Still not coping. Can't stop the bad thoughts
 

I can't cope. I'm so weak. All I do is cry. I can't find any peace or rest because to stop moving means excruciating pain. The nortriptiline isn't working ( maybe a bit but nowhere near enough). I feel like I must have compressed nerves all over so I try stretches and massaging a bit but then I burn like crazy for days. I feel like I have to try and uncompress these nerves ( I have to do something that to try and heal) but it just causes pain later. Gabapentin is low dose right now. Just on it for a day so far. Dr lowered starting dose to 100:100:100 for 4 days then 100:100:300 for four days then up by 100 every few days after that. Told to stop nortriptiline because of my blurry vision ( which I had before the med but it's WAY worse now). Start weaning tonight. Just keep thinking I can't live much longer. Family days that's selfish of me to say and think. But I think everyone will be better off without me. I am traumatizing my son with all the crying. He doesn't get the attention and love he deserves because I am so sad and in so much pain. He would be so much better with another mom. Everybody could go back to living normal lives after they grieve for me. I know u guys understand and wouldn't say that I am selfish. I think my family is selfish for trying to make me stay here and endure this excruciating existence.

I'm sorry you're feeling so depressed with all this pain. Please contact your counsellor or your doctor and tell them how depressed you're feeling.

Please believe me... your son would not be better off with another mother!

It's concerning to me that you're about to taper off your Nortriptyline while you are feeling this way and that makes me wonder if your Doctor is fully aware of how bad you're feeling to suggest this to go ahead tonight. Personally I think it is really important that you verbalise to your Doctor the thoughts you've written here in your post.

Hey girl,

I am sorry you are going through so much. I understand pain and frustration and despair. I even understand being so exasperated with the pain that you just want it to be over. But I would never say that is okay or that your family is selfish for wanting you well. The loss of you would devestate them for years to come and cause an ongoing tragedy the consequences of which you cannot begin to imagine.

I don't remember if you had a therapist or not. There is no reason to struggle with this burden on your own. Crying all the time is exhausting and robbing you of precious energy needed for other things. If you do have a therapist and are getting nowhere in therapy be frank about that and consider finding someone who can help you. Alternate approaches like hypnosis or EMDR may be helpful. Sometimes talking about a thing can only get you so far.

On a physical note. I would encourage you to be careful of doing things that increase your symptoms. Nerves are meant to stretch but only so far. If there is compression and you are over stretching or increasing pressure with massage that is counterproductive. Do you have access to a pool? Relaxing your full body and gently working it can be very beneficial. Go easy on yourself and remember to Hold Fast during the storms.

Sending Healing Love, Littlepaw :hug:

I know it seems like this will never end, but you have JUST started the Gabapentin. You need to give it time to work. It is definitely a low dose, so it will take a little longer then most. But hopefully you will start to have relief once you get up to an adequate dose (like 300 mg three times day).

Just hang tough for a little longer and hold on to optimistic thoughts now that you have finally start the Gabapentin...that it will work.

I am so sad for you!! Get yourself admitted into a hospital for your depression. Tell them you are suicidal!! Once you are admitted, they will have no choice but to address your pain!! Make sure that it is the best hospital in your area. I had to cross state lines to have my issue addressed. Desperate times call for desperate measures. Just do this!! It worked for me. God Speed!!!

Canagirl,

I agree wholeheartedly with Coriny. You are not coping with the onset of all this pain, and the Depression is now dangerous to your health. You MUST get help now. Your loss would devastate your son and the rest of your family - read our Survivors of Suicide Forum, that will level your mind.

I have been on this extreme Chronic Pain Journey for 25 years, ramping up to it for 11 more. And my Depression is a lifelong Disorder which, yes, I have been Hospitalised for.

Now, at this low point, for yourself, for your son, for your family, go and get that help.

Dave.

Canagirl,
Agree with everyone.
Maybe call your GP and tell him you are feeling hopeless and suicidal and would he please help you.
Many of us have been there....truly. We get it. Please get yourself help or ask a family member or dear friend to call a local suicide hotline with you.....they will help you....You are not alone.
Taking your life seems like an option when pain and anxiety and your horrible neuropathy are out of control but THERE IS HELP. You just need to get to the right pain mgmt doc. I felt exactly the same before I got good pain control....Please dear one....reach out for help....no one is better off without you.
You are in my prayers,
Diandra

http://www.suicidepreventionlifeline.org/

I can't think of anything to say that hasn't already been said in the previous posts. All good info.!!!!
Please listen and get help, go to the ER and tell them you are contemplating suicide.

Several people have responded with EXCELLENT suggestions. I am concerned as there has been NO response from you in over 24 hours.

I am hoping it is because you have sought help. Please let us know how you are tonight.

