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Carol
08-12-2008, 10:27 AM
Hi everyone
My tingling/numb/burning feet (Mononeuritis multiplex)have continued to be a big problem - probably the only problem except for tiredness two months after being diagnosed. The rheumatologist has decided after neuropathic testing(electric shocks through the nerves) that I need aggressive therapy. So I am to have IV cyclophosphamide treatment every 6 weeks to try to improve my feet. A bit scarey. Has anyone else had this nerve problem? I'd love to hear from you anywhere in the world. My other medication is Prednisolone and Imuran.

08-14-2008, 04:53 AM
carol, I Also Have The Same Feeling In My Feet Since Coming Out Of Hospital With W.g. 5 Months Ago, I Was Told It Would Take Several Months Before It Might Get Better. So Yes I Do Now What You Are Going Through. roger.

jola57
08-15-2008, 02:35 AM
:( I too know the feeling, I was diagnosed with WG November 2006. Given prednisone but not treated aggresively until a year later. In may 2007 I developed a dropped left foot with neuropathy of both left and right foot. After being given cytoxan for 6 months my feet are better, dropped foot is gone but neuropathy is still there. Total recovery is unlikely (but hopefully possible) Good luck with your feet
Jolanta:o

Trish
08-16-2008, 12:28 PM
Hi Carol
I have suffered the same feet problems as you. Unfortunatley I had 6 months IV cyclophospamide and that was when my feet problems began. Cant say whether it was the cyclo or just wegeys taking a hold at the time. I have finished with Cyclo treatment and they have now put me on methotrexate which I have once a week. A matter of taking 5 pills at home. No side effects so far and my feet are a bit better. I can now wear nicer shoes to work and dont limp all the time. I have also had a traceotomy a couple of months ago as I found it too dificult to breath but thats another story. In a message to Lucy, Andrew mentions a drug called Lyrica for his feet problems so will look into this. All the best Carol and if you do have any success with your feet I would love to hear about it. Im looking forward to those long walks and bike rides that I used to do before my breathing and feet let me down.
Kind Regards
Trish

RCOSSIO
08-19-2008, 12:46 AM
I too had the burning sensation and tingling feeling in my feet. I was given Lyrica 3x daily 50mg each and Vitamin B12 1x 100mg in June 2008. I was taken off Lyrica completely after 1-1/2 months...the feet felt fine except for some numbness, however nerve damage does takes time to heal...at least a year.

I am back on the Lyrica 1x daily for the nerve pain in my right ear.

If you can get Lyrica prescribe to you that would be great. The Vitamin B12 you can get over the counter.

Hope this helps!

Trish
08-27-2008, 01:34 PM
Hi Rcossio
Thank you for that info, when I spoke about it to my rheumatologist he would look at me blankly as if I was the only one who suffered it! I have an appointment at the end of September with him so I will take your info and hopefully he will prescribe it for me. How long have you had never pain in your ear and has it caused any deafness?
I hope this isn't another of those ailments that us WGs patients have to look forward to. :mad:

Kind regard
Trish

ian anderson
05-20-2010, 09:25 AM
yes i had this symptom the first sign of my wg actually like walking on broken glass prednisone did the trick we will speak agn

Doug
05-27-2010, 05:43 AM
I almost was over this sensation, came down with a severe case of shingles, and the condition came back, if not quite as bad as it was at first in 2003-2004. I've noticed too that worn shoes can aggravate this condition. The inserts in a pair of safety shoes I wore until recently were worn. The nerve issues in my feet- the burning, the numbness- improved drastically when I retired the worn shoes.

wgrebel
05-31-2010, 01:54 PM
I lost the feeling in my right foot pad because of Wegener's. I am in remission now but I still have no feeling in the foot pad of my right foot. One of the places the WG manifestied itself when I was being attacked was my feet. The vasculitis turned my toes black and I eventually lost a toe on each foot due to the disease. Only one toe was effected on my left foot which was later amputated. Three toes on my right foor turned black due to vasculitis and thankfully two of them healed. I lost one on my right foot because of the vasculitis that had to be amputated. My right foot still tingles. Doctor's have informed me the tingling means blood vessels and neurons are healing from the WG and that in time the feeling will return. It has been seven months since I lost the feeling in my right foot pad. Once remission was declared the tingling was not as bad but the feeling did not return. I developed a case of Shingles last week on my right leg which has since made the foot pain MORE INTENSE. When the shingles flair up my foot flairs up. I was placed on neurontin 3X a day and percocet 4X a day for the shingles pain & that has helped. The neurontin helped more than the percocet. See if you can get some neurontin. It will help.

