Severe tingling, burning + pain in both legs

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H​i everyone,

I've been having severe tingling and pain in both my legs (toes, feet, calves and knees) for about seven months now. On running a few tests, I found six months ago that I was deficient in vitamins B12 and D, which was set right. The neurologist said my symptoms were due to the deficiency, however, the condition has steadily worsened in spite of the deficiency being rectified.

Here are the tests I've done:

Vitamin B12 and D: Levels stable for the last 4 months

Thyroid: Normal

Sodium, calcium, potassium: Normal

Iron: Normal

Bloodwork, ANA, dsDNA all normal.

Rheumatoid factor negative.

The pain is worse at night and while lying down. The docs have told me I've got Restless Leg Syndrome. I took Pregabalin for about a month and Ropinirole for ten days but both didn't help with the tingling - in fact the side effects were terrible.

I'm not on any medication as of now and the pain + tingling has worsened, now almost constant, like there's electricity shooting up my legs all the time. I'm unable to do anything physically exerting like climbing stairs. Walking makes my feet hurt terribly (which I believe is not the case in RLS?).

Does anyone have suggestions to confirm the diagnosis? Is there something I'm missing? I'm due for an LS MRI, but the docs have said it is most likely to come clear.

Thanks a ton!

17 likes, 568 replies

568 Replies

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  • Posted

    I have the same problems & found it's a problem with the veins.  Venious insufficiency and slight Peripherial Arttery disease.  I have found the best thing for the pain is exercise...  I use a weight machine that you sit on and push out with your legs.  This was found by an ultrasound. 

    • Posted

      Well for the pain i was enduring , exercise only made it worse. I have been active my whole life and in very good shape. This has been debilitating and misery with exercise not a option. Now that i have found a medication that works , i actually am almost back to normal. Glad it helps you and goodluck to you.
    • Posted

      Cindy

      If you have been tested using CCSVI (ultra sound of the jugulars) then exercise will not do anything as its the decrease of oxygen to the brain that causes lesions on the brain. You can get a stent inserted and the symptoms are normally gone straight away. Currently you have to get this done privately as they wont do it on the NHS unless it shows you are in danger of a stroke.

    • Posted

      not if the jugular arteries are blocked or twisted. Thats the point, no amount of exercise is going to force blood flow. Many people dx with MS have found they have this problem and a simple stent opens up the channel. It can only be found by CCSVI testing using ultra sound. Best thing is to google it and find out for yourself.
    • Posted

      sorry I meant to say that there is a clinic in scotland that do this and thats where I was tested.
  • Posted

    Hi all, i have had these stinging / burning leg pains in both legs for some years now which have been put down to aged back problems. i have found that Clonazepam 500 microgram tablets help. Another strange thing i have found is that whilst i have been recieving treatment with Cefalexin or Trimethoprim or Nitrofurantoin anti biotics for urin infections all of these medicines have helped tremendously with the leg pains but my doctor will not continue prescribing them when there is no further evidence of treatable infection. Maybe someone else can follow up this strange cure which could be of help to all of us with the assistance of a similarly curious and investigative doctor.
    • Posted

      Hi Katie

      I think they wont give you the tablets is because all they are treating is the infection of the bladder. The burning pain you feel is called Dysesthetic burning which you can google to get a better idea of a possible treatment. I have this pain constantly and it does not matter what pain tablets I am given it never gets rid of it fully but will dull it down a little. You really must put pressure on your GP to get a proper diagnosis as it seems they are fobbing you off somewhat. Without a proper dx you will never get the right treatment.

  • Posted

    I'm only 30 years old the same thing and I'm going through testing it's been a month-and-a-half that this happened I woke up one morning and it was there

    • Posted

      Hi there are you any further forward with the burning pain and what it is? I get it only at night do you too it's driving me mad x

  • Posted

    I have had constant neuropathy, horrible pain and burning in my legs, arms neck and shoulder since 1998. After a spinal reconstructive surgery that was delayed and caused the nerve damage, then a neck surgery to keep me walking but added to the pain, I've been a wreck. 

    Theyve tried the ncs on me four times and the pain was so excruciating they had stop.

