long time. I would have said "Crashing, what crashing?" So, it makes me thing that the docs also have a tough time , since some patients experience this and some don't .
It falls upon us yet again to learn to distinguish for ourselves, as best we can, what is going on.
And then throw up your hands and go with the flow and let whatever , do whatever, whenever, tomorrows another day, most things usually go away, blah blah blah.

I have learned to dance to the rythym of the crash. It doesn't bother me as much as it used to because I'm not fighting it (so much) anymore.

[Jack]

I have learned to dance to the rythym of the crash. It doesn't bother me as much as it used to because I'm not fighting it (so much) anymore.
The best way to be I think! :cool1:
There is no point in stressing out over stuff you can do little about. Just analyse the problem, decide if any action is required and then wait for another day.

[vdub]

At this point I am too new to the diesease to know when a crash is about to happen. I thought maybe last night was going to be bad, but as it turned out, I had one of the best nights I've had in maybe a month. Eventually, I'll probably learn the signals leading up to it and be able to handle things a little better.

[Sangye]

I can predict some of my crashes or detect symptoms beforehand. But many still happen with no warning whatsoever. Much of the time it's completely unpredictable. One day I can overdo it and not crash while another day I can overdo it exactly the same and crash.

But you are right--nothing to do about it when it does happen except go with the flow. I don't freak out as much anymore or think "It's going to be like this for the rest of my life." It is what it is.

[me2]

My experience of predicting and not predicting is exactly like yours Sangye. One thing I can do in this department is when I know I have a day when I MUST not crash I rest up the day before. This Friday I am taking a friend for a doctors appointment 100 miles away. Thursday I will rest and do easy things and try and take a nap if I can. So, I have some control on creating no crash days. BUT, it then becomes likely that the next day or so I will be tired. I plan for that too.
Sangye, aren't you close to trying to reduce prednisone? I made it through my Ritixan ok. The second dose was especially easy. I was only down for one day and then back to 'the new normal'. I don't feel any different yet. I am stable on 40 mg of prednisone - I'm just trying to enjoy that for what it is.
Aren't you on a lot less pred? I know you are very sensitive to it.
"I'll have a couple of Rituxan Miracles for me and my friends bartender"

[vdub]

It is what it is.
I suspect most of us will eventually come to that conclusion and learn to live with things. It kind of has to turn in that direction.

I'll have a couple of Rituxan Miracles for me and my friends bartender
Huh? We have metho martinis? rituxan and rum? celcept sunrise? :-)

[drz]

I just have to vent once in a while, then get over it. :wink1:

My docs are spread all over. Two are 100 miles from me and 100 miles from each other. One (SLC) is about 400 miles. Two docs are only about 2 miles from me (that's nice). That's the hazard of living in a small town. On the upside, we don't have traffic jams, crime, etc.

I think I would select one to be the primary and have the other doctors funnel info through that person. Some one needs to look at the over all picture. It would be too difficult and stressful for me to try balance them all out and figure every thing out if several people are giving you conflicting info.

[coffeelover]

Any stressors make me crash. I have learned to avoid as much stressful situations as possible. Hard to do with my job and the constant worry about my adult children.....but I am getting so much better at it. It helps to have a supportive spouse and family I can count on when needed.