This is a question for Richard above. You have been taking Lyrica. Please if you do not mind, give me a complete rundown on how it worked for your feet from start to finish. I have been begging my rheumy for some lyrica for my feet and he will not prescribe it for me. I am also going to ask my WG Specialist about it. The only way I was prescribed neurontin was because I developed shingles. Neurontin has helped my feet and the shingles but if I am looking at another five to six months of foot pad numbness/loss of feeling I want some relief. My appt with my specialist is June 7.

Thanks from Mississippi
WGREBEL

wgrebel
05-31-2010, 02:04 PM
Doug,

I developed shingles last week & I have to say it is some of the worst pain I have ever felt. Mine are on my right leg. The WG has damaged the nerves in my right foot and when the shingles flair so does my foot. The pain in my foot has returned (see above post) & the swelling has returned. My foot goes from nothing--to pain--to tingling--to a squishy/mushy almost like I am dragging my foot around and then back to nothing. How long did it take you to get over the shingles and did your specialist think it was WG related?

Thanks,

WGREBEL

Sangye
06-01-2010, 12:58 AM
If you have kidney involvement, Lyrica is contraindicated. Maybe that's why your rheumy won't prescribe it. Did he give a reason? It's quite a dangerous drug--linked to suicide.

wgrebel
06-04-2010, 07:52 PM
I cannot recall his reasoning but thanks. The Neurontin is helping the foot pain.

Carol
07-24-2010, 11:52 AM
The tingling in my feet has very very slowly improved BUT have just gone off Pred and my arm is tingling. I've been so well for so long it's a shock to have gone down hill. Perhaps the 2.5 every second day would have been a good idea. Someone on this site metioned it. I have taken Nerve Support Formula sporodically for about a month at a time, then get sick of iti and have a break, that I imported from USA. Maybe it helped but who is to know. Regards Carol Australia

drz
07-24-2010, 12:16 PM
I have had neuropathy from diabetes in feet and lower legs for years before WG. I haven't noticed much change after diagnosis of WG except at times the neuropathy seems a little worse. I took Neurontin years ago but it messed up my balance so I kept walking into walls. After neuropathy got worse and feet went mostly numb the pain mostly went away.

Sangye
07-24-2010, 11:00 PM
The tingling in my feet has very very slowly improved BUT have just gone off Pred and my arm is tingling. I've been so well for so long it's a shock to have gone down hill. Perhaps the 2.5 every second day would have been a good idea. Someone on this site metioned it. I have taken Nerve Support Formula sporodically for about a month at a time, then get sick of iti and have a break, that I imported from USA. Maybe it helped but who is to know. Regards Carol Australia
Carol, I don't know which supplement that is, but if you have any nerve involvement you should take something to support nerve tissue. Make sure it doesn't have anything that specifically boosts the immune system or that uses high doses of vitamin C. The B vitamins in particular are important for nerve function and regeneration.

Cindy
07-30-2010, 04:32 AM
This was one of my first symptoms that stared about 13 years before I was diagnosed.

Trish, Maybe you can print this page and take it to your doctor.

Hal
09-24-2010, 08:10 AM
I too have the tingly/numb/burning feet with nerve involvement. It is maddening, but hopefully will get better with time, rest, and the drugs. I am going to ask my Rheumatologist doctor about the Vitamin B suggestion too. Where I am getting frequent bloodwork done, I just want to double check that it will not affect the readings.

