Severe tingling, burning + pain in both legs
Posted , 205 users are following.
Hi 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
april23901 moimystique
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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.
Lindieloo april23901
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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
fred70884 april23901
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kenny_02267 fred70884
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MaidMarion1234 kenny_02267
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oconaith kenny_02267
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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
michael19785 kenny_02267
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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..
Sxy_Colina_Lady michael19785
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jodie39832 michael19785
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liz61359 michael19785
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People like us, with chronic pain, don't get "high" off of pain meds because they are doing their job!
brian75287 april23901
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maria52244 michael19785
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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
jane75220 maria52244
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Thanks
elizabeth48847 Sxy_Colina_Lady
Posted
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
Peonygirl1 elizabeth48847
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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.
Snider9727 Peonygirl1
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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.
Snider9727
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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.
elizabeth48847 Peonygirl1
Posted
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
Susan9824 april23901
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Susan9824 kenny_02267
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Susan9824 maria52244
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Peonygirl1 Snider9727
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Gloriahayley oconaith
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dodie125 elizabeth48847
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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
Sparkiefive michael19785
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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.
michaelcityboy maria52244
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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
jodee60412 maria52244
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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.
Tricha355 michael19785
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mary11654 jodee60412
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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
Kingsway3 jodee60412
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kristen81916 april23901
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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
Perky22 kristen81916
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shona53538 Perky22
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donald12062 shona53538
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shona53538 donald12062
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Peonygirl1 shona53538
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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. 🌹
Perky22 Peonygirl1
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donald12062 Perky22
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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 ?
juanita39938 donald12062
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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.
shona53538 Peonygirl1
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Perky22 donald12062
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shona53538 Perky22
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Bcm2014 kenny_02267
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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