when symptoms constantly change. Just as a few of my foot pains were subsiding a little bit, I get hit with possibly the worst pain to date. (well maybe only the worst because it's the newest) The toe on my right foot has been a little sore the past 3 weeks, but yesterday it really manifested itself.

The feeling will be familiar to many of you. The toe pain that feels like you are walking on broken glass with each step. This might be the one that costs me my job as I have to be on my feet several hours a day. I have a similar feeling in the ball of my left foot but it's a little less painful and manageable.

This whole 1 step forward 1 step back nonsense is very frustrating. I'm not even sure how long I'm going to have to hold out for a medication that will give me some relief. I just started gabapentin and I'm sure the neurologist will want to wait a few weeks before even considering a different medication. I'm just not confident that gabapentin is going to help with this sharp debilitating toe pain.

They still haven't found a PN cause either so it's hard to be optimistic that I'll get this under control at the rate I'm going. The only hope I can hang on to is that if I can get 1 symptom/pain under control, maybe there is hope for the others. (rant over)

I totally understand your frustration and concerns. This has been going on almost a year now for me and still no diagnosis.

It took a few months for the medication to fit right, experimentation is key. I am on Lyrica rather than Gabapentin, but its my understanding they do a similar thing. At first, Lirica was enough for me to control the pain, but I eventually needed some Tramadol as well. I hate being on such strong drugs. But, now that its sorted I wouldn't want to stop without good reason.

Being in control of the pain, rather than it controlling me, has given my life back.

Hang in there, soon the meds will kick in and you will get pain relief enough to function again.

I'm right there with you on symptoms constantly changing

Both of my big toes get the electrical currents in them.....when it hits I actually have to hold my toe until it subsides. Drives me crazy. All of this started in my feet, moved to my hands, then right upper arm and now....legs and left arm. My teeth hurt, my tongue is numb all the time and my jaws hurt on and off.

This is a frustrating condition. I do know the cause of my SFN. Diabetes and then 6 rounds of chemo (carbo/taxol). Today is the 1 year anniversary of my last chemo treatment. My symptoms started almost exactly 1 month later so I'm going on a year of trying very hard to deal with all of this.

I miss working, I miss being able to plan anything ! I never know how I'm going to feel from one day to the next. Right now I'm on 1800 mg a day of gaba and 90 mg of Cymbalta. Still having to take vicodin every 3 hours and add Xanax when I'm totally ready to scream from the pain. I know it's a slow process with my neuro. I see him every 6 weeks. I actually got worse when he increased my Cymbalta from 60 to 90 but it was probably just a coincidence. I go back to him in 2 weeks....not sure how high he can go on the Cymbalta but I'm not where I want to be. My guess is that if the Cymbalta doesn't do it he'll take it away and add lyrica. Who knows ?

My head is spinning today so I don't even know if I'm making any sense...lol

Can anyone tell me what the top dosage of Cymbalta is ?

Thanks for listening.

Debi from Georgia

For me I have discovered that things move very slowly in the world of PN.

My problem was untreated hypothyroidism for many years, and it took a YEAR after starting medication, to get my feet back.

By the time the doctors could agree on my test results, and I had the radioactive uptake finally.... my feet had progressed from very painful to numb. The numbness reversed to pain again, and it wasn't until a year later that my feet stopped hurting, and tingling.

This makes sense knowing that the peripheral nerves take time to repair themselves. There are many studies done on severed nerves and their growing back rate...and that is a slow process for most people.

So people here who do not have hereditary issues (which do not repair), just have to be patient and baby the areas of their bodies where the nerves are damaged. Removing toxins and triggers is important.

This gives me hope MrsD. I am mostly numb in my hands and feet and on the days I can't get around, I find myself wishing for the pain to come back because then at least there is feeling. I am glad that turned around for you and hope it does for me as well.

So when your feet went numb, did the pain go away completely? I either want to get better or go numb at this point. I couldn't live happily at the point I'm at. I guess part of it is I haven't received anything from the doctors pain wise that has helped. Nortriptyline and Gabapentin haven't been very promising so far. Maybe helped with burning slightly, but I'm still unable to stand longer than 5-10 minutes at a time. At this point I'm relying on supplements, diet, and willpower to get through each day until I either get this under control in some manner.

Hi Debi,
The highest dose for cymbalta is 120mg. You still have one dose to add. I will say though that when I went up to 120 I had to go back to 90. I had a very flat feeling. Didn't have any emotions at all. Not saying the same will happen to you.
Just be aware of it.

I personally thought having this disease is hard enough. I didn't want not to be able to fell happy moments!
Hopeful

Some days is the deep ache in my feet. Some days it's the burning. Other times my feet sting and the skin feels hypersensitive. Not to mention the burn! Recently toe pain has become prominent.

The days when only one symptom manifests I think I'm improving. The days when all symptoms kick in I'm sure it's getting worse. The mind games really take a toll on my mental health, but I'm trying to be patient. I hold on to hope reading through the positive stories on here but it's hard as testing is still going on to try and find a cause.

I'm sorry. I feel exactly the same. Some days are encouraging and other days are "cancelled" as I like to say. It is not just physically discouraging but also emotionally, to have the world continue on and I struggle with this and to keep up.

We all have to keep going and survive this.

Thanks Hopeful....120mg....hummmm.....you're probably right....he'll put me on the 120 when I go back. If I get the 'no emotions at all' I'm sure my kids will be the first ones to tell me ! As with any new or increased meds I never have any idea what it will do to me. I'm just going through the process of this neuro doing everything he can for me.

I'm sure you've told us before but can you tell me what meds you are on ? So far I've only been on the gaba and then he added Cymbalta.....when I went as high as I could take on the gaba.

Thanks

Debi from Georgia