Engorged feet and hands
AnonymousSeptember 6, 2010 at 1:28 am
I have a symptom that seems to not fit with CIDP and I was hoping someone could verify.
When I first started having problems about 6 months ago, my very first symptom was veins engorging in my feet. My hands started doing the same thing about 3 months ago.
Now when I stand up I have is pain on the soles of my feet, followed within minutes by engorgement of veins in feet which then leads to burning initiated at bottom of feet and progressing all the way out to toes.
Walking is easier than standing.
Once I get off my feet, pain and engorgement go away. By morning I have no pain until I stand up. Then it builds through the day.
Is this something seen with CIDP?
AnonymousSeptember 6, 2010 at 2:01 am
To me, it seems more likely to be a vascular issue (although it could still have an autoimmune cause) than a specifically neurological one, largely because autonomic nerves problems are not that common in CIDP. Still, with nerve disorders, nearly anything is possible and autonomic problems do happen, as several people here can attest.
Did your doctors understand that the first symptom was vein engorgement? What did they say at the time? Did they do any testing beyond that needed to establish CIDP? If this were happening to me, I would make an urgent (within the next week) appointment with my neurologist. If he did not have a good answer, or at least a plan toward getting a good answer, I would get a referral to a vascular surgeon (not necessarily for surgery; they seem to be the doctors who cover all vascular problems) or somebody who could diagnose vasculitis.
Godspeed in finding the cause of this symptom and an effective treatment.
AnonymousSeptember 6, 2010 at 3:54 pm
My veins bulge out nowadays too. I’ve been on corticosteriods since 1993 for asthma, but I didn’t notice the bulging veins until I got GBS. Sometimes they stood out so large and darkened, and I was in so much pain, that I even worried about blood-poisoning.
I am currently taking no prescribed meds for the GBS. I get the same burning foot pain as soon as I get out of bed each morning; it worsens throughout the day, my feel swell and I get more and more cramps; by the end of the day my legs are very swollen but the veins stand out whenever I’ve been standing or walking, and are worse when I’m hot. Standing is harder than walking, because of the pressure of continuous contact.
It helped me to put on my sneakers as soon as I get out of bed, wear large enough shoes with foam pads in them to relieve my feet from pressure, bed-rest frequently throughout the day, and soak my feet in bathsalts before bed, then rub mint footlotion on them. Brings relief and makes me feel refreshed.
AnonymousSeptember 7, 2010 at 10:41 am
I have very painful feet and somewhat painful hands. My hands and feet will swell the more I am up and around. I don’t get the vein engorgement though.
I do have autonomic symptoms in my CIDP, though I am not sure if I would consider the swelling an autonomic symptom. I do seem to have vascular symptoms, probably from the autoimmune inflammation.
I will elevate my feet when the swelling gets really bad.
AnonymousSeptember 8, 2010 at 2:00 am
It sounds like CIDP could be a match for me. I appreciate the guidance because it is helping me determine my next step. Presently, I am untreated with 3 options: CMT, CIDP, or B cell Lymphoma. If CMT, just pain management, if CIDP steriods will be tried, if B Cell then chemo will be tried.
Any guidance is appreciated.
AnonymousSeptember 8, 2010 at 11:52 pm
I get the same pain burning in my feet. I often thought it was the pred but I have been slowly weaned down to 30 and 0 I receive plasma every 3 weeks and notice that the pain and swelling gets worse just before treatment. I am now thinking its related to my CIDP. I also have a protein in my blood which they beleive caused my cidp.
AnonymousSeptember 22, 2010 at 5:58 am
[QUOTE=ubbietom]My diagnosis is CIDP. My feet are swollen, red and sore. Worse at night than in the morning. I think it all started when I was on prednisone.
You are the first person, I have found, who has mentioned swelling with CIDP.
My swelling started about three months ago, after I had been taking tramadol
for pain for a few weeks. It started with swollen toes, and very gradually
spread to the whole foot, and ankles, and perhaps up the legs. It was on one
foot at first, the foot most affected by the CIDP. My neurologist said it is
likely caused by the CIDP. I had been diagnosed with CIDP for almost a year
and a half, before the swelling started. I never had swelling in the feet, except when pregnant. I think, the tramadol is the cause of it, as it gets
better, when I stop the tramadol for a few days, but it never goes away
completely. The swelling makes it harder to walk, so I have recently started
on a new drug for pain. Does your swelling come and go with rest, and ele-
vation? Mine does not. Does your neurologist think, it is caused by CIDP?
Has he suggested any treatment for the swelling? Do you also have mild
leg pain at night, only in the leg most affected by the CIDP? My neurologist
says he wants to stay positive, and that pain can be a sign of healing. I get
very little feedback from him about pain, symptoms, and source of the pain.
I have so many questions, and so few people can give me answers. It seems
like nobody really knows. One doctor told me, that there is seldom pain assoc-
iated with my condition, yet, many people talk about serious, long term pain.
My neurologist offers me pain prescriptons, but no answers. I also get such
varying kinds of pain in varying degrees of intensity. Sometimes, it is stabbing
pain, sometimes burning pain, and sometimes a dull ache. It is sometimes in
the toes, in the lower arms, and the upper thighs. Most of the time, it is mild
but I would like to know, if it is from the CIDP, or some other condition, that
is not yet diagnosed. Any details of your foot swelling would be appreciated.
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