Pain Level Questions.. am I making progress?
 

Well, I feel like if I am on medication that i ought to have less pain. The problem is, I never had this problem before, and i don't know what my expectations should be with the medications. if i find the proper "cocktail" should I expect 0-2 pain levels? What do you have with your meds? What works for you ? Right now, I am on 1800mg of neurontin/ 10mg lexapro, and take hydrocodone 10mg for pain as well. Today has not been good.

A month ago before I took the drugs, I could not find a comfortable sitting, lying and standing position without severe pain. i have eliminated my GI problems ( spasms in colon) with Bentyl, and acid reflux with Nexium.. but the burning continues in the vag area and pelvis. .. It was worse today and around a level 6-7 already in the morning, when mornings used to be best. Am I making progress? i can stand and lay on my side with less pain, but sitting is not happening!
I don't know what I am supposed to expect from the meds. I am getting down, as I guess I expected more improvement. I don't know whether I should try Lyrica in a few weeks or stay with the Neurontin either. I don't have side effects with it.

thank you .. Jess:winky::grouphug:

Well..
 

You appear to me to be fairly young, from your pictures.

One thing all PN patients need to understand is that neuropathy is not a quick solve.

The drugs, and superficial treatments are not great, may work, may work partially or may not work.

I have had neuropathy since I was about 30. I am 61 now.
I still have it, but it is not what it once was. I am fairly mobile and active. I don't take any pain meds other than a Tylenol or Aleve now and then.
I use patches...Lidoderm and/or Salonpas if I have a pain flare.

Many people who are new to a chronic illness don't really understand the limitations of medicine. They will cut you, do things to solve other problems, but when side effects appear, then the doctors are rather clueless.

The bad thing is that you have to be patient and allow time to heal you. You may need to assist in that healing, and not expect doctors to do everything for you.

The good thing is that nerves can regenerate. So sometime in the future you may be better. But you may have to be the instrument of that healing as well.

Thank you MsD. Yes, I suppose you can tell I am impatient. I know people have been suffering for years on here, and my 3 months must seem like nothng. I have not had any chronic pain issues, so I suppose that is what bugs me the most, I don't know what to expect.
Thanks for the "young" comment. I am 40, so not that young, and I have this whole illness to remind me of my 40th birthday, as it happened around then.
So, I suppose I need to give things time. It is hard, today was a bad pain day, and it is tough for me not to think about this all of the time, because the burning hurts so much. I guess I don't know what I am supposed to look for in medication, how much it is supposed to work and such. I know it will take time and I should concentrate on healing.
Thank you for your sound words. I appreciate the response. :hug:

From all I have read, the response to medication varies a lot. It depends on the nature of the underlying cause (neuropathic pain is generally a symptom, not a cause) and at the moment there seem to be no medications which have been developed specifically to deal with this type of pain. Most treatments were developed for other conditions for instance epilepsy and have shown, almost as a side effect, benefits for some of those affected by NP (not me unfortunately). Though if the underlying condition can be treated, or in the natural course of events disappears, the pain is not necessarily long term. Some nerves can regenerate. I'm a layman, so this is of course only an opinion informed by reading and sifting through a lot of stuff found elsewhere on the web.

Hi Jess,

I was 42 yrs old when PN hit me, so I can relate to how you are feeling. I am 46 yrs today. I still have PN, but it is well controlled with meds. I take Lyrica, Cymbalta, Tramadol PRN and Topamax was added just to see if it would help me loose some weight. I have 25 pds.

I started with Neurontin which did help but nothing like when Lyrica was added. I took Neurontin and Lyrica together for over 2 yrs and gained 50 pounds. YIKES! Fortunently I was very skinny to begin with, but 50 pounds is way too much. Anyway, for me Lyrica really helped the most along with Cymbalta. The Tramadol I take mostly in the evenings. I exercise alot and it helps greatly then.

My PN is in both legs - my hips and thighs burn, tingle, cramp, ache, etc... I also have been told I have Fibromaylgia now too. I am now way better than I was, so I am hoping like everyone else that time along with continued treatment both naturally and medically will be the key.

Take care, Laurie

missed it, ..maybe
 

Hi Jess,
I've been out a lot lately due to a move. We are just now finally getting the old house ready for the market. I've been trying to keep up here but must have missed your posts. Has the cause of your neuropathy been diagnosed?

I like you have suffered miserably with the sitting pain and fractures in my sacrum and pelvis didn't help it. I find that if I keep my mind occupied I can tolerate sitting longer. Lyrica was my magic pill. Didn't stop the pain but did give me a little ease from it. I just have to stay very very busy.

Sometimes easier said than done, I know. I walk and move around a lot. I sit at the computer for a little while, then walk to the breakfast room and sit at the table, then walk to my studio and sit a little. Moving has kept me very active and helped keep my mind off the pain until bedtime. That's another story.

I just wanted to know if you had a diagnosis yet? For some people this is private info and I will understand if you prefer not to share it.

Billye

Hi Billye
Yes, I agree with you moving around helps and getting outside, otherwise you can get very depressed and down about the pain. I had a very bad flare yesterday and felt like no pain meds worked.
I have nerve pain in the vaginal area... doctor believes pudendal nueralgia.
In other words nerve pain coming from the pudendal nerve. I am getting an EMG test on Wednesday to give more of a diagnosis, and will go for a nerve block if need be for futher diagnosis. PN is a diagnosis of exclusion, so I just present all of my symptoms and we narrow it down. I have had chronic and unrelenting burning for 3 months now. So, I am just trying the meds to see what works for the burning. I am on Neurontin 1800mg, Elavil mostly for the pain.
You mentioned Lyrica.. what were your pain levels like with the drug? I take the Neurontin and I still have the burning, but it may not be as pronounced. I dont know if anything eliminates the pain. That is great that you found something that works more for you. :)
So.. it has only been a month on the drugs, i have to give them a try.

As I mentioned in another post somewhere, perhaps the medication forum?, you might ask about Tramadol. I take a low dose once a day. It gets rid of the burning. For me it also gets rid of the tingling and the little guy running rampant with that map pin. :D Tramadol does a fantastic job of muting the nerve pain for me. Nothing else I've tried works as well...at least nothing else I can take. If gabapentin didn't have the sides for me that it does I'd still be on that. But Tramadol is the next best thing IMO.

Also, read the stickies. There's a lot of info there about supplements and such used in nerve healing. And many of us here can attest to the healing. :)