Hi Blackdove and welcome to HW. Oh, I really hate seeing new people having to join especially young folks like you. But honey, in all reality CP can hit anyone no matter what the age. So, you are not alone in this mess as we do have young people on this forum. Ides gave you some wonderful hints as usual. I too have neuropathy in feet and hands and its awful and I can relate. hen I first was dx'd with it I was put on Cymbalta and once we got the dose correct it gave me a great deal of relief. But after a time, it lost its effectiveness with me. So, then I was placed on Lyrica and it had really helped. Yes, you are on a low dose of Neurotin and may possibly do much better if the dr would start titrating your doseage upwards. I would certainly discuss this with my dr before moving on to a pump because there are many factors with a pump that they don't tell you, I know I am a pump patient. I must be way behind times because I would have never dreamed you could nurse a baby and be on the pain patches and percs. WOW. Pumps are usually resorted to as the last straw.
Don't be so willing to think you will never be able to do many thing with your baby. I don't think personally your dr has you totally where you need to be with meds that could possibly help you a great deal. Pain can be so debilitating but you have to hang on by a thread only if necessary and not give in and fight every day as if it were you were last. Don't give in to pain. Ita a very hard thing to choke down at times no doubt.
You just hang in there and know we are all here for you and behind you 500%. Take care and try to have a lp evening. Hugs, Susie
Thank you all for your kind words and wealth of knowledge. I am sad and glad to not be alone. kttn251977, what was your diagnosis? What test revealed it? I have had MRIs of my full spine and brain to rule out MS. The lumbar showed 2 degenerated discs at L5 and S1. No noticable nerve impingement, but a few small bulges. I see a neurologist for diagnostic purposes and a board certified neurologist with a pain management certification for pain management. I am going to go up to the U fo U in January where they specialize in PN. They will perform a skin biopsy.
PAlady, Thanks for your support. played competitive volleyball and even earned a full scholarship to play in college. All of that jumping and conditioning may have caused me some trouble. I also did fall down a flight of stairs when I was 18, and i hit EVERY single stair with my low back/ tail bone. I was in a lot of pain, but did not seek treatment as I was trying to be a tough athlete. It was very much a NO NO to be injured or in pain. Once I broke 2 ribs and my high school coach "let" me sit out for 1 day. My father and mother have back problems, but not the same type of neuropathy. I have a great aunt who had low B12 levels and pain in her legs. Thanks again!
Frances_2008, Thank you for your support! ow do they find out if it is your brain causing the pain?
straydog and others. I completely understand concerns about breastfeeding and opiods. You are all very sweet to think of my little Stella. We were completely SHOCKED when all of my doctors said that it would be ok and that I did not need to titrate and get off my meds. No one could have been more shocked than me. My husband and I were planning to have a child after the stimulator and off my meds....I know...big expectations. Unfortunately, that is not how it went. Unplanned as she was, she is the BEST. Because I was on the same meds in pregnancy, the breastfeeding really helped withdraw Stella from the exposure in the womb. We were incredibly blessed as she only spent 1 1/2 days longer in the hospital. We are doing everything we can to prevent another baby of ours from going through. I have done a lot of research, spoken with pediatricians, my pain doc, my neurologist, and have called a local hotline which many doctors use when prescribing meds to lactating or pregnant mothers many times. Everyone gave us the go ahead. Stella is thankfully showing no signs of exposure such as lethargy, lack of appettite, etc. I know that she is exposed to these drugs and the situation is less than ideal. That is another reason why I am considering options which reduce the amount of medication in my blood stream. I want more children and I am not going to go about it this way again.
As far as the trial. The stim was inserted 12/01, and they took it out on 12/05. The coverage was great in my legs and not so good in my lower back, but even in my legs, it offered little if any pain relief. My doctor said that it is either a big aha moment of relief or it isn't. If it is not immediately helpful, then it is not right for the patient. I don't know what to think about that. I know he is a very good doctor who was the first in my state to implant the devises, but for EVERY patient to have the same "OMG I feel so much better" instantly? seems like a hyperbole.