What does WG pain feel like?

[NicShaf]

I was diagnosed in the pretty early stages of WG, and I never had pain related to it before. As my medications have been reduced in the past couple weeks, and in the coming weeks, I have been paying very close attention to any changes in my body.

Yesterday, out of nowhere, I had these aches in my legs that lasted most of the day, and then proceeded to move to my arms. Toward the end of the day, before I went to bed, they got much better. And when I woke up this morning, I feel like myself again.

I had experienced something like this about a week after I started Cytoxan last January, in my left leg, and it also went away quickly, within a couple hours. After ruling out a clot, my doctors chalked it up to the higher than usual Bactrim dose being taken with the Cytoxan together, so I started taking them at different times, and only 1 Bactrim pill every other day, and the problem never returned. So, I thought, problem solved.

What I had yesterday felt the same, but more widespread. So I was wondering if it could be Wegs, or if Wegs pain would go away that quickly?
Another thought I had was that I had a load of sugar in the past two days. I received a Starbucks gift card, and thought I would treat myself to a sugary coffee drink...in hind sight that may have been a horrible idea. Could too much sugar while still in 3mg of Prednisone cause this sort of reaction?

Thanks for your thoughts:)

[Dirty Don]

Hi Nicole, I was dx in early stages too this summer. Am on pred and mtx. Sugar doesn't seem to affect these drugs, BELIEVE me!! LOL! I did experience the body pain off and on, but just prior to the flare that put me in the hospital. Not trying to scare, just be aware. And act on anything that even seems strange...docs should know this...if your docs don't allow/react to your needs, then you need another WG doc. Anyway, because WG varies so much from individual to individual, it's hard to get a lock on any feelings this disease brings up or promotes...part of the fun of WG!! LOL!

[Sangye]

Nicole, migratory pain that appears and disappears can be a sign of active Wegs. Keep an eye on it, and let your doctor know if it continues or gets worse.

The Wegs dog likes to toss symptoms around like tennis balls sometimes, but many times nothing comes of it. I guess he just gets tired and goes back to sleep! :rolleyes1:

[NicShaf]

You're right, Don. I just sent my Doc an email. He is very attentive, that isn't the problem. I think it is more that sometimes I'm almost afraid to admit to myself that something could be wrong, almost like if I ignore it , it will go away. I know that is stupid, but I'm sure we've all been there at one time or another. We'll see what he says, and see if it comes back. So far, so good.
Thanks for responding:)

[NicShaf]

Nicole, migratory pain that appears and disappears can be a sign of active Wegs. Keep an eye on it, and let your doctor know if it continues or gets worse.

The Wegs dog likes to toss symptoms around like tennis balls sometimes, but many times nothing comes of it. I guess he just gets tired and goes back to sleep! :rolleyes1:


Thanks Sangye, that is helpful to know.

[Dirty Don]

Nicole, you seem to be on the right track...WG is what it is, different for all of us...be patient, be persistent...it ain't going away and neither should we/you!! Knowledge helps a lot, friends help even more, taking care of your self is the greatest thing you can do for others...narcissistic, but very true if one wants to survive!!! LOL!

[delorisdoe]

My answer to this is really long so I will not go there but the short of it is...it comes out of nowhere, it hurts like hell, it moves to different areas with no rhyme or reason and can spontaneously go away without any explanation only to reapear after you convince yourself it was not wegs.

[Dirty Don]

LOL...and really good sense of humor about all this is very important!!! Well stated Leigh!!! lmao...

[HypnoticEyez]

What Leigh said. I've had 8 children, 2 by c-sect, 6 drug-free and I can tell you the joint pain from WG is far worse.

[Al]

What Leigh said. I've had 8 children, 2 by c-sect, 6 drug-free and I can tell you the joint pain from WG is far worse.

Wow. Getting them all raised up must have involved a few pains as well....

I doubt you can blame the sugar. Prednisone can push glucose levels up into the diabetic range, but your dosage is pretty low. Leg aches can come with edema, which is a sign of depressed kidneys, but you didn't say anything about swelling. There are a lot of unknowns with this disease, but you are right to let any anomaly drop just because you can't explain it.

Al

[NicShaf]

No, no swelling or anything.

HypnoticEyez, you make me feel better about having a baby in the future. Labor has always seemed scary to me, but if I can handle Wegs, and it's worse, I think I can handle labor:)

[HypnoticEyez]

Wow. Getting them all raised up must have involved a few pains as well....

