Hi, I just saw this now. Oops.
I have tried everything you mentioned!! ( capsiacin cream,magnesium oil,on lyrica)
I was on instant release oxycodone. Now I'm only on the patch and yesterday all that they would give me is clonidine for withdrawals. At my pain clinic they prescribe minimal narcotics. They feel that you should find other ways to deal with any breakthrough pain.
Horrible huh?? However...I am ready to get my mind back again. I feel very dumb..and clouded. Quite sick often..can't explain it. Just not ME


I feel OK today. :)


It seems

Thanks ginnie..it seems that we have similar situations. Trying to get disability is a lot tougher than I had imagined. I do have a lawyer working with me now. Were looking at another 6-7 months before I can go in front of the social benefits tribunal :/
I have klonopin, and it settles me a lot. But again, its addictive, so I try to take just .25 mg every other day as needed. You?
Hugs

Don't give up
 

I totally feel your pain. I have been disabled since I was 24 and I am now 54. I just went through the most terrifying experience of my life. I realized I was having substantial blackouts. Periods of confusion got so bad that I no longer recognized my own name. My verbal output was totally scrambled although in my head I knew the answser I wanted to give it was not what would come out my mouth.

I have CFS, ADD, hypothyroidism, dysthymic disorder, chronic major depressive disorder, general anxiety disorder and of course, B12 deficiency and pernicious anemia which apparently as it has not been treated iin 10 years because of my insurance company denying treatment this is what caused my recent experience and possibly everything else.

At the ER they did a CT scan that proved no dementia or early onset Alzheimers but it took weeks in the hospital and weeks of out patient and advocating for myself to get my B12 levels tested. They are barely over 100. Now that I have an answer I finally have hope but I am here to find out what appropriate treatment should be to insure that I will get what I need to get well.

For me, faith has been what has gotten me thru. During that time that I did not even know my own name and thought it was 1916 I was writing on my daily forms give me B12 shots. Only God could have provided that information when I was in such a condition. It was not done and when I was released I continued to do my own research and got tested. Have faith. Get tested. Be persistent. You do not deserve to be feeling that way at your age, nor that way at mine for that matter.

I pray that you will find the answers and get the help that you need. Do not let the depression eat you alive and do not take no for an answer. Seek doctors that will listen to you and work with you. No one knows your own body like you do. I had to see several doctors over several years to get the tests I needed as I do not present normally. I also do not react normally to many medications. I just found this board and I hope to find some answers here. But, please do not give up. God has a purpose for all of us and you can get well. It just may take a lot of work and a lot of prayer and a lot of persistence and good doctoring.

disability
 

Sorry about your condition. I have two friends who are over 50 that are on disability. They both have severe pain issues, however. Both their doctors could only get them approved by promoting mental health issues. One with extreme anxiety and paranoia, the other with a learning disability and poor socialization skills. The second told me the other day that though he has severe back injuries from doing heavy labor. His doctor said that wasn't going to get him anywhere without the other. Sad to say but if you have to pull the crazy card, we won't judge you here.:D

Paula J-what a heart wrenching story. I'm so sorry. I am, however happy that you gave faith to hold onto and which led you to discover what ails you.
It is such a struggle to find answers. A LOT of trial and error. 2.5 years and counting for me.
Thanks for the encouragement.
I am sitting down with a pastor tomorrow who may help clarify my questions on God.
I lost all faith a long time ago. Praying never helped in any way.
I have 2 close friends in my life who want me to try to find God and have a relationship with him. We will see. I am skeptical.

Still fighting: I have to now wait at least 6 months for a court date to plead my case to the social benefits tribunal. Its infuriating that during this horrifying time, I have zero financial assistance. It is increasingly difficult in Ontario to obtain disability. Even with a hand written letter from my pain doctor, commenting on the neuropathy, cael tunnel, and psychiatric illnesses, they still refused me.:eek:
I have considered a psychiatric hospital countless times, but am afraid of many aspects.
I am tied into a lease at my apartment, for one. I truly am stuck.

The fentanyl has stolen my energy completely. I have hot flashes all day, as well as headaches. On top of residual pain and of course depression, anxiety, OCD, bpd..etc. its unbelievably difficult. Every minute of the day.

