Sorry... Still looking for help. Please respond
 

Hi

I'm having a really hard time with this. I just can't seem to stop crying so I can move on and live life. That's all I want to do. But my every thought ( literally) is of my pain.

I really need I know what other people were like ( symptoms wise) when it started and where they are now. How so you cope? How much does med help?
I don't really know what started this... I can only speculate. It seems everything I do to try to help only makes this worse... So I don have a clear idea of what really did this. In my case ( I'm sure u have read my other post) it may have been a med and or electrical injury and major damage by acupuncture..

I don't mean to annoy anybody with all my questions. I jut don't know where to go or what to do. My husband doesn't understand. I really really need to hear other people symptoms, their progression or improvements and what helps. I have been on all the supplements here with no improvement and al my levels r normal

hi there,do you know the name of the med which you think caused it?

Loulou

I think the twitching started with domperidone. I didn't have burning until I did an electrical "treatment" that subsided a bit but after 8 acupuncture treatments the burning prickling pins and needles tingling stinging is 24/7 bodywork way worse than it was before.

What I was like
 

It is therapy for us to tell our stories and it gives the ego a small boost to think that we could help people. At my worst, I could not be still because of the pain. I risk repeating myself as I feel that I might have told you this before. Pain can drive depression and my life didn't get better until I allowed myself to take Hydrocodone for the pain. Many here are on or have been down the opiate road. Do what is needed to go forward.Time will change your pain or it will move or you will adjust and adapt. Do what you need to not let depression take you down further. We all know it sucks and that people don't understand. I used the opiate until I didn't need it as much. The supplements talked about here are for Mitochondrial health and about the best nutrition for nerve regeneration. They will not fight your pain. I am now on Tylenol w/codiene and can actually miss a pill and go on anyway. So, if you feel like you are trapped in the corner and you have to get out, please allow yourself to tell your Dr. that you need pain management. If this would be too slow, get your housecoat and fuzzy slippers on and go to the Emergency room. You might have to go through suffering, but you don't have to do it alone and with no help. Good Luck, Ken in Texas.

Hi Canagirl,

I'm sorry you are struggling so much.

I have the all over burning too, mine was weird as it started with funny feelings in my feet stomach and fingers, but no pain. this went on for 2 years. I went to 2 different nueros who didn't have a clue. while I was abroad in hot weather I got water drop feelings all over my body, even on my head, it felt like rain, but wasn't . I then realised something was going on. It wasn't until I saw a very unsympathetic neuro who told me I had sfn and told me it could be HIV as was one of the main causes! I panicked, the next few months is when the burning started, it was anxiety which brought it out! I've had all the blood tests, but am waiting results of Voltage gated postassium channel and sodium channels, Have you had these blood tests? i'm also waiting results of the anti body tests the rheumy did. I'm booked for lip biopsy too. Am on Lyrica and Amatriptaline. i still have symptoms but i feel they have reduced them about 65% i have not had any side effects. i am 37 and in good health.

I hope you can get some relief soon,

take care

LouLou

Canagirl,
How long ago did your symptoms start? What were you taking the domperidone for? A stomach virus?

A virus/ stomach bug could have been the trigger.
When you think back can you remember any minor symptoms that you had before?

Domperidone is commonly used for gastroparesis...which is related to autonomic dysfunction. Do you have autonomic neuropathy too?

Although most of us would prefer the life we had prior to neuropathy, we have learned how to cope by finding what works for each of us. Everyone is different and therefore there isn't a clear answer for you. I prefer to use distraction as my primary treatment...so my mind isn't focused on pain and other symptoms all the time. So I try to stay busy...in short bursts of 15-30 minutes, then rest (as I'm unable to do much for longer periods). It can be anything from crafts (if standing is prohibitive), home projects, reading, taking walks, gardening, etc...whatever makes you happy.

I don't remember seeing other posts, so don't know what meds you've tried, but here is a vast array of supplements and meds to help. You just have to give each a try and see what combo works best for you.

I was taking the med for breast milk production. I believe I have autonomic dysfunction but dr says anxiety. I feel my skin throbbing
-heart pounds and body parts pound ( like my pulse is too hard) ALL the time. I am not "panicked" when it's happening. Watching tv, standing in line etc
- I don't sweat. When I'm overheating ( room is too got and too many blankets) my burning and stinging on arms and legs gets bad but no sweatunh anymore
- half a cup of water and I have to urimate (can't hold it for long either)
- dry mouth
- dry eyes ( mostly when in air controlled buildings like a mall
- extreme hair loss

Does this sound like autonomic dysfunction ?

yes it totally does sound like autonomic dysfunction. It also sounds like thyroid issues.

Which issues sound like autonomic dysfunction? Which thyroid? I've had thyroid tested 3 times always comes back perfectly normal.
The symptoms that bother me most are
- pounding heart and body ( holter test says heart is fine, some tachy but dr says everyone has that)
- it seems like my skin ( all over) has a pulse of its own ( or fine shake that feels like a pulse)

Does anybody identify with the skin shake ( or pulse of its own). This one really gets me