Sangye
09-24-2010, 09:48 AM
Vitamin B will not affect your bloodwork. I wouldn't hold my breath on a rheumy having a clue about vitamins. They have little to no training in nutrition.

jola57
09-28-2010, 01:00 PM
Agree, it was my family doc who suggested b12, and so I take b6/b12 combo

pberggren1
09-28-2010, 03:03 PM
Agree, it was my family doc who suggested b12, and so I take b6/b12 combo

Or you could take 2 b10s:biggrin1:

gmyi
09-28-2010, 04:40 PM
Hello all
I also developed shingles at May 2007 and I still have hypersensitivity in the area of my left side of head face and throat and it is about more than 3 years so I am aware of your suffering ,I use to wash with cold water to relive the pain

elephant
09-28-2010, 08:57 PM
How are you doing gmyi?

renidrag
09-29-2010, 12:09 AM
As you know I am in remission since May 10. My feet, heels and toes go from numb to painful to squishy in a flash. I don't know which it is going to be until I put my foot down. I did not know of vitamin B being good for this, I will ask today as I follow up with my Rhuemy. Will it affect my INR at all, this seems to have become a problem, I don't know why but I am all over the scale. Over all still feeling very good, still adapting to the new normal and by the way I have received disability from my company. Haven't been following as often. I hope all are feeling ok.
Dale.

Doug
09-29-2010, 01:11 AM
Doug,

I developed shingles last week & I have to say it is some of the worst pain I have ever felt. Mine are on my right leg. The WG has damaged the nerves in my right foot and when the shingles flair so does my foot. The pain in my foot has returned (see above post) & the swelling has returned. My foot goes from nothing--to pain--to tingling--to a squishy/mushy almost like I am dragging my foot around and then back to nothing. How long did it take you to get over the shingles and did your specialist think it was WG related?

Thanks,

WGREBEL

WGREBEL ~ I just came across this (!), and am sorry I didn't see it last May. Yes, my doctor notes the increased susceptibility to infections that comes from WG treatment makes it reasonable to regard the shingles as more likely for us than others.

Doug
09-29-2010, 01:24 AM
@gmyi ~ Mine (on the right side of my face) came in October-November of 2007.

Sometimes I used hot water, sometimes I used cold. Other times I wrapped my head in a towel that I soaked in water and microwaved.

Until I was put on Gabapentin (generic form of Neutrontin) at 600mg four times a day and Cymbalta (60 mg at night), I would get pain attacks so severe, I couldn't drive a car long distances for fear I'd have one in, say, Denver rush hour traffic while returning home from a doctor's appointment. I'm off Cymbalta now, but continue with the Gabapentin.

It is some pain, eh?! I have to sleep on my left side still because of the hypersensitivity of my face on the right side. I can't stand the pressure from the pillow! While less than three years ago, it is a constant reminder from wake-up till I fall asleep.

Even now, I'll dash cold water on my face for the reduced pain. The tongue pain is the most bizarre, since it affects (a jolt of pain) just the one side, of course. WGREBEL's experience (above) is all too familiar. As for WG, I'd say in my case the shingles is worse for debilitating pain.

gmyi
09-29-2010, 06:48 AM
Thanks for asking i am filing well as i do not exert myself

gmyi
09-29-2010, 06:59 AM
I also have the same problem to sleep on my right side and have hypersensitivity on face and head ( I have a beard ) I could not support wind on my hair and face but I am used to that form of sleep

LSO HAVE THE SAME PROBLEM

Doug
10-01-2010, 03:14 AM
@gmyi ~ I'm fuzzy on my face, too! I grew it because of the discomfort of shaving the afflicted side.

616 Here I am with my cat. He's the orange one being uncooperative.

ScreaminMeanie
12-12-2010, 12:38 PM
I have also mononeuritis multiplex - the painful/numb/tingly feet. It has gotten a lot better since starting treatment, but I'm gathering that it is something that may never go completely away. One of the things I've found that helps is to NOT wear the same shoes two days in a row. I've also had to buy all new shoes about 1.5 sizes larger than I used to wear, because any pressure anywhere on my feet makes it noticeably worse.