Does anyone have sciatica like pain? In other words pain radiating down both legs from your bottom! I've just started with a pain like this (yesterday) and I'm wondering if it's normal with Vasculitis, is it permanent, if so, can it be controlled?
Any help would be appreciated. Thanks.
Hi BB
How strange you should mention sciatic type pain, and yours came on yesterday - ditto. Mine is radiating from my right hip and down my right leg. It isn't there all the time but occasionally doesn't half take me unawares.
When I was in my 30's is suffered from sciatica and it lasted months. Sometimes the pain was unbearable. Fortunately I have never had it again and I'm hoping that the pain I'm experiencing is just one of those things, possibly cause by the damp, and will go away in a few days.
A number of the vasculitides affect the joints so maybe what you are experiencing is part of your vasculitis. Guess what? I don't really know what's causing your pain (or mine) but if it doesn't improve in a couple of days then I'd see your doctor. Better safe than sorry.
PatriciaAnn
Hi PatriciaAnn,
Thanks for your reply.
The ache/pain seems ever present now and was so severe last night, it woke me from sleep. I'm uncomfortable lying, sitting or even walking and I'm scared this is going to now be a permanent feature of my life.
One more thing I could really do without. 
I will see my Dr but from past experience, don't have high hopes of a solution.
(Usually I'm a very positive person but this may be my undoing).
I had very similar in late stages of pregnancy, possibly due to nerve being pressed?? I know that doesn't help you, but I just wanted to sympathize with you and wish you well. I hope you get better soon 
Hi BB
Like Pat I also suffered from this in my thirties but then again at intervals though out my life.
So mine is not connected to my Vasculitis. Mine is made worse by sitting too long, guilty of bad posture I am afraid.
If is it very bad I think you should get checked out first but if they can't do anything that advice I was given was an Ice pack for ten minutes and a warm bag for ten minutes once every hour. The Ice pack is to reduce the inflammation and the warm bag is to sooth the pain away. Then after a few days when the pain is nearly gone I have some exercises from the physio that I do each morning and each night. It usually takes a week to improve. I was told to only go as far as I could and build up and not over do it. I do have to do the floor ones on the bed though. I always works for me.
But as I said you should seek medical advice first to make sure it is just muscular. Mine was diagnosed as a problem with the sacroiliac joint. But it may not be that in your case.
Lynne
Lynne's suggestion for relief does work well - I know from personal experience in the last couple of years in particular.
One possibility is something called myofascial pain syndrome which causes areas of inflammatory substances to form and this leads to a trigger point which becomes very painful as the muscles go into spasm. The common trigger points are in the shoulders, alongside the spine above waist level and over the sacroiliac joints in the pelvis - sort of where some people have dimples on their bottom 
These last two points can lead to pinching of the sciatic nerve and referred pain into the thighs, knee and even to the ankle and foot. These trigger points can be dealt with by a physio who can mobilise the small area that forms the trigger point using manual techniques to disperse the inflammatory substances (they are called cytokines). A good trained massage therapist can do it too. Injections into the area can be used if it is very stubborn. I found that a good osteopath and Bowen therapy also both did the job, especially in combination.
I get this the whole time. My diagnosis of unspecified vasculitis was taken off me as a second patholagist examined the biopsy from my facial rash and deemed it normal (don't start me...). The pain with me first appeared when I was about 6 weeks pregnant. It's like somebody is sticking a long long ice pick just above my right hip at the back which caused a cramp like feeling (feels like a contraction cramp) that starts in my bum cheek and shoots down the back of my leg at intervals. It can also then cause a pain in my knee or ankle to settle along with the shooting pain. My back then goes and I end up bent over as well.
I was told it was just one of those pregnancy things but it got worse and worse. I could barely walk with it and it continued on past my pregnancy.
I found a fantastic massage therapist who really helped me. He does a really deep tissue massage which hurts like hell but has never failed to releive the pain for me in one session. Unfortunately I've now been diagnosed with fibromyalgia so I can't have any more deep tissue massages - don't know what I'll do if it comes back.
The other thing that I find helps is to have a long hot bath with a generous amount of epsom salts. Then put on one of the anti inflamatory gels (volterol, difene etc) and get into bed for as long as possible. If you have any difene tablets I'd take them too, they really seem to help.
Trying this to see how I respond. Thank u for suggestion.
Thanks everyone, for your suggestions and concern. I'm typing this contorted on my sofa, perched on one side! The pain has been with me all day. No let up. Sigh.
Anyway, I'm hoping a decent nights sleep (fingers crossed) will help.
Thanks once again, very much appreciated.
It is the most dreadful pain, isn't it? And not a good time to get it - I hope you are not in danger of losing your power or getting flooded or anything.
I got it last summer, not for the first time, but for the for the first time since I was diagnosed and put on steroids. I went into my usual routine; rang the GP to check on pain killers, rang Physio, and found hot water bottle etc. It did sort itself, but much more slowly than before and I felt as though I was hobbling about for ages.
But Stella at the Addenbrookes clinic said 'of course it is taking a long time....the steroids have weakened your muscles, and they won't recover quickly'. Yet another gift from the steroids! But it did go and hasn't reappeared, though I'm probably a bit more careful when lifting etc. Oh, and I do do posture exercises.
So, do hope you feel more comfortable soon. It's not much fun!
So sorry to hear of your discomfort, I have the same since diagnosed with Takayasu, it is with me most days, some more than others. I find heat and then try to gently stretch and then keep moving seems to make it more bearable.
In some ways I was pleased to read your post it makes me somehow feel normal..Oh dear we are sorry souls Ha! Ha!
Hope you get some relief soon.
yes me had xray and have been told wear and tear and arturitus sometimes in hip going to the hospital tomorrow am going to mention it will get back to you berkshirebird
Hi BB
SO sorry to hear about your sciatica. It is indeed HALTING pain.
I have had MPA for 4 years. During the very hi doses of prednisone, my back and hips felt really great! The good news is that I ve tapered down to 6mg and MPA has remained stable. However, the bad news is that all of my joins hurt a little, but my back is extremely painful. I have a terrible lower back w/ 3 discs w/ structural problems. 2 top neurosurgeons have told me the only solution is to fuse the 3 vertebrae. One said he wouldn't do the surgery b/c of my history of steroids. The other was willing.
So I have been trying all various ways to avoid surgery---- yoga, heat, off my feet (all good) accupuncture (not good for me) etc. Gradually , it has reduced the sciatica, although my back is still very tender .
Maybe if you can try all of the suggestions--- massage, hot bath, pain killers, stay off your feet, etc…. you can ease your back pain enough to get through this episode.
Everyone--- EVERYONE--- agrees that you should do whatever you can to keep your muscles strong in order to support the joints(especially abdomen muscles for the back). I have found gentle yoga to be very helpful.
Has anyone with MPA or WG ever had their vertebrae fused?
I am so afraid of slow or no healing and of infection.
Anyway, good luck, BB. You have my sympathy!
Cheryl
Thanks everyone for all of your sympathy and suggestions. The pain seems to have subsided now but I'm still having twinges so it's probably lurking in the background ready to emerge when I least expect it.
I've just pulled a muscle in my neck this morning too.... You've got to laugh...! 
Phew! Continuous pain certainly occupies the mind!
I hope all of your issues subside and you get the help you need.
Healthy wishes!
Muscle pain
Leg pain
GPA shoulder pain. 
Muscle pain
Ear/head pain
