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?
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
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!
The following user gives a hug of support to missi46: hatemyfeet (01-07-2012)
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
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!
The following user gives a hug of support to missi46: hatemyfeet (01-08-2012)
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
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.
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
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.
The following user gives a hug of support to missi46: hatemyfeet (01-14-2012)
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.
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!
[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
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
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!
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
No, you have not upset me. I'm glad you feel you can say out loud how bad it is, because it does help. The burning pain is why I've been bedridden for 6 weeks. I've had neuropathy for 3 years but I could deal with it. This new nerve pain in my feet and hands feels like they've been broken and set on fire. I have literally asked my husband to get an axe or chainsaw and please chop them off. I have moments that I wish I would just jump in the river (we live on the Ohio, it's right out the back door) and just end my misery! It's important to remember this horrible pain should be temporary. I lean on God to try and make it through, but I don't understand why I suffer so much. I don't know what type of insurance you have, but I could not take one more minute of the pain and went to the ER last Monday. They gave me a pain shot and it really helped. People who don't have this type of pain can never understand it. God bless you, I know exactly what you are going through. I'll check my email later today to see if you reply. Hang in there!
Thanks for posting back so fast. I really needed to hear what you said. Two nights ago I was sobbing in pain and could not walk and would have loved a pain shot. I don't think I can go to th er for that kind of thing because of my pain contract. But it is obvious my pain medicine is not strong enough anymore. Don't see the pain Dr for another 3 weeks. I am stuck in this hell. Going to go try to sleep. Have a blessed day sweetie and thank you.
Last edited by hatemyfeet; 01-16-2012 at 07:31 AM.
Reason: spelling
Thank you for your support too. I have not met anyone else with the same type and intensity of pain like mine. I am still waiting for an appt. with the pain Doc, and they said it would be March. My rheumie says he'll give me pain meds until then. I am so sorry for your pain. I wish I could help you. I hope you have some family support, but always feel free to message me Take care! Try to rest if you can!
The following user gives a hug of support to missi46: hatemyfeet (01-17-2012)
The Following User Says Thank You to missi46 For This Useful Post: hatemyfeet (01-17-2012)
Thank you for all your kind and sweet words Missy. (sp?) Last night I had a meltdown. Feet were soooooo red, swollen, and on fire. I was sobbing when my hubby got home. Not crying, but sobbing uncontrollably. I was almost out of my mind in pain. I think the switch to the new medicine is NOT going well. I am going to go back on the neurontin until my next Dr appt. I am going to need lidocaine patches to put on my feet to make the med switch. I am so tired... and I need a shower, BAD. The water hurts me. So, I am in horrific pain and I smell bad. Hahaha. Gotta laugh somehow. I cant thank you enough for your support on here, really, thank you. Funny, this post started with you asking for help and then I did! Hope you are sleeping right now sweetie. God bless you and keep you, Karen
Hello Karen. I've been thinking of you. I have a feeling you are still having a rough time right now. Tell me again what type of doctor is your main doc. I was looking up your disorder and it's so rare it's hard to find info on it! I thought mine was bad! I received an e-mail asking for a sample of my blood for a study. I don't know if I will or not. I wish I could do something to make you feel better.You seem like you have a very sweet old soul. Do people ever tell you that? Take care and you'll be in my thoughts and prayers today and I would like to hear more about your disease treatments etc. Or even about your family. Missi
The following user gives a hug of support to missi46: hatemyfeet (01-18-2012)
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
Well, take care, I hope you a good day and night 
I don't know what type of insurance you have, but I could not take one more minute of the pain and went to the ER last Monday. They gave me a pain shot and it really helped. People who don't have this type of pain can never understand it. God bless you, I know exactly what you are going through. I'll check my email later today to see if you reply. Hang in there!
