It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Neuropathy Message Board
Post New Thread   Reply Reply
LinkBack Thread Tools
Old 01-05-2012, 09:03 PM   #1
Junior Member
(female)
 
Join Date: Jan 2012
Location: PROCTORVILLE
Posts: 28
missi46 HB User
HELP Severe Neuropathy

I am not new to chronic illness, but I am new to neuropathy. The pain levels are daily over a 10 and the pain meds don't help much. I am sleeping in our extra bedroom at night so my husband doesn't have to hear me cry myself to sleep. If pain meds don't work, is there anything else?

 
Reply With Quote
Sponsors Lightbulb
   
Old 01-07-2012, 04:51 AM   #2
Senior Member
(female)
 
hatemyfeet's Avatar
 
Join Date: Jan 2012
Location: Tennessee
Posts: 128
hatemyfeet HB Userhatemyfeet HB Userhatemyfeet HB Userhatemyfeet HB Userhatemyfeet HB User
Re: HELP Severe Neuropathy

Hi Melissa, I have peripheral neuropathy and RSD. It is in both of my feet, ankles, knees, hands, and is going up both arms. I see a neurologists and a pain doc too. There are LOTS of med you can take for both that are not narcotic. I do take opiates for both, but I also take nortriptyline and neurontin for them as well. I don't know what type of doctor you see, but they should be talking to you about lots of types of drugs you can take to help. I really understand what you are feeling and going through! Don't give up! Talk to your doctor about everything you are feeling and going through. They should be trying to help you with more than just pain pills. Pain pills are not enough. I am so sorry you are having such a awful time of it...I know just how much this sucks. Big time. Hang in there and talk to your doctor. Hope that helped even if just a little. *gentle hugs* Karen

 
Reply With Quote
Sponsors Lightbulb
   
Old 01-07-2012, 10:23 PM   #3
Junior Member
(female)
 
Join Date: Jan 2012
Location: PROCTORVILLE
Posts: 28
missi46 HB User
Re: HELP Severe Neuropathy

Thank you for the post. I'm currently taking Elavil, Lyrica and Cymbalta and Percoset and still 100% disabled from pain. My rheumie is going to refer me to a pain doc, my only hope is to get an appt. soon. Oh, and I also took neurotin, just didn't work. Thank you for answering me. Sometime just a kind word really helps!

 
Reply With Quote
The following user gives a hug of support to missi46:
hatemyfeet (01-07-2012)
Old 01-07-2012, 11:14 PM   #4
Senior Member
(female)
 
hatemyfeet's Avatar
 
Join Date: Jan 2012
Location: Tennessee
Posts: 128
hatemyfeet HB Userhatemyfeet HB Userhatemyfeet HB Userhatemyfeet HB Userhatemyfeet HB User
Re: HELP Severe Neuropathy

Hi Melissa, I hope you get into a pm Dr fast. Try to find one that knows a lot about your illnesses. I know for me, it has been a nightmare trying to get a good one that knows about RSD. Really sucks. I am awake now because of the burning pain. Can't sleep because of it. RSD and neuropathy have A LOT in common so I can hardly ever tell which one is acting up! Boy I really hate these diseases...sleeping is a nightmare, so I always end up napping during the day half the time. I'm sure you can relate all to well. Are you awake now because of symptoms? I sure hope not. Hope you are having a painfree (or close to it) evening. *gentle hugs* Karen

 
Reply With Quote
Old 01-08-2012, 12:43 PM   #5
Junior Member
(female)
 
Join Date: Jan 2012
Location: PROCTORVILLE
Posts: 28
missi46 HB User
Re: HELP Severe Neuropathy

Yes, I was up till 2am. I hate whenever I go to a new Doc and I have to tell them I have Behcets. They usually have never heard of it and I can see that they don't really believe me because it's so rare . It's ironic, we have lovely new neighbors who are both docs and when they found out I had Behcets they constantly ask if they can help me with my kids and ask about my treatments. The reason why is they just moved here from Pakistan where Behcets is not so rare. I am sorry you were up too. What is RSD? I would love to hear all about it and what symptoms you have. Is it really rare too? Sometimes I can't answer posts very quickly. I'm bedridden a lot now, but we have 4 kids who still needs moms attention so I talk to them alot!

 
Reply With Quote
The following user gives a hug of support to missi46:
hatemyfeet (01-08-2012)
Old 01-09-2012, 12:09 AM   #6
Senior Member
(female)
 
hatemyfeet's Avatar
 
Join Date: Jan 2012
Location: Tennessee
Posts: 128
hatemyfeet HB Userhatemyfeet HB Userhatemyfeet HB Userhatemyfeet HB Userhatemyfeet HB User
Re: HELP Severe Neuropathy

