Severe tingling, burning + pain in both legs

Greetings from Virginia. Now, I don't feel so alone with these crazy symptoms. I'm a Campbell by birth, and we don't just "take it." I'll keep searching till I find the answer. About two months ago, I started having weird burning neuropathy down my legs. Usually one or the other. Both my regular and holistic MD's feel it is musculoskeletal in origin. They have recommended soft tissue work like massage therapy, yoga and the like. My chiropractor told me he has seen these symptoms over and over in women in my age group. I'll be 54 next month. I am in menopause, so estrogen is falling. I have since learned that estrogen protects the pain neurotransmitters. When it falls, we REALLY start to feel the wear and tear on our bodies. Not sure if this is also true for Andropause, but it might be helpful to look into, and possibly explore bio identical HRT. Obviously, our pain state is indicative of an inflammatory process, so removing inflammatory foods from the diet. I have found that icing my lower back is helpful. And while I don't understand quite why, Diazepam (anti-anxiety) is helpful. I'll share more as I find what works and doesn't for me. All the best to you.

Hi sharen,

Greetings from Wales, UK..

Thank you for your reply.. I'm sorry you are suffering this terrible condition.. there is some comfort to be had that I'm not on my own and you're not either..

I'm currently 32 years old and have suffered since I was 23 with the disease.. I'm not near my menopausal age yet.. I have been told that I produce a high amount of oestrogen hence having other conditions.. inclusive of skin conditions?

So not sure this is a factor for me?

I really do hope we find the answer / cure in my lifetime however I have been told that we are decades away from that technology

I'm plodding on without any meds at the moment.. I would love diazepam but my doctor won't give them to me.. and I'm very doubtful they will give me morphine either.. I would love it however I think this will affect my everyday life /job..

To be honest I have given up hope that I will ever get better..

Could I ask what are inflammatory foods please? As I think I may try to avoid these to see if it helps the condition..

Any help or advice will always be appreciated.. I sometimes put my legs in a cold bath or use freeze spray? Which only relieves them for a very short while...

Good luck with the future and best wishes xx

Hi - sorry you too are suffering from burning and tingling. It is amazing how many people do judging by this thread. Mine is constant just now but I'm more aware of it at night. I feel as though I've plunged by legs and arms into scalding water and can't get out. Or else I'm severely sunburnt on my peripheries.

Does this ring any bells for you? And do you also get reddening of your skin that is hot to the touch and swelling?

I don't personally get the reddening of my skin but if you do - or anyone else here does then it might be worth looking at the very rare disease called Erythromelalgia. This used to be called Mitchell's Disease and is now known as EM - causing a burning debilitating burning sensation in the extremities, sometimes affecting other parts. It is closely linked with small fiber neuropathy (SFN) and can be primary or secondary to other autoimmune diseases such as Lupus and Rheumatoid Arthritis.

It is very under recognised by most doctors and if you think you might have this condition you should try to find a doctor who either recognises it or is prepared to learn about it. There is an association called The Erythromelalgia Association with more information. There is no conclusive test and the treatments are often about cooling down the body, reducing inflamation and keeping the body from overheating. Most of the drug therapies are pretty similar to those for SFN ie anticonvulsants and antidepressants but sometimes Asprin can work I'm told.

I hope this helps some of you perhaps.

Rather than list all inflammatory foods, it might be easier to google them and then print the list out and keep on your refrigerator.  White sugar, red meat, processed foods are inflammatory, but there are a host of them.  Some people find it helpful to keep a food diary to see correlation between what they eat and symptomology.  If you are having an overabundance of estrogen (estrogen dominance), you may not have enough progesterone.  Might be worth looking into having that tested.  Sometimes my symptoms are like an almost electrical, tickling, weak sensation in my left arm and in one or both legs.  Sometimes it's burning pain.  Makes no sense.  If I get upset, which I am now, it makes it worse.  Caffeine makes it worse.  I have the flu, that probably doesn't help.  And my brother is within 24-72 hours of death; hence the added stress.   It will be good to get some perspective once I've gotten through this phase of my life.  Much is intertwined.  All I know that for whatever reason, my nervous system is a bit hyperative right now.  Be well.  Talk soon.  

No wonder you are stressed Sharen - this must be terrible.

I can relate to the hyperactive nervous system although mine isn't due to external stress - it's the pain that stresses me out which in turn impacts on the rest off my life.

It is very complex when hormones are kicking around. I'm 52 and a few years post menopausal. I had a very uneventful menopause apart from developing RA and this burning simultaneously - although the burning started before the RA symptoms actually - in my wrists and elbows. I feel that for me it is all inflammation of my cinnective tissue in my case but I also am hypothyroid/ Hashimoto's.

I keep to a gluten free, caffeine free diet and avoid refined foods - exercise religiously. Apart from having a confirmed disgnosis of RA I can't find any reasons for this awful bilateral nerve pain I have 24/7.

