does any one know why im still in pain in my... - Vasculitis UK
does any one know why im still in pain in my joints even tho they think my wg is in remission and i still feel the same as i always have
Good question Tracey. It could be that you are not really in remission. There are 2 types - drug induced remission, where all the signs & symptoms have gone away but you are still taking the meds to keep it that way, and full remission where you are swimming without armbands & you don't need the meds. So you & the doc may think you are in remission, but your body might know differently.
BUT if damage was done by the disease to various parts of the body, such as nerves, joints & muscles (not to mention lungs & kidneys) it may not be repairable, so you still get the aches & pains.
I said it was a good question because after 10 years of medication for WG I still creak when I move and have the energy of a sloth bear! Lots of people with vasculitis find cold winter weather saps energy. Dr Andrew Maclean is currently doing a very thorough research study on this at Birmingham. Susan & I are taking part. She will be the healthy, normal "control" and I will be the ANCA vasculitis patient!
Not sure if this helps. See what others have to say!
Hi I too suffered this when I went into remission, could not understan why then I asked my consultant as I could hardly walk. Dr Lewington told me that my body had stopped making natual steroids and as I has come off the Prednisalone albeit slowly my body was needing some anti inflamatory medication. We cant take these meds only in steroid form so when I had to go on them again all aches and pains stopped. It is a shame that this is the only way I can keep the pain at bay, but needs must as the devil drives.
Patsy
thank you for your answers it did take 8 yrs to get a diagnosis so like you say damage may already be done dr flossman did say this.im still on 5mg of pred and mycopenelate.pain killers dont seem to work.
i was in remission for 10 years, 5 f which were spent without meds at all. however, due to the prolonged use of prednisolone i had during my chemo, i have experience degradation of my vertabrae, leading to my bottom two being fused and the one above starting to disintergrate.
this obvioulsy is permanant and therefore i live on a mixture of painkillers including tramadol and dichlofenac. and on some days even those dont work.
i have come out of remission and starting more chemo, so i have more to look forwards to, but at least i know what to look for now.
i think john is right when he says two types of remission. there is th etype the doctors say that the disease activity is low and therefore you are fine, and then there is th elevel when you are off meds completely and feel a bit better than when you started!
Hi Tracey,
I have had WG for 5 years with one relapse. Throughout the whole period I have had aches and pains in my hands wrists,knees shouldres etc. The pains come and go but are worse when I do any physical activity such as gardening,DIY and golf. For me joint pains arepart of my illness symptoms, which will,I suspect,always be with me.
I find that the solutions are a combination of the following
# I take Co codomol (prescription strength) 30/500 tablets when the pain is at nuisance level. It normally helps but sometimes does not.I cant take anti inlammatories as my kidneys are shot to pieces
# I have to have a day or two without physical activity after which the pain eases. This is a great excuse when my wife wants me to do some gardening!!!
# If all else fails, have a glass of wine which at least makes life more bearable
Whatever you do dont give into the pain and stop living.Get the best out of life even though we have this illness.
All the very best
Paul
thankyou paul