Hi Melissa, wow... I am so sorry that you are going through all this.I just read a little about Behcets disease. Bless your heart sweetie. How do you manage with 4 children?? AND you have severe neuropathy?! I will pray for you and your familiy. I have never described RSD to anyone in a clinical way before, so excuse me if I don't get it all right in the "diagnosis" type of way. It is a disease of the nerves that can come on from a simple sprain or even a toe stub! I got it from duel knee surgeries last Jan and march. It is horrific as far assymptoms go. Thereis no cure, and yes, it is considered a rare disease too. Mine started in my right foot and then spread to the left foot, ankles, knees, both hands, and is now going up both arms. I have severe edema, burning pain, stabbing pain, skin color changes, some sensitivity to touch, bizarre hair and nail growth and then NO growth at all for months, and awful bone ache type pain. My toes are starting to curl under for some weird reason. They are staying that way. I am having a harder time walking. Boy, that was long winded. I have more symptoms, but they are too many to list. If you have time or get bored, you can always google RSD and it will tell you about itbetter than I can. It is hard to diagnosis for doctors, so it runs amok in your body before they figure it out and then it is usually to late to get treatment that will halt your symptoms. That's what happened to me. Anyway, enough about that, lets talk about something happy now. How old are your children and what are theirnames? I never had children...I had endomitriosis that ruined any chances for that. It was just not in my cards I suppose. I am 44 yrs old and I have had plenty of time to grieve over it. I am lucky to have a wonderful husband that excepts me for all my medical awfulness. What are you gonna do? We have a cat. Hahahahahaha! I cant sleep again, right foot is swollen up, bright red, and super painful. Hate it for both of us Melissa. I hope you are sleeping right now and having a better time of if than I am. Let me know when you find a PM doc that is willing to help you. I am in your circle sweetie and I sure hope you get in with someone fast. *gentle hugs* Karen

 
Reply With Quote
Old 01-09-2012, 06:45 PM   #7
Junior Member
(female)
 
Join Date: Jan 2012
Location: PROCTORVILLE
Posts: 28
missi46 HB User
Re: HELP Severe Neuropathy

Oh my, RSD sounds horrible too! I can imagine how it must affect your life. I'm only forty too and sometimes I feel like Behcets has stolen a lot from me. Then God reminds me of all the good in my life and gives me hope that I will be set free someday! You mentioned not being able to have children. My best friend has not been able to have children and it has been really hard on her. If I had not been so sick I would have been a surrogate for her. I am blessed with a wonderful husband and four really good kids; Hannah 15, Sarah 14, Becca 12, Ethan 10. They do bring a lot of joy to my life and they are all so different. Hannah is in musical theater, Sarah plays volleyball and is in the gifted class, Becca is very intelligent and also in theater, Ethan likes donuts and video games I often say that the only bad thing in my life is the disease, so I have no right to complain. Do you work? I can't imagine that you can. What sort of cat do you have? My mom used to breed Main Coon Cats, those things are enormous! We have 2 house rabbits and 2 parakeets. As to how do I do it? Sometimes, like now, I just don't. My husband picks up my slack and the kids do to. I often have guilt about it, but what can I do? Well it's nice to chat with someone who understands, God bless you! I'll pray for you and your family as well.

 
Reply With Quote
Old 01-10-2012, 04:25 AM   #8
Senior Member
(female)
 
hatemyfeet's Avatar
 
Join Date: Jan 2012
Location: Tennessee
Posts: 128
hatemyfeet HB Userhatemyfeet HB Userhatemyfeet HB Userhatemyfeet HB Userhatemyfeet HB User
Re: HELP Severe Neuropathy

Hi Melissa, I'm really glad we have each other on here. Sometimes I can feel pretty alone in all my diseases. Your children sound so beautiful, you are so very blessed. I know it can be hard sometimes to post back quickly on here, so don't ever worry about that. I LOVE Maine coon cats! And tabbybobs too. Our Kitty (Lilly), is a domestic shorthair (mutt). She is black and white and her pattern is called Tuxedo. We love her to death. I hope you have a good day with your pain and I will pray for you and your family too. *gentle hugs* Karen

 
Reply With Quote
Old 01-12-2012, 06:51 AM   #9
Junior Member
(female)
 
Join Date: Jan 2012
Location: PROCTORVILLE
Posts: 28
missi46 HB User
Re: HELP Severe Neuropathy

I know what you mean about feeling alone in the disease. I have only met one other person with Behcets and she had a stroke with it. About 3 yrs back I had a TIA and my right leg was weak for about a year, better now though. I did not respond sooner because I went to the ER (1st time for pain . They gave me some pain meds. I am doing better today. It's really funny you have a cat named Lilly. My mom has a cat named Lilly. She was a feral cat (my mom feeds them) and Lilly was very friendly so mom took her in. She was the runt so she's small and she's a mutt too I like cats, but two people in our house are allergic. Also they would try to eat our bunnies and parakeets! We keep our bunnies in the house so the coyotes can't get to them. Well, take care, I hope you a good day and night Hugs, gentle ones.

