excruciating leg and knee pain
 

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. :welcome_sign: 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?

Hey tomhe204,

I did not have the knee pain you describe but I had full body shooting /stabbing pains and numbness in my hands and feet, arms and calves. Also Allodynia that is pain from non-painful stimuli. Some people with allodynia may experience severe pain even from a few hairs brushing against their skin. There are some forum members with this severity of allodynia Some people may feel a burning sensation while others feel an ache or squeezing pain. It sounds like you have some form of Allodynia. I also had hyper sensitivity to stretching or exercise. Also fasciculations or muscle twitches.

There were two major health events in my life. The first was when I was 28. I used to be a good club standard runner and used to regularly run 5K 10K 5m 10m 1/2 marathons. Then I was struck down by post viral fatigue syndrome that gave me a constant swollen painful aching neck glands, constant fatigue and the inability to run. Running was my life. I was good at it and my running club was at the centre of my social life. After much consternation I had to give all of it up. I couldn't face waiting for the runners to come back and share a drink with them because my identity, who I was, the best 5K and 10K runner in the club was lost. Everything was geared to improving, to becoming fitter and faster. Put the work in, reap the rewards, that easy goal orientated existence, all gone. And then at work, trying to tell people that I had CFS. Nobody quite believes you, they thought I was attention seeking or after sympathy. It was the loss of Identity of who I was, the ultra fit, sporting, super healthy athlete me, that was the hardest to bare.

The second major health event was (alcohol induced) peripheral neuropathy in January 2020. I see you have been dealt a double whammy and have had both of these events in one. I feel for you. The reason I have written the above is just to show that I understand what you are going through. It is truly awful. Being understood I think is important.

The acute phase for me (this may not be the correct terminology) lasted maybe two months. There was a gradual reduction in symptoms to insignificance. This in itself is a joyful experience. That took maybe another 2 months to achieve. All I have left is numb toes and fasciculations and these are insignificant.. But have residual hypersensitivity to touch and stretching from time to time.

Both my events were auto immune in cause, so I am mindful that I have to be careful for the rest of my days. I'm not sure running is actually good for the immune system.
I don't think its insignificant that you report having flu.

Best wishes for a speedy recovery,

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.

Wow I relate a lot to your story from running. i completely withdrew from my friends in the meantime, i cannot bear it. I also lost my financee to another man in February this year, my symptoms spiralled out of control after…I am scared I have small fiber neuropathy and i
can never run and hike again.

Did you take some medication against anxiety? I feel almost suicidal at times. every day more symptoms and more burning. I pray for this nightmare to stop. I cannot walk for more than 5 -10 minutes anymore, started to sit on the ground in the shower. I fear to be bound to a wheelchair. I can only imagine how grateful you were once symptoms subsided, my only dream. I see life completely different now, my point of view has changed.

I have this crazy Allodynia from sexual stimulus as well. it it scares the **** out of me.

Thanks for your understanding, it really helps. your story gives me hope.

Thanks ironman. I appreciate your post

You are doing the right things. I am unable to walk 2 miles anymore. the sudden onset and gradual worsening over only a few weeks is inexplicable to me.
Yes sleeping is a manor issue as well. anxiety and pain is a vicious mix. i am at a loss why gabapentin and lyrica do not help for my pain. it looks i am still in acute phase

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

Hey tomhe204,

I didn't take anything for anxiety. But perhaps you should seek medical help for anxiety. My peak symptoms coincided with Lockdown in the UK and good weather and despite my symptoms the world stopping gave me time and place to recover. I actually felt really at peace. I would lie in the sun and snooze and slept for hours at night. However there were times when everything hurt so much I wondered if this gets worse can I go on. Not in a suicidal way but in a functional way. I too feared a wheelchair.

Its awful that you lost your fiancé in such a way but I wonder if that stressor has also contributed to your symptoms. You have suffered and I feel for you. Is there no one you can pour your heart out to? I think that will help. Can you not find a massage therapist to help you rid your body of stress and tension you may be holding in. Find a guided meditation online to help you relax?
Or breathing techniques to calm your mind? All of these things will help you recover. There is always hope. Please keep us posted on your progress. It will help others.

best wishes,

Atty

Atty, you didn't steal my thunder, I've only been discussing Grape Seed Extract since I arrived here and long before in my life to others. I also take Amla .. It's good to hear that MAYBE my info is helping others. I have a lot of people dying in my life, and up in years believe me, so am I, but I swear the ones who take Grape Seed Extract are doing so good, so much stronger overall.

