[canagirl]

Hi

Once again, I'm on here complaining.

I can't move on, I cant accept, I cant be happy with what I have in life.

I'm miserable. My pain is worse all the time. The scary and maddening thing to me right now is when I lie down my body gets really heavy, hot, feels numb, feels like I'm being squeezed all over and burns/ stings really badly. I'm scared.

I know nobody can help it tell me what I'll be like in a year, so I dont know why I'm posting....I am mentally Ill.

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...

[KnowNothingJon]

I am having a hard go too, Canagirl.

I am not sure if you are able to pursue distraction today, but put on a Netflix series you wanted to watch. Do a word puzzle. Read, if tolerable.

My sleep has been better, though not my pain and discomfort.

I can't know how my issues rate to yours, but we are both on roller coasters as far as day to day, that seems fair to surmise.

Don't give up hope. Contact your physician. Did you get your license yet?

I hope you find relief.

Jon

[Jomar]

Have you looked into therapy, many with constant pain and severe health issues need added help to deal with with the emotional side of things..

It might be part of pain management?
If any here have more info that would be great..
Perhaps on the chronic pain forum they might know more about it also..

Talk therapy, maybe hypnosis , or EFT??

[hopeful]

I was going to suggest that Jo*mar. I went to therapy for a while. I found someone who happen to be very knowledgeable in working with patients in chronic pain. She helps me learn how to focus on other things besides the pain. She made meditation tapes for me also.
I'm not saying that I'm always able to do these things but I can often enough.

She also helped me deal with the loss of my old self.
I still have my days of hating all of this. I still have trouble taking my focus off the pain especially at night but I have learned to calm myself down. I learned when I'm stressed and focused on the pain it gets a lot worse.
I turn the tv on or meditate or read. Whatever I can to change my focus !

[Diandra]

Originally Posted by canagirl

Hi

Once again, I'm on here complaining.

I can't move on, I cant accept, I cant be happy with what I have in life.

I'm miserable. My pain is worse all the time. The scary and maddening thing to me right now is when I lie down my body gets really heavy, hot, feels numb, feels like I'm being squeezed all over and burns/ stings really badly. I'm scared.

I know nobody can help it tell me what I'll be like in a year, so I dont know why I'm posting....I am mentally Ill.

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...

Canagirl,
My heart aches for you.
It is awful to feel powerless and at the end of ones rope.
I was where you are now, ten yrs ago.
I was ready to "pull the plug" and had plans in place.
I was so close that when I think of it now, it gives me the shivers to think
of all I would have missed and lost.

What did I do? ....

My regular doc got me to an excellent pain mgmt doc who put me on OxyContin and helped me get my pain under control with pain meds, a therapist who dealt with those in pain and constant monitoring of my pain levels.

I stopped looking at what I COULDN'T do and focused only on what I COULD do which meant every day I forgot about my past life and realized that I had to wipe the slate clean and think of my current life as a whole new life. I got a job volunteering with hospice....I may not be able to do much but, I could sit next to a dying person and read to them or play music or just let them talk so that their family could take a much needed break. I realized, there is always someone worse off than me and I can help that person. It was very gratifying work.
I have no kids but I worked on my relationships with all my nieces and nephews and they became a very important part of my life. While I was working 60+ hrs a week, I rarely had time for them.

I worked very, very hard to be positive in ALL my endeavors, not negative.
So what if I have to use the ride on shopping carts at the market, it is kind of fun and people don't know how to react but they get out of your way.
So what if I have to wear weird clothes because my neuropathy is so bad, it made me more of an individual( had worked in corporate America and had to wear a dull suit everyday).

Being home all the time and being ill is very isolating. I sought out things I COULD do for entertainment/socializing and believe me it was hard. I joined a bookclub and was very honest about my health issues....they welcomed me warmly, were very sweet about my issues and became some of my closest friends. For a very long time, it was my ONLY social outing, once a month I went to book club. I joined these forums and became a part of this community that at times has been my only source of help.

Canagirl....I know you are suffering and frustrated.
Please try to focus on what you CAN do.
I know it is hard to accept pain and accept the new limited,altered version of your life.
Never lose hope, there is always one more thing to try, reiki, so many supplements for pain/etc, meditation or guided imagery, massage or cranial sacral therapy, desensitizing for neuropathy was very powerful for me, hypnosis, a completely alkaline diet, a raw vegan diet with juicing green vegs,
IV Vit c or Glutatione, B12 injections, IVIG, magnetic therapy, chiropractic, physical therapy, so many different prescription drugs, spices/foods that help inflammation like bromelain or turmeric or curcumin, injections like lidocaine or Epidural steroid injections.....Please don't give up. And last but not least, prayer has been very helpful to me. Every time I have been at the end of my rope...prayer has provided answers.

My best to you....you are smart to reach out and please keep doing so...that is what this place is for. Don't give up...someone is always here to "talk" to.


You are in my thoughts and prayers,
Diandra

[Susanne C.]