Thanks for reading...:grouphug:

Hi Feather bullet
 

I do the same as you with kolonipin, as necessary, and not often. I sometimes put it bed side, then read and fall asleep not needing it. It is addictive. My doctor has watched me on this drug for about 8 months now, and she knows how far I can stretch it. Good for you feather bullet, to take as little as possible. I do this with pain meds too. I had hydrocodone, 90 pills, lasted from Dec. 5th until the last of last month. I think I did real good. I have stronger things, but have not used it at all. Take care of yourself and keep in touch. I am always here to listen. ginnie:hug:

Its extremely tempting to load up on drugs to dull emotional pain for me. But if I did that, I'd run out early and feel worse going through dangerous withdrawals.

Tried hypnosis today to quit smoking and it didn't work
I don't know why I bother trying to do anything anymore.

Thanks Ginnie. You're strong for stretching out pain killers. Its an easy way out.

Hi feather bullet
 

You try, because the option is worse. It is human nature to give it your best shot. Thats all any of us can do. Been down that road of depression a time or two myself, and know how hard it is some days to drag my sorry butt out of bed. You keep giving it your all because you are a good person and truely hope for better results. Have you tried a physiatrist????? Treats the whole person, and may be a route to consider. You need a very compassionte doctor in your life, that can help you, when you feel so down. Depression always makes the pain worse. You are doing find, just talking here on Neuro Talk. this outlet, helps us survive too. Always glad to hear from you. Keep the effort going. I quit smoking cold turkey after two pack 30 year habbit. All it took was my father dying of thoat cancer. That will do it. Sometimes it does take a shock. Don't stop trying to put them down OK? try one day at a time. xxxginnie:hug:

Featherbullet, I joined this site specifically looking for people that were having the same issues that I was having - mine is lingering and worsening pain from an SCS implant back in Nov 30 last year. I did find a few people in my boat, but more importantly, I found a huge group of people that could relate to my pain, frustration, and depression. Knowing and talking to people that can relate to that part (despite the cause of their pain) was a huge help for me. Not a complete help, I admit, but a help. I will tell you something I've been keeping a secret until now. Last Sunday I called the suicide hotline because I snapped and the depression and loneliness took over. They helped me tremendously. Since then, because I really have no one here to turn to, I have learned to utilize the chat rooms. The depression and loneliness came back last night and I jumped into a chat room before doing anything else. I cannot express my thanks for the people that were there last night. Not only did I get hugs and support, they even had me in more back pain from laughing so hard before we were done. BTW, I will be 36 on Saturday - not too old, but probably old from your standpoint! I can still have a long way to go and another 50 or 60 years to live after I get through this bump in the road. Doc says mine will last about 5 years. It's a big, long bump, but it is just a bump none the less. I somehow hope my sharing something here helps make you feel just a little better, because a little better here and a little better there, really does add up! Good Luck, Best Wishes, and a big (HUG)

Just one more thing, maybe to give you an idea of where I am coming from emotionally, I started my own thread not long ago called "5 months since SCS implant and depressed" Not sure if you would care to read it, and I know there is a way to put links to these things, I'm just not computer savvy enough to figure it out! Anyway, keep your head up! (HUGS)

I know your pain
 

I know your pain. I live it every day and have for 5 years now. I am so sorry. I know exactly how you feel. No one understands the physical and emotional pain of wanting to feel better. I wish I had an answer. I really do. I don't understand any of what has happened to me . I don't understand why these things happen but pray that one day I will understand all this and be able to help other people deal with the night-mere of chronic pain. All I can say is I am so, so sorry and that I understand the night-mere you are living right now.

Thank you, all of you how supportive and compassionate you are.
Texan ill find your article and read it. I promise!
Ginnie- congrats on quitting cold turkey like that after that long. Wow!!I'm sorry about your dad. I only smoke about 10 a day. Were trying again next week with the hypnosis to tackle it from an anxiety standpoint.
The weather here in Ottawa is beautiful today,( sunny and 25 degrees), and some positive things have happened! It just goes to show that things can get better. More money seems to be coming in from different sources and that is a huge relief. I'm working with someone from disability employment supports and have a kick *** resume now . I'm training in the family business and I seem to be getting somewhere in that regard. Hooray!
Now, my moods swing violently, but therapy is helping me soften them a little. Little by little, I'm learning how to deal with life more rationally, I still have some addictions , ocd thinking patterns,pain flares ,and deep depressive states..but at least I'm not staying in bed crying.
I am persisting and fighting.. today-anyway. Tomorrow I have a therapy session and a job, so that will get me out of bed. I find keeping busy very helpful.

