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!

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  • Posted

    I have experienced something sounding very similar to what you have described- you will be disappointed to know that I have not found a diagnosis or relief yet!

    I was also told I had RLS, until I went to a nuerologist who confirmed that my pain was much too severe, and the symptoms inconsistent with RLS. He prescribed me Lyrica, which is a neuropathic painkiler but unfortunately this didnt work for me.

    The way you describe the pain is exactly the same as mine. I don't think it's RLS, as RLS sufferers only generally suffer at night. Let me know if you find some relief, and I will do the same.

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    • Posted

      RLS isn't just at night with me its all day as well!! I now take 1mg ripinirole thru the day as late as poss then take 3 mg as late as poss at night!

      its not pain and not in both legs at same time! Like creeping through my legs or electric running through but after an hour of taking meds it turns to pain which I can stand better than that feeling you have to keep walking or pacing!oh it's a nightmare 

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    • Posted

      Thanks for the info about pain meds. Reading all these stories is spot on to what I started experiencing about 6 weeks ago. I am 60 years old and have always stayed in pretty decent shape, however now I find that exercise basically makes it worse. The constant pain and tingling makes my emotions up and down, very depressing. I have noticed that it's hard to describe what your going through with someone who hasn't been there. I've even been told that it's probably just stress, wow. It's amazing with all the modern technology that there isn't a simple fix for this horrific nightmare. It does give me some relief to hear other victims stories and read their ideas of what helps relieves some of their pain. Thank you
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    • Posted

      I have been struggling with similar symptoms, both physical and psychological, for quite some time. FINALLY, my doctor, backed up by a neurologist, put me on DULOXATINE - an anti-depressant which can also be used to relieve nerve pain. I've been on it for about 3 weeks how and I can definately feel a big difference. It relieves my pain and keeps my emotions in check. I also take Gabapentine for the pain and that helps, as well. I hope this helps. *** The drug names I used my be American drug names (I'm an Irishman living in Seattle). I'm sure Google could give you the U.K. or Irish eqivalent.  Cheers

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    • Posted

      Kenny, such relief to find I'm not crazy..I do not have diabetes, I was passenger in car accident..almost lost left leg, the clamp (acetabulem) was smashed as was my back and head...9 hours surgery saved my leg but they warned me about symptoms down the road...almost exactly 4 years later I am in a shower and feel some tingling in ball of foot..long story short, 11 years later I am 62, my legs feel like an electric prod is inside them, feels like I have an illness and legs are attacking me,sometimes if I sit and do nothing it lessens, but also sitting will bring it on even worse, constant horrible pain, in my leg bones,started in ankles now up to almost my waist, cannot even walk around house sometimes,I used to be a drummer and soccer player..also seperatley, my feet feel like bricks, they burn, my legs swell up as pumps don't push blood up well anymore, lymph also, so I wake up put feet on ground and instant severe depression, years ago they gave me lyrica, I am like you I take prescribed pain meds low dose, certainly don't get high..and yes the horrid sensation is truly indescribable, and also I found I have Deep Vein thrombosis, so far a couple of blood clots that went away but very scary, and the depression is really getting to me after so many years, lucky Im not suicidal, but no longer desire sex or exercise, seen some of best doctors on Earth, the only ones that can help are holistic doctors who charge 1,000 a visit, I live on small disability/pensioner, can't afford those guys and they have no compassion, regular doctors tell me spondoliosis, smaller hole where nerves come out of, basically that its' nerve damage I'm not sure that's all it is, could be MS, like you I have some relief from seeing a website that addresses this, but no GP or specialist has a clue how to help, desperation setting in...could use a friend in this fight, ...my heart to all of you, no one should suffer like this...Glen..

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    • Posted

      I am sorry that you are going through this, you may want to ask your doctor to be tested or get an MRI so you can check for MS. I am saying so because I have MS 
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    • Posted

      I have  taken 2x tramadol 50s and  2 tylenol extra strength  and if I take this this 3x a day  with food   you can bear this..... have faith..

       

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    • Posted

      Glen

      I don't Know if you will read this because this post is old so before I Say all that I WANT to say I hope that you can message me LETTING me know you are reading this. My heart truly feels your pain and I can relate a great deal . Please message me. Please

      Maria

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    • Posted

      Hi

      I have seen your post.and winder if i csn ask you something?

      I have been having weird burning stinging sensations at first in my right leg now in both

      For a few months

      As im a hypochondria i left it ages

      Hoping it would go on it own as pain often does.

      However mine has worsened

      And as i have knee pain

      And some slight swelling behind my right knee andsround the front

      The swelling at the back had for yesrs thin its a bakers cyst

      But i wss worried when i noticed slight swelling in front of knee though it isnt painful.

