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

Thanks Atti,

You also had nerve pains in your legs and knees? how long did i take for you to get better from
the worst acute phase? I pray that I get some relief soon, I will be overjoyed if it will start going in the right direction. my anxiety is so high

Intersting point about food intake and diet. I will give that a tryy I supplement currently with Magnesium, Alpha Lipoic, B12, D5, omega 3 and acetyl-carnitine. anything else you recommend?

My activities are so depressing. I go for a little walk
daily but i am returning back almost crying. i cannot find peace with the fact that some months ago, i could run a half marathon and now every step hurts- i never had an accident or anything!

I also have a lot of muscle twitching in my legs going on. I also do not get the resting leg pain in the legs in general, nerves going crazy?

Hey tomhe204,

NERVE HEALING SUPPLEMENTS:

Vitamin B1; thiamine but best to take
Benfotiamine the fat soluble form as you can store it in your liver. B vitamins are water soluble so pass out of our bodies .This together with
Vitamin B12 are the most important supplements. I take 1500ug of methylcobalamin a day.

A quality broad spectrum multi B Vitamin. Don't overdo B6, that can cause PN.
B Complex 50 ~ 100 mg
Vitamin D3 1000 ~ 5000 IU. Combine with K2 to aid absorption.
Magnesium 400 ~ 600 mg for me I take Mg Threonate as helps with sleep
Omega - 3 (EPA DHA) from Algae Oil or Fish Oil 1000 ~ 2000 mg a day. Make sure it is purified from heavy metals if Fish Oil.
Eat milled flax seed and chia seed for additional omega 3.
Alpha lipoic acid 600 ~ 1200 mg
CoQ-10 100mg
Acetyl L Carnitine 1000mg

Turmeric 500 mg I take Curcumin what some would describe as the active ingredient giving effectively 2500mg but some argue that the powder/food itself is what is good and there is no active ingredient. It's anti inflammatory and is a natural pain killer.

I think its important to flood the system with anti oxidants and a great source of these are Green Tea ( I use Tetley decaff) Hibiscus Tea. And I mix Triphala Powder into my porridge. This contains Amla or Indian Gooseberry. A good anti oxidant supplement is Grape Seed Extract (sorry Caroline, stealing your thunder!)

Hopefully some other contributors will add their preferred supplements too.

Best wishes,

Atty

Thank you,

it is valuable information, i will check what i need to buy.

How long did the acute phase last for you before you got better?

How much pain reduction you got from the acute phase?