Severe tingling, burning + pain in both legs

Brain and nerves
1

​​

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!

2

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.

3

I too have still not been diagnosed but am finding some relief by drinking this concoction daily.Half a glass of milk, teaspoon tumeric, teaspoon bi-carbonate of soda, (baking powder) and 2 tablespoons "Replace", (Meal in a Can)

Hope it can also help you!

4

 I've had intractable peripheral neuropathy for 7 years now. When it first came up I went straight to a neurologist. The tests I remember were Venus doppler and a nerve conductivity test (small needles in calves to check electric pulses).

been on the lot...lyrics, gabapentin, fentanyl patches and each worked a bit. Now I'm on oxycodone MR and oxycontin IR.

if you haven't, I'd try to push for nerve conductivity.

 good luck.

5

I have been diagnosed with idiopathic peripheral neuropathy for over a year now - had symptoms for several years but it took paying privately to see a neurologist to get a diagnosis.  I have sensitivity to bedsheets, touch, feet and legs have a numbness like having socks on, shooting pains, feelings like water trickling on skin, pain is excruitiating at times - cant sleep for up to 48 hours at a time.  I have been referred to a pain management clinic but to be honest this is more about coping than any real relief.  I am thinking of going to my GP to ask about pain relief but I always have bad reactions to medication so I am nervous.  Would be really gratefull for your input on what medication to ask her about.  She is usually very receptive but I find I have to ask her about specific medications.  I cant take NSAIDs or oromorph, or codeine as these all make me vomit blood and also I get very constipated.  I feel like I am walking on sponges most of the time so mobility is compromised - I use a rollator now to feel stable when I am walking about outside.  I have tried Capiscum cream but it doesnt do much.  Piroxicam gel has helped a bit.  I spent a week in hospital in January but all it did was muck up my insides with oromorph and codeine - I had to refuse to take them in the end.  Physio is trying acupuncture presently but to be honest it is not having much effect.

6

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 

7

Thanks everyone for your help! It's been four months since I posted. I still have the pain, and this definitely doesn't look like RLS as it gets worse with any strain or exercise (walking/running, etc.) and the tingling is sometimes constant and throughout the day. The pain is severe sometimes. I also have lower back and stomach ache when I lie down - have no idea if that is related though.

I got a Doppler test done and it looks like my circulation is fine. I've switched to alternative medicine (Ayurveda and homeopathy) but nothing has drastically improved so far. Some of the pain oils seem to help. Before I sleep, I drink a glass of milk with turmeric powder in it, and this helps me sleep longer hours without waking up.

Someone has suggested acupressure to me - going to try that and see if it makes a difference. Will let you know if it works!

Thanks again,

Ramya

8

Hi everyone,

I am having the same severe burning/stabbing/tingling pain in both of my legs,

well that's where it starts then it spreads all over my body.it's driving me insane,

there's no relief from it.

I have pain in my neck/head/shoulder and between my shoulder blades which is

from my Cervical Spondylosis.I've been off work for 2 years now and just when

you think it can't get much worse, This severe burning flared up a few weeks ago.

I am on Tramadol, Paracetamol, Amitriptyline 75mg at night, Citalopram 40 mg as

the pain is causing depression.

I have been on Gabapentin then Pregabalin but the side effects were so bad I came off them.

I am now also on Robaxin-750 it's a muscle relaxant and then when it all gets too much to bare I have Oramorph which knocks me out.But this burning won't go

away.I have an appointment with the Pain Clinic at the end of the month but that

feels a long long way away.

I've made another appointment with my GP for Monday morning.I don't know what else to do.

So I am so sorry I can't give you any answers, but I don't feel so alone as I know

other's are suffering with the same symptoms.

9

Hi Barry,

How do you think your concoction helps?,does it speed up your

metabolism? And did someone recommend it to you?.

I am thinking of giving it a try as I'm at the stage of willing to try

anything.

Awaiting your reply.

10

HAS YOUR G.P DONE X RAYS OR SENT YOU TO SEE A SPECIALIST.

I HAD MANY OF YOUR SYPTOMS AND AFTER X RAYS I WAS FOUND TO HAVE TENDONITIS IN BOTH ACHILIES TENDONS.

UNFORTUANTLY AFTER SEVERAL SURGERIES THE PAIN THAT I HAVE IS WORSE AS IT IS NOW NERVE PAIN .

