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Old 07-15-2015, 07:52 PM #11
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I don't have much to add to all the great replies. Get yourself to a pain mgmt doctor...one that will work with you UNTIL you find the right combo that will improve your quality of life.

We are here for you anytime of any day to offer you support and encouragement. That is why we come here...as there is always someone in need of a pick-me-up or info to help put their conditions/symptoms in perspective. It's all about support and it comes in many forms. There are many good suggestions on this thread. Read through them and find what may help you through THIS DAY. Don't focus on down the road...just work on one day at a time.

Please keep us updated.
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Old 07-15-2015, 09:31 PM #12
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I second and third everything just said. Sounds like there are a lot of people here in this fight together and everyone sounds so supportive. Great to see. i am where you are canagirl and can totally relate to the mental exhaustion of it. Where are you on potential therapies?
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Old 07-16-2015, 09:16 AM #13
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Quote:
Originally Posted by canagirl View Post
Hi

I constantly feel like I'm in a bad dream. That this is magically going to go away. I'm in denial. I build up this wall of denial that lasts for a few or a few days then it comes crashing down and I'm hysterical again.

I just want it to end.

I don't know what to di with myself anymore...
All I can say is that I know what you are going through. I felt like my life was a nightmare for a long time. I'd hold it together for a few days at a time despite the pain and then fall apart again. I felt like I was unrecognizable (emotionally) to myself and like lunatic. I couldn't see what the point of living was if a person has to suffer like this.

As far as the wall of denial... I don't think its denial. It's hope. That is very different.
Please be hopeful.
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Old 07-16-2015, 04:47 PM #14
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Healthgirl I don't think I could go on without hope! That word is my motto. So much so that my daughter actually got a tattoo that has the word hope inside a four leaf clover. Trust me that was with no encouragement from me haha!!!
I believe we should all hang on to the hope that one day they will figure this all out and be able to heal us!
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Old 07-17-2015, 08:35 AM #15
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Thanks everyone. The gabapentin is bringing down some types of pain. None of it is gone but dampened. But as u guys know it's not just the pain. It's the literally non stop electrical feelings, vibrating, pins and needles , tingling etc. that really get to me and gabaoentin isn't helping those feelings. These feelings are literally all over every second of the day and never ever go away. They do not wax and wane, they r constant. The only thing that changes is the electrical feeling and vibrating/shaking feeling is very strong when I wake up. It remains very strong until I move around then it becomes less intense.

What meds get rid is these awful sensations?

I have now tried two marijauna strains ( one high in cbd And no thc, one with low thc 11%) and I feel no different. I don't even know that i took it. Anybody with experience here? Do I need to keep giving this a try or would I know after first few sessions whether it was going to help or not?
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Old 07-17-2015, 08:53 AM #16
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I am in therapy and I don't feel like it helps at all. This is my third therapist...
I've tried almost all of the alternative treatments suggested in here. My latest trial has been massage twice a week. And while it feels good during the massage, i think it's actually making me worse. I don't notice any symptoms getting better. Actually the electrical feeling, and pins and needles is worse. Particularly upon wake up. Has she hurt me? I dont know... I had disc herniation at c6 but only slight cord involvement (Dr said it's not causing anything to happen). Did she make that worse? Is my cord now pinched? I don't know... I just don't know what to do anymore....I can't just sit here and do nothing...I need to find something that will make this go away. I need help with the sensory stuff and pain. I can't handle any of it
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Old 07-17-2015, 09:23 AM #17
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Should i go up on gabapentin? Or try something else like lyrica? Im on 1200mg of gabaoentin but don't feel like its helping as much as I want it to. Yes, it's helping the pain but not anything else. Should I need a higher dise of gabaoentin right away? Isn't 1200 a good dose when ur starting? Shouldn't it be helping the sensations too?

It's like my whole body is constantly asleep... Does anybody have that?

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Old 07-17-2015, 10:32 AM #18
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My husband was on 3600 Gabapentin a day at one point, so you can certainly go up, but gradually. Lyrica did nothing for him at all - but everyone is different.

Having said that he doesn't suffer so much vibration/tingling - pain is the dominating feature. Excruciating, can't think, move or function pain. He is now on a Fentynol patch which has helped, but the pain is still always there in the background.

I think you need to get good pain management help, - there is no need for anyone to suffer. Good luck.

Linda
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Old 07-17-2015, 10:54 AM #19
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Quote:
Originally Posted by canagirl View Post
Should u go up on gabapentin? Or try something else like lyrica? Im on 1200mg of gabaoentin but don't feel like its helping as much as I want it to. Yes, it's helping the pain but not anything else. Should I need a higher dise of gabaoentin right away? Isn't 1200 a good dose when ur starting? Shouldn't it be helping the sensations too?

It's like my whole is constantly asleep... Does anybody have that?
Yes, I do have that. My arms and legs are asleep. My legs are so numb I do not really understand how I am able to walk, but I do. I have no small nerve fibers in my feet and lower legs. I cannot tell whether my shoes fit, or how tight to make my leg braces, I have to go by whether they leave red marks. It is frustrating, but you do get used to it, at least I have.
My fingertips are numb and typing this leaves strange sensations in my hands. If I thought about all of the things that don't feel right I would go crazy, but I usually don't think about it .
Your problems developed suddenly whereas mine has been a lifelong progressive neuropathy and I am sure that makes a big difference. You haven't had time to adjust to this, but as you said these things are not exactly painful. It sounds facile to encourage you to pursue distractions but it really should help.
You do get used to these things. Going up to 1800 mg Gabapentin may help some with the electrical zaps, but the numbness, or feeling like your limbs are asleep, is probably something you will have to accept unless a cause is found.
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Old 07-17-2015, 02:33 PM #20
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Last winter my pain doctor talked about a spinal cord stimulator for me but the MRI ended up showing too much damage. I went to a neurosurgeon and he sent me for a melyogram which showed even more damage than the MRI. Six weeks ago I undwent a spinal fusion on L3-4-5. So much pain is gone, but numb & tingling feeling is still there, I still take Gralise (time release nuerotin). It took me almost 5 years of different doctors and tests to get relief. It's still too early to tell what really is going to happen with my nueropathy as I continue to heal but I'm hopeful it continues to improve.

My advice is don't give up, enjoy, relish the good days and do your best on the bad days. One foot in front of the other, keep moving foward has been my motto.

I was lucky with a good pain doctor, and then a great neurosurgeon that listened and looked deeper into my condition.
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My PN is considered Critical Illness Neuropathy. In October 2010 I left for a golf trip not feeling well, woke up in a hospital 21 days later. I was in an induced coma for treatment of Legioneers Disease. First day out of ICU I noticed the pain in my feet and as they say the rest is history.
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