Take care.

My brother has been sick a long time, but even so, it is hard to believe he's really going.   I have some pretty wicked hot flashes sometimes and night sweats.  My chiro believes my symptoms are descriptive of fibromyalgia, like many he's treated,  I also have treated hypothyroidism/Hashimoto's.  Just recently started a gluten free diet and avoid refined foods.  Haven't had even green tea in days, but that's probably more due to the flu than anything else.  I do some light yoga/stretching now until the flu abates.  You too.

It must be very hard to cope with waiting for someone you love to die. The loved ones I've lost have all died suddenly and prematurely so ive had a different cross to bear.

I won't accept the suggestion of Fibro if my rheumatologist tries to make it - it just isn't me. I don't have the muscle pain, tender points, headaches or IBS and my sed rate/ ESR is always high when I feel rubbish and this doesn't happen with Fibro. I think once you have one autoimmune disease such as Hashimoto's you are liable to land others and feel certain that the burning is this for me - although it's

also closely linked to hormones too I'm certain.

Best of luck getting through this most difficult time.

Thank you.  Since we last talked, I have gone to a musculoskeletal specialist.  He detected spasm in my piriformis muscles, which would account for many of the symptoms in my legs.  He gave me exercises to do which have helped some.  I have also had a longstanding issue with my neck, which he has also helped me with.  It occurred to me that because my symptoms do involve an overactive nervous system, that acupuncture may help, and my chiro agrees.  So I will give that a go, along with seeing where my estrogen is to see if HRT would be helpful too.  Take care.

You have had this since you was 23 ? Now your 32 my god how awful have you found anything too ease the pain ? Do you know what's wrong as I have the same thing all came from lower back pain

Sharen, I too an 54~~!  I tore a tendon in my rt. ankle a few months back...had to quit taking my daily walks, gained another 20 pounds...I just got done with physical therapy for my ankle. Then all of a sudden,,,PAIN PAIN PAIN at night in my big toe. Next day, go to doctors, they say I have GOUT. It lasts for about 10 days,,,,but ever SINCE my bout of gout, I still havewhat feels like needles sometimes and or pain in my toe joints. AND ever since I was about a week into the gout, I have started having BURNING on or in both calves. This has gone off and on for about 2 weeks now...NOW TODAY, I got the same burning sensation in my arms, more so in my rt. arm. I am also pre-diabetic and have been on metformin for about a week now. SO....is there ANYONE OUT there who has experienced what I have!?!

Hi Sharon,

I'd love to hear what you find out. I'm 38 and just had my second child 9 months ago. I woke up from the surgery with heavy legs and tingling started in my legs about 10 days after. Now I have pain down both legs. Usually worse at night. Any thoughts would be greatly appreciated.

Hi Sharen, I know this was a while ago, but I wonder whether I have piriformis issues. Can you tell me what your symptoms were and what you did about it, if things have got a lot better? Thank you!

try looking up Dysesthetic Burning it gives a better description for your sysmptoms

 

hi,

if your neurologist said there is nothing available to see the fine nerves he is an idiot and you should get a second opinion. I am amazed how many neurologist simply cannot dx over half of the neurological problems currently in existance.

I have primary progressive multiple sclerosis and had it for over 17 years now. I take a varying cocktail of drugs such as Gabapentin 1200mg 3 times a day, duloxitine, amatriptiline, pregabalin, Tramadol etc and will continue to do so until I die so I would not worry about 1 type of medicince as long as it helps. I practically rattle  when I walk since I also have to take B12, D3  and omega 3 every day too.

Steven do you mind me asking if you are over 65. As I take 900mg of Gabapentin per day, but on the instructions it says 900 is the maximum for A 65?yr old. I wish I could take more. I have been told I have prephial neuropathy and it is incurable 

I am 48 and take 800 mg 4 x a day for nurapathy

yes I am 68 and I am told the max is 3600 per day taken as 1200 x 3 per day. Anything less would leave me in extreme pain

Hi I would recommend you try Bowen therapy as I found it very effective with my MS pain. Be very careful with the Diazapam as it is not really an anti anxiety pill it is a muscle relaxant but is highly addictive.

Hello there I'm new to the site, I've been prescribed amatriptyline 10mg for a burning/numbing/ disabling pain in both my feet I've had lots of blood tests an X-ray plus recently a nerve conduction test, for a possible tarsal tunnel diagnosis, witch I am awaiting results, The pain is worse when I'm at work placing pressure on my feet!! It's almost disabling very scary!! I'm scared I won't be able to work anymore! And these tablets are not exactly making me feel great! I'm worried for my future, and not sure weather to carry on with the amitriptyline or not. Will it be a cure or just a pain reliever!!! So Will I end up on it forever, if no cure is found for my burning feet, would like to talk to someone who has same problems?! Thank you :-)

