I've been diagnosed with raynards for around 2-3 years. I've been having extra problems with my feet. I'm due to have a nerve test in a couple of weeks. I've had an x-ray and they found that I have arthritis in my big toe. I've always thought the pains I've been having was chilblains!! Anyway - I was wondering if anyone else suffers from this and is this the way it will be from now on? I'm sure I have it slightly in my hands...
I had to laugh as the appointment letter for the nerve test said the test might not work if my hands and feet are cold...! Erm, how on earth will I be able to keep them warm (if they get warm), if I'm sat waiting for my appointment. Can't wait to see the look on their faces when I ask if I can march on the spot for 10-15 mins to slightly warm them up heehee!
Any comments would be appreciated, thank you. xx
Written by
LiseHickin
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I hope the hospital where you will have the test will be warm. Go early and get warmed up. Do they have hot drinks I wonder. Do you have a rheumatologist about the pain.
I too had very painful big toes which was thought to be gout, until X-rays proved otherwise. I struggled to walk far and was kept awake just by bedding touching my feet. A body scan showed I have osteoarthritis in most joints and I've since had both big toes fused. SUCCESS - the pain went! Sounds a bit simple but it did take quite some time to become pain free. Just need to beware in airports as my feet beep in scanners!
Just need knees, hips, shoulders, wrists, fingers, ankles and elbows sorting now
Also had bone taken out of my wrist which has since partly regrown - so not very successful.
Nerve tests showed carpal tunnel in both hands but they can wait!
I have Raynaud's with Scleroderma plus other funny things going on and I find it so strange how we all differ with this blessed disease as most people on here have RA not OA.
Sorry - haven't I waffled on? Huge apologies
In answer to your query about big toes - YES they can be sorted when they become unbearable.
Thanks Gill. Having them fused - what's that then? I'm a little scared now...
So, I'm thinking the arthritis won't stay in my toe, it's likely to travel? All these other related conditions - as if we haven't got enough to be going on with! xx
Fusing the toes means getting rid of the dodgy bits of the toe joint then putting plates and screws in to stop the toe moving any more. Sounds grotesque but it isn't - honest!
I had been in awful pain for a long time. My big toes don't bend properly any more but that's a small price to pay for being pain free. For a long time I had to wear really horrible shoes just to be able to walk - now I'm able to wear 'proper' ones which is great.
It's quite a common operation and very successful. I couldn't take anti inflammatory medicines because of stomach problems but maybe you will be able to control the pain with medication without resorting to an operation.
It doesn't mean you will end up with arthritis in every joint - everyone is different.
Well, I also have Raynaud's. It affects my hands, as fingertips are numb and toes are a bit also. I also have arthritis in my hands but that does not bother me. The numb fingertips are really bothering me. I must see a rheumatologist soon, will try one over an hour away because the one in my town did not call me back and she works only 3 days a week. I also have a collapsed left arch and crooked ankle so must have podiatrist fit me for a custom shoe brace next week. I have found out from another forum that Raynaud's can also affect the ears and nose and mine have just been very sensitive. Now I know why! I am amazed. The people who told me that are in Europe. I have all kinds of info on Raynaud's from the U.S. and it does not even mention this!
What the heck are chillblains? Sounds like an old wive's tale to me. It is a very old fashioned term. No offense meant here. Are you a senior like me? I have heard about wearing gloves if hands are cold, warm socks if feet are cold, also there are such things to buy as electrically warmed boots, etc. Just google to find out about these.
This New Zealand website is great for all sort of stuff like this...I have systemic lupus & immunodeficiency as primaries, with early onset complex feet & leg conditions inc arthritis & simultaneous raynauds + erythromelalgia inc weeping chilblains, peripheral neuropathy, hypermobility etc etc so have spent a lot of time researching online in order to better understand my diagnoses & treatment plans, and this website has proven v reliable & reasonable
Thank you! Chillblains are when your feet/hands have been extremely cold and once they start warming through they are so painful. Not sure if it's an old wives tale or a proper condition though. I've always suffered.
Sometimes the numerous socks and gloves just don't work. xx
Yes I do. They think it's tarpel tunnel but I'm not so sure. I think it's linked to my raynards in some way. I hope the nerve test works and they find out. It's so painful sometimes. Only ever used to be after I've walked loads (I go rambling and pavement pounding for 4/8/12 miles), but now they hurt/ache/tingle nearly all the time. I just hope I haven't done irreparable damage with the long wait he have here on the UK NHS.... xx
mine only happens at night for some reason. But they couldn't find any reason behind it. As usual. I'm not surprised anymore when things stay undiagnosed. Good luck to you with the test hope they found something.
Yes, Lisehickin i have suffered and encountered and coped and sometimes managed those symtoms. With Raynaud's staying warm in affected areas has helped. Heavy covering did not help. I wear fleece lined shoes at home. I carry a fleece foot pocket in my purse. The nighttime cramps are unsettling. My big toes get a dose of peppermint oil and a fleece blanket at night. There are some other ways with massage and reflexology that work for me. I hope a few simple tthings here help you manage.
Hi yes I have arthritis in my left foot. Mainly the bug toe but some other toes as well. I was recently diagnosed with it. I always thought the pain was raynaurds related but it was actually the arthritis. I recommend inflammatory gels and keeping ur feet up. If it becomes really swollen then bag of frozen peas. That's what I've been told to do. Hope u can get some clarity from ur doctor on the matter.
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