Hello members

I have terrible burning and shooting pain in both legs, main pain area is knees. hypersensitive in this area as well. coughing for example also hurts in both legs. standing creates the worst pain in general or climbing stairs. In general activity makes more pain than resting. but there are no motoric impairments. I can do everything just with constant pain. resting pain for legs in bed is dull with random nerve firing.


I suffer from this only a couple of months. but it gets worse by the week. It got to a point that it interferes with my daily life. i can no longer do any sports, quit my job etc.


All tests came out clean. only thing oustanding is biopsy for small fiber neurophaty. done so far, mri‘s ( all body including brain) x-ray, ultrasound nerves in legs, EMG, NCV, various blood test, urin, lumber puncture etc. No autoimmune disease etc

I saw around 4 neurologists so
far. Currently in hospital to ask for stronger painkiller. regular painkillers, including tramadol were no help

odd point here, all medication i took so
far for nerve pain: lyrica, gabapentin, amitrypeline made symptoms worse. anybody make any sense of that, can you be allergic to these? opposite effect?

I am about to lose my mind. No diagnosis but pain 24/7. I also have strange leg sensations. super sensitive. sexual stimulation causes also nerve pain legs.but apparently my nerves are all healthy. doctor meant you can go running etc, nothing will break…

anybody has any idea? Appreciate any input.

Welcome tomhe204. Someone will be along.

So OP you and doctors can't come up with WHY all the pain and issues you are experiencing? THere are many reasons for neuropathy and we've discussed that so much here.

OP: Another comment, MOST pharma drugs come with negative side effects. We've talked about this too here, I do my very best to avoid them. And I've dealt with pain and neuropathy a lot and I've told my story here.

Thanks. Yes, only analysis of biopsy is still oustanding. i was in great shape until some months ago. 35 years old, no diabetis etc. did sport 3-4 times a week. besides a flu i never had any issues. some doctors almost acted like they do not believe my sort of pain and i should just push through it.

weird thing: about nerve pain medication which do not work? and that even small excercises and activties make things worse. any idea?

Well, some of the drugs you've been taking COULD be causing the nerve pain issues. Google each one with words like: Side effects from >>>>>>>>>>>>>>>> name the drug.

Hey tomhe204,

Welcome to the forum. It sounds to me like you have some form of sensory neuropathy. I went through something similar myself. I hear you at the sense of disbelief even medical professionals exhibit. Currently you are going through the worst of your symptoms. It is an awful miserable time. But this is the nature of PN. Things will get better. Symptoms will ease.

I was lucky in that my symptoms coincided with the first lockdown so I was able to rest and recuperate. Its awful that you lost your job, but for me I think rest is a key to recovery. So its an opportunity. The body is a great healer. You have to create the conditions to accelerate recovery. But you have to be patient too.

I didn't even bother with medications/ painkillers once I realised they did nothing or even made things worse.

So a brief plan of action would be this

1. Rest. Gear up your day to getting a good night's sleep. Practise guided meditations with earphones, there's plenty available on YouTube for free.

2. Take all the appropriate supplements.. There's plenty of information on this Forum

3. Eat some kind of anti inflammatory diet. For me it's a plant based diet. Avoid alcohol which is neurotoxic.

4. If you can take a gentle daily walk but don't do anything that hurts in the short term. But get outside. Sunlight is a great healer. Don't spend all day in front of a screen. Appreciate panoramas, mountains, seas, lakes sunsets etc .It sounds mad but there is scientific evidence to show that these things are beneficial to wellbeing.

5. Maintain friendships. Share your pain. Its easy, especially for a man who does sports etc to lose his sense of identity of who he is and what he does. Share your pain with appropriate friends. It helps.

6. Be patient. You are going through what I consider to be the acute stage of symptoms. This eases with time. I cannot tell you enough about the joy of recovery, of symptoms easing. It will happen.

Best wishes,

Atty

I have Sciatica (in the Left leg the worst and moderate in the right leg) and idiopathic peripheral neuropathy in both legs again left in the worst. I have more numbness than pain or what is known as shooting pain into the feet. I had major surgery on my L2,3,4,5, and S1 ant he L4 and 5 is where the damage nerves are at. From my knees and below to the feet I have idiopathic peripheral neuropathy . I have tried everything and the doctors have done a lot of exams and pills buy nothing worked not even 3.5 hours of surgery. My feet being numb is what bugs me the most especially when they are burning and I put them in cool to cold water several times a day or use my ice pack stocking to cool of my feet. I also take motrin which does help some up to 800mg per day if needed. Sleeping problem is a part of the new norms for me as I can only sleep on my right side. I've learned to except my problem and deal with it the best I can, which can be very stressful at times. I do walk every morning up to 2 miles and yes, I have to deal with all my issues afterward too. I was a runner for 55 years of races from one mile to 50k and a mountain runner and maybe that might have had some bearing on my problems. No one in my family had problems like this and I'm 72 years old now. In this type of medical problem there has not been to many advancements to help people with nerve issues like pain and especially numbness. Do you own research and find things that help you even in a small way. All the doctors I have been to did very little to help me and I mean very little.

Welcome to The Forum Ironman4U2. Thanks for your post. If you have any insights into what you think will help, or has helped you please share. I hear your frustrations with neuropathy and medicine.

Best wishes,
Atty