Got a bit of a problem...

deedeeitsme

Hi all....hope you are as well as can be.

I have developed a strange problem and wondered if anyone could shed some light on it. I have been having problems with pain in my toes and feet for some time now and a couple of toes have decide not to bend which is problem enough but now they won't stop moving . My right toes do this ever so often but my left toes have been moving on their own now for over 48 hours. This is making the pain so much worse and is really tiring because it keeps me awake most of the night. There is no sign of them stopping (they are at it now as I speak). It doesn't matter whether I sit or stand they still persist. I have a podiatry appointment next week so will see what they say but just wondered whether anyone had any ideas.

x Dee x

LignumVitae

My toes did something similar for a while, moving side ways to extremely painful angles. I think it's everything struggling with the inflammation. Scary isn't it?! I think I just rested, elevated and put heat packs on them to settle them, ice being the alternative if heat aggravates them. Hope they settle soon, love LV xx

Numptydumpty

Hi Dee,
I must say that sounds dreadful. Is it muscle or nerve spasms I wonder.
I'm afraid I'm no help at all as I have no experience of this.
I hope someone comes along soon with some advice.
Thinking of you,
Numpty

Soretoe2

Hi Dee, It may very well be the start of arthritis in your toes and you have an irritated nerve leading to those two, giving you spasms. Also cramp in the toes can do this, it feels different to cramp in the calf.
Do you suffer from Sciatica or similar back problem? as occasionally the nerve pain can go right down and affect the toes.
Although it can be painful at the start a massage can help a bit. Otherwise take painkillers and keep them warm.
Could you phone the podiatrist on Monday to see if they could fit you in as an emergency? They should be able to give you an idea what it is. You may need to have an x ray or scan to see what's going on in there.
It's really horrible having painful tootsies. I have them myself and have had three foot operations over the years.
I do hope you get some relief soon.Let us know what's causing it when you find out. Joy

deedeeitsme

Hi there and thank you all so much for taking the time to reply.

As you can see by the time I've had no sleep again tonight because of these bloomin toes and my shoulder has kicked in just because it can. I'm sure it's not cramp cos it feels different (I have had cramp in the toes before). I am thinking that maybe it is to do with pressure on the nerves but not sure where from. I do suffer from back/pelvis pain but as yet no one seems to be able to tell me why. I was referred to the podiatrist through my rheumatologist because of my toes not bending and the moving toes started after I had seen the rheumy so not sure if the will see me earlier than my appointment on thursday. I'll be asleep on the examination couch if this carries on. So fed up of this now and really need some answers from one of the professionals, its been over a year now since this all started and 3 rheumys later and I'm still clueless as to whats happening in this stupid body of mine.

x Dee x

archaeobard

Dee this sounds awful. It must be terrible not to be able to sleep because of it. My toes stick out to the left and right and are drawn up like hammer toe, but I have never had them moving on their own. Don't think I would like that at all.

It sounds a bit daft, but have you thought of binding the foot in a bandage to restrict the movement of the toes? I'm not suggesting you turn into some odd parody of a one stumpy footed madame butterfly, but it might help at night for you to get some sleep.

Kat

deedeeitsme

Stumpy footed butterfly, me, what a vision Stumpy elephant more like . I did actually say to hubby that I was going to wrap my feet like the chinese do to try and stop them moving but have decided to wait and see podiatrist before I do anything just incase I do more harm than good. They are still on the move this morning (I'm sure they just did a mexican wave :shock: ) but my friends has just texted to say she is coming for a coffee and catch up so at least she will take my mind off things for a while. Have a good sunday everyone and enjoy whatever you have planned x Dee x

skezier

Hi Dee

Oh flower the being kept awake by pain is hideous.....

I think you should go see your gp, rumo nurse or rumo if its inflammatory you have but I also know mine do it but cant bend as the joints have been removed.

Mine is a combination of the pa and the shift circulation but you ought get it checked out flower.

Hope you sleep better tonight. Cris x

salamander

Hi dee, it sounds horrid. I've had a sort of cramp in the sole of my foot down to my toes and reckoned it was side effect from drugs. Are you on meds? (forgive me for not knowing, haven't been on here that much lately).

frogmella

I have spinal problems and I have awfully painful feet. My feet feel like someone has been hitting them with a big old stick, or, like I have been at a really good party and danced all night. I also have a calf that moves all by itself, but not toes. It does sound like a nerve thing to me but I am not a doctor.

I hope you get some answers soon. Incidentally, I did find the nighttime cramps in my calf eased off on amitriptyline, plus I slept like a log!

deedeeitsme

Well day five and they are still on the move and I have got some swelling around the toes but after 5 days of moving 24/7 you'd expect it to take its toll and kick back somewhere. I am also very sore behind the knee now (top of calf) so it's affecting other bits too now, to be expected again though.I also think its nerves caused by my back problems but I will have to see what podiatrist says. I upped my amitriptyline last night to 30mg instead of 20mg and I had a better night (woke up once but settled back down) so thats a plus. I did google though (I know) and there is a syndrome called Painful Foot Moving Toe Syndrome which is quite rare but the symptoms are spot on and it can be caused by compression on nerves in the lower back but it is also a sympton of Parkinsons Disease (which my gran had) so will really be pushing for answers/tests to rule things out. One lady has suffered from this Syndrome for 36 years .
Poor thing, I'm at the end of my tether now after 5 days.

x Dee x

salamander

Dee, I hope it turns out it is none of those things.

deedeeitsme

I hope not either Salamander. You just know though that it's a waiting game now to find out what the problem is, I've been at it for over a year now and got no furthur with my other issues and now this, makes you wonder when/if it will end. I always cope better when I know what I'm fighting but not knowing is the pits so hope I get at least an inckling of what this could be when I go on thursday. Would go and see gp but I know he's gonna say wait and see what podiatrist says because they are the experts on feet.

x Dee x

stickywicket

I hope the podiatrist can help but I'm not sure they can refer you specialists. Do you have a rheumatology helpline, Dee? I think I'd be ringing them in your situation.

deedeeitsme

No I don't sticky but I might see if I can find a contact number for the rheumatology department where I went. I've got a feeling it is neuralogical so really don't know who to turn to. I have had full shoes on for the first time in ages because I had to go out today and it has been hell. They do not let up even for a minute and it is grinding me down now.

x Dee x

stickywicket

Maybe the GP? If it's neurological you need someone who can refer you to a neurologist. A fellow consultant is usually the quickest route, in my opinion, but a good GP runs a pretty close second.