 
Reply With Quote
The following user gives a hug of support to missi46:
hatemyfeet (01-14-2012)
Old 01-12-2012, 10:56 AM   #10
Senior Member
(female)
 
cocoa100's Avatar
 
Join Date: Sep 2011
Location: PITTSBURGH PA
Posts: 151
cocoa100 HB Usercocoa100 HB Usercocoa100 HB Usercocoa100 HB Usercocoa100 HB User
Re: HELP Severe Neuropathy

Quote:
Originally Posted by missi46 View Post
Thank you for the post. I'm currently taking Elavil, Lyrica and Cymbalta and Percoset and still 100% disabled from pain. My rheumie is going to refer me to a pain doc, my only hope is to get an appt. soon. Oh, and I also took neurotin, just didn't work. Thank you for answering me. Sometime just a kind word really helps!
have you tried nortriptyline for the nerve pain, also you calm the pain at night by adding vibration. if you have a vibrating pillow put that on your feet i will help calm the nerves at least it works for me.

good luck and god bless
keeping stong cocoa

 
Reply With Quote
Old 01-12-2012, 12:58 PM   #11
Junior Member
(female)
 
Join Date: Jan 2012
Location: PROCTORVILLE
Posts: 28
missi46 HB User
Re: HELP Severe Neuropathy

Quote:
Originally Posted by cocoa100 View Post
have you tried nortriptyline for the nerve pain, also you calm the pain at night by adding vibration. if you have a vibrating pillow put that on your feet i will help calm the nerves at least it works for me.

good luck and god bless
keeping stong cocoa
What type of medicine is nortrytaline? I do take amytriptaline, it may be the same thing. I'll try the vibration, we have a backmassager. Thanks!

 
Reply With Quote
Old 01-12-2012, 01:15 PM   #12
Senior Member
(female)
 
cocoa100's Avatar
 
Join Date: Sep 2011
Location: PITTSBURGH PA
Posts: 151
cocoa100 HB Usercocoa100 HB Usercocoa100 HB Usercocoa100 HB Usercocoa100 HB User
Re: HELP Severe Neuropathy

[Nortriptyline is adepression a group of medications called tricyclic antidepressants. i tried the amytriptaline but it kept me awake all night sothey switch me to the nortriptyline

 
Reply With Quote
Old 01-14-2012, 10:56 PM   #13
Senior Member
(female)
 
hatemyfeet's Avatar
 
Join Date: Jan 2012
Location: Tennessee
Posts: 128
hatemyfeet HB Userhatemyfeet HB Userhatemyfeet HB Userhatemyfeet HB Userhatemyfeet HB User
Re: HELP Severe Neuropathy

Hi Melissa, I wanted to tell you about my PM Dr appt today. He is starting me on a new (new to me) nerve pain med called topamax. Have you ever tried it before? I will keep you posted on how much it helps or makes it worse. Have a blessed weekend. *hugs* Karen

 
Reply With Quote
Old 01-15-2012, 11:18 PM   #14
Junior Member
(female)
 
Join Date: Jan 2012
Location: PROCTORVILLE
Posts: 28
missi46 HB User
Re: HELP Severe Neuropathy

I'm not familiar with it. I hope it works well for you! I'm up tonight because I keep having nightmares. I have no idea why. Keep me posted on it and good luck! Hugs to you too!

 
Reply With Quote
Old 01-15-2012, 11:44 PM   #15
Senior Member
(female)
 
hatemyfeet's Avatar
 
Join Date: Jan 2012
Location: Tennessee
Posts: 128
hatemyfeet HB Userhatemyfeet HB Userhatemyfeet HB Userhatemyfeet HB Userhatemyfeet HB User
Re: HELP Severe Neuropathy

Hi Missy, bad night. Really bad night. The burning pain in feet, ankles, and hands has pushed me over the edge. Have not slept more than eight hours in two days. The new med topamax will take weeks to really kick in for full effect and that's if it helps at all. Guess I just need to rant a little. I am really feeling sorry for myself right now...if ONLY I could just get the neuropathy in check, maybe I would not want to cut my feet off because of the RSD! Sorry... cant seem to stop crying or hating this life. Do you have burning pain from neuropathy? I pray you don't. All my other types of pain can be helped at least a little with pain meds but not this burning. Wow... I am sorry I just freaked out in this post. Really just needed to vent. Hope I didn't go to far or upset you. I hope you are doing good and having an easier go of it than I am right now. Thanks so much for listening and again, sorry about the melt down. *gentle hugs* Karen

 
Reply With Quote
Reply Reply

Similar Threads
Thread Thread Starter Board Replies Last Post
Help I cannot wait candeecrystal Neuropathy 9 07-30-2008 06:27 PM
I suspect I have Peripheral neuropathy - what do I DO? Help please ~ I'm ONLY 29! mayoclinicmommy Neuropathy 7 07-21-2008 07:23 AM
Does neuropathy cause muscle atrophy? Please Help Antieli Neuropathy 1 09-09-2006 09:39 AM
Please help . what are symtoms of Neuropathy 4everscared Neuropathy 6 05-14-2006 01:53 PM
Neuropathy help here IBS Free Neuropathy 4 04-04-2006 12:07 PM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 08:36 PM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!