Does anyone suffer from Lead Like Legs? Sometimes my legs feel so heavy it is difficult to walk about.

[LMB2]

I have CNSV and also have degeneration in my lower back plus sciatica in my left leg but it is both legs that feel so heavy.

[BooBoo39 Volunteer]

Hi LMB2, i also have CNSV and experience very heavy legs but not all the time, they are worst in the middle of a flare. I also find they can also feel like i am stood up to my thighs in ice cold water, yet my legs do not feel cold to the touch on these occasions. I suffer tightness/stiffness often in the lumber region of my spine but not continually thankfully.

[John_Mills Volunteer]

John suffers with a very heavy leg...but he suffered a DVT back in 2007 caused by the Vasculitis (WG) this left him with a bigger fatter leg which sometimes aches and is tender to touch. The leg is always heavy and he struggles to lift it more than a few inches from the floor. He walks fairly well on the flat.. but not long distances.......he struggles with putting shoes and socks on. Both John's legs feel hot and sometimes he has a burning sensation especially at night if the duvet is too heavy or I touch his legs at all while we are asleep.

[vivdunstan Volunteer]

Yes, I have cerebral/CNS vasculitis and have this. At other times my legs feel numb, but more typically they feel like lumps of wood or lumps of lead. My arms are also frequently similarly affected. I think it's a direct result of the brain damage, and worsens during relapses/flares.

[milliewin]

Yes I also have CNVS and Viv sums it up very well, be it like lead or wood! it is my left side that is affected as this was the side I lost with the stroke. It is constant with me unfortunately and is hard to cope with have not found a way to relieve it yet? I wear a leg and hand brace including ones at night, the leg one stops me tripping a bit but the sensation never goes away and when I get really tired I walk with a noticable limp?

Sarah

[Budapest]

I have WG. If I am on my legs a lot standing or have a day when I do too much walking, e. g. shopping, my legs are very uncomfortable for a couple of days afterwards. I find wearing support stockings all the time (knee height ) makes a huge, positive difference. They are available to me on perscription. I do most of my shopping over the internet which is a great convenience to me

[Melon]

Hi

I am interested in this. My (probable) CNSV causes, amongst other things, the 'dead legs' exactly as described above. I have also noticed that my feet go dark on occasions (not usually both at the same time). This only happens for very brief periods, I have had this for some time (it was present at the onset of my disease) and there is no reason to suspect DVT. The change from blue/black to pink is fairly quick - seconds to minute or two not minutes to hours. I often notice it in the morning, so it occurs after laying down. It can occur at other times but my point is it isn't due to long periods of standing. Admittedly, I do not move while asleep but it is not always in the leg I lay on, (more likely to be in the other one which I have most trouble with anyway). I get the characteristic vasculitis 'lacy vein pattern' in my legs and elsewhere at various times too. Anyone else or just me?

I've sort of assumed that it is due to a CNSV caused reaction to the part of the nervous system that responds to pain/injury as a form of protection (ie. reduced blood flow/swelling).

[philippacardale]

Yes How interesting to hear I am not alone. I have CSS and from the moment I started walking again after diagnosis I have had heavy legs and fuzzy slightly drugged feeling in my head. Have now lived with this for 14 years. In the inexact science of medicine I have never had an explanation for this.

[cedric]

I GET HEAVY LEGS HAVE PROBLEM WALKING MOST DAYS