I have called the crisis line once myself. I also have always found genuine support on here. :grouphug:

Update soon

Hi feather bullet
 

You are inspiration to all of us. You have such a fighting spirit! hang on to that!
It wasn't hard to quit the smoking...ha ha ha... I did out on the east coast when I had a 1,400 mile drive home cold turkey. I cussed and carried on all the way home. Even my very loving cat who loved the car rides, would not sit on my lap. I just used that anger toward myself, as I had gotten into the fix I was in. Mine was cold habbit, not anxiety. I know it is hard to do.
Keep pushing forward. Glad money isn't so tight. That makes alot of difference in our quality of life. ginnie:hug:

I hear you. I get it. You aren't alone. I quit smoking and hit my weight loss goal of 40 pounds last August and then developed SFPN in September. I felt robbed and cheated. Why did I do all this good stuff for myself to have this happen? You are not alone!!

My depression truly knocked me on my butt when I went off the Neurontin. I scared the heck out of my MD. I went on Cymbalta. It took about 2 weeks, but I am better. I have hope. Re: the ice packs. Do you have access to a swimming pool? I get total relief in the water and positive exercise too. I forget my illness when swimming. Maybe this can help you too. Also, yes, its pricey, but I use a cooling pad to sleep from a company called chili technology. Bless whomever invented this. It helps with my back burning.

Love yourself. Respect yourself. Be kind to yourself.

Hi Suzie (my moms name ) :-)
I have ocd as well, so I can't use public pools because I find them akin to large toilets or bathtubs. :/

I'm sorry that you had the misfortune of becoming ill after taking strides towards a healthier lifestyle. Life can be unfair and bad things happen to good people :(

I've tried over 10 anti depressants since my teens and none have worked well enough for me to continue.
Things are harder when you are predisposed or develop depression with the neuropathy. Its an uphill battle it seems.
I'm grateful for this support forum. Its a gift.
Thanks for your comment and support. :hug:

Life of pain
 

:DI am new to this chat room but I too have suffered from neuropothy problems including sensorimotor polyneuropothy, the chronic pain over the years has seemed life threatening over the years but only because I didn't want to live anymore because of the sever pain. I too have been on meds and still am and sometimes it feels like I am not taking any because the pain is so great, the tingly burning feet and legs, the stabbong bone senations, nerve twitches throbbing ponding pain in the legs, sleepless nights etc. but I do have something to have control over and that is the way I choose to survive this life long battle. Yes, sometimes I feel like dying so the pain would stop but I know God has me here for a bigger purpose, I am a mother of 3 grown children 2 of whom just got married in the last year, grandma to 3 grandchildren and wife of the most loving husband. Many days are spent in pain in bed but no matter what it takes I will fight to be able to continue my purpose here in life, to lend an encouragingword to others, to see my childrens smile, to love my husband and to thank God for the little things in life. I was a motived, fun loving do it myself person and the hardest thing was learning to be able to let go and let others but now I have experienced a new meaning of love, I want you all to know there is more to life just in a different way.

I am an athiest. I have never felt gods presence..and I definitely do not believe that "god lets us suffer for a purpose"
What's mine? I have no family. Its not making me stronger..only weaker and constantly wanting to die. If "God" tortures us in hopes of eternal life, then then he is a sadist.
It's a fairy tale! But, whatever gets a person through the day is a good thing in my eyes. It just doesn't resonate with me. I've prayed thousands of times without a glimmer of change over the last two decades.

