Severe tingling, burning + pain in both legs

I have this, they are going to access me for periodic paralysis and there are different types within that like Anderson tawill syndrome. I have some phenotypes like web toes and I had a small pallette that they had to break to make bigger. I have a connective tissue disorder called EDS or Ehlers Danlos. And periodic paralysis is one of the comorbidities but both conditions are rare. I just want my legs back. I can't live like this. Pain clinic doctor gave me duloxetine for morning and gabapentin at night. He is starting me out low though so no help yet. He said he thinks my leg pain in neurological and if I have periodic paralysis then he would treat me with that anyway but I know someone who has periodic paralysis and her treatment is potassium. There is another type that you can have too much potassium. But my potassium is low around 3.5 but when they do the blood draws it goes up by 20% because they are using a turnoquit. If you go to the periodic paralysis website they give instructions on how to test for potassium properly by not using a turnoquit. My next step is to get standing orders for potassium draws to see where my levels are. Then see a neurologist to access for periodic paralysis but you need the record of potassium draws first. I'm going to see a nephralogist to start that process of evaluating my potassium properly. You have to bring the instructions on how to draw blood from the periodic paralysis website to the lab otherwise the lab technician won't do it, and sometimes they still refuse so you have to find a technician that will do it correctly.

I have had similar journey, turned out was not restlesslegs butsmall-fiberneuropathy causedby Sjogren's Syndrome.  May be worthwhile to check it out, as well as celiac diseaseamong other things that can cause small-fibre neuropathy.  Burning hell pain taht is hard ti diagnose!

Hello,

I agree with another poster that you should be seen by a neurologist and tested for MS.  

I have the exact same symptoms as you.  I have MS.  We are still working to find what is being compromised in my body to cause such a horrible set of symptoms.  It could be a lesion in the spine or some sort of compression in the spine.

If you get an MRI, ask to include your spine as well.

Throughout the years I've been on many different drugs to try and control the symptoms.  I also have RLS so it's easy for someone to attribute these set of symptoms with RLS.  However, these are 2 different things and what you're going through is not RLS based on my RLS and from my neuro tellingme it's not MS.

When there are bizarre symptoms that no one can find a cause for, I would bet that it's MS.  Keep in mind that I'm not a Doctor, just a patient.

Different med combinations work for awhile and then your body acclimates to the drugs.  

I'm sorry to hear about your pain.

 

I have fibromyalgia and for the last 15 years I've been getting this weird burning, numb feeling. I only get it when laying in bed. I tend to sleep on my stomach but slightly turned to one side. Every morning I wake up with burning on whatever part of my body has had the most pressure on it. Be that my upper thighs (on the front), my upper outer arm, shoulder, head.

If I sit up in bed to read, I get what feels like a cold water sensation in the back of head after resting it on the headboard.

The burning feeling soon gives way to an uncomfortable numbness once I change position.

It isn't limited to one side of my body but it is always felt in the same places, just on either side. 

I also have lower back pain everyday when I wake up.

I use fentanyl patches 50mcg and have been using them for about 5 years now.

I have tried literally every medication people have mentioned on here with the exception of metformin.

Both my parents are diabetic so I'm tested regularly and I don't have it.

I also get a slight tremor in my left hand quite often and I get cramping in my fingers.

I have RLS, fibromyalgia, endometriosis, raynaurds and cyclic vomiting syndrome.

By far the burning numbness thing is THE worst part.

I've had countless tests, MRI's, CT scans etc. Nothing shows anything.

I'm due to see a neurologist at the end of the month so I'm eager to see what they say.

Hi All

Happy to come across this forum after months of searching solution online.

I have been experiencing the exact same symptoms : burning sensation hands and feet and then when my legs burns really hot after a while it cools on its own, my hands usually feels like I am wearing a thick glove round it. I don't have any pain anywhere except for recently very slight stabbing pain at my palms. My whole body feels like a heat detector like I can detect any hot object for distance without even getting close too it. My whole body feels cooler and relaxed after taking paracetamol but my feet still burns still. I have never experienced any of these in my life and this all started in one night 2 months ago till date after taking 2 tablets of flagyl and 2 tablets of loperamide at once to treat the diarrhea (I had from taking ciproflaxcin).

I have done all blood test and diabetes test and I am normal except for the fact that the value of my widal Test is high 1:160, 1:80.

Please if there is anyone out there that can help me out . I would greatly appreciate

Thanks

Hello, have you gotten a cure to this problem as i am currently facing these problems too. I started having this burning since 3years ago and uptill now, it hasnt relieved me. What can i do? I stay in Nigeria incase there is any drug i can buy here that can be of help. I have visiated two doctors but they didnt help matters at all. The problem is making me feel depressed every single time. Please help me. What can i do?

Hi did you get a diagnosis eventually. I have same  symptoms 

gosh on reading through this thread I see it is 3 years since I posted about m PN.  I am now on 25mg Amitrityline  and have resisted going on other pain meds.  My PN is now above my knees and above my elbows.  I still use my rollator for walking but also a mobility scooter for any distance.  Nothing has helped me really and the neurologist and my doctor do not seem to have anything to assist.  I have now decided to ask for Tramadol - not to take regularly but to use when the pain gets particularly severe (electric shock pain mostly)  I can cope with the pain at level 3 - 4 but this pain really makes me yell out and is at about level 8 - 9 and always lasts for at least 48 hours so I cant sleep or function with it.  I went on a chronic pain management course and this has helped me with coping mechanisms.  Mindfulness is a great help.  Wearing socks  to bed helps me with the over sensitivity of my feet and also if the burning is bad I find running cold water over my feet helps.  I wish I could be more mobile and do all the things I used to love like walking distances but I cant see that happening again now. so I try to keep busy on other hobbies like knitting instead - no sense in hankering after what I cant do, much better to concentrate on what I can do.  I have days when my head is so dizzy that I come close to falling when I am moving about my rollator helps me feel safe.  I really wish they would find out more to help us with PN.