Scleroderma & Raynaud's UK (SRUK)

Oooh me legs!

Hi folks I have limited SSc. My feet are really sore and it gets worse as the day progresses. My fat pads are apparently thinning but this feels like plantar fasciitis, plus walking on pebbles plus electric shocks between 3rd and 4th toe. By evening I can barely walk. I use special insoles but this is no longer effective. I also have pain on the back of knees, doesn't feel like bone but ligaments tightening, sometimes I can't straighten left leg at night, same type of pain for hips. Also sometimes I have what feels like sore skin and fat(?!) all over legs so walking with accompanying wobble is painful - if this was a dating site I'd be expecting quite a lot of interest by now. I am typical middle-aged woman size, a bit overweight but not obese. My skin looks normal apart from rashes that last for months. Currently I am rash-free but in constant pain.

Is this a common experience? People at work are noticing. I can see me needing walking aids if this continues! it's been worsening over the last year.

5 Replies

Hi Anjigrunty,

Foot pain + electric shock type pain between 3rd & 4th toes rings a bell. Might be Morton's Neuroma. The term neuroma is misleading as they are benign nerve swellings. However that doesn't stop them causing horrendous pain.

I've had mine cut out, which was a simple few hours visit to my local hospital. If it does turn out to be the cause of your pain, be prepared to go up 1-2 shoe sizes so your toes are never squashed. I also can't wear shoes with thin soles or ones that put all your weight onto the ball of your foot.

It doesn't answer all your problems with pain & soreness but it might explain the specific toe/foot pain.

1 like

I have just the same. Walking is hard, I have to keep stopping every few yards. I now have a disabled driving permit. The best I can do to help is to look after myself, keep warm, have regular Iloprost and medication, and look after my feet, see the podiatrist and wear shoes that are not too tight and prevent friction on my toes.


Hello, yes I do occasionally get the tightening behind my knee and into top of the calf. It is quite painful especially at night when there might be pressure on the side of the knee joint. It can last several days.


I have had problems with my feet since I was diagnosed with scletoderma just over a year ago. I have seen at lrast 10 pecialists who have not been able to help. A couple of months ago i thought i near to finding an answer when a pidiatrist iagnosed mortons neurma. She rescribed special insoles which she said i would have to weat for up to 6 months to cure the problem. I persevered for 2 weeks with the pain getting worse by the day. I then got an appointment for a ultrasound scan which i should have had months ago. I was preparing myself for having cortisine injections following the scan which i understand can be painful but may offer a cure for a neuroma rather than having surgury to remove it. I was gutted to find the scan showed no sign of a neuroma so i coyldnt have the injection. More time wasted and back to square one. It is really having a big impact on my life. I am struggling at work as i and a lot of time on y feet and have had to give up ballroom dancing which i used to do 3 times a week. Like you I am afraid I will end up having to use a walking aid before much longer. I am running ou of 5hings to try now for the pain. If you find anything that helps please let me know. I hope you do find something.


I haven't heard of insoles curing the problem of Morton's Neuroma. Insoles are good (I wear them the whole time) and they will help aid conditions such as overpronation and flat feet, which I never had growing up but have developed with age, but they are unlikely to make a nerve swelling vanish on their own.

I've had several cortisone injections in my joints for osteoarthritis and they're great and effective for a few months but it's a short term relief only. I think doctors have developed different injection treatments for Morton's Neuroma but I don't personally know about them or how effective they are. Definitely worth researching and googling as there have been lots of medical developments since I had my foot problems! When I had my neuroma cut out, the choice clearly pointed to surgery being my only option as I couldn't continue with the pain (walking, standing or driving) and needed the most long-term effective option.

The single biggest help has been changing ALL my shoes. Though I've kept a box of useless pretty ones just to look at once a year or so and bring back memories! Yes, changing shoes costs money but personally I had no option. I'm now a UK size 9 (was a 7) and have to choose bigger-sized, more roomy, square toed, sturdy, well-made, thicker soled (not too thick) shoes. It is trial and experiment as I've still made some blunders with shoes that are big, thick & square but still trigger nerve 'irritation' and discomfort. My favourite trainer-type for the last year or two are a make called Keen - lots of toe room. A make called Crocs, especially the 'original' slip-on ones with soft fluffy linings, can be wonderfully comfortable (almost life-changing!).

Given what you said about electric shock type pain between 3rd - 4th toes, Anjigrunty, I'd make sure you mention it to your doctor and get your feet scanned to look for Morton's Neuroma/s. I can remember vividly the years of excruciating pain and hope you can find some relief soon.


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