Moving right along..
Yeah. Having a hard time again...:mad:

Hi Feather
 

I know things arn't easy for you. I know belief can be impossible when you are in pain. thats OK. Nobody here will try to get you to believe in something you don't.
I listened to Steven Hawkins last night. He told about how perfect the universe is. I go from a view point of science. Even the smartest man in the world cannot rule out a divine creator. He goes back and forth believe me. He is the one who has lou gerics disease. Can't move at all, only his eyes. His brain is free however. You are right about one thing, if there is a God as the scientist are questioning, he does NOT want us to suffer and be miserable. That would be a cruel God indeed. Not the one I believe in for sure.
I just hope that things get better for you. I hope your doctors will provide more relief for you. I care feather bullet, and I know you are not happy with your current therapies. Can you get another doctor to help you? ginnie:hug:

I'm an atheist too. Believe too much in science. No way to I believe in any higher being at all, except the force of nature if anything. I don't think that matters at all when it comes to getting support for yourself. I don't want to get too much into it, because I don't want to insult those who do believe in their "god".

Go outside, watch a bird do it's thing, appreciate the flowers growing. Know that they come back year after year even though they die back in winter. They go through hell just trying to live, they die, but their genetic makeup allows them to flourish again in the spring. You can do that too. There are plants that live like 10 months out of the year under snow, but come out for that brief period.

Just because everything is sucky right now doesn't mean you won't blossom later on. Your genetic makeup will allow that to happen, but you have to wait for the snow to melt around you. That snow will melt with the right meds and help from an awesome doctor.

And yeah, I had a period in my life that the pain was so bad and my mental state was so off from the pain I wanted to jump off a bridge. But I got through it. It didn't seem I would until I was past it and I could look back at it.

Thanks Ginnie and Chaos. Sooo much.
I might have offended some people. I'm sorry for that. Obviously I am very angry at how sh**y life has been. I've been blessed with horrible mental illness as well, so I am very very rarely feeling good both physically and mentally. I always have a full plate when it comes to health problems.
I know we can't disprove God, but I am a see it to believe it kind of person. Or at least feel it ! Lol.
I've had so many doctors, that I can't even count. I always seem to be given up on or given bad advice, no hope, have to wait and wait and wait, or am not listened to.I'm now being referred to a rheumatologist . Referrals here take 8-10 months. My pain doc has me on the fentanyl patch which is just awful. Headaches, fatigue, hot flashes, inconsistent pain relief..I asked to change but he doesn't want me having a relationship with pills again, given my mental problems. It really works against me. :eek:
Today I've had the burning pins and needles practically everywhere. Anxiety through the roof, depression, anger..you name it. I don't have many friends because of my situation. I no longer have any men in my life either. I think of online dating and then figure I have nothing to offer. :confused:
I try to get out, work, see friends, family, walk, learn guitar, read books ,etc. But I never feel happy . People make me anxious a lot. I constantly have a tight feeling
in my chest and depressing thoughts. I just want to sleep lately. When I wake up I roll my eyes and say oh great, back to reality...
I'm afraid of being at the doctor too much so I suffer in silence between appointments.
Now I may have tinnitus in my left ear. Great!!

You are an inspiration to me, although I feel like my mental problems compound my situation into one large s**t sandwich lol.
Its hard not to want to give up. I turn 30 this year. I feel like life is already over.
But, I always have a small flame that burns within me, a sense of hope. Something that keeps me wondering if tomorrow something great will happen to get me out of this dark place.
I keep getting out of bed every day, so I guess it could be worse. .
Love feather

Hi Feather
 

You still have that flame inside. That is the spark of life, cling to it. I have felt as you do, depressed, worthless, dealing with alot of loss. I struggle too. There are alot of us here dealing with pain and mental problems. Well with pain, the mental problems just happen. I was DX as bi-polar at 61 years old. Had no idea up until this year. All I know as I lost it a couple of times.

Reading like you do is great. Anything you can do to pull yourself out of the depression helps. Even sitting in the sunshine. I can't say it is easy, but I do have the help I need with a good medical team. I so hope that you can find the people who will listen to you. That is the key to getting out of the rut. If there is any way you can continue to search for medical care, that is what I would tell you. No joke I interviewed 4 pain specialists, until I found that one, who took what I said seriously and responded. There was kindness too. Things got better after I found the right care.

