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....

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.

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.

- 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 }}