Thanks

I'm still here, thanks for ur concern. It's not only the pain I can't cope with it's the vibrating and twitching. It feel like millions of snakes or worms are constantly moving inside every part of my body hundreds of times a minute. Someone mentioned gabapentin helped their twitching I sm hoping it will r something for me. So far, nothing. 😞

I appreciate the concern. I am in therapy, it does nothing to help. My brain won't concentrate on anything other than the twutching, constant vibrations and pain. I don't think that will change unless all this stuff goes away...

Thanks for letting us know you are okay. I remember how difficult it was to concentrate when my symptoms were really bad. I hope that the gabapentin gives you some relief as you get on a higher dose of it. Keep in mind it can cause depression in some individuals. If your depression worsens please let your doctor know right away. Does your therapist know you feel you aren't getting anywhere? It may be time to try a different modality in there if therapy isn't helping. It may also be time to add an antidepressant so that the therapy CAN work.

Suicidal feelings, even of a passive nature with no plan, should always be taken seriously. If you don't have a safety plan with someone, a promise that you would reach out before acting on any thoughts, please make one. You are valuable and have a purpose in this world. We all want to see you stay in it.

Sending Love, Littlepaw :grouphug:

Are you on any antidepressant or anxiety medication?
Sometimes those will help the pain med to work better.

If you are crying a lot , you are losing fluids and that can make things worse also, replace those fluids as it helps the body so much overall.

I'm only on a lose of nortriptiline in the way of antidepressants but I'm weaning off. I'm afraid of anxiety and depressions meds because of the involuntary movement side effects. I don't want my twitchig and jerking to get worse Or turn Into something like tardive dyskinesia. I feel I am much more suseptible to those side effects than the average person due to what's already happening. I already have a really hard time staying still ( I think as a result of the domperidone). I move constantly without even knowing it. I'm always moving my legs, feet etc. I was not like this before. I know this because my husband is a leg mover and for 10 years it has bugged me so much that he can't sit still.

Your best resource for looking into meds for depression would be a psychiatrist. When people have a garden variety short term depression their GP can be okay for this. However, when there are complex medical issues and potential side effects to consider it is best to see the specialists. A good, experienced psychiatrist will have dealt with movement disorders and anti-depressants before. People with Parkinson's and other issues that are co-commitant with their depression can end up with tardive dyskinesia from certain drugs though it is thankfully rare. Meds used for anxiety may actually help calm the nerves to a degree and help your sleep without contributing to twitching. The low dose of nortriptyline used for nerve pain is not enough to touch mood and as you said you are titrating down. Going ahead with a psych appointment would give you a safety net and established relationship if you do need to add something in for mood.

sending hugs, :hug:

Canagirl!!! No!!! Don't think that way. Your thoughts create your reality. 11 years ago I was struck with terrible all over PN I too was in agony/misery. It abated after 3 years and I started to live normally again. I would have never believed anyone if they would have told me I was going to start travelling around the world and get married and start a business. I have done all of this with PN. The same PN that I thought would have certainly disabled me or killed me. I know you cannot see through the dark clouds now, but being on these boards for the last 11 years I have observed even some of the most treacherous cases of PN abate & improve. Many many people have eventually recovered enough to start leading a normal life. I too twitched and vibrated for almost 3 years straight. Then one day it went away!! Please don't give up. PN is not like other illnesses it can take a few years to get better. Your son and husband love you and need you and your son will only ever have 1 mother.:hug:

Canagirl
 

I've been where you are. I understand not wanting to take meds, but if you are contemplating suicide, you will need more help than willpower. I took Zoloft and Clonazepam for about 4 yrs until I figured out how to adapt to all the changes. I'm pretty sure they saved my life. I knew that benzodiazepines were addictive, but my anxiety was at a dangerous level. I wasn't sleeping or eating. I get the idea this is you right now. Counseling is very helpful with the right person. I suggest someone who deals with chronic disease and anxiety. Counselors are like antidepressants-you may need to try more than one.

Everyone is different in how they respond to antidepressants. Nortriptyline is an old tricyclic antidepressant, & those do have more side effects. They are commonly used with gabapentin to treat nerve pain. I actually take Amitriptyline & gabapentin now. I still get twitches and jerks, but I have gotten used to them. They don't terrify me like they used to. It's hard to imagine now, but your body does have the ability to adapt over time. What you need is time for your mind and emotions to settle.

I agree with everyone, don't wait to seek help.

Canagirl, I agree with what Littlepaw wrote 100%.

A psychiatrist, not a GP, should have the specialist knowledge to match the "right" med to the "right" person.

With care and concern.

Canagirl

Hope you are coming back here periodically to view the support you have received here. :hug:

Hang in there and hold on , Dear Canagirl!

I too, have had the thoughts you are having.

Although fairly new to PN, I am certainly not new to severe pain and other extremely uncomfortable and frightening and seemingly unbearable health symptoms/problems.

All I can tell you is that I "Held On" - and that is what I will tell you.

"Hang In and Hold On, Canagirl !!!!"

And

Perhaps you can try to find some distractions to take your mind off your body. Difficult, I know. For me, music is cathartic......

