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

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.

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.

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.
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...

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

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.

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

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)