Foot Pain

[PattyL]

Hi Nikki! That is great news!! Cheers to good health.

[annekat]

The cramps, numbness, and occasional pain in my feet never seem to go away completely. I did get some very sharp pains, I think it was in the arches, before dx, at unexpected times when just walking around. Haven't had those since initial treatment but get some less sharp, pin-prick-like pains at random times. The foot and leg cramps are the most troubling, and happen randomly, and usually when I'm lying down, like trying to go to sleep. Getting up and walking around seems to make them go away, a lot better than just lying there trying to fix them by changing positions. Since my disease activity is pretty well under control, according to my blood work and how I feel in general, I chalk this up mostly to nerve damage which hasn't healed and maybe never will. Plus I have weak arches to begin with, and in the last several years, pronounced bunions, a family trait, which also contribute to cramps.

Nikki, I'm glad you are feeling better, in general, than you were a few weeks ago.

[MaxD]

I too had random foot cramps, but a few weeks after weaning off Prednisone, they are gone for good. I was told they are a common side effect of steroids, and drinking a couple glasses of tonic water a day may help. I did have foot pain and pain in my achilles tendon prior to diagnosis, and it reappeared when I tapered prednisone down below 7.5mg. Now that I've been off Prednisone for 5 months, I do have stiffness in the tendons, especially in the morning and it takes several minutes of stretching and hobbling around before it feels normal. The stiffness recurs whenever I sit in one position for an hour or so, and moving around definitely helps. The docs say that's my new normal and not to worry about it. Ditto for the eustachian tube dysfunction - it's just earlier damage, not necessarily a sign of active disease. But it's most annoying - suddenly everything gets louder but all I hear is my own breathing, and I have to either snort hard or pinch my nostrils and suck inwards - but that makes the hearing very low. I've found lying down and relaxing usually fixes that, but that's hard to do outside the house. Oh, and the constant ringing in the ears which can change to a constant low tone without warning! Sorry, do I sound like I'm complaining? Actually, I don't mind the crickets ringing in my ear, on a cold wintry day it only reminds me of the summer! Plus, it gives me an excuse to not respond to anything I don't want to - and that's worth something too!

Nikki - some exercises may help with the feet. Taping the arch helped me a lot, as did good supportive insoles for the arches (mine are flat).

[kevconn66]

Hii Nikki I suffer a lot with feet pain, mostly in heels, so bad some days I cant walk.Have been in remission for 2 years after infusion of Rituximab, on very low pred now, Get frustrated when they tell me im in remission and they have the wegeners under control. though still suffer with most of same symptons before my treatment, Breathing, fatigue etc.They say they cant understand it in immunology, but my own doctor says it is caused by the chemo, and that it damages your nerve endings, lesser of the two evils.Is it just your feet you suffer with??

[MaxD]

kevconn66: I had pain in my heel too and swelling around one ankle, so the orthopedist treated me for tibial tendonitis - mainly physical therapy. I'm not sure that helped, but it didn't hurt and was worth trying. My rheumatologists were keen to get me off prednisone (after 9 months), and there were all kinds of aches and pains and fatigue for several months afterwards. About a month back I felt I had more energy and started a regular exercise program. That has helped tremendously, and other than stiffness and ear issues I feel better than I have in two years. That said, I certainly don't have the same energy and strength levels I had a few years ago.

I believe that getting off prednisone and suffering through the withdrawal for 3-4 months afterwards did the trick for me, and I'm thankful to my doctors for pressing me on that. We're all different and respond differently, but if it's at all possible, you may want to consider tapering off it completely. It takes a while for the body to start producing enough cortisol, so one has to be patient.

Good luck to you!

[Tr1957]

I have pain in both knees and feet and I have neuropathy in my right leg my neurologist keeps changing mess and increasing dosages my average day is an 8out of 10 on pain level this all started just before I was diagnosed with wegeners can't find any relief for the pain


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[Tr1957]

I just completed a Neuro electrical impulse test today with my neurologist at yale and the results were mild to severe neuropathy in both legs and carpal tunnel syndrome in both wrists plus inflammation of both knees. He told me that the results showed him all these things were related to my wegeners and that probably the only thing that would help me is to go back on pred. But since i'm scheduled to have another infusion of Rituximab he wants to discuss options with my Rheurmatologist and my Nephrologist first meanwhile my legs are friggen killing me to walk up and down stairs and since i work constuction ( commercial) that is what i do everyday. Then when i get home its ice packs and resting (fatigue) but my wife says im just using this as an excuse to lounge about - i really am looking for some relief of the leg pain so i can get a better quality of life. The pain level has increased from a 8 out of 10 to almost a 9-10 out of 10 plus i cant take any motrin


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[drz]

My guess is the only relief will come from meds to get the Wegs under control. Some have horrible side effects but the untreated or out of control Wegs is worse for one is in the long run in my opinion. Pain is just one of those symptoms and the damage to the body can often be permanent or fatal. Good luck in getting some relief quickly.