On the Anxiety issue, why not get into some Talk Therapy for starters...ask for Help from some experts.

Then there are calmers we can work with, I've tried 3 in the last years and they are :

L Theonine
Gaba
Inositol

And Inositol does the best in my body.

Do meditation, calm the mind and body, so much we can do that does not cost $$$$. The more one meditates the calmer one becomes. My dear neighbor guy who is just 28 is a huge meditator and even goes to Ashrams in the U.S. and take meditation trips to India. Lovely lovely smart young man.

One can do a totally silent meditation, just go to very quiet area and clear your mind of everything and don't fall asleep...keep there for 15 minutes or so and do this when you think of it.

Hi tomhe and Ironman, Welcome to the NeuroTalk Support Groups.

I see you've been given great advice from the others. I have a cancer treatment neuropathy (it was not Chemotherapy) so my path has been a little different from a lot of other people here. My first symptoms came on extremely fast and furiously and rendered me incapacitated regarding usual daily activities almost overnight.

Fortunately after coming off that toxic treatment and onto something different, I started to improve very slowly and the pain and other symptoms have retreated from knee level in both legs to now just my feet and ankles. The pain has diminished enormously but is still there and there is a lot of numbness.

tomhe,
Were you on the Gabapentin and the Amitriptyline for very long? I also wondered if your anxiety and suicidal thoughts began when you were taking them or when you came off them?

Gabapentin can cause suicidal thoughts in some people and make some people more depressed or hopeless or anxious or restless. Can cause sleep problems.
Gabapentin (Oral Route) Side Effects - Mayo Clinic

Amitriptyline can cause similar to above in some people. It may also cause some people to have increased anxiety, suicidal thoughts and tendencies or to become more depressed.Can cause sleep problems.
Amitriptyline (Oral Route) - Mayo Clinic

I think anxiety about medical issues that we face is always hard, but especially difficult for those of us who are driven to perform. Everyone gets anxious from time to time. It's the way our bodies work. However, for some of us, there can come a time when our thoughts can become a little "disordered" and then the motivating and more positive aspects of a little "healthy" anxiety becomes something that is dragging us down and changing our lives in a negative way.

Reading what Atticus wrote there is quite astounding to me and I'm sorry you had to go through that, Atticus. It's exactly what I was trying to explain recently on another thread in Anxiety forum. For people, and especially athletes who are so driven that when they do hit a medical road block or show they are vulnerable and not superhuman, it's very difficult to deal with and others like family and friends (club mates) just don't always understand.

tomhe,
To me, reading your posts, the most important problems going on for you in this moment are your anxiety and your "almost" suicidal thoughts. On that note, if you feel that way and need help please reach out to someone you trust who can spend time with you until you feel better and are able to make practical steps in the way of treatment or support.

fromhttp://metanoia.org/suicide/
"Suicide is not chosen; it happens when pain exceeds resources for coping with pain." It is imperative that if you having these thoughts then you need to do two things immediately. One is to find a way to reduce the pain and the other is to find a way to increase your coping resources. We can only do those things by asking for help.

Please talk to your doctor for a referral to see someone for "talk therapy" as caroline mentioned. Cognitive Behaviour Therapy is extremely helpful and it doesn't have to be for long periods of time and can help us out of very deep holes. The support is very beneficial.

Psychologists can teach us different ways to deal with our thoughts. Most of us with serious anxiety issues or depression developed certain behaviours or thought patterns at a very early age that are not always the best ways to deal with what life throws at us but because they're learned behaviours it feels as if that's all there is. It's not.

I also wanted to let you both know that there is a Peripheral Neuropathy Forum here and is worth reading the sticky posts at the top. There's a wealth of information after years and years of people dealing with similar pain and other symptoms.

https://www.neurotalk.org/peripheral-neuropathy/
Peripheral Neuropathy Forum
https://www.neurotalk.org/pn-tips-re...-treatments/PN
Tips, Resources, Supplements & Other Treatments

Be kind to yourself. It's time to heal and recover and get through this. It's not the time for a long walk that causes so much pain or a marathon effort in the yard. It's time to be kind and calm and let your body heal.

Hey Lara,

I just want to say thanks for your kind words and this typically thoughtful and considered contribution. Thanks for all that you do.

Best wishes,

Atty