I need some hope.

tashabree · 06-02-2013, 05:54 PM

Dear fiestlady, I totally understand I find myself crying all the time and I also try to put on a happy face for my family. I know it is so hard. Its frustrating knowing you have so many goals and things you want to do and can't do them. I look at my legs and feet and I feel like they aren't my own. I try and remind myself sometimes that it will be ok to have faith in God and know he will not put more on us than we can bear. So, if that is the case we must be pretty strong, right? It is so comforting to know that someone else feels the way I do, and understands. Im only 29 and had just got a job offer as a nurse at the local hospital and had to turn it down because of my neuropathy it really upset me that I had worked so hard for something and now everything has changed and my body has failed me. Now I find myself confused and wondering where do I go from here.

tashabree · 06-02-2013, 06:02 PM

Hi katie, Dont ever feel like your complaining or that your pain and what your going through isn't just as important as anyone elses. Everyone who is going through this understands and I promise you your not alone. I found that out today your story has helped me and I thank you for that. I also have been told this too shall pass but it doesn't feel like it and I know it wont I guess we just have to figure out how to live with it. I just don't know how to yet and like you said the medicine feels like it has stoped working and my doctor doesn't seem to want to give me pain management and I stay in tears I hurt so bad I don't know what to do either.

Quote:

Originally Posted by Katie O

I'm not sure if this will add onto my previous thread. I just can't seem to get the hang of using Neurotalk. I respond to someone and then can't find it the next day. Maybe its the 1200 mg of Neurotin that keeps my mind so clouded. I'm finally over the withdrawl from Lyrica. Thought I was dying because I quit it cold turkey. I started taking something called Fast Start nerve health support made by Plexus. It is so expensive but I am so desperate to get some relief from the burning, pain and stiffness in my feet and legs. At first I thought it was helping but now i'm not so sure but I'm afraid to stop it. I've been up the past few nights with so much pain. Everytime I call my doctor she just increases the Neurotin 300 more mg which seems to help for about 5 or 6 weeks and then it's like the Neuropathy is trying to get ahead of the medicine and the pain is back again. I know you can take 3000+mg of Neurotin but I feel like a zombie now and can't imagine 3000mg effects on me. Where is the quality of life when you have to deal with this everyday? When in the past and times were tough I always thought of what my dear mother told me "This, too, shall pass." But this is never going to pass it is only going to get worse because there is no cure. I feel so guilty complaining like this when I know there are so many people out there suffering much worse than I am. I have benn reading about B12 and am going to try that route. There has to be something beside the pain pills to deal with this. Thanks for listening, it just helps to vent sometimes. Blessings, Katie O

ginnie · 06-02-2013, 06:53 PM

I do understand about getting sick young. I was 29 too, when I got an auto immune disease. I would have been a teacher. I am sorry that happened to you. I hope some window of opportunity happens for you, even if your body isn't behaving. Lets hope this PN gets some attention in the medical field, and can present some hope for all with PN, RSD, Fibro and the ones that are Neurological in nature. Seems like there are alot of us. Take care. ginnie

Katie O · 06-05-2013, 03:27 PM

Quote:

Originally Posted by FiestLady24

Hi Katie, I feel for your pain. I am going through the same thing. Im very frustated with the Doctors too. I also go through spurts of crying spells and sadness. I get very down and discouraged when I see other women my age living an acvtive lifestyle because it just reminds me that my body has betrayed me. People say get pro-active. Its hard when your in pain all the time. It makes you very low energy. I try to put a smile on my face day for my family. But I have days inside that I just want to drop to my knees. I wish I had more people to talk to in the flesh. I love being around people. I want to see other people just like me, maybe it would be more hopeful. Hang in there Katie.

Thank you for responding. It makes me feel as if I'm not alone and other people do understand. I am feeling somewhat better since the dr increased my Neurotin. The pain is more undercontrol but the medication just makes you (as one reader put it) "stupid." LOL And that really helped me explain how I feel on this drug. My head is in a fog and I do "stupid" things. But now I smile when I mess up and know I am not alone and just keep going. I hope you find relief for your pain. Blessings, Katie O

Katie O · 06-17-2013, 10:19 PM

Hello to all, here I am again. Couldn't sleep because of the pain and the burning because of the neuropathy. The burning is the worst. I stand in my barefeet on the ceramic tile floor and I get some relief but it is short-lived. I reread all of your replies because it really helps to know I'm not alone in this and someone cares. I've had some really good days lately but my dr wants me to increase the gabapentin to 1500 mg to keep ahead of the pain. I know I need to keep the pain under control but I make such stupid mistakes on the gabapentin (especially when I am very tired or stressed.) Nothing of serious consequences just dumb remarks etc. I ask my dr about alzheimers but she said confusion is a definate side effect of the drug. Soooo, one day at a time, I guess. My son went for acupuncture treatments for his back pain (when nothing else worked except strong pain meds) and is doing great. I wondered if anyone out there has tried acupuncture for neuropathy? By the way, the expensive pills I ordered,which I mentioned previously, didn't work for me either. I have found that by totally eliminating sugar from my diet has been a great help. Also,limiting my intake of processed carbs helps me. Getting tired, better try and get some sleep. Blessings, Katie O

mrsD · 06-18-2013, 07:52 AM

If your burning is confined to specific areas like the feet, do try
Biofreeze for it. I find this will stop burning for hours. It does wear off eventually, however. I only apply it on the tops of the feet and a little up the ankle.

You can find it now on Amazon for affordable prices (some retail outlets can charge double Amazon's price.)

http://www.amazon.com/BIOFREEZE-Pain...=biofreeze+gel

Sallysblooms · 06-18-2013, 12:20 PM

If you have an integrative MD, you can ask about the Far Infrared Hothouse Dome and fir pad. They are amazing!

Of course I take the supplements needed. Diet is key also.

ginnie · 06-18-2013, 01:59 PM

[I have biofreeze and also a compounded formula. Pain patches as well that have lidocane. B12 shots for the last year, seem to help with the pins and needles. cool water not cold helps too. I am sorry you have this condition. PN is awful. Hope you can get some more relief. I could not take that medicaiton as it made me not just loopy but super depressed. I am now trying some mushroom extract. There was an article in Discover magazine this month about this. PN and auto immune problems were addressed by the use of the ancient remedies. Maybe check out the ariticle. Have a good day Katie, hope you find some relief. ginnie

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