Muscles Painful

[Doug]

Sometimes I feel an active case is easier to deal with than the state of remission. In an active case, virtually every symptom experienced is related to the WG. In a case in remission, determining if one is just an old fart, suffering old fart pains and aches, or a Weggie headed into a flare is more problematic. I try not to be obsessive about my health, with just enough obsessiveness and attentiveness to my state of health that I will see a doctor when genuine reasons for concern coalesce. What's that expression that covers how you feel when you have to enter into a high maintenance routine for the rest of your life after a lifetime of pretty much doing as you please, oblivious to every health issue but outright death!?? Oh, to feel like crap.

[Terri]

Being new to being a weggie and doing so well for over a year, I'm starting to understand what Jack means about not trying to figure everything out.
This disease certainly has a mind of it's own. I know that for sure because lately I haven't had much control over my own mind.
I started the day off thinking I would get something done today and was so achy I could barely walk across the room and my lower back hurting. I think the rainy weather has something to do with it. I feel better when the sun is shining and warmer.
I have a question.....Does anyone take Actonel without any problems?
I know it is different for each person and I wouldn't know until I tried it but, all the reviews I read about it, most of the side effects were pain in bones, joints or muscles. I certainly don't want to take a chance on that. I already have enough problems in that respect. I took Fosamax for awhile and had problems with it.Mostly with my throat and stomach but that was before I was taking anything for my stomach. Is there no end????
Any suggestions for something herbal or is it safe to go without if you add more calcium to your diet?
I need you Sangye

[Derek]

Hi Guys

Thanks for the support. Pain update. My knee is not as painful but the pain has moved to my elbows and hands. Oh what fun we have.

Keep well

Derek

[Derek]

Hi everone
Has anyone any advice. I have had a flare and this time it has really gone to town on my muscles, mostly the shoulders arms and right knee are in constant pain and the hands and feet get short intense pain that only stays about 10 minutes. I can only take paracetomol due to other meds I am on which reacts to any opiates.
I was diagnosed in 1989 and had lots of other symptoms that relate to WG but never muscle pain like this.
My Bilirubin & urobilinogen level is up on a Blood & urine test. This has never happen before either.
I am having an ultrasound scan on my liver & gall bladder tomorrow.
Thanks
Derek

[jola57]

Question, do you have regular bilirubin test, they have not done any on me just your average liver ALT test.
The last time I flared it was in my hand and leg joints and muscles that I felt the horendous pain. Upping the pred helped immediately.

[Derek]

Hi Jolanta

I have the liver function test including Bilirubin every 4 - 6 weeks. The ultrasound scan I had yesterday showed that there were fatty deposits round the liver and that there were lots of small gallstones in the Gall bladder. Have not seen the Doctor yet to hear what he suggests if anything. His first thought prior to the scan was that I might have Gallstone and that one of them could be blocking a bile duct, although I have had no pain from the Gall bladder region. He also said that if a duct is blocked then you could get bad muscle pain due to bad distribution of Bilirubin.

Derek

[jola57]

Thanx Derek, I will mention that to my doc next time I will see him.

[Derek]

Hi everyone.
Quick update.
I am seeing my Doctor next week when he has the latest blood test results (taken this morning) and Ultra sound results which showed fatty deposits on the liver and lots of little Gallstones in the Gallbladder. The pain is getting worse and although I have been walking and doing a little bit of swimming which proves to be painful, to keep mobile. I have been diagnosed with WG since 1989 and have never experienced pain like this that lasts so long. This is going to sound crazy but a description of the pain is intense deep pain in the large muscles, especially the arms and joint pains that move round the body the shoulder is the worse. On the arm and leg bones it feels like they are being twisted round. Don't send the men in white coats I know it sounds crazy but it is the best way I can describe it.
Thanks
Derek

[Sangye]

Don't send the men in white coats I know it sounds crazy but it is the best way I can describe it.

D'oh! Too late--they're on their way....

No really, I don't think any of us would think anything sounds weird anymore. We've all had to tell our docs the craziest sounding descriptions.

When I was in the hospital last week, I described the weird lung sound I'd told you guys about before I went missing. (When I exhale laying down, there's more air that comes out after I stop exhaling, and it sounds like someone has sat on a leather cushion--pshhhh. Quite loud)

I told it to an entire Pulmy team, none of whom had the least sense of humor (which makes you feel crazy all by itself). They all stared and blinked and said they'd never heard of anything like that. One nervously shifted on her feet. I think their patients are just too embarrassed to mention a lot of things. Not me, I spill it all. They already think I'm crazy because I find humor in the most horrible things.

[Doug]

D'oh! Too late--they're on their way....

No really, I don't think any of us would think anything sounds weird anymore. We've all had to tell our docs the craziest sounding descriptions.

When I was in the hospital last week, I described the weird lung sound I'd told you guys about before I went missing. (When I exhale laying down, there's more air that comes out after I stop exhaling, and it sounds like someone has sat on a leather cushion--pshhhh. Quite loud)

I told it to an entire Pulmy team, none of whom had the least sense of humor (which makes you feel crazy all by itself). They all stared and blinked and said they'd never heard of anything like that. One nervously shifted on her feet. I think their patients are just too embarrassed to mention a lot of things. Not me, I spill it all. They already think I'm crazy because I find humor in the most horrible things.

Beyond doubt, this is why you were missed! (...or, in my case, it helps to have another member on line who's at least as, erm, exhuberant as I!)