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Derek
06-24-2009, 10:03 PM
Sorry to whinge again but has anybody had bad muscle pains. I have been getting them and they have been increasingly getting worse, in the shoulders (Worse on the right side), arms Legs and Knees. My Methotrexate was increased 4 weeks ago due to raised anca, PR3 and ESR. I wonder if this is a sign of another flair.

Any comments would be appreciated.

Thanks

Derek :mad:

Terri
06-25-2009, 12:22 PM
My Dr's switched me to Methorexate after being on Imuran about 3 weeks ago while tapering down on Prednisone. I noticed muscle fatigue and soreness,
especially in my legs and lower back. Sometimes I go to the basement and not sure if I'm going to make it back up the steps. It turns out to be a struggle.
I go back for appt. in a few days, will ask questions then.

By the way, where are you Sangye?
Haven't seen you post much lately. Are you ok?
I always look forward to what you have to say.

JohnL
06-26-2009, 01:06 AM
My Doc put me on 400 mg of magnesium /spelling??/ a day for my pains. But I had them before I was diagnosed. You might check it out - its really just a diet supliment

jola57
06-26-2009, 04:59 PM
Yeah, i am worried about Sangye also. I hope that she is just away.

Derek
06-26-2009, 10:56 PM
Thanks John I will ask the doc

Derek

Derek
06-30-2009, 08:25 PM
:eek:The Muscle and joint pain has got much worse. My worse areas are my right shoulder and left knee. Knee is so bad I can hardly walk. Also feeling run down and unwell. Other than that everything ok. I am waiting for my doctor to ring me back. I can only take paracetamol due to other meds I am on and the paracetamol are not helping the pain

Anyway enough whinging from me hope, you are all ok for today and thanks for listening.

Derek

Terri
07-01-2009, 11:17 AM
Sounds like you are having a hard time of it.
It was good that you let your Doc know what is going on.
My Dr. told me today that the Metetrexate can effect you from the waist down especially the lower back and hips causing muscle weakness.
Now I understand why I sometimes feel like I can't make it back up the steps.
Hope they get you fixed up soon.
Take care.

Jack
07-01-2009, 03:25 PM
Sorry I can't be more helpful and can only offer sympathy, but this is the sort of random symptom I've been plagued with throughout my time with Wegener's. I've spent a huge amount of time and effort chasing round various clinics trying to get to the cause of the "pain of the day" only for it to go of its own accord. Usually leaving a legacy of its presence.:(

Hope you are able to find the cause, otherwise, Get Well Soon. :)

Derek
07-01-2009, 08:37 PM
Thanks Jack & Terri for your support.

Hope you are ok today

Derek

Geoff
07-01-2009, 10:02 PM
Hi Derek, Hope you are managing to cope with the pain at present. Is it a 'typical' syptom for you with regards to a flare up, or is it something new? The absolute major syptom for me was joint pain in my hands and feet and then a 'wire lasso' round my left bicep. Upping my prednisolone dosage is the only answer for me. If all else fails, then refer to item 2 on your avatar. Hope you manage to turn things around quickly. Keep us informed as to developments. We all travel this road together.

Doug
07-02-2009, 07:54 AM
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.:mad::rolleyes:

Terri
07-02-2009, 09:56 AM
:(
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:D

Derek
07-02-2009, 07:25 PM
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
07-07-2009, 06:50 PM
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
07-09-2009, 09:43 AM
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
07-09-2009, 05:33 PM
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:cool:

jola57
07-10-2009, 08:41 AM
Thanx Derek, I will mention that to my doc next time I will see him.

Derek
07-14-2009, 06:40 PM
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:mad:

Sangye
07-14-2009, 11:31 PM
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
07-15-2009, 12:28 AM
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!) ;)

Derek
07-15-2009, 09:22 PM
Thanks Sangye glad you are back I have missed your sense of humour.

What was the outcome of the whistling lung complaint and how has it effected you.

I saw on the internet that you can get pain in your teeth if you have a flare. Funnily enough I also have had a pain which came with my other pains but I never associated that it might be linked as the tooth that hurt was supposed to have a root canal done on it, but I have been putting it off basically because I am a dental coward and assumed that what the pain was. Have you ever heard of teeth pains and WG.