Al, I think I was blessed to have had children that weren't much of a pain. My oldest is 37 and youngest 20. My last child died of SIDS 16 years a go at the age of 4 months 17 days.

[Al]

Al, I think I was blessed to have had children that weren't much of a pain. My oldest is 37 and youngest 20. My last child died of SIDS 16 years a go at the age of 4 months 17 days.

That's outstanding. Mine were pretty painless also, but then, there are only two (now 36 and 31). I am sorry to hear of your loss. I've known parents who have outlived one or more of their children, including my in-laws. But I cannot imagine it.

Al

[Psyborg]

No, no swelling or anything.


I can tell you the pain was very reminiscent of a broken bone in intensity. I actually found recovering from several surgeries to be considerably easier than dealing with the Wegs pain. At it's peak I couldn't walk down the stairs because my legs didn't want to support me. I didn't have any swelling until well past the pain starting, like 3-4 weeks into dealing with the pain.

THe only place I still get the pain on a regular basis is in my index finger on my right hand. I'd love to know why that is. Otherwise I appear to be solidly in or near remission. Weird.

[HypnoticEyez]

No, no swelling or anything.

HypnoticEyez, you make me feel better about having a baby in the future. Labor has always seemed scary to me, but if I can handle Wegs, and it's worse, I think I can handle labor:)

Nicole, at almost 58 I would gladly do it all over again, if I could. The pain of birth was a piece of cake compared to the joint pain from WG. Before being hospitalized for the 3 time I literally could not stand up, lift anything, dress or feed myself. I couldn't even type, which meant no internet. I had pain in me legs, shoulders, back, elbows, hands and eyes. It was the worst pain that I have ever experienced. At almost 58 I have experience a lot of pain in my lifetime.

[annekat]

I had joint pain that I thought was arthritis, on and off, for a couple of years before being diagnosed with WG. I tested negative for RA and am now sure it was the WG. It ranged from mild to debilitating, and I know it was painful, but I'm having trouble remembering how painful because the pred almost totally controls it for me. I'm surprised to hear of the level of pain that some people are suffering, because it sounds worse than what I've experienced. My condolences to those sufferers, and I realize I shouldn't assume that I won't be feeling that much pain someday.

Anne

[drz]

I remember the debilitating joint pain and no doctor could explain how it could move from one area to another while i slept or tried to sleep. After treatment I also had a lot of other cramps and muscle pains which I assume now were related to various deficiencies from malnourishment resulting from treatment, such as low sodium, calcium etc. At least the joint pains and other issues related to active Wegs went away after treatment and attaining a drug induced remission. Some of my pains before and after Wegs also related to my neuropathy which had been present before Wegs from diabetes but got much worse after diagnosis.

Pain is supposed to be a useful warning sing that something is seriously wrong, but it seems that with Wegs even this can get screwed up at times. Some times pain seems to happen for no useful reasons. Usually though these pains seem transitory.

The worst pain I have had since treatment started for Wegs was when both my ear drums ruptured from an infection that happened or caused my latest flare a few months ago. I can usually ignore most pain but that one drove me to ER at 2 am where I unfortunately got no help or relief until they ruptured a few hours later. My ear drums didn't believe the doctor who said that wouldn't happen.

[annekat]

The worst pain I have had since treatment started for Wegs was when both my ear drums ruptured from an infection that happened or caused my latest flare a few months ago. I can usually ignore most pain but that one drove me to ER at 2 am where I unfortunately got no help or relief until they ruptured a few hours later. My ear drums didn't believe the doctor who said that wouldn't happen.

I guess I'm just weird! I had a very bad ear infection in both ears.... the official start of my Wegs career, I think... and the ear drums ruptured, but I never felt much severe pain! A lot of discomfort, yes. Everyone is different, I guess.

[jola57]

Ahh the pain, how well we know this new BFF. Besides the ear pain, and pink eye, the joint pain was the most awful. I could not move my head, lift anything, dressing was a messy chore and so on. The various cramps, the dropped foot and these debilitating flash like nerve pains and now neuropathy of the feet (an no I never had and do not have Diabetes)seem never to go away. After recent consultation with my neurologist, if the neurons (nerves) have not regenerated in 2 years (it has been 4) than that is that and they never will. At least the awful pain is gone and while debilitating I can live with the flash pains as long as they dont bunch together.