    . I will never allow that again."

    i have so many diagnoses but bottom line is constants pain and burning.

     

  • Posted

    You didn't mention if you had symptoms in your hands and arms.

    I have peripherial neurapathy. It started as pain and tingling in my feet. Initially I was diagnosed with plantar facieitus. It made sense because I was a runner. My doctor prescribed orthotics which made my feet feel worse.

    You also didn't mention if you were a diabetic. Typically diabetics get PN. In my case since I'm a borderline diabetic it was 15 years before I was diagnosed with diabetes. Now they are not sure if diabetes caused my PN.

    I don't want to worry you but if your legs are numb you want to be careful around things that are hot. If you can't feel something hot you'll get burned before you realize it.

    There are any number of things that can cause the symptoms you've described. You've been seeing a neurologist so you're spot on with what your doing. They are the ones that should be able to figure this out.

    I hope you get to feeling better soon. I know what you're going through, pain is not fun. Just keep on your doctors don't give up until you have a answer.

    God bless.

  • Posted

    Could you have Allergic Contact Dermatitis- My electrical tazer like stinging, itching and burning started over a year ago at age 67. At that time it was random (it could be under my cheeks or in my legs or arms- or everywhere) and it was possible to ignore during the day when I was moving but at night became unbearable and I was contimplating suicide if i had to face living like this the rest of my life,  Also the lack of sleep was making me crazy.  It became progressively worse.  I had extensive neurological studies and learned nothing.  I turned out to have ACD (Allergic Contact Dermatitis). Although I had my first case of hand eczema at the age of 50, I was able to control that with topical steroid use when needed,  It never occured to me that I was only treating my symptoms and not stopping the cause of my outbreaks,  At that time I had no internal issues elsewhere. I did not have rashes where this stinging and burning and itching occured, it felt more like it was under the skin and hard for doctors to understand when I looked just fine.  With allergic Patch Testing, by an allergist, panels of 78 different chemicals or elements were placed on my back for 5 days.  I only reacted to  5, but that knowledge has changed my life. I was allergic to an element in rubber- so no rubber, latex, spandex, nylon, nitrile, neoprene, elastic, adhesives, any blended fiber well the list is endless,  I was allergic to preservatives which were in about 98% of all my grooming or cleaning products.  Allergic to hydrocortisone. The memory foam in my mattess is processed with this element of rubber MBT or  mercaptobenzthiazole. The MBT off gasses so just putting a cotton pad over the memory foam doesn't help, you can stop the transmition with vinyl which I am not allergic to, I decided to just get rid of it and get a traditional mattress, polyuethane foam is ok for me.  My carpet and carpet backing were the cause of my burning foot pads as well as the glue that bonded my all leather shoes together or other blended fiber shoes.  The point here is it took me over 6 months to clean out and control my contacts (yes it can be done) and with this contact elimination I did stop  the scalp itch, private area burnings, foot pad burning - yet still had tingling and burning to some extent at night,  I was given a Kenalog 40 shot Dec 2016 and had major improvement, basically stinging when laying or sitting down gone.  Only one shot is allowed a year.  Just 2 weeks ago started feeling some random stinging, and now when I lay down or sit the fierce itching in thigh and buttocks is returning.  I will see allergist Dec 1 and ask for another shot since it has been a year.  For some this shot is only needed one time and for others the relief just lasts briefly.  I jhope I can get another year out of this one and lead a normal life again. Before K shot took 2 Cetrizine Allergy tabs a day and still do, but can't say I notice a difference with that.  Good luck, maybe this will give you new ideas.

  • Posted

    I just started ( 2 weeks ago) on a nerve supplement with Alpha Lipoc Acid ( 400 mg) a well as other great ingredients call RevitalAge from Pure Encapsulation @Amazon. The shooting pains went away almost immediately. No help so far with the constant burniNG etc have had for 2 yrs.
    • Posted

      I would be interested to know if you have had any side effects from the Alpho lipoc acid. 
    • Posted

      I have been taking Alpha Lipoc Acid for years & love it.  I have also found taking 50mg of B5 has helped the burning pain in my legs, maybe it would help your shooting pains.

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