I suffer with Raynaud's & have recently started suffering with numbness in my feet when doing exercise, has anyone else experienced this?

[Heleno]

[NigelC]

Hello

Yes i have a problem with numb feet when exercising. Pre Raynaud's I was a keen runner, not brilliant but keen. I developed Raynaud's in 2000 and rather gave up running but in 2002 I decided i wanted to run another marathon. Running through a winter wasn't pleasant but I got through, but i found my feet were numb for about the first 40 minutes, after that some life came back but it took until a few hours after the run to feel completely happy with my feet. I've now stopped running but still cycle. I think the body shuts down the extremities to ensure blood goes to the heart, lungs and muscles but what do i know.

regards

[Heleno]

Hi Nigel,

I have had numb feet before but only when they got cold but it's only recently that I found them going numb when excercising in the gym (despite being warm) and out cycling. Bit of a bugger really as I am doing a 400km charity cycle ride in November (in a warm country fortunately). I did mention to my doctor but he didn't really have any solution, so I will just have to put up with it I suppose. Can't believe you ran through a winter with this condition!

[NigelC]

Hi Heleno

Fortunately the 2002/3 winter seemed to be quite mild,I don't remember any snow.

When I cycle before i go out I put my cycle shoes in-front of the fire sole side up, toasty, it does help. I also wear overshoes the neoprene type in winter. The 400 km ride sounds great, I've done a bit of cycle touring. Cycling is a great way to see a country, being warm sounds even better.

[uknlv]

I find this too, as well as losing feeling in my hands now when I excersise. You might want to try the socks with silver in them, I got them from the main website here and the silver socks, fingerless and regular. And I find them both very helpful.

Good luck with the cycle ride!

[Emma2]

I find that my feet go numb when it's cold and it depends on what I am doing as to how long they take to "come back". One thing I would say is that if you are training in the gym then certain machines do seem to make your feet go numb and this seems to effect everyone (i.e people with and without Raynaud's). I have noticed that the cross trainers often leave a lot of people with humb feet - simply because they are not moving too much and your toes are still. Something like cycling or running keeps the feet a bit more mobile and active. If you are really suffering you could try the heated socks or some heat pads for your feet (although they may not be that comfortable depending on the exercise you are doing).

[Barnclown]

I get numbness + pins&needle + nerve firing in my toes. All are bad when I walk or do anything on my feet. And over the past 15 years this has been getting worse and worse, even though I have high arches and have worn languor bespoke orthotics all my life, most all the time but especially when doing anything like exercise.

Until 2 slipped discs in my neck totally slowed my down by late 30s, I was active (mt walking, biking, working as a gardener, tennis etc). But for years I've had to go a lot more gently (pilates, Alexander technique, yoga etc). I'm now 57

The podiatrist, orthopaedic surgeon and my pain specialist say I have high arches but my metatarsal has collapsed (I don't actually seem to have morons neuroma). I do have arthritis in both my big toes.

But probably most important is that I have both raynauds (RP) & erythromelalgia (EM), and was diagnosed with lupus when I was growing up. The rheumatologist is reconsidering this diagnosis now in light of how lame I've become

I do wonder: Is there anyone out there with this mix of numbness with these other symptoms and conditions?

Maybe I should've started a fresh question?

You all sound a lot more active than I am!

Keep well, all

[annebrown]

I've suffered with numb feet when I cycle for a number of years. My doctor has never had any solutions

[Hidden]

I was diagnosed with PBC 9 years ago at the same time as crest. Raynauds and swallowing difficulties were my main problems. However, towards the end of last summer '12 my toes felt partially paralysed, and I could no longer move them as I used to. But most alarmingly of all I started to lose my balance. My Gp just said it was crest to blame. I have adapted to cope with this my literally digging my heels in before leaning forwards or bending Down. On getting out of bed after a night's sleep the whole of my lower legs are numb and I stumble around for a few minutes before regaining control. There does not seem to be anything that can be done to cure the problem. The temperature makes no difference. Sometimes one of my toes becomes so painful I can hardly walk then, just as fast as it came, it goes away. Is there no limit to the weird symptoms of this disease! It can get me down at times, and know I am not alone in this.

[Heleno]

Yes I do & cramp when exercising. I put a salt replacement tab in my water, drink tonic water as someone said quinnine can help with cramp & stretch after exercise but nothing seems to work!

Be interested to know if you find anything that does.

[Hidden in reply to Heleno]

Hi Heleno, it is likely you have minerals missing in the body. Up your magnesium and other mineral intake by eating sunflower seeds, pumpkin seeds, eating lentils/pulses. Try really stretching those muscles before after if possible and at home between classes.

