Numb toes

[phebamom]

Anyone else with GCA having issues with toes going numb? My toes go numb when I stand for any length of time, especially standing in my sewing room, and while cooking supper. PMR/GCA at least 20 years, with relapsing and remission. On 5mg. prednisone and monthly infusion of Actemra. Age 66.

[Hidden]

Morning, I've been waiting for almost 2 yrs for someone to talk about numb toes. One evening I was relaxing with feet up and suddenly noticed two toes on my left foot had gone numb (little toe and the one next to it) Eventually, I managed to see someone about this, she had no idea why it had happened. I do have Achilles tendonitis, same foot, so not really sure whether it's that that has caused it or not. Today I'm having physio on my Achilles heel, that now has a lump on it....been waiting ages for this appt. I have PMR/GCA. Diagnosed with PMR Dec 2019 and in March 2020 GCA. Currently taking 7mg for a month before I try again at 6.5mg....only tapering by 0.5mg monthly. I'm guessing that numb toes could be part of vasculitis. I mentioned my toes to my rheumatologist before he discharged me last year (big mistake) he didn't know why either.

[SnazzyD]

Hello, firstly have you seen a doc yet to rule out circulatory or neurological issues? Basics first - When you are standing, check in on yourself and see if you are curling your toes as if to grab the floor. Some postural issues or foot problems can cause you to do this. Certain footwear makes you do this, especially loose shoes or sandal types held only by a strap across the top of the foot or flip flop style. Also, do your shoes put unrelenting pressure on the ends of your toes when you stand, even slightly?

A podiatrist may be able to shed light to see if there is too much pressure on the joints at the bottom of your toes that then pinches the nerves. I don’t know if you’ve heard of Morton’s neuroma for example. A general doctor may not know about these kind of specific foot things. You may be subtly pitching forward too much so all your weight is on your toes.

Is there a pattern of hard skin?

Do you have any swelling anywhere in your feet and legs?

Whoever you go and see, it’s worth doing lots of investigative homework to avoid the wrong path and save time when you can present some of the pieces of the diagnostic jigsaw early on.

[dmart7 in reply to SnazzyD]

Good roundup by Snazzy. I would only add a couple of points. First, to emphasise the possibility of Morton's Neuroma. Although it usually occurs between the 2/3 or 3/4th toes, it actually occurs just as often 4/5th, although in this case it is usually without symptoms. Secondly, I would think it less likely to be connected with your PMR/GCA.

[PMRpro Ambassador]

Do you get sore feet when walking? As we age the fat pads on the bottom of our feet also degenerate so there is less padding protecting the structures inside. Standing or walking may cause pressure on blood vessels or nerves resulting in numbness - just like lying on your arm can cause numb fingers. And everything else Snazzy said ...

[Hidden in reply to PMRpro]

I didn’t know that about the fat pads, explains some of my foot pain I feel.RA in big foot joint, knees and hips. Achilles tendinitis and enthesitis and still recovering from very bad calf and foot muscle injury sustained October 2020.

After the injury I had numbness of the entire foot until this January when I started some physio exercises and it has almost gone now but prior to that numbness is the first two outer toes was normal for me and I thought connected to Raynauds?

[PMRpro Ambassador in reply to Hidden]

Possibly the foot version of ulnar nerve entrapment in the arm and numb pinky?

en.wikipedia.org/wiki/Later....

[Hidden in reply to PMRpro]

Great link thank you!

[Hidden in reply to PMRpro]

I think the fat pads in my feet have migrated to my bum cheeks 🤣

[lindyloy]

I started with a pins and needles in my right foot in 2016, almosta year after starting with GCA. my left foot started (but not quite as bad) three months later. I went for nerve tests, but they were o.k. my GP told me if I wanted to go "down that road", I could be at it for years, so here I am, still don't know why.

[nallufl24]

I often had numb toes on higher doses of pred. It pretty much went away when I got to lower doses.

[phebamom]

I have curling of four of my toes on both sides. I noticed this last year. The toes are starting to curl. I also have red splotches on both feet. The splotches go away when I take a shower or elevate my feet. Both my mother and grandmother had poor circulation in their legs. So, on top of the GCA I may have some genetic stuff going on. I also get ghastly knotting up of tendons in my ankles, usually in the evening. I was just wondering if others had any such issues.

[DorsetLady PMRGCAuk volunteer in reply to phebamom]

Perhaps you should ask for an appointment with a podiatrist or orthotics Dept, usually come under orthopaedic umbrella.

[SnazzyD in reply to phebamom]

Correcting orthotics can save you all sorts of foot and ankle miseries.

[PMRpro Ambassador in reply to SnazzyD]

As long as they are the right ones!

[SnazzyD in reply to PMRpro]

Indeed! No experiments off the internet!

[phebamom]

Well this is a silly question, but do our feet grow as we age. I was always an 8.5 shoe, then went up to a 9.5. Now a 9.5 seems to be cramping my toes. i cut the toes out of the house slippers I am now wearing.

[PMRpro Ambassador in reply to phebamom]

Not usually - but the tendons and ligaments may stretch and your feet become flatter - and longer and wider. Or they may swell a bit due to various conditions so you need a larger shoe. I needed a continental size larger in the days of pre-pred PMR. Still have the shoes - can't wear them though as they are to big!

[Jayge]

Yes, feet can change shoe size. Was told by Podiatrist to get always to have feet measured before getting new shoes. I wore size 7 in my 20’s. Now wear 9.5 as a senior.

[phebamom in reply to Jayge]

I thought so. I just arrived home from the shoe store. I bought a pair of wide toe New Balance and Dansko slip ons for around the house. I have not had one incidence of muscle/tendon spasm today. I shall see what tonight brings. The shoes I was wearing were very bad with the toes cut out and being worn out shoes. First new since pandemic started. Hopefully shoes will help. the shoe store lady the curling toes were called hammer toes and were from ill fitting shoes.