I really do believe that there is help out there with pain management for everyone. Some combination of medication, therapy, and distraction, that will make it possible to construct a meaningful life.
It may not be the life you had or the life you wanted, but it will be a life you wouldn't have wanted to miss out on.
I am on more medication than I would have thought possible but I am functioning. I can concentrate, play strategy games, read, do what needlework my hands allow, cook, take care of my family. Not the way I used to, my house is a mess, some days I cannot stand at the stove or food shop, there are no extras. It is still more than if I weren't here.
The difference between this and lying on the sofa with an ice block and a heating pad is my PCP's willingness to handle pain management when my neurologist gave up.
For me the combination of MS Contin (morphine) and Gabapentin has worked well. BuTrans patches work well for others. There are so many things out there, and sometimes it takes a combination of meds to get relief. Something will help you. It won't always be like this.

[EnglishDave]

Hi Canagirl,

There is no way you should accept your condition and the life that leads to. That can lead to resignation and deep Depression.

What you need is to find the mental distractions - as have been suggested - to allow you to strengthen your mind and learn to Cope.

I have exactly the same body-wide searing, burning, the numbness, referred pain and heaviness along with my other issues. What keeps me going is daily Meditation, love for my family and - very importantly - this Forum and all the Members here. I learn much, receive more and am entertained greatly just by coming here.

I can tell you that over the next year you are likely to be trialling different combinations of meds and treatments - including Therapy, I hope - and it is possible, even probable, that something will work better than the regimen you are on now.

Be patient and draw on the love of your family and the support you have here.

Dave.

[zkrp01]

Whether you need therapy or actual pain medication or both at the same time what you are doing is allowing yourself time to get better. I was afraid to take the very pills that bought me time to improve. I felt like I was trapped like a rat in the corner until I took Hydrocodone 10-325 by order of my PCP!!! He said, "Don't worry you can get off it later". Sure enough I haven't had any for six or eight months now. Good Luck, Ken in Texas.

[beatle]

Many of us are going through the same or similar and it is overwhelming. In my case, symptoms go one way and then the other...bad days when I can barely walk and "good" days which are not as bad.

Always good advice on NT from others who can relate.

You are not alone.

[Marie33]

[QUOTE=canagirl;1155210]Hi

Once again, I'm on here complaining.

I can't move on, I cant accept, I cant be happy with what I have in life.

I'm miserable. My pain is worse all the time. The scary and maddening thing to me right now is when I lie down my body gets really heavy, hot, feels numb, feels like I'm being squeezed all over and burns/ stings really badly. I'm scared.

I know nobody can help it tell me what I'll be like in a year, so I dont know why I'm posting....I am mentally Ill.

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...


canagirl,
My heart breaks for you too. I know how your feeling , mentally and psychically. This is all scary and maddening, but know you are not alone in this kind of pain. I also have widespread (SFN) roaring tinnitus along with surges of buzzing that I feel in my core and it spreads down to my legs and arms. I get squeezing pains in my legs and arms and burning in my legs and feet, sometimes burn patches on my torso, face and mouth. There are days where I get stinging pain in my feet and toes. So I know what your going through. This is my fourth year of suffern from this awful disease. I cry alot and miss my "old" life. As bad as my pain is , I must tell you that in some ways I am better. (Even my last Punch Skin Biopsy in 3 sites on my leg from 3/2015 came back "normal". As exciting as that is, I know (from doing my own research ) you can have a "normal" Biopsy and still have small fiber neuropathy. My Neuro-muscular Neurologist from Mt Sinai Hospital in NYC, acted "stumped" ..she doesn't know how I could still be having neuropathic pain with a "normal" biopsy. "She doesnt understand the correlation between my pain and Biopsy results"..she says: "MY NERVES ARE HEALING! THE MISSING NERVE FIBERS FROM MY LAST ABNORMAL BIOPSY FROM 7/2013 GREW BACK, NO ROOM FOR FALSE NEG, SHE DID THE PATHOLOGY, MEANING SHE COUNTED THE NERVE FIBERS HERSELF". SO why am I not feeling much better? Are my nerves really healing, and its just going to take more time (?) Am I slowly getting better (Healing) instead of getting progressively worse?... I wish I knew..
You can imagine how frustrating this is for me. So with all of that said
Please don't give up hope. According to a NYC Specialist and my last recent Biopsy , I am getting better!! . SO Canagirl, PLEASE DO NOT GIVE UP HOPE YOU WILL GET BETTER!!
I dont know what meds your taking for your pain. Sounds like you haven't found your right med-combo yet. I hope you have a good Pain Management Doctor and a GOOD Therapist you can talk too. I am still on only 300 mgs of Lyrica. Tramadol as needed. Lidocaine patches for my burning feet. I take Klonopin for my anxiety. I soak my feet in cold water with Epsom salts , that helps. I still try to stay active. I go on the Thread Mill even if my leg and feet are hurting. It doesn't make the pain any worse. I refuse to give into this beast.

I tried to private message you (returned your email). I left you my phone number. I have not gotten a responses from you. It sounds like you could talk to someone that understands what your going through. Please try to contact me. I am here for you to talk too. I hope you feel alittle better soon..Im finding the "healing process is very slow" but it keeps to keep me positive and hopeful. Hope to hear from you soon.
Marie xoxoxo