unexplained pains?

[MCC]

Hi,
for the past few weeks I have been waking with pains which seemingly have no cause. First my knees, then my neck, then a finger, then the side of my hand! and today its my shoulder. All but the shoulder i have no idea why (that strangely, I think was caused by me simply scratching my back last night, but it really shouldnt be as bad as it is - sharply painful). The pain goes within a day or two.

I wondered if anyone else gets this? It worries me a little because pain in my knees was a first symptom. But all my last blood tests came back ok.

[mishb]

Knees, neck, fingers, hand, shoulder - you forgot ankle.
These were basically (apart from the sinusitis) my first symptoms.

I think you could possibly be on your way to a flare.

Have you had your vitamin D levels checked and also B and iron? All these things can also cause joint pains.
Have you had your RF (Rheumatoid Factor) checked for arthritis?

[Pete]

I agree with Michelle. I had similar symptoms last summer, but my labs didn't show any changes for a month. Then, I started with a bit of blood in my urine and an elevation in my creatinine; all symptoms that my rheumy used to dx the beginning of a flare. I had two rtx infusions in October '13, and my labs have returned to normal. I also went back on pred at 60 mg/day (now tapered down to 5).

[Alysia]

I am sorry to say, like the others, that this might be a flare :sad:
what meds are you taking ?

[MCC]

I am not taking anything...I have been off medication for 2.5 years. Thanks for your replies, I will wait a few days and then talk to my doctor. I've never had a flare...I feel like having wegeners makes me a bit paranoid as every time I feel remotely ill I think it's associated.

[Michael Bell]

Hi MCC, paranoia has nothing to do with it, get to the docs asap as it does sound like you are having a flare.
Mike

[me2]

I have to chime in and agree that this sounds like what happens to me in the beggining of a flare. Roving pains that go away in a couple of days. Injuries don't go away in a couple of days- WG joint pains do.

[MCC]

thanks. I definitely do get paranoid though- every time I feel ill, I think it is wegeners related.

[greenjeep]

thanks. I definitely do get paranoid though- every time I feel ill, I think it is wegeners related.

I'm dealing with paranoia right now. I think, all things considered, that paranoia and uncertainty are the two things I struggle with most.
But the symptoms you describe, in my mind, are almost certainly related to WG. This is how my journey began, and thank God I randomly brought it up with my general practitioner. It made a light go off in his head. And I could have sworn that ankle or hip pain had nothing to do with the sinus infection I had been fighting for 6 months.


Sent from my iPhone while driving on the freeway.

[MCC]

So I have got a positive ANCA but allowed to stay off meds for now.

[mishb]

I hope they gave you a blood test form so that at the first sign of things going off the rails you get tested again.

You have had this for a while now, even before remission, so you know that it can get away from you very quickly.

For now, take it easy, take whatever OTC pain medications or herbal combinations work for you and .........

[Michael Bell]

I'm on codeine phosphate and paracetamol which seem to work at keeping the worst of the pain away.
Mike

[drz]

Have you reported these symptoms to your medical team treating your Wegs and following you. Being vigilant and responsible in keeping your team up to date on any symptoms is not paranoia or hypochondriasis. It is just good judgement and being a responsible patient and member of your treatment team. Roving joint pains and/or bloody nasal or sinus problems are the most typical sign of beginning Weg attack as most of us know from first hand experience.

What are your inflammation markers? Any sign of infections? I have had increases in residual symptoms like joint pain and increases in inflammation markers when suffering from an infection. Sometimes I strain a joint and it hurts for a few days. Taking pred for long term does make joints vulnerable due to weakening of tendons and muscles. My ANCA follows my Weg symptoms, does yours?

Your Weg expert can help you assess what is going on and if anything needs to be done differently. Best wishes for better and continued good health.

[MCC]

Thanks drz. I have been in touch with my doctor and I have an elevated ANCA, but she is happy for me to remain off medication now.

[renidrag]

Anca has proven not to be the proper marker for Wegs. You can have elevated Anca and no Anca and still have Wegs and/or be flaring. I think SED rate CRP and Creatninine most important.
Dale

[Eamick]

I have had weg for 8 years now and have ongoing pain but not in the same place. Went to my rheumatologist and he said I must have bumped my knee. Well, now I know this is just all part of it. Pains come and go with no explanation. Good thing is I know it will stop as fast it stared. Crazy! Try and explain this to anyone else and they just look at you. Yep, it's normal as far as I can figure. Fatigue seems to come and go as well. Not sure but need to try something with diet and see if that helps. Going to eliminate sugar all together.


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[MCC]

I have had weg for 8 years now and have ongoing pain but not in the same place. Went to my rheumatologist and he said I must have bumped my knee. Well, now I know this is just all part of it. Pains come and go with no explanation. Good thing is I know it will stop as fast it stared. Crazy! Try and explain this to anyone else and they just look at you. Yep, it's normal as far as I can figure. Fatigue seems to come and go as well. Not sure but need to try something with diet and see if that helps. Going to eliminate sugar all together.


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have you tried taking anti inflammation foods, and reducing flammation causing foods? It is early days yet to see if it will work ongoing, but I have found it has had a huge positive effect on how i've been feeling in just 3 days. The pain has virtually gone. (it had developed from what i described in my first post to a constant pain in my knees especially.) Anti-Inflammatory Foods (http://www.wegenersgranulomatosis.net/Anti-Inflammatory_Foods.html)

I also posted this on another thread: Vasculitis - Dr. Weil's Condition Care Guide (http://www.drweil.com/drw/u/ART03402/Vasculitis.html)

[MCC]

Anca has proven not to be the proper marker for Wegs. You can have elevated Anca and no Anca and still have Wegs and/or be flaring. I think SED rate CRP and Creatninine most important.
Dale

Yes my doctor mentioned that too, but I didn't like to write a long detailed reply. My doctor is on to it and I trust her. thanks

[Alysia]

I have had weg for 8 years now and have ongoing pain but not in the same place. Went to my rheumatologist and he said I must have bumped my knee. Well, now I know this is just all part of it. Pains come and go with no explanation. Good thing is I know it will stop as fast it stared. Crazy! Try and explain this to anyone else and they just look at you. Yep, it's normal as far as I can figure. Fatigue seems to come and go as well. Not sure but need to try something with diet and see if that helps. Going to eliminate sugar all together.


hey there and welcome :) you can open a new thread on the "new members introduction" and introduce yourself, if and when you feel like.... 8 years of wg is impressing and I bet you can teach us some things.

[Eamick]

I don't really know where to do that.


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[Alysia]

:hug2:
I don't really know where to do that.


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you should look at the forum under: "the loby". then under "new members introduction". then "start a new post". I think that with the Tapatalk it is more complicated. if you can do it using comp, it will be more clear to you where to write. meantime, welcome :biggrin1: