I believe, from the symptoms which I have been reading on this thread, that I too am suffering from peripheral neuropathy in my feet and now it’s spreading up my calves. It is like the pins and needles you get when you have been kneeling down and then release your legs - except mine is constant, 24/7, and there is also the sensation of burning soles and stabbing sensations, together with the feeling that my feet are about to explode , or that I’m stood in boiling water. I recently had a nerve conduction test at the hospital and , surprise surprise, the results came back ‘normal’ .....how is having to put up with this ever normal?.??
I have had this now for about 15 years, but it is slowly getting much worse.
My question is- does anybody know what causes it, and is there anything which will alleviate , if not cure, it?
Hopefully waiting for replies
Thank you
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woodies00
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He.lo, When I read your post it took me back 2 years when I started getting all the symptoms you describe. I was so worried as I didn't know what was happening to me. Sometimes the pain would be almost unbearable. I thought it may be something called restless legs so made an appointment to see a doctor. It happened to be a new doctor who arranged blood tests and other tests and I was given a course of iron and told I was pre diabetic.and had kidney disease. All apparently connected to the dreadful symptoms I was having.I went on line to do some research to try and help myself and joined the Restless Leg forum on HealthUnlocked. After explaining my problem I was fortunate to have a fantastic man who replied. He goes under the name of Manerva. Apart from other, excellent information, he mentioned that some medication, particularly anti depressants can also cause these symptoms. I checked on line and found I was taking Citalopram, one of anti depressants on the list. I gradually came of these tablets over some months and am delighted to say all the symptoms have disappeared. I am now 6 months without any symptoms.
I would suggest you join the Restless less forum and mention Manervas name. He is fantastic and has such knowledge of neurological problems being a sufferer himself. I would also look at your medication and see if any you take could cause the symptoms. Our GPs have limited knowledge and as a result we have to be pro active in our own interests.
Thank you so much for your reply and helpful words. I took Citalopram for several years following a work related stress period in my life, so am now wondering whether these symptoms have been caused by that, even though I have not taken any for at least 10 years. My gp told me many years ago, probably prior to that, that I have moderate CKD.I have recently had blood tests to rule out diabetes. Do you know if there is anything I should be asking my gp to look for please?
Replying just to let you know that you are not alone with this rather than having any new helpful avenues for you, sorry!
My peripheral neuropathy symptoms are very similar to yours but they have seemed to wax and wane over the (10) years. The latest manifestation is numb toes particularly at night. If it’s bad I have great trouble getting off to sleep. At one point I had to sleep with my feet on an ice pack to help me get off to sleep. Having seen a neurologist he recommended Clonazepam (0.25 mg) for when it’s bad to help me sleep. GP has been slow to prescribe and anyway I feel reluctant to take it because I suspect it’s highly addictive and I don’t need that as an additional problem.
I don’t take any medication that I can link it to. I did wonder about seeing a Chiropractor in case I have a trapped nerve but I think that’s probably wishful thinking on my part. I have started taking magnesium as a supplement but no real difference as yet.
My simplistic understanding is that peripheral neuropathy is caused by the fine nerve endings dying off and that they can’t then be regenerated so it’s all about management. If I have got this wrong, please can anyone out there let me know!
Best of luck to you in your search for a solution. I hope you light upon something that helps you.
Hi and thank you for taking the trouble to reply. I re entry contacted a chiropractor as they had an advert for a machine which could help repair damaged nerves. However on replying they were dismissive of it being helpful for PN, and said it was used for nerve repair when the nerves had actually been severed or damaged in an accident, so that drew a blank. But what is it which is causing our fine nerve endings to die off I wonder? It’s a shame there is not more research done on this condition which must affect millions of sufferers.
Yes, it’s a good question. I’m surprised the chiropractor wasn’t willing to give you a try with the machine, but at least they didn’t just take your money I guess!I will let you know if I come across anything that might be helpful.
I can only tell you again, please contact the man I told you about called , Manerva. You have no idea how knowledgeable he is and how many people he has helped. Believe me he will be able to answer your questions thoroughly and advise you. He is well known for his help on the Restless Legs Syndrome site. Give it a try, he will respond, he always does.Please let me know if you do so, I have asked before to help people like yourself.
I have the same. Mine has been diagnosed as erythromelalgia which is secondary to peripheral neuropathy. Caused by cisplatin/carboplatin chemo. Is fairly rare and can have many other causes including genetics. My Nerve conduction was normal but I have abnormal sensitivity to temperature. (small fibre dysfunction) Suggest appt with professor Bennett at John Radcliffe oxford.
Thank you for the reply. Yes it could well be genetic as my mum (93yrs old) has had restless legs diagnosed for a number of years. Hers differs to mine in that she is unable to keep her feet still, whereas I can (at the moment) She was prescribed roprimarole but reckons she no longer has it prescribed, I must ask my sister if this is true. My sister is 3 years my junior and has no symptoms, but she does have painful rheumatoid arthritis .
If it is EM yes its all about management. There are plenty of drugs including gabapentine pregabalin amytriptyline etc etc but its trial & error as to which might help. Professor Bennett says exercise good but often causes flare (swimming good) . I'll see if I can post link to online help.
Thank you. Since COVID I have been for long walks nearly every day, but it doesn’t seem to make any difference, better or worse. I am rubbish at swimming 🤣
If you are going for walks and have no burning/swelling in your feet then it might not be EM. Might be worth having a look at this site to see if your symptoms match
woodies00 hi,I used to belong to a good PN group on Facebook, I remember a lot of people having the nerve conduction study and it coming back “normal”,but what it didn’t check for was small fibre PN apparently.I haven’t had another NCS for a long time, but my diagnosis was the long fibre PN,so I woud look into the possibility of small fibre PN if I was you,sorry I never understood what it means,I have disabilities that affect my thinking including classic autism and mild intellectual disability.
I hope you find a solution,I recommend looking into capsaicin cream,it works as a respite for me and some other people but not for everyone,best wishes.
Thank you for your reply. I have read recommendations for capsaicin cream in previous comments, so think it might definately give it a try. Do you get it from Amazon?
Hi Woodies00 you can get capsicum cream on amazon which is the other ingredient in milder chillis like bell peppers (if I remember correctly) , I’ve bought several creams off Amazon claiming to be capsaicin and upon arriving the ingredients showed capsicum.
There is one I had very good experience with before the NHS started prescribing me the highest level of capsaicin cream, it is called feathergills hotspur (AKA fiery jack).
Fiery Jack is a very old cream (I think made around world war 2) remade as ‘feathergills Hotspur’ to meet the safety standards of today, it is capsicum, not capsaicin but this one can still get very hot depending on the person ,it’s only downside is it’s a very waxy texture and doesn’t melt in like prescribed capsaicin cream does.
I think you'll find that there is a shortage of capsaicin gels in the UK. It isn't available for some reason. I get another one prescribed by my doctor called Porphaine. It is good.If you go on line and tap in... Is capsaicin available in UK? It will give you some information.
Hi RoadRunner44 there was a long shortage of capsaicin in the UK (I’m in Manchester,don’t know if it is a “postcode lottery”?). I was told by a GP and several pharmacists the shortage was due to brexit,ie making sure there was going to be some available after dropping out of the EU,which doesn’t make sense to me as by doing that it also caused a shortage?I started getting it earlier this year I think,possibly March, after my neurologist asked the doctor again to prescribe the strongest level of capsaicin (Axsain),and the GP who responded thankfully knew a lot about the situation around this remedy/drug.
I woud recommend to you both-looking into making your own capsaicin rub,as I used to do it with my support staff it’s very easy-I woud give a basic walkthrough but I don’t know if this sort of thing is allowed to be posted?
Hi, thanks for your reply. Yes, neither of the creams have been available for over a year that I know of. My doctor orescribes Porphaine which is not as good but does help.I'd be interested in your suggestion of making my own.
Since I stopped taking Citalopram anti depressants, my neuropathy symptoms disappeared. Medication is wonderful but it has its side effects.
No problem! I hope you get access to it soon, one of my support staff has just looked at the leaflet inside the box says it’s manufactured in Runcorn (NW, very close to Manchester) so I wonder if this is why I get it and you don’t? It’s extremely unfair if it comes down to a postcode lottery.
I’ll write a guide,but with a disclaimer-it’s my own experiences only and you can take from it what you will.
I first found the concept of making your own capsaicin cream on google using the term ‘chilli DIY rub’.
I got Jalepenos-ASDA often sell them,I woudnt go stronger than that.
I bought a bag of jalapeño chillis, and from the pound store next door bought a pack of six small air tight tuppaware pots,I also bought ASDAs cheapest skin moisturiser which is less than £2 for quite a big bottle but spreads further than cocoa butter moisturiser (plus it is a lot cheaper).
I filled moisturiser into one of the pots/tubs, and used about 12 seeds from the chilli, I gave it four hours before adding 5 more seeds, then 5 more which didn’t do much good for me and then eventually....one of my support staff said, cut out the pith (apparently the name for the white flesh) as it is the most potent for capsicum and capsaicin- so I did.
Using one chilli chopped some of the inner red bits and the white bits into the tiniest pieces possible and mixed it hard for a good ten minutes into the moisturiser,it meant slowly adding more over time to get the right amount for me.
if it means sitting there looking silly with bits of chilli stuck on my limbs and feet to get relief I will do it again and again.
I left the mix for about an hour to soak into the moisturiser with the lid closed tight to stop any degrading,and then started using it in a small PN area first to make sure it wasn’t to hot to tolerate.
over the first half an hour it started building and building....wow is all I can say-once you get the riht amount for you it can be a great respite and relief.
This is for you to, orange33 happy new year to you both.🥂🙂
Did you get it from a chemist using your prescription? There's a shortage of it in UK so Im interested to know if its available again. Thanks for posting.
There have been problems. I think the local CCG has added capsaicin to the list of items that should not be prescribed. Recently my local pharmacist had some and my doctor gave me a prescription.
Yes there's many ways to describe PN,and it comes in different guises, and the pains varies from day to day,I'm nearly into my ninth year of this horrible condition, and unfortunately mine was brought on by drinking alcohol, please don't judge me as I witnessed two terrible events, and it left me with long term PTSD, but I no longer drink,sober for nearly 9years, but also diabetic patients, and chemotherapy can cause this problem, I take medications at night time, called mirtrazapine, which helps with the sleep a bit and also use ralvo patches which i use on my calf muscles, and I take pregabalin during the day,but I have also ended up with B12 deficiency problems, and I need injections every 3 months, and this also compounds the same sort of symptoms,sometimes people who also have had stomach problems have had issues with PN, and I always had a dodgy stomach since a young man, and I fall into this bracket as well, so no escape for me! Hopefully this bit of information will give you a bit more insight of your condition, any further questions, don't hesitate to ask ,best of luck,thanks.
I would like to reply with regard to Alcoholism. I was a heavy drinker and was slowly getting worse. Then came an accident to my feet and very quickly I developed PN. It was complicated 6 mths later when my now non feeling feet stepped on a piece of glass with an effect as to mimic an animal trap wound. Through all this emerged a full blown Alcoholic with a Percocet and Bromazipam problem (Junkie)
I went to a seminar to consider a drug the (Ontario Mental Health Ministry) were introducing that would double the time between Cravings to drink. They taught us the following.
* Alcoholism is a Biological problem, not a character flaw, don't ever be ashamed.
*We addicts tend to have up to double the Receptors in our brains (read all of us) that processes Alcohol and also handles Heroin and Dark Chocolate.
*this turns up the volume of the messaging so that Alcoholics get an enhanced high (a 6th gear) that normal people don't experience. I suppose its the same for addicts to Heroin and Chocolate.
*as a point of interest the drug was called Naltrexone, 50 mg. This was 5 yrs ago so I'm sure some of you have already been exposed to it.
PS: My leg is still in a cast and am finally due for surgery 4 yrs later to fix, that is another story and not my or completely our medical systems fault
A potent BCD or deriverative like a POT grown for Pain Control (is quite effective, also works on cramps, muscle spasms and is a sleep aid). Coupled with a high THC content Sativa or similar strain, you'll really sleep well. The second promotes classical strengths like getting you high in a manageable way. If you don't smoke try edibles. These can also get you through your day with no pharma drugs. Also for sleep, try Melatonin from a health food store.
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