      But i havr a tender spot over left knee

      And arthritis txpe pain in both knees

      So doc sent me for an mri last week

      Waiting fir results

      Im worried about what it is

      Or isnt

      As i realize i kay need to go back for more tests

      If this one proves inconclusive?

      My legs are burning now as i lie in bed writing this

      And at night it keeps meawake sometimesall night

      I looked at ms on google

      And read it can come on after a bereavement or such like?

      I lost my daughter and have hsd si much stress of late.i dont kniw how im here to be honest

      But i told my gp i thought it coukd be ms

      She said my limbs would be weak if it were ms

      So didnt sayanymore about it

      I did have a brain mri last year when i had a massive vertigo attack

      And Still. Have themnnow

      Scan showed nothing

      But i didnt have these leg feelings then

      I have so many pains come and go throughout my body too

      I dont want to push for more mris as it exacerbates my anxiety

      But im verydepresed now

      I wonder can you advise me.plesse

      What are youre symptoms and how did you find out

      Thankyou for your time

      Love

      Elizabeth

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    • Posted

      Hi Elizabeth, you are sure in a hurting place, physical pain and heart pain With the loss of your daughter. I am so very sorry that you are having to deal with these issues. I think you are demonstrating great courage and resolve in reaching out for help. I once had vertigo so badly and it turned out to be an inner ear issue, which is quite common. If you are feeling pain Elizabeth, than you are feeling it and thatmakes it real. It is no wonder that you experiencing anxiety, you are dealing with very stressful matters. I wish I knew how to better advise you, I don't. I am ,however, sending you big hugs and my sincere condolences for the loss of your daughter. All that you are dealing with takes time, persistence and also acceptance.  And it is depressing in so many ways. I will be thinking of you and I want you to know that I admire your courage. My very best wishes are with you Elizabeth.

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    • Posted

      Just wanted to get this out there even though it's not a direct reply to your post.  I was experiencing leg cramps and sever tingling in my feet.  This ocurred mostly at night but I would have some pain during the day.  An examination of my blood showed that I was anemic, my HCT count was very low but the blood test indicated that my iron level was high.  The DR didn't have a direct explanation but had me try a couple of meds.  

      I began to research the situation on the internet and found several good articles on the benefits of vitamin B12.  I had stopped eating any red meats sometime ago because of the things I had read about the benefits of not eating red meat.  I also was taking large amounts of antiacids because I had chronic indigestion.  

      Well, to  make a long story short I have started taking vitamin B12 twice a day even though all test had indicated that my B12 level was within normal range.  Since I have been taking B12 my energy level has increased exponentialy and I don't get out of breath with minimal exercise.  

      I'm not a 'vitamin for every ailment type of guy" but so far I have to say that B12 seems to working for me. 

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    • Posted

      Oh, I lost my train of thoughty, I didn't giv the rest of the story.  I have not had the leg cramps for over two weeks now and the chronic indigestion has gone away.  I have an appointment next week to check the HCT level.  I'm interested to see if I see improvement.

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    • Posted

      Thankyou so much for youre kind words

      I am gking through much more too

      Relationship problems

      Csnt be honest with partner

      As hes very suicidal and alcoholic

      I care for my adult son.who hss mental

      Problems

      And i have many problems with my health

      I also have a15 year old who is seing a cshms counsellor

      Shesstsrted smoking weed

      Im so worried

      By loads

      It never ends

      Please would you. Pray for me

      Thankyou.elizabeth

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    • Posted

      I too have crazy calf and muscle tingling and burning. It has ruined my life. No longer can tolerate any tie of exercise. Its like a thousand bees are constantly inside my cakes. They twitch and jump an day and night.
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    • Posted

      I am doing the exact treatment plan. They are also going to rule out periodic paralysis. I have EDS and POTS. The pain is severe I cry myself to sleep.
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    • Posted

      Hi Elizabeth!!! I'm also are having the same symtoms ad you are. It's awful. Mine just started a week ago. I'm so sorry to hear about your daughter. I lost my son 3 years ago. Grief and pain is a horrible cocktail. I was wandering if you have found out what is causeing it or if you found something that has helped you. I hope you get this. I hope you are doing better. Please let me know.