Hope it helps.

[beehopeful]

Omg I had this problem where I went spinning classes and because my feet was so cold they would go numb I couldn't do a full work out its horrible as I have raynauds too as well as lupus, but a good work out before hand and sensible trainers with good insulated socks did the trick for me try too invest in good trainers that aren't breathable material.

Hope this helps

Goodluck x

[Heleno in reply to beehopeful]

Just realised this was my origional post 5 years ago - doh. Obviously it hasn't got any better lol, & now just been diagnosed with PBC.

[beehopeful in reply to Heleno]

Lol O dear I didn't even see it was 5 years ago....for me it's on going so I can relate too you,I'm really sorry too hear this stay strong x

[ilovedancing]

I have struggled with my feet ever since being diagnosed with scleroderma almost 2 years ago. I have suffered with Raynauds in my hands for many years but have managed to cope ok with this. I only have pain in my feet when exercising or even just walking. I start out perfectly ok, then after 10 minutes without fail it starts. It is so bad I can hardly bear to carry on walking. I now only do yoga and pilates and swimming at the gym. Any form of aerobic exercise brings on the pain. I have had to give up ballroom dancing which I used to do regularly. I have seen numerous specialists but nothing has worked. I have tried everything from customised insoles prescribed by a podiatrist. It made my feet worse. Acupuncture did nothing for my feet but did cure my acid reflux! I have tried various lotions and potions, including one containing chilli pepper and a disgusting smelling one from China. No effect on the pain. I have tried painkillers including tramadol which did nothing for the pain but made me dozy. My GP even prescribed antidepressants in an attempt to suppress the pain signals going to my nerves but I was wary about the side effects so didn't take them. I was also prescribed some patches but I didn't like the sound of the side effects which included sudden death! My most recent attempt I just hope it works and U at a cure was an APS machine which works in a similar way to TENS and has a good record of pain relief but after using it as instructed for 3 months the pain was no better. The list goes on and I haven't really been given a proper diagnosis as to the cause. I suspect it is a vascular problem but I have had various scans which have not shown anything. I was diagnosed with Mortons Neuroma at one point, which I was pleased about as there appears to be a cure for this but a scan showed I didn't have this.

I am determined to find a solution and am now awaiting a fat transfer into the soles of my feet. The consultant seems to think this may offer a solution so I will have to give it a try. I just hope it works so that I can get back to a normal life.

[Heleno in reply to ilovedancing]

Blimey, you sound like you have been a bit of a guinea pig! Hope this new treatment works for you. Since posting this question 5 years ago lve been diagnosed with PBC, and I think this might also have something to do with the numbness & cramps I get!

[ilovedancing]

Do you mind me asking how you were diagnosed with PCB. It was mentioned on my notes with a question mark when I was first being diagnosed with scleroderma but I have not heard any more about it.

[Heleno in reply to ilovedancing]

Replied to your post but think it went as new post! Not good at doing this on my phone lol

[Heleno]

I was referred to a consultant about 4 years ago by the consultant I went to see about raynauds, due to having abnormal liver function results. I was reviewed every 6 months but the LFTS didn't improve, so I had a biopsy a year ago which came back inconclusive so that got sent off somewhere else for further analysis and that came back with the diagnosis. It explained a few things like feeling exhausted a lot of the time which apparently is one of the common symptoms but my consultant never asked me about! Also read that people with PBC often have other autoimmune conditions such as raynauds. I'm going to ask my consultant about the cramping I get when I next go as I'm wondering if that is linked due to my liver not being able to process the vitamins and nutrients in the normal way.

[Heleno in reply to Heleno]

This was meant as a reply to another post!

[ilovedancing]

Thanks Heleno. You seem to have posted in the right place! I have regular blood tests as I have essential thrombocythemia which was diagnosed shortly after the scleroderma. I am wondering if pbc would show up on these tests or if it needs to be tested separately. I also have an underactive thyroid which I know can be associated with PBC. I think I might mention it next time I see my consultant. Is yours well controlled with medication? I seem to be taking so many tablets for all the different things I have suddenly developed and was really cautious at taking them at first but I do feel quite well apart from my feet so something must be working.

[Heleno in reply to ilovedancing]

I've been given ursofalk to slow progession into cirrhosis, but have read this doesn't relieve any symptoms! Only diagnosed a couple of weeks ago & don't go back to consultant for another 3 months so will see if it's made any difference to blood tests then