Friends, yep lost those too. You know who are really your friends, when you are in real trouble. Those that ditch you, well, do you need them anyway?????
Those that stick, they are a true gift. I have just a few, who I consider real confidents. No judgement, just compassion. Two, and I feel blessed.
I lost a friend of 15 years earlier this year, as I couldn't stop yelling. One of the times I lost it. I had some stuff to yell about, and sometimes it just has to come out. It was my fault, but my temper just got the better of me. The anger, I still have trouble with too, just like you do.

I stay with Neuro Talk , as the compassion and friendships that develope help to get you through those ruff spots, where all is bleak, and it feels hopeless. Leesa who is here, was the first to help me out. Even went on the chat line to help calm me down. She is awsome.

I am here to talk to anytime feather. We all need someone. I also thought if you post near where you live, someone may know a physician in your area who has what you need. Somebody on Neuro Talk, may know some avenue you have not explored yet. Just keep talking and posting.

You have the divine spark still kicking around inside you. You just have to be stronger than the problems that you face. Get mad about it, you have a right to feel bad and mad. Channel it into something good if you can.

I also have one dear friend of 35 years. He happens to be a psychologist that I dated briefly about 35 years ago! Parents without partners group. I know he would talk to you if you needed someone in that regard. He is the one that got me through the ruff spots.

If you had to list, the things that you need in order of importance, what would they be? If you can tackle just one thing at a time, it lessens the burden.
I sure will do all I can to help you, talk to you, and try to figure out where you might seek help.

In most communities, there are womens centers. They find the help you may need. Maybe have references you have not thought of before.

You are not alone Feather. You can PM me anytime and I will respond to you.
I am an avid reader, insanely so..... I also listen to Bob Dylan alot. We can talk about some good books. Age has nothing to do with friendhship. I want to be in your corner and give you some hope. Religion has nothing to do with it either. Hope is what keeps people going. Have a good night feather. Know that someone cares about you. Let me know what those things are that you need the most. ginnie:hug::Ponder::Zzzz::Scratch-Head::Writting:

I've been going through similar, "only" on the feet since 1999. On good days I can just function. Bad days are heel on wheels. I've been through 3 blocks of 15 sessions of acupuncture that helped a bit, especially with OTHER problems such as chain migraines and back problems but also helped return some feeling to the complete numbness of my feet. this unfortunately turned into a massive over-sensitivity that I've been fighting against for the last 5-6 years.

After having been told, that there was nothing that could be done way back when, I decided to go again to a new neurologist and she was able to determine that there had been a slight degeneration, which she categorized as the good news, since it should have been a lot worse after 14 years. I'll be having a blood work done again with hopes it'll point to something - my pnp is ideopathic. In the meantime she's prescribed 30mg Cymbalta which has had mixed results. Some reduction of pain, but now I've got problems with nausea, dizziness, inability to sleep well at night and tiredness during the day.

Now two things that has been a great help has been my wife, who has been more sympathetic and supportive than I deserve and ... my dog. When I "work" with her (my dog) the oxytocin flows and I can put aside the pain for a little while. The "work" we do is play, tricks, K9freestyle, tug, retriever kisses. And yes, the pain is worse afterwards, but she comes over for chin rubs and that too helps. Dogs are not for everyone, but if you are a dog, cat, bird, goldfish person, the moments of relief I do get I can only wish on those in a similar position, because despite everything, she helps me want to keep going.

Ginnie-you're an amazing woman.. what a sweet soul you are. It sounds like you can really relate to me, and that's so valuable when the darkness takes over.

Things I need in order of importance would be 1-love. That's really all anyone needs.
Others that come to mind I guess are better pain control, therapy,and steady income.

Feel free to pm me from here on in.
I hope that my thread inspired someone to reach out and get support on this forum like I have.
What a wonderful resource. I'm taking things one day at a time. I've had some great days lately that show me life can still be enjoyable. ;)

I cant help but think you need to look after YOU first, then work on the love part...you are a pretty woman, that will come easy once you are OK with yourself first. Work on your health now to build your confidence.

I have been reading this thread from Day1 and you have come along quite nicely (with Ginnies help) :D

As a Canadian (but living in the US) I can feel your pain when dealing with OHIP and socialized medicine.....

Hang in there Featherbullet.....