      Thank you

      Love Dodie

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    • Posted

      Hi Michael, your describing better than I could virtually the exact symptoms I've been diagnosed with( peripheral neuopathy) for a few years now. Two days ago I visited a distant sister for the night but forgot to bring my medication with me  I have your neuropathy pain a great deal of the time and I am sometimes demented by the burning pain and ultra-heightened screaming sensation, affected have the feet and calves along with  hands and calves virtually all the time but it on occasion it spreads fom feet on  into groin, testicles and further up to waist from the hands to the upper back and shoulders. Life is sometimes impossible relief and comfort unattainable. I suffer constantly from the kettle element feet while elasticated clothing like pants, socks, trousers are unsufferable and often end up scissorred eventually ruined. Use of footwear really elevates problem and is avoided as much as possible. I often find difficulty with rest and sleep due to symptom intensity. I am at  present on 200mg Pregabalin morning and evening and obtain some relief, most of the time. For myself I find groin and testicles pain particularly disturbing and completely unbearable. My doctor has been simply excellent and understanding. We have gone through a number of medications of various doses and frequency till the present pregabalins which is provides reduced sensation most of the time.  A short term experiment with lorazepam which I have to say was effective for even the groin but in my case made normal day and bedtime-life very difficult due to the unwanted side effect of over sedation required for neuropathy relief in that area, so it is not my recommendation.  Sleep is generally only obtainable lying face down in recovery position.    

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    • Posted

      Hi Maria

      Happen to stumble on to this post looking for solutions to similar problem ben had/has.

      Mine started after taking two drugs in one night

      Please what is the solution?

      Thanks

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    • Posted

      Hi Maria my name is Jodee and I am experiencing allot of the same things. My legs have been cramping and burning for 6 months .I'm about to loose my mind the pain is unbearable and is worse after I lay down and get up in the mornings . I'm on some pain meds but it's not helping at all. The longer this goes on the more depressed I get I have tried vitamin d and magnesium it seems to help.a little . If you have any suggestions it would be so appreciated. Thank you.

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    • Posted

      HI Michael, sorry to hear about your pain. I’m the same as you but not for as long. I had a massive bleed inside my leg that ruptured my calf muscle and cause swelling and a massive haematoma. Since then I have numbness from half way down my thigh to the middle of my foot. Having ruled out compartment syndrome the consultant wasn’t interested. That was six months ago and I’m much worse and now have this tingling/crawling thing in both legs. On the 19th Dec I’m having a MRI on my spine!! Still refusing to do one on my leg!! I’m on Thyroxine, amatriptyline, Gabapentin and codine sulfate. None of which are doing much. Be strong, as you can see by this group that you are not suffering alone. I will update you on my results. Regards Patricia 
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    • Posted

      I'm going to try CBDs because they say they help with nerve pain I fell in a box of hangers and that may be the culprit that started the problem the doctor thinks maybe I bruised the nerve

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    • Posted

      I took my first Lyrica pill last night and it has made me so drowsy this morning. Did it make you drowsy?

      I tried Gabbapentin first, and that made me feel vertigo-like. I couldn't take it anymore after a trial of two weeks, it never got better. But sometimes it works for people who the Lyrica didn't work for. It's worth a try.

      Sadly I think last night I had less pain, but I can't go around feeling this tired.  You might talk to your DR about the Gabba. Good luck

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    • Posted

      I’ve tried Gabapentin at a low dose and had side effects that were barely tolerable. I’m very sensitive to all medications. I think my lower legs have lost muscle mass in addition to the awful tingling, burning and pain. I’m going to see a neurologist as soon as possible. 
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    • Posted

      Hi ok ive not lost any tone but the anxiety its causing is a shocker my heart flutters i feel edgy i hate it i see neurologist on 9th
      Report Reply
    • Posted

      I hear your pain ! Please keep your appt. with the Neurologist ! Call his office and put your name on the cancellation list ! You just might get in quicker !? Keep us updated on what your Neurologist has to say about your condition ! Take care !

       

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    • Posted

      Thanks Donald .appreciate the support that we all give eachother .i hope you do ok as well.il let you know how it goes.i started on vit D today .heard it may help
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    • Posted

      Hi, the heart flutters can be caused by thyroid imbalance. Might want to ask dr to do a test on your thyroid numbers. Best of luck, all of this so very difficult. My best wishes are with you. 🌹

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    • Posted

      Thanks for your support and response. I’ve had all blood and other tests done including thyroid. All are good. I’m baffled but continue to look for answers. 
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    • Posted

      I do know what your're going through and it's a tuff way to live but we all have to stick together and give each other support !!

      I was wondering if you've seen a Neurologist about your condition and if you have did he give an EMG test ?

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    • Posted

      Hi Donald and thank you for responding. my back has been hurting and not the doctor and I believe the pain is coming from my back so she is sending mefor an MRI. so I'll keep in touch with you for the results.

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    • Posted

      Hi i suffer from flutters too .you need to be on magnesium i take 2 a day .it takescweeks to build up in your system so dont expect a change to quickly i also cannot have alcohol it triggers my rythm
      Report Reply
    • Posted

      I know what you mean by feeling depressed, it's a awful pain to live with , some doctors put it down to stress that just rubbish no one can understand what it's like if they have never suffered it, I feel years of this pain has made me a different person than i should have been, am sure other people will feel the same

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