One last thing the last time I went to the dentist the doctor said, I had to have a 5 day antibiotic screen and have the work done on the 3rd day. Has anyone heard of this is it still relevent.

It is good to have a place to ask these questions as it saves you the embarrassment of the doctors looking at you as if you are an alien. Perhaps we are but do not know it yet.

Derek :cool::);)

Sangye
07-16-2009, 12:18 AM
The whistling lung thing seems to have eased up as my lungs have cleared up. (They were pretty crackly with old blood and inflammation) I barely hear it now.

I definitely have had tooth pain with Wegs, way back before I got dx'ed and had crippling joint pain for months. Every so often--always at night-- it would suddenly feel like one of my teeth was going to explode. Not just ache, but actually like it was exploding. (I had similar pain in my joints) The gums always looked healthy, and it would come and go in different teeth, so I knew it wasn't a dental problem. It'd disappear by the morning. Thankfully, it only happened a handful of times.

I think the jury is still out on the need for antibiotics/dentist thing. I guess it would depend on how you are otherwise--is Wegs active, are you catching every bug out there, how well do you tolerate antibiotics, etc.... Bottom line : I dunno. How's that for helpful?? :D

Jack
07-16-2009, 12:29 AM
I used to have tooth pain associated with my sinus trouble flaring up. The nerves run in the same area. I always found this a bit odd because my sinus linings were removed along with the nerves to my top teeth before they diagnosed that Wegener's was the true cause. I still have tooth pain occasionaly, but I think it is due to their general, fairly poor condition.
I visit the dentist on a regular basis and have asked several about special precautions, but none seem to think this is necessary. That could of course be down to their ignorance of the disease! ;)

Sangye
07-16-2009, 12:43 AM
They removed your sinus linings???!!!! :eek:

Jack
07-16-2009, 01:36 AM
Yes. After a number of wash outs, it was decided that the only way to fight the "infection" was to remove them. The operation is called a bi-lateral Caldwell Luk and is seldome performed these days. I won't go into details, but when other patients had visitors, they used to talk about me behind their hands. I looked quite a mess!

And of course, it was all for nothing anyway. :mad:

Sangye
07-16-2009, 01:47 AM
Sheesh, Jack. The more I learn about what you've gone through all these years, the more I'm amazed that you're still alive. Thankfully, none of those procedures removed your sense of humor.

Doug
07-16-2009, 03:22 AM
Me, too, Jack. I felt nausea when I read about the sinus lining business. I still feel a bit woozie, for you. Gad, Sir, have the doctors left you any parts!? :eek:

Jack
07-16-2009, 03:55 AM
The best bit of me is my kidney and that used to belong to someone else!

(Thank you, whoever you were. :) )


As I've posted before, take each day as it comes and think of what you have rather than what you've lost. While in hospital, I've seen a couple of people give up and they just died! :eek: The scary thing is that although I don't feel like doing this myself, I can now understand how they got there.

Doug
07-16-2009, 04:33 AM
"The scary thing is that although I don't feel like doing this myself, I can now understand how they got there."

Me, too, Jack. When I've expressed this sentiment to non-Weggies (or people who've never experienced any illness serious enough to threaten life.), the response was alarm. Fact is, when you kiss death on the mouth, you know how it feels, but are happy to have survived it alive. It isn't morbid to feel that way, I think, just recognition of empathy for others who had an alternative ending to circumstances you survived. Whew! And God (or whoever!) bless the people who donate organs for others to live.

Sangye
07-16-2009, 04:40 AM
I agree-- I think our will to live is much more fragile than we like to think. It terrifies others when we mention that, because it's their own fear of "I might feel the same" staring them right in the face.

Derek
07-16-2009, 08:05 PM
Thanks for all your comments they have helped me. Sinus lining removal sounds very grim, well done Jack for still having a sense of humour about it. As you say giving up is not an option.