Hi Burnfeet

I have had this problem for years as I have MS and Amatriptyline is useless to help, it is mainly used for depression and you really need medication for deep nerve pain such as Gabapentin or Pregabalin. It is occasionally used as a pain relief but generally in conjuction with other medication. On its own forget it and go back to your GP

Good luck

Thank you Steven, I think the trouble was I'm an engineer, I don't know if operating machinery on gabapentin or pregabalin I possible, I don't know, I will look in to it thank you!! Yes I'm really debating if amatriptyline is the right ride to go down, it makes you feel very rough lol

Hi Steven

when you say in conjunction with other medicine which other one are you talking about. I Am on 900 mg Gabapentin a day. It has improved my situation, but not completely. Your comments would be appreciated 

I worked for 13 years on the medication working on Tornado bombers so I assure you its possible

i am currently on 1200 Gabapentin and 60mg Duloxitin 50mg Tramadol 30mg Lansoprazole and 4.5mg LDN

Hi There, I too feel something same with my legs and growing area. I'm working with one Neurologist for last 6 months, but still I’m in pain. I’m taking Gaba right now. It seems not Woking for me. My last choice will be some Aruvadic medicine. I will let you know if I get any help from that. Yes, I too feel that I might be paralyzed one day. Very worried about this pain. So I do understand how you feel. I am suffering for 8+ months now.

I used Truvia which said pure and natural with Stevia. I didn't even look at the back of the box. After two years of pain, IBS, muscle spasms and neuropathy I accidentally came across a side bar searching for cause of muscle spasms. There were literally thousands of people saying they either had IBS or muscle spasms pain in their neck etc. Etc. Etc.  They had all been using Truvia.  Then I found out Truvia is 99% Erythritol which is a man made sugar like the ones in diet drinks and foods. In fact often Erythritol is combined with other fake sugars in food and drinks!  Two days after stopping the Truvia, IBS and spasms were gone. You decide for yourself but I would be interested to see what happens if you cut out all fake sugars from your diet for a month. I miss my dit Pepsi too but haven't had it for 17 years. That Truvia just tricked me into thinking it was natural....

Wow! That is important information! Thank you for this post!!🌈

Hi, thank you for this information. Just this morning, as I was putting a quarter teaspoon of Xilitol in my coffee, I thought maybe I should not use this. A well known scientist in SA said the other day that fake sugars are worse than cocaine. I am definitely going to cut out all the artificial sweetners, even if I only use about 2 teaspoons at most per day. It is very disheartening to hear how everybody is stuggeling with the same symptoms while the doctors don't really know the answer.

A pharmasist gave me a tablet called Aleve, which helps me a lot, but I have to take it twice a day to have any effect - at least it allows me to sleep.

Maybe due to metformin as it causes peripheral neuropathy.

Hi mrsscrivs, you say you like your fizzy sugar free diet drinks. Well I have seen people in chronic pain give up these drinks that are loaded with aspartame and other artificial sugars and within days are rid of most of their pain. Aspartame causes untold nerve damage to a person's body. Pls google it

Hi....I suggest you buy a glucose monitor (about £25 from Lloyds chemists) and some testing strips and test your blood sugar several times a day.  I have cured my foot and leg pain by keeping my blood sugars below 7.5 (uk scales).  It is not difficult to do, when we have this terrible tormenting condition which stops us from enjoying anything in life.  Th 'fizzy drinks' will be raising your blood sugars massively.....the so called sugarfree ones are no better than the sugared ones...they just lull you into a false sense of security  Which is just that..---FALSE.  Try drinking warm water with just half a teaspoon of sugar (and sometimes a bit of salt too.  Which is just what is in the saline solutions they give you in hospitals to rehydrate you),.  You will find that it is a nice drink...(I call it my tealess tea..lol). Drinking cold water is not enjoyable...but warming it, by adding some hot water from the kettle, makes it easier to drink.  Try it. But stop the fizzy sodas of all description!  I know that will be difficult because these drinks are very addictive, and the caffeine in them raises your cortisol which then signals the liver to release MORE glucose into the bloodstream...so every time you drink a soda your blood sugar levels will go up a lot...even if you have eaten nothing!  If you get a meter you can test this and see for yourself.  

Hi Jess and thank you for your advice on the sodas. Personally I drink Coke Zero but not everyday because it helps me to control my appetite. I've been doing really good regarding my diabetes. I was diagnosed with prediabetes and I've been doing real good always keep that on 5.3 or 5.4 I don't let it go higher than that. I prepare my meals and fortunately I like to eat salads and vegetables I do eat a hamburger maybe every other week but it seems like it doesn't go higher than 5.5 when I eat a hamburger which is good. I also make shakes in the morning with vegetables and that helps me. I like to work out in this very important. I am going to be 66 years old in 2 months and I wear a size 8 and everybody tells me I look younger then my age but the key is to eat healthy and exercise. I love to dance and I try to go dancing once a week. I think of you live a happy life and exercise and live well you can control or even reverse diabetes.