Please help

[julie1234]

God I am going mad,  the bottoms of my feet are burning so bad when walking I can not stand it a minute longer I want to chop them of. Has anyone else got this.

[Evaj3]

Yes for 8 months now. I know you can try gabapentin and lyrica. I know someone who rubs a compounded cream with gabapentin and lidocaine who states it works. I tried Accupuncture when they were feeling really bad and it's did settle down the pain in my toes

[Shann07]

Yes i have and its horrendous. It was mainly my toes but the burning, throbbing was like no pain ever! Do you have raynauds? My rheummy said it was severe raynauds and some nerve pain. I had it so bad I stayed in hosp for a treatment for raynauds called Iloprost and it has worked fantastic. I also take amitriptyline and Dialtazem - a vasculator for this.  Due to have a nerve conduction test with Neurology too. Thank goodness im now pain free.  You should contact your rheummy if its severe. 

[carollesley]

my toes go red and burn and painfull think it just part of the lupus 

[Hidden]

This was how my RA/ connective tissue disease symptoms started five years ago - followed swiftly by excruciating pain in both knees and wrists. It did ease finally. Now I have a small fiber polyneuropathy which is same but affects my hands and mouth too but burning has been replaced by numbness and freeze apart from gums and lips which sting like mad constantly now.  I think it relates to Raynauds/  Erythromelalgia (EM). All I can suggest is that you avoid temperature extremes ie hot baths or showers and you might get some relief from a magnesium spray or Aspirin. Also I sometimes found that soaking feet in cool water with Epsom salts after a warm bath or shower helped reboot the nerves for a while - a warm shower followed by a cool one was best. 

[EOLHPC]

Am v much feeling for you.  My version of this is dreadful too.  In my case this has been diagnosed as raynauds simultaneous with erythromelalgia.  My daily combined therapy lupus meds help somewhat to damp this down, but mainly coping is all about lifestyle management.  I find that moisturising my feet is very important. My fav is share butter.  Otherwise I spend a lot of time with bare feet.  I tend to sleep with my feet & hands sticking out of the bedding.  Unfortunately, this condition isn't well known so few Drs are aware of it

There is a good Facebook page run by the erythromelalgia association...here is the link:

facebook.com/erythromelalgia

If you want to find others with EM & RP, there are a few on the HealthUnlocked  Scleroderma & Raynauds Community

🍀🍀 coco

[suzannah16]

I get burning feet all over my foot but mainly the toes, also my hands.  my rheumy wasn't interested so I've had to try to help myself. strangely I have found the best solution is to put my feet in warm water for 15 mins, not too hot or cold, and find it usually gives me 24 hours relief from the burning.  I have a shower over the bath and put the plug in when I shower so my feet soak.  weird but it seems to work for me.

[creaky]

My feet burn, particularly at night, I to stick them out of the bottom of the duvet, and Wear loose fluffy socks. Did lots of research and found the lightest possible microfiber duvet too, as I can't stand anything resting on my feet.

[Josieswolf]

Hi sorry to hear of your problems but if you feel this way about your dr he will li would assume liase with his colleagues who do have more experience in this field. As a consultant he will have many years of experience behind him. Hope you get sorted soon x

[juliekendell]

Hello Julie 1234.  I've had problems with my feet since last year. Went to GP who said it was inflammation of the tendons was put back on amitriptyline as this could help, year on and still have periods of painful feet which makes walking impossible.  Do you have the same pain in both feet? If nerve pain it could be CRPS, the only way you can describe the pain is your feet are on fire, they go hot and cold, when hot they hurt like hell.  My son had surgery on his ankle 3 years ago but some how one of the nerves got damaged (CRPS), he takes a cocktail of drugs to help manage the pain.   ninds.nih.gov/disorders/ref... this link may help or at least arm you with information if you go back to see your GP/rheummy.  I hope you get this sorted.

[EOLHPC in reply to juliekendell]

Great reply, julie.  I'm glad you told us about your tendons & your sons CRPS.  Am wishing you both every best wish with this.  Re tendon probs in the feet/ legs did you see this recent discussion here:

healthunlocked.com/lupusuk/...

my case CRPS burning combined in my right forefoot with simultaneous raynauds & erythromelalgia to give me 7 years of nightmare...by year 7 I had finally asked for amputation.  Which of course just tends to create more probs for CRPS patients.  Fortunately that same year I was referred to a brilliant CRPS expert prof ortho surgeon who figured out the last piece in the jigsaw puzzle of issues composing my version of CRPS...I continue to manage CRPS but the agonising daily pain is now more controllable....however the RP&EM burning continues in its  characteristic daily cycle 24/7.  But I'm glad to still have my extra wonky right foot

🍀🍀🍀🍀 coco

[julie1234]

thanks so much for everyone's replies i am very grateful, no one else seems to understand how it feels, my mother-in-law says to walk through the pain i wish she had my feet.

[EOLHPC in reply to julie1234]

Oh boy: she is a doozy!  Please come see us each time she offers you comments like that one: we're dedicated to providing the right 'meds' to help each other survive afflictions like those sort of comments!  I had something similar from an old friend last night (and I hadn't even complained about my condition).  These burning sensations are dreadful...the last thing we need is people who want us to, in effect, try denying the pain.  What we do need is acknowledgement, solidarity & good tips.  Take care Julie.  I'm glad you're here 🍀🍀🍀🍀 coco