Rose, I went almost three years before someone had the idea of doing a punch biopsy, I was put through the wringer before that EMG;s,, NORMAL,, so much blood work,, normal, was told and had me convinced it was a psych problem, but it just got worse,, the water running down the legs feeling, grabbing at things that werent there, a family that looked at me like I was nuts,, walking on asphalt made my feet scream,, arms and hands that finnaly went,, burning boring pain,, numb fingers, I could go on,, but you are in the beginning stages,, its miserable,, its horrible, and I have yet to accept it,, most days are just above bearable,, but now that winter has come in,, I cant do much outside,, I cant tolerate the cold,, I was at Mayo this spring,, and they could not give a answer to what is causing it,, and they dispute the fact that I even have it,, there opinion was that the punch biopsy was taken from a damaged area of the skin,, so I;m actually still at square 1,,, I hope you get your meds right, the pain is horrible, its likea house guest that wont leave,

I am your blood sister (older sis) through this. I totally understand, I definitely have my times, I usually cry at some point of every day, not for very long, but the tears roll down. I too mourn my old self, sometimes I day dream about how my body felt when I felt nothing.....I took it for granted, never guessed someday I would be feeling all these crazy, misunderstood symptoms. My friends of 40 years don't understand me and look at me "funny" when I descibe my symptoms, it is a lonely place to be, thank goodness for this site, where you all understand. I find myself looking with envy at others, thinking, "how nice it must be not to feel all these things."

With all that said, the bottom line is we have it and all the wishing will not make it leave. At times when I am really low, I start to think what I don't have, the things that were ruled out, even though we want a dx., we in reality wouldn't want some of those culprits.

It is a tough one to bear I must admit, not only physically, but psycologically.
Just keep coming on here for support, we will hold each other up.

On a medical note, have read Tramadol is another drug used in combination withLyrica that may be worth asking about. Also you might want to consider dabbling in some supplements, I tend to be conservative in that area (am more Western minded), but I am considering Alpha Lipoic Acid, Benfotiamine and Vit. B12.

I am planning a "plan B" myself, as I have a feeling Gabapentin and Lyrica have tolerance building issues, I have already had to increase once in 18 months.

Remember, we all help each other on this site.......your contribution has made me feel less alone.

Yes, Invisable, we are sisters in this for sure . I too feel less alone knowing I'm not the only one in this boat. I sure know what you mean about friends not understanding. They try but in reality they just don't get it.

Thanks to everyone here who has supported me. You all get it and it helps to know you are there. All of your words have helped me feel encouraged. I'll just keep on keepin' on.....its all we can do. I hope to someday come to a place of peace with this body of mine....to accept what I cannot change. For now, just one day at a time....or one hour.

Hi rose i just came across your story while searching for any CTS answers.
Because your in pain your on medication know is it working?I could have alternative for you but you need to search for that in your own area.

I had pain and i have still sometimes little bit pain but nothing worse,what you need to do is look for for somebody how give percutane electro stimulation or electricity on the needle.
In hospitals they still don't know that this is working and i advice you to look for treatment like this.

Good luck

Hello friend,

I am so sorry u are having pain. I know the guilt of kids is unbearable. I have two kids and they still young and I hate not bien there 100%.

I have been dealing with this for 10 plus years and no diagnosis and it's so frustrating.

I hope all of us can find some quick answers!

Did they do ur punch biopsy in more than one spot?
If on spot they say was bad skin then what about other areas

I hope and pray you feel better soon
Love
Tulips

Amazing You posted what I was thinking for the last 3 days. Im on a tropical holiday and the weather system has doubled my N.P. Most of the time Im in the hotel room staring at the ceiling. Lyrica also stopped working. Seems Like everything is contributing to my P/N flares, the weather , antibiotics, spicy food, alcohol, msg blah blah. This time when the pain got to much I went and sat with normal people in the pub. After my 3rd beer the pain numbed and was tipsy enough to fantasize I could be the same as the happy laughing faces around me. I dont remember the last time I really laughed hard. Mixing drugs and alcohol is a no no but so is sitting in my room on holidays. It worked by putting me in a better mood and breaking the cycle and i feel better today. having kids to deal with must be really difficult although as already mentioned they do see things differently although that doesnt help you feeling guilty which is the biggest downer . Guilt which I know I shouldn't feel since I didnt ask for this. I have lost a lot of friends through guilt and withdrawal so am learning to deal with that.

have you asked for elavil with Lyrica? they are a very popular cocktail. My understanding is its best to have a cocktail rather than an endless titration although I have read of exceptional circumstances of people being prescribed 1800mg of lyrica and the person was a SCI in a chair. I realize there are always others worse off that are trying , so i continue to try.
Good luck to us all.