Hopeless and ....see no light anymore

Renate

Renate

Peer Supporter
Hi everyone, after 7 years of chronic pain I am so hopeless that I don’t want to live this life of pain anymore. Sometimes I have suicidal thoughts. I have worked with so many “programs”: Sarno, Steve Ozanich, Emmett Miller, Jonathan Kuttner, Claire Weekes, Alan Gordon, the Presence Process….I had years of psycho- therapy, Hypnosis, EMDR….talked to TMS Practitioners…relaxation, meditation, affirmations, visualizations…
I was diagnosed with CRPS and a necrosis in my foot 7 years ago. The necrosis is gone since some years but the burning pain persists.
I am convinced more than 100% that my foot pain is TMS – also because the pain changes every day several times from no pain to the worst. So often I started a new “program” and told my brain that there is nothing wrong with my foot and I walked, stood and sat longer etc. and my pain got better for some weeks. Than I have a big setback, I hold on with the program but it does not work any more (now since 4 weeks).
My life got so very small! I can walk for 30 minutes once a day, sit a little longer and stand for some minutes. And I can I go swimming. So I spend most of the time at home lying/sitting on my couch.
Fortunately friends come to see me, but not every day. So I often feel lonely.

Nobody can see how much I am in pain and people think I am healed because I don’t limp any more - limping makes the pain worse. But sometimes I limp for a while to make people see how much I suffer. If you imagine that you put your foot into boiling water you know what I feel.

At the moment I am really hopeless because I don’t know what to do further. I think I have done everything to heal and I am so frustrated.
I would be thankful for any advice!!
And I apologize for my English……
 
So sorry to hear that you can't seem to find lasting relief from your symptoms.
Your story reminds me of a scene in 'All the Rage' where a woman tells the filmmaker about her foot that no doctor could help her with. She showed a picture of it and said: 'that was one angry foot'. She told about how she was working her butt off to provide money for her parasitic boyfriend. When he finally dared to kick her out of the apartment that she paid for, on christmas night and on crutches, she decided that it was enough. That was when her foot started to heal, much to the surprise of her doctors.
I sadly can't give you any other advice than to see this documentary and watch the scene I described, maybe it resonates with you.
 
Hi Renate,

You know you have TMS because of the results which you did see, despite the setback.

I hope you can find social support and do things you enjoy despite the symptoms. What jumps out to me in your post is your discouragement and depression. If you "forget"about your foot pain, and seek things which soothe, satisfy, and comfort you, this may help. If swimming is good, do more of it, because exercise helps our spirit, for instance. If, with burning feet you go to coffee with a friend, this is probably good.

This suggestion comes from my heart, knowing that ultimately we suffer more deeply emotionally than we ever do physically, that the pain of hopelessness and feeling wrongness or "cast out" is worse than "boiling water." I hope this might help you a little.

Sincerely,

Andy B
 
Hi Renate,

Something made me click onto TMS wiki today and as fate would have it I saw your post. Do you speak Italian by any chance? I had RSD/CRPS in both feet and knees. My feet are 100 percent better and my knees are getting better. I hope my story gives you hope. Please send me a pm anytime!!

MiffyBunny
 
Thank you so much for your replies! It is so good to know that there are people who care and who know what I am going through!
This makes me really feel better!
Gigalos: that‘s a good advice, but my partner and I separated 6 years ago. Today I can think of him with a warm feeling.
I think I thought of all psychological reasons for my pain - by myself and with the therapists.
Andy B.: yes, being with friends helps and I try to see them as often as possible. They are all still working so they are busy during the week. I am swimming 4 times a week and it really does me good. And I try to do as much as possible to distract me from the pain. Fortunately Iam better today and I can see the light at the end of the tunnel again!
miffybunny I wrote you a pm!
 
I don’t have CRPS/RSD, but I did have severe sympathetic nervous system dysfunction (which I’m genetically predisposed to due to my Ehlers-Danlos). I’ve compared my sympathetic overactivity to many symptoms of CRPS/RSD based on specific similarities (e.g., allodynia/horrific sensitivity to any touch including light breezes and my cat’s fur, crazy burning, lack of blood flow, extreme sweating, stiffness, mottled skin, spasms and twitches, headaches, etc.). In fact, I remember asking whether I might have CRPS/RSD in my first post on this forum!

