I know nobody can help yet I feel the need to post...
 

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...

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

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??

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 !

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

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.

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.

Allowing yourself time
 

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.

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. :grouphug:

Dont give up-Nerves can heal...
 

[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. :hug:
Marie xoxoxo

I don't have much to add to all the great replies. Get yourself to a pain mgmt doctor...one that will work with you UNTIL you find the right combo that will improve your quality of life.

We are here for you anytime of any day to offer you support and encouragement. That is why we come here...as there is always someone in need of a pick-me-up or info to help put their conditions/symptoms in perspective. It's all about support and it comes in many forms. There are many good suggestions on this thread. Read through them and find what may help you through THIS DAY. Don't focus on down the road...just work on one day at a time.

Please keep us updated.

I second and third everything just said. Sounds like there are a lot of people here in this fight together and everyone sounds so supportive. Great to see. i am where you are canagirl and can totally relate to the mental exhaustion of it. Where are you on potential therapies?

All I can say is that I know what you are going through. I felt like my life was a nightmare for a long time. I'd hold it together for a few days at a time despite the pain and then fall apart again. I felt like I was unrecognizable (emotionally) to myself and like lunatic. I couldn't see what the point of living was if a person has to suffer like this.

As far as the wall of denial... I don't think its denial. It's hope. That is very different.
:hug: Please be hopeful.

Healthgirl I don't think I could go on without hope! That word is my motto. So much so that my daughter actually got a tattoo that has the word hope inside a four leaf clover. Trust me that was with no encouragement from me haha!!!
I believe we should all hang on to the hope that one day they will figure this all out and be able to heal us!

Thanks everyone. The gabapentin is bringing down some types of pain. None of it is gone but dampened. But as u guys know it's not just the pain. It's the literally non stop electrical feelings, vibrating, pins and needles , tingling etc. that really get to me and gabaoentin isn't helping those feelings. These feelings are literally all over every second of the day and never ever go away. They do not wax and wane, they r constant. The only thing that changes is the electrical feeling and vibrating/shaking feeling is very strong when I wake up. It remains very strong until I move around then it becomes less intense.

What meds get rid is these awful sensations?

I have now tried two marijauna strains ( one high in cbd And no thc, one with low thc 11%) and I feel no different. I don't even know that i took it. Anybody with experience here? Do I need to keep giving this a try or would I know after first few sessions whether it was going to help or not?

I am in therapy and I don't feel like it helps at all. This is my third therapist...
I've tried almost all of the alternative treatments suggested in here. My latest trial has been massage twice a week. And while it feels good during the massage, i think it's actually making me worse. I don't notice any symptoms getting better. Actually the electrical feeling, and pins and needles is worse. Particularly upon wake up. Has she hurt me? I dont know... I had disc herniation at c6 but only slight cord involvement (Dr said it's not causing anything to happen). Did she make that worse? Is my cord now pinched? I don't know... I just don't know what to do anymore....I can't just sit here and do nothing...I need to find something that will make this go away. I need help with the sensory stuff and pain. I can't handle any of it

Should i go up on gabapentin? Or try something else like lyrica? Im on 1200mg of gabaoentin but don't feel like its helping as much as I want it to. Yes, it's helping the pain but not anything else. Should I need a higher dise of gabaoentin right away? Isn't 1200 a good dose when ur starting? Shouldn't it be helping the sensations too?

It's like my whole body is constantly asleep... Does anybody have that?

My husband was on 3600 Gabapentin a day at one point, so you can certainly go up, but gradually. Lyrica did nothing for him at all - but everyone is different.

Having said that he doesn't suffer so much vibration/tingling - pain is the dominating feature. Excruciating, can't think, move or function pain. He is now on a Fentynol patch which has helped, but the pain is still always there in the background.

I think you need to get good pain management help, - there is no need for anyone to suffer. Good luck.

