Arthritis / Joint Pain

[gwenllian111]

Hi

Sorry I haven't been on the forums for a while. My fingers have been so inflammed I haven't been able to type, but I have been thinking of you all!

My question is, do some of you have 'good' and 'bad' days?

Some days I can cope a little better and the pain is better, but then other days (especially at night) I feel as if I have flu, and the pain is terrible.

I think the mycophenalate is starting to work now, and although the arthritis has not gone, at least I can walk unaided in the morning and drive again etc...

I had a stomach bug last week, and I couldn't stop vomiting - but thankfully, with IV fluid and anti sickness my stomach calmed downa again. But jeez, I hate stomach bugs!!!

I thought the thread about what you eat making a difference was really interesting....i'm not sure where to start though with that one. I do like my chips.

Sorry for the random thread, I just wondered basically how you cope with the good and bad days...does this even make any sense... !!!!

[me2]

Ok, you have humbled my achy fingers - I can still type. I have been pondering my aches and pains in recent years knowing that people without WG , in my age group, are complaining about the same things. So, as someone with WG, I am glad to have survived to have these complaints - whatever their ultimate source may be. But to adress your question.

You can bet your bippy I have good and bad days. Whether extremely ill or doing pretty good , there seems to be a roller coaster underneath this disease. It may be true of life in general , I don't know , but the illness has shown me a ride of great contrast.

Many moons ago when I first became ill I fell into company with a Naturopath who led me down the path and I was partly kept in thrall to the idea that treatment was working because no matter how sick I got there would be cycles of days where I felt 'better'. As a predispositioned optimist I took this to mean that I was getting better and blinded to the fact that I was instead spiraling out of control and getting steadily sicker instead of better.

I learned some good things from this. Two things I learned were that no matter how bad I felt and how sick I seemed to be getting the roller coaster would eventually hit a dip and go up. I would get a break.

Another thing I learned was not to take those breaks for granted. Make the most of them and don't be too shocked, disappointed or discouraged when another dip came up on this ride that is WG.

Another thing I learned was to keep my eye on the big picture. Ask my self what my general trend seemed like.

Sorry you had a bug recently. I think they hit me harder since having WG maybe they do you too. The good news is that I have fewer bugs. Knock on keyboard, its been a long time. I attribute this in part to being a little (and I do mean 'little') OCD about germs. I carry a pump bottle of alchohol hand sanitizer in my car and use it when coming out of stores etc. Plus I wash carefully when I get home from being out. I don't limit my exposure to people at the expense of enjoying life but I do avoid sick people if it is not necessary. But... you didn't ask me about any of that. ha

[Dirty Don]

WG/GPA IS a roller coaster, but, on the other hand, the price of the ticket was cheap to begin with. Yes, many ups and downs with WG, never quite know what to expect next. Mine has been mostly fatigue & some nerve damage. Lungs seem to be healing well according to docs. But, that is what this has taught me...with all the ups and downs, better to have them than not!!! Options aren't pretty. Hang in there, don't think we're going anywhere unless someone can come up with something that goes after the granulamatosis and cuts the disease in its beginnings. I am fighting off a cold, and so far, no bad reactions...just sniffles which are part of my WG experience anyway. So, though I'm not a clean freak, I have become more aware of others around me...not going into large crowds much anymore, and trying to keep hands clean as possible after ventures into reality!! LOL! Keep the roller coaster going, it's the way we measure our lives with WG now. Hang in there...

[Al]

I thought the thread about what you eat making a difference was really interesting....i'm not sure where to start though with that one. I do like my chips...Sorry for the random thread, I just wondered basically how you cope with the good and bad days...does this even make any sense... !!!!

Yes, we all have those ups and downs, and I think all of our meds, including your CellCept, don't help this. But I do think that the ride tends to smooth out some with good nutrition. Or maybe it's just that I find cooking therapeutic. But about those chips: You know, there are low- and no-salt versions, and baked versions that aren't so bad, or you can make them yourself out of better ingredients...

Al

[delorisdoe]

for joint pain I have a whole slew of reasons other than active wegs.

bra too tight
bra too loose
shoes too loose
new socks
rain
no rain when there should be rain
sun
alergies
husband anoying
worked too hard
rested too much
slept funny
did not sleep

Some days its awful some days its bareable some days its honky dorie.

[delorisdoe]

oh and I LOVE chips and there is no suitable repalacement for a chip lover. It is the real thing or nothing.

[Al]

for joint pain I have a whole slew of reasons other than active wegs.

bra too tight
bra too loose
shoes too loose
new socks
rain
no rain when there should be rain
sun
alergies
husband anoying
worked too hard
rested too much
slept funny
did not sleep

This made me laugh uproariously. The cat thought I had gone bonkers. Yes, on the way up, everything is ducky. On the way down, everything is annoying. But wisdom like your list, Leigh, can turn around the roller coaster in a jiffy....

Al

[delorisdoe]

I forgot todays reason...raked too many leaves

[drz]

Yep, I have good hours and not so good hours. I try to nap during the not so good ones and some times I force myself to go for a short walk since exercise and fresh air seems to help me feel better or at least prepare me for a good nap.

[Lightwarrior]

for joint pain I have a whole slew of reasons other than active wegs.

bra too tight
bra too loose
shoes too loose
new socks
rain
no rain when there should be rain
sun
alergies
husband anoying
worked too hard
rested too much
slept funny
did not sleep

Some days its awful some days its bareable some days its honky dorie.

ROTFL Leigh