Derek :o

Doug
07-17-2009, 02:02 AM
Derek- That's what this group is about. Glad you feel it's of help, and glad, again, you chose to join us. You have a strong positive attitude that can inspire others who feel doubts about the future! :)

Derek
07-28-2009, 04:32 AM
Quick update. Not been on for a while felt a bit rough. Worse my right shoulder and arm muscle are so painfull I can not sleep. Pain killers make know difference.
Anyway hi again and I hope all is well with you all
Derek:mad:

Doug
07-28-2009, 04:55 AM
Sorry you are having muscle issues. A strain injury? Or is it something else?

Sangye
07-28-2009, 10:45 PM
Hi Derek,
I'm sorry your arm is so sore. It's always worse when it affects sleeping. What do your docs say about it?

coffeelover
07-30-2009, 04:37 AM
I have had arm pain in the past and it was related to carpal tunnel?

I wear a brace around my wrist to bed at night and that seems to help. My pain is worse after holding a steering wheel.

Just some thoughts
Lisa

Doug
07-30-2009, 12:32 PM
Do any of your medications have side effects that match your pain? It's a very wild shot on my part to suggest this and I don't know if those that can affect muscles affect them overall or just in limited locations. I have similar problems driving, only in my hands. (Lisa's comment above)

Jenny
07-31-2009, 06:32 PM
I get bad muscle pain, too. Since I got WG, my shoulders get real sore sometimes especially when I wake up. I take flexeril for muscle pain it is a muscle relaxer. I take it at night because it can make you drowsy. I hope you start to feel better

Derek
08-03-2009, 02:13 AM
Thanks everone for your support. It now seems to be like a frozen shoulder that is agony to lift my right are up. What a wreck.

Hope you are all well
Derek :(

Doug
08-03-2009, 03:50 AM
Derek- I've created this video especially for you. You need a laugh!


http://www.youtube.com/watch?v=sdvQLAXQ77k

Jack
08-03-2009, 06:38 AM
Remind me not to play poker with you Doug. :cool:

Doug
08-03-2009, 09:12 AM
Was it my "evil eye"? My dead delivery? You're lucky I haven't the patience for card games. :p:cool:

Carol
08-04-2009, 08:45 PM
Hi Derek, I had muscle contractions - not really a cramp so decided to take magnesium. I'm sure it helped. Then the Doc told me I had to take Calcium every day so I chose one with magnesium in it. Regards Carol

GeorgiaInOhio
08-06-2009, 07:24 PM
ive also been getting muscle cramps and spasims, one of the reasons im up on here at 5:21am right now. i forgot to take my calcium supplement yesterday and im assuming thats why. calcium helps, but i do believe its the magnesium thats taken with it that also helps, like carol was saying and some others. seems like the magnesium absorbs the calcium better from what ive read, so possibly the combo of the 2 does alot of good? I also used to get alot of cramps waaaay before i was ever diagnosed with WG and I noticed potassium (eating at least 1 banana a day was good for me) got rid of those bad boys. I just started adding those in today again to see how that improves with the WG. not that i never eat a banana, but seemed like when i consistantly ate one a day, it kept my leg cramps away. Docs told me back then it was the potassium. so we'll see if it helps. cant hurt i guess. its a banana. lol

Jack
08-06-2009, 07:39 PM
cant hurt i guess. its a banana. lol
Unless you have severe Renal involvement, then it can kill you! :eek:

jola57
08-09-2009, 01:30 AM
Talking about cramp. I was yawning yesterday and all of a suddden got a horrendeous cramp on the left side of my throat. It was a cramp from hell. I was driving at the time an had to pull over. Fortunately it did not involve my trachea. Don't know and don't want to know how that would be. Would I die from lack of oxygen or would my body relax once I was unconcious?

Sangye
08-09-2009, 01:38 AM
Good grief! Just when you think you've heard it all (or lived it all!) as a Weggie! I'd suggest getting a chiro evaluation and adjustment. It could be as simple as a cervical vertebra misalignment sending aberrant info to the neck muscle. A chiro can also evaluate if it's something that would require further study.

jola57
08-09-2009, 01:40 AM
Thanks Sangye, hadn't thought of that and will try.

crackers
08-09-2009, 04:08 AM
i've had the throat cramps too jola.also under the chin as well.very painful while they last.i've started yawning with my mouth shut.not easy.
john.

coffeelover
08-10-2009, 12:04 AM
Jola,

Glad it wasn't your trachea. Been there done that!
Lisa