Linda

Yes, I do have that. My arms and legs are asleep. My legs are so numb I do not really understand how I am able to walk, but I do. I have no small nerve fibers in my feet and lower legs. I cannot tell whether my shoes fit, or how tight to make my leg braces, I have to go by whether they leave red marks. It is frustrating, but you do get used to it, at least I have.
My fingertips are numb and typing this leaves strange sensations in my hands. If I thought about all of the things that don't feel right I would go crazy, but I usually don't think about it .
Your problems developed suddenly whereas mine has been a lifelong progressive neuropathy and I am sure that makes a big difference. You haven't had time to adjust to this, but as you said these things are not exactly painful. It sounds facile to encourage you to pursue distractions but it really should help.
You do get used to these things. Going up to 1800 mg Gabapentin may help some with the electrical zaps, but the numbness, or feeling like your limbs are asleep, is probably something you will have to accept unless a cause is found.

Last winter my pain doctor talked about a spinal cord stimulator for me but the MRI ended up showing too much damage. I went to a neurosurgeon and he sent me for a melyogram which showed even more damage than the MRI. Six weeks ago I undwent a spinal fusion on L3-4-5. So much pain is gone, but numb & tingling feeling is still there, I still take Gralise (time release nuerotin). It took me almost 5 years of different doctors and tests to get relief. It's still too early to tell what really is going to happen with my nueropathy as I continue to heal but I'm hopeful it continues to improve.

My advice is don't give up, enjoy, relish the good days and do your best on the bad days. One foot in front of the other, keep moving foward has been my motto.

I was lucky with a good pain doctor, and then a great neurosurgeon that listened and looked deeper into my condition.

Which delivery method are you using for the marijuana?

Vaporizing

Hi canagirl
Sorry to hear you're still having such a hard time with this. Thinking of you and hoping you find some relief soon.

Remembered another post I read which may interest you. It's about using Taurine to help relieve neuralgia/neuropathy symptoms. There's not a lot of detailed info there but it may be worth researching further.

http://neurotalk.psychcentral.com/thread221688.html

All the best.

Added later: canagirl - I came across another website which you might find useful. It's rather long-winded but there may be something helpful in there.

Here's the link: http://www.holistichelp.net/dysauton...sfunction.html

Hi Canagirl,

I am very sorry for your discomfort and for your personal anguish. We are dealing with some truly difficult conditions.

I want to share with you: After 30+ years of trying to cope using both CAM approaches and allopathic medicine, seeing some great researchers, etc., I had resorted to trying medical marijuana. In my case, I was left with a lengthy fogginess and a deepened sense of hopelessness. That's how I had reacted. The temporary relief sense of "relief" was strange in sensation and was not worth the lengthy sense of a hangover. Just my experience.

My pain and other symptoms, and any related sense of hopelessness, also gets worse with stress, especially chronic stress. Is there chronic stress in your life? Acute stress?

Have you been treated for depression?
At one time or another, we all feel varying degrees of hopelessness and/or depression while trying to cope with chronic illness(es) and chronic pain.

I will share with you:

I just went through a couple of years of intensive/chronic stress. It was wearing me down more than I knew at the time. I finally hit a "breaking point" and could not deal with the stressor any longer. By the time I had gotten to that point, it had gone on too long! I should have been more honest with myself long before that time. I was able to put an end to the immediate stress, once I had realized the degree of stress involved and what it was doing to me. I have spent the past 6 months trying to recover from exacerbated symptoms, especially severe pain and an associated sense of isolation, as well as experiencing a fluctuating sense of hopelessness. Chronic stress exacerbates the whole picture, all aspects of the condition(s) and recovering often takes a lot of time.

I hope I have learned to more carefully guard against chronic stress.
I have enough to cope with without taking on additional stressors.

Individual and/or group therapy may be very helpful to you?
If possible, getting together with a group of like-minded people might also be helpful.

What's most important is:

What do you find helpful?

So glad you are writing with honesty and are reaching out!:hug:

I hope you will continue to reach out!

To our Healing!:grouphug:

DejaVu

DejaVu,

Thank you for sharing. You write clearly, with the wisdom of experience.

Dave.

Hi Dave,

Nice "meeting" you. :)
My intent is to be open and supportive/helpful.
I am glad you feel there is clarity. I've been concerned about clarity due to pain and related fogginess, etc.
I am happy to share here.
Hope to see you around the forum! :)

To our healing!
DejaVu