I AM TAKING GABAPENTIN AND MORPHINE FOR THE PAIN AND ORAMORPH FOR BREAK THROUGH PAIN RELIEF.

AMATYPTALINE IS MY NIGHT TIME TABLETS AND CAN HELP YOU GET 2 HOURS SLEEP BUT SHARP PAIN AND TINGLING CAN LESSON THE EFFECTIVNESS OF ANY TABLETS.

ASK YOUR G.P IF YOU CAN TRY ANY OF THE ABOVE.

I AM OFFER MY SYMPATHY I HAVE BEEN STUGGLING WITH THIS FOR SEVERAL YEARS NOW AND HAVE BEEN TOLD THAT I WILL NEVER GET BETTER AND OVER TINME I WILL ONLY GET WORSE.

THIS CAN MAKE YOU FEEL VERY DOWN.

ASK YOUR G.P IF YOU CAN BE REFERRED TO THE PAIN CLINIC THIS MAY HELP 

11

Hiya! Sorry, I can't see if this has been asked / done, but:

1. Do you get swelling much if at all

2. If so, which area, ankle, calf, the bit inbetween?

3. Have you had a kidney function test at all?

when all mine started they ballooned massively. My feet were huge, the calf was 21" in circumference (it was massive), but the ankle up to calf was OK. After getting that under control, it flares up whenever I have a slight kidney infection. My kidneys are not good anyway, so just walking over the road into town puffs them out a bit, but not like before.

let us know on those points and then if not will think of anything else. I've has such a lot of problems with my legs and about 10 different diagnoses.

best wishes.

12

ASK YOUR G.P TO TEST FOR FIBROMYALGIA

MANY OF YOUR SYPTOMS FIT THIS DISEASE.

I HAVE TO AUNT'S WITH THIS DIEASE AND TEY STARTED WITH THE SAME THINGS YOU HAVE.

HOPE THIS HELP'S

13

Hi Sheila,

The concoction was not recommended to me but I tried it after many hours of surfing the internet for some sort of relief that I was not getting from all the  GP' s that I have seen. I also suffer from gout, hence the bicarb, but it's the best relief for the pain so far.

14

Thanks for your reply Amanda,

I was diagnosed with secondary Fibromyalgia 9 years ago when I was

diagnosed with cervical spondylitis and after 11 months on

sick managed to get back to work, since then I've had flare ups but

manage them.

Sheila

15

Hello, I have similar undiagnosed pain in my legs and also back pain and stiffness for two years now. I have been checked for rhematoids, herniated dics, knee problems but no diagnose. I have recently heard that celiac disease might cause weird pain symptoms. I will have it checked soon. Maybe you might try your chance too. Good luck.

16

Thanks Mouge! I did a test for gluten allergy and celiac disease and it was negative. I had a lot of lower back pain too, and I still do, esp. while lying down. Hopefully we'll find out what it is soon rolleyes Good luck!

17

Hi!

Thanks for your info.

I don't have much swelling in my legs, but I notice that the sides of my knees swell just a little bit - I can tell when I put my legs together. It disappears as I walk during the day. I've had a kidney function test and it was normal. I've been asked to do a PTH test soon - will let you know how that goes. Thanks a ton!

 

18

hi i know exactly what you are going through..i was told i am deficiant in B12 years ago and have injections for it but the pain has worsened over the last couple of years ..the only way i can describe it is its like having a contant migraine in both legs or your worse toothache..the pain is constant and worse at night when laying down..its unrelentant and i only manage to get a couple of hours sleep every night the only thing that relieves it even a tiny bit is if i hang one or both legs over the bed so its hanging down...i have been given LYCRA for it by my gp but the side effects are awful..they make me feel drunk,very unsteady on my feet and i cant walk straight so i have stopped taking them and hope to get something else off my doctor is there any medication that any other readers are taking that i could suggest to my doctor?...i am at the end of my tether with the pain..i have no quality of life at the moment..i also get like stabbing pains in my knees...i also have RLS  which is a another nightmare but i can usually control that with my medication

19

Im taking morphine sulphate.It completely takes all the pain and stinging away.10 years now September 2, much love !

20

Well Kersey,i don't know if you will have a reaction,but morphine sulphate completely cures this !