CRPS/RSD is just another type of nasty sympathetic nervous system overactivity. Anyone who says you can’t overcome it needs to log off the Neurotalk forums and think more creatively.

Personally, I’m 95% to 100% recovered, depending on the day. I had previously written about applying for assisted suicide, and boy, am I glad I didn’t. I went from having to fill out an Americans with Disabilities Act form at work to request special voice-to-text software to living pretty damn happily and free of pain.

I promise you can do this. Forget anyone who says you can’t, including fellow CRPS/RSD patients who have been misled. The fact that you know it’s TMS is a great start, but sometimes additional work needs to be done. Are you obsessing over and fearing the symptoms? If yes, this teaches your brain that the symptoms are an effective and necessary distraction, and also keeps your sympathetic nervous system in overdrive.

Trust me, I’ve been there. Remember that setbacks are normal, and don’t mean you’re a failure or stuck with your symptoms forever. The fact that you had some improvement is fantastic, and it will happen again!
 
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Hi Caulfield, Wow! You have quite an interesting and inspiring story! I totally agree with you that so many of these bizarre and painful symptoms are the nervous system that has gone in tilt. I also suffer from chronic migraines and I noticed that when I'm having them, the RSD calms down and vice a versa . It seems that my brain is diverted to one or the other. I also agree that those Neurotalk forums are the worst!! I'm so happy to hear that you turned your life around!

Renate, I'll pm you with my some of the concepts that really resonated for me and helped me get unstuck.
 
Hi Renate,

First off I'm sorry to hear that you were having a bad time of it, but seeing from your latest update you sound like you're doing better! TMS works differently for everyone, all healing times are different, but all healing times are definite! Trust me, I go back and forth with having a lot of hope to having doubts that really bum me out. But I know it's simply my mind causing my physical tension, which leads to my pain, and that I have to know that this is TMS. Our bodies are fine. At the most, whatever physical sensations we are feeling is from our brains acting up out of emotional suppression. I find that journaling when I am going through a period of emotional darkness helps me loads. In fact, many times when I do these sorts of positive exercises my pain drops from a 8/10 to a 2 or 3/10. It's these blips of comfort that show us that what we are dealing with is in fact TMS! You will conquer over your pain and look back on this painful time only as a distant memory.
 
Renate said:
Hi everyone, after 7 years of chronic pain I am so hopeless that I don’t want to live this life of pain anymore. Sometimes I have suicidal thoughts. I have worked with so many “programs”: Sarno, Steve Ozanich, Emmett Miller, Jonathan Kuttner, Claire Weekes, Alan Gordon, the Presence Process….I had years of psycho- therapy, Hypnosis, EMDR….talked to TMS Practitioners…relaxation, meditation, affirmations, visualizations…
I was diagnosed with CRPS and a necrosis in my foot 7 years ago. The necrosis is gone since some years but the burning pain persists.
I am convinced more than 100% that my foot pain is TMS – also because the pain changes every day several times from no pain to the worst. So often I started a new “program” and told my brain that there is nothing wrong with my foot and I walked, stood and sat longer etc. and my pain got better for some weeks. Than I have a big setback, I hold on with the program but it does not work any more (now since 4 weeks).
My life got so very small! I can walk for 30 minutes once a day, sit a little longer and stand for some minutes. And I can I go swimming. So I spend most of the time at home lying/sitting on my couch.
Fortunately friends come to see me, but not every day. So I often feel lonely.

Nobody can see how much I am in pain and people think I am healed because I don’t limp any more - limping makes the pain worse. But sometimes I limp for a while to make people see how much I suffer. If you imagine that you put your foot into boiling water you know what I feel.

At the moment I am really hopeless because I don’t know what to do further. I think I have done everything to heal and I am so frustrated.
I would be thankful for any advice!!
And I apologize for my English……
Click to expand...


Renate

I can understand what you are going threw been suffering same amount of years the only differance its both of my feet and legs..yes your world can get very small...but I said fuck that i make myself go out with friends I work out and I hold a full time job, there are days I just want to faint from the discomfort and once I did and ended up in hospital for 3 days. I wont let my pain boss me around...dont get me wrong some days it wins.
 
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