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

Dear Rose_Thorn98
hope you are feeling stronger today. Im sorry to hear that you are in so much pain and without diagnosis. I so understand you, many of us want our old life back. I wish i could change the day i was injuried, and today my life would be different. Its really hard stay positive, specially when we are in pain, but i believe a pain doctor will help you, but dont wait 2 months, make noise and get to a specialist as soon as you can.
I did a lot of noise, its been 4 years now, the beggining was terrible, alone, abroad, i couldnt understand english, have no clue about nerve, painkillers and all, i even couldnt explain how i was feeling to get help, but i found help somehow. Still a long road to go for me, lots to learn, coping, improve, and accept... one day i hope be positive whole 365 days of a year
Normal? maybe no, just different perhaps.
Your boy probably knows, children have so much more understanding than adults. Dont feel guilty, give what you can give, and love is a precious gift.
This forum will help you a lot, theres plenty of information on internet, but this forum is special to me.
Dont say sorry and listen, YOU ARE NOT a downer. We are on the same train... Thank you for share with us here
WE will be happy again, happy with who WE are, and with whatever WE have.
Please keep us informed when you go to a pain doctor
lots of love and strength
Carla

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.

sorry to hear your having a tough time, my mum who has been diagnosed with peripheral neuropathy a few months ago is in agony at the moment has had a sudden onset of itching,burning ang stinging in her hands and feet, been to the doctor three times finaly he suggested that she change her diabetic meds.. she really need to see a neurologist but cant get in untill late feb... hope u feel better

It is hard to try and stay positive when your dealing with pain and no idea why your suffering and you cant get a decent D;x of what the heck is going on, I have SFN, and I swear its killing me a little bit every day, how can you describe the pain and the weird body symptoms to your loved ones,?, I cant do it, there are no words to describe it, I dont remember when I laughed hard either at somtthing, when you are in pain you are just trying to get to the next minute

Getting back to the old normal self for me is a dream that I cant see coming true, eventually the neuropathy will win out,, and then what,? it surely is no way to live,

Even waking up in hte morning you know its going to be a repeat of the day before, I cant drive anymore so I;m stuck in the house all day with just my dog and a computer and my pain, its no wonder I want to go to bed at 7pm or sooner,, it takes everything out of you just to endure the few hours we get any sleep, and to get up and face another day of this nonsense

Hi Feel the Burn,

The big smelly fish is that your pain is not being adequately addressed/treated. This is something to hash out with your docs (which causes me to wonder, if you can't describe your pain/symptoms to loved ones, how do you describe it to your docs?) With docs, it's not just describing pain as symptoms (which are subjective) but perhaps more importantly, what effects pain is having on your day-to-day life.

I find some good ideas googling: describing pain and adjectives describing pain

We all have to be our own advocates; if they're not doing their job, it may be time to consider whether they're the right doctor(s) for you.

Also, has anyone suggested pain counseling? I know it's not for everyone, but I also know some folks for whom it's made a huge difference.

If conditions were different, I might take it as a personal challenge to give you a big belly-laugh, but since you have a dog, I think that job is likely taken.

Doc

Here IS the first one:
http://painconsortium.nih.gov/pain_scales/index.html

There are many, many more?

When asked? I say right off the bat? 'I DO NOT 'DO' HAPPY FACES'! AT ALL!!
If they ask me for 'more detail'? I reply: Do you want me to bite you? Nuff said. No one's committed me yet!

There are many, many ways to describe PAIN... It's all subjective.
Do check out all the medical jargon for 'pain' to find the best analogies for YOUR PAIN.

Sometimes it's easy? Others more complicated. BUT? Whatever you do? Be consistent about how your pains 'feel' at first? And, if they change, document those changes as best you can...when they change!
Timing of 'events' and symptoms of those 'events' could lead docs off on either diagnosis or 'tangents'. But? If 'tangents'? These are things that can be later excluded from final diagnosis.. AKA 'One more off the list!'
Get even with this! Get your diagnosis and treatment! My heart is with you, I've been there shouting at empty walls on occasion. No one will answer.
I am hoping that you CAN and DO get help! And SOON! Hugs !'s and hope!!!!1 - j

I almost have gotten to the point that I really dont care anymore, Just tired of knocking on doors, I layed in bed the other night thinking how many Doctors we have been sent to and I lost count at 40,, yes 40 over three p0lus years, IVIG, Pulse steroids, RITUXIN, Nothing made a diffference, Rituxin almost killed me,, had a severe reaction to it, my PCP tried a fentanyl patch, anothing reaction, just tired of dealing with chronic infections, and this constant losing battles with the medical community, but I havent given up tottaly yet,, yes my dog gives me laughs, when hes awake,, loves to lay on the floor with his head right up against a electric heater, hes gonna fry his brain someday if he hasent allready

Many years ago I dubbed that "Guinea Pig Complex" ('cuz I've been there, and am again...) Somewhere along the line (and with the help of my current PCP - he's very good with explanations and anecdotes) I came to accept that medicine doesn't have all the answers, and that, "I/we don't know" can be a valid one. There's some peace in that.

Doc

I guess your right Doc,