Also

Don't leave before the MIRACLE HAPPENS!

Hugs and good thoughts going your way.

:grouphug:

This is very encouraging! I didn't think anybody would improve after 3 years. Please can u tell me more about ur symptoms?

Thanks everyone. I appreciate the concern. I just can't live without the peace. I live vibrations in every part of my body every second of every day. I twitch more than anybody in here has described. And my body pulses to my heartbeat but the cardio doc says she's never heard of that and it's not a heart or circulatory problem. I can't sit in a bouncy or recliner chair because my body pulses so hard it moves the chair. It feels like I'm in a boat. Then there's the pain... I honestly don't know how u guys do it

Canagirl, don't sell yourself short...you are doing it! Yes, it's DIFFICULT and you are going through a rough patch .... remember this is NEW for you...you want to be the wonderful person you were before the pain...now you have to be the wonderful person you are with a new twist....like everything else it takes time to adjust ...your train of thought needs to change; you are worth something but your body is telling you, you need to put the oxygen mask on you first...getting help asap....keep us posted please and before you make any rash decisions PLS PLS PLS talk with the forum first....:grouphug:

Hi,
Sorry I am late getting to this.
I had 100% body wide on. Burning and prickling. I had some degree of dysautonomia too. Testing was always normal and I was discouraged that they would never find the cause. I was having daily panic attacks and was very very discouraged. There would be days I would wake up and not want to live anymore and that's the truth! It went on like this for 3 solid years getting worse and worse and it included global twitching and muscle cramping. Then it started to go away and before I realised it I was like 75% better. I started living my life again and I didn't think that was even possible. Over the last 11 years I have had a few more exacerbations of PN caused by antibiotics and also hurting my neck in a whiplash accident. All of which lasted 8-12 months and then abated to near normal again. Most recently sugar is aggravating it a lot and I am having pain in my hands and feet. I went for blood work and passed all my tests with flying colours. My glucose monitor always shows perfect numbers, so I just chalked it down to my own body chemistry changing again (after all I am 11 years older)in such a way as to be causing my nerves to be irritated by carbs and sugar though I am not even technically pre-diabetic.

I can tell you fear drove this monster and made everything worse. It's bad enough to have PN but developing anxiety, panic attacks, and depression are clear signs that the coping strategies one is using to manage this illness are not working. The one thing I had to learn to do was to make a diary of all my daily blessings and keep on reminding myself things could be worse. If you have $200 or $2000 or $20000 you wouldn't know which one was worse unless you compared it to What you thought was the better sum. So in essence don't compare yourself to 100% painfree people. That will surely get you down. I know it's hard but that's what I do. I forgave myself for not being perfect anymore and I explained to loved ones what I had. Admitting to it was a big burden lifted. Trying to pretend I was 100% normal was exhausting!! I took a class over the weekend with a young woman who had a double mastectomy and her uterus removed due to cancer. She had lost her hair and all she talked about was how not having hair affected her life. Her even younger sister had already passed away from ovarian cancer. In the same class was a lady with agressive MS. Then there was me and after hearing their stories it put things back into perspective for me. I stopped comparing myself to normal people long time ago or what I perceived as normal. That's when I started coping better and my anxiety and panic attacks started getting better. that's what I mean about living in ones head and to a great degree creating your own reality. Your reality is the sum of your thoughts & emotions. Though we have this disease or illness we don't have to live in fear and dread. Take care matey.:hug:

Thank you for putting everything into perspective. The hardest part of this illness is acceptance. It takes some time; but the need not to dwell on the negative is so important to coming to terms. Life can still have many pluses.


Gerry

I know exactly how you feel and could have written your post word for word just a few months ago. I am not a doc, but you sound like you are suffering from severe depression which will only make your pain worse. Do you have a shrink or talk therapist? Call them right now and tell them how you feel. If you can't do it, tell your husband and have him call. As hopeless as you may think it is, it isn't. That's the depression tricking you into thinking that way. You need and deserve relief from your depression and you need and deserve it now.

I have suffered from refractory depression for more than 8 years and I finally got some relief from a new treatment called TMS (trans magnetic stimulation). It completely changed my life. I went from just wanting to die in my sleep to wanting to live. I was once again able to go outside, to the supermarket, answer the door (even though I was in pain the entire time).

Please, please, please don't give up. Your child needs you and loves you no matter what you're going through. :hug:

- Jen

Dear Canagirl,

I hope and pray that you are feeling better since your initial post.

I feel that severe chronic pain can wreak havoc on people both physically and emotionally.

There are such wonderful and caring people posting here.

I would like to personally thank each and every one of you because I feel the same way as you, each and every day .

I'm sorry that I'm not in a better place emotionally to be able to offer you some positive, inspiring and encouraging thoughts on this.

It's been like a grieving process for me. The hardest thing for me and I feel for some others too is ACCEPTANCE. I'm not there yet , but I won't get into my tale of woe.

{{ HUGS }}