Sunrise
Peer Supporter
Yes, this is one of the things keeping me going and feeding into the positive mindset and lessening the frequency of the sensations.. The fact that there are people on here who have survived it. It goes a long way.
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Numbness, tingling, electric shocks, paresthesia, allydonia, small fiber neuropathy
- Thread starter Sunrise
- Start date
Yes, this is one of the things keeping me going and feeding into the positive mindset and lessening the frequency of the sensations.. The fact that there are people on here who have survived it. It goes a long way.
I appreciate the thoughts here. I am a TMS sufferer/believer and have scoured success stories and this board for the last couple years. I've found TMS therapy to be very helpful in other areas of my life and I certainly believe in this concept. I've even tried to "treat" my PN with TMS therapy. I've had a TMS Doctor, spoken with Steve O and Dr. Schubiner about TMS for PN and validity of EMG's etc. My PN likely came from a virus I contracted many years ago while overseas. My wife and I both got really sick, but eventually recovered. Mine spun off to neuropathy, hers did not. Everybody is different I guess. Anyway, I've learned to live with the PN, it's uncomfortable but not life altering. TMS therapy has helped me deal with the mental side of living with this condition, but just like with other more insidious (neurological) diseases, it won't cure it.
Yes, but I've never been able to really "get it" or stick to it...
TG957
Beloved Grand Eagle
I was anti-meditation - until I realized that conventional Dr. Sarno's psychoanalytical approach was not working for me and got serious about trying meditation. It took me about 3 months of trying to "get it". It saved my life. I am working with another CRPS patient who has neuropathy - same story. She first flatly told me that meditation was not for her. She now sees the results after she started meditating up to 3 hours a day. The trick is to get past first ~20 minutes of meditation, then healing effect begins.
Think it's good for overall life balance, I guess I've not been dedicated or consistent enough in my previous attempts? Anyway, thank you for your encouragement...
@DWA and TG957. DWA listen to what TG957 has to say. Been reading her book and is a great testimonial to what can be accomplished. In 2007, I too, started out with the slightest hint of numbness in my left big toe. It progressed to full blown pain and numbness in both feet and calves. In 2007, foot pain and numbness was really not an issue in the TMS world (at least I had never heard or come across it). It was something new that my mind was looking for to locate the pain, and I never put 2 and 2 together. Years later, I learned that foot pain and numbness are the new "back pain".
In a earlier post I had stated that I had a moment where all pain and numbness disappeared for 5 minutes, but came back. Needless to say, it broke my spirit. You throw your hands in the air and say "I give up". And that is kind of what I did. I was so frustrated, angry and negative that I had felt that 5 minutes of bliss, and then back to where I initially was.
Now, because of my wife's influence, I have recently visited the Mayo Clinic in Florida (against my beliefs and better judgement), and I come to find out that the doctor's are scratching their heads and ordering all these different tests. After awhile, you begin to have this "feeling" that all these tests are worthless. Blood tests that I have had before, and EMG tests I have had before! I have cancelled the tests, because the first round of tests all showed normal.
I have cured back and neck pain with no problem. The mind will find an area that will "confuse" you and make you think the worst. We must learn to recognize that most pain in the body is TMS related. It's how the mind is trying to distract you. While reading TG957's book, I was smiling and relating to what was being explained, and I started to feel sharp stabbing pains in my knee!! Never felt that before. Ever.
TG957 has some great advice. I have been paying attention to when when the pain and numbness escalate and thinking about emotions at that particular time, and it makes you focus on your thoughts and how you are feeling. For me, I'm begining to learn that I am easily frustrated. Frustrated by the simple things in life, and that leads to a quiet anger inside myself. I think guilt plays a big emotional roll in the TMS process. Think about emotions, like TG957 says in the book, and you will truly begin to see what emotions affect you most.
DWA, believe that you will get better. Attitude is everything. I'm not there yet, but after reading TG957's book, I am ready to fight!
In a earlier post I had stated that I had a moment where all pain and numbness disappeared for 5 minutes, but came back. Needless to say, it broke my spirit. You throw your hands in the air and say "I give up". And that is kind of what I did. I was so frustrated, angry and negative that I had felt that 5 minutes of bliss, and then back to where I initially was.
Now, because of my wife's influence, I have recently visited the Mayo Clinic in Florida (against my beliefs and better judgement), and I come to find out that the doctor's are scratching their heads and ordering all these different tests. After awhile, you begin to have this "feeling" that all these tests are worthless. Blood tests that I have had before, and EMG tests I have had before! I have cancelled the tests, because the first round of tests all showed normal.
I have cured back and neck pain with no problem. The mind will find an area that will "confuse" you and make you think the worst. We must learn to recognize that most pain in the body is TMS related. It's how the mind is trying to distract you. While reading TG957's book, I was smiling and relating to what was being explained, and I started to feel sharp stabbing pains in my knee!! Never felt that before. Ever.
TG957 has some great advice. I have been paying attention to when when the pain and numbness escalate and thinking about emotions at that particular time, and it makes you focus on your thoughts and how you are feeling. For me, I'm begining to learn that I am easily frustrated. Frustrated by the simple things in life, and that leads to a quiet anger inside myself. I think guilt plays a big emotional roll in the TMS process. Think about emotions, like TG957 says in the book, and you will truly begin to see what emotions affect you most.
DWA, believe that you will get better. Attitude is everything. I'm not there yet, but after reading TG957's book, I am ready to fight!
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Thanks for the encouragement. Our stories are pretty similar, but where I have success in disabling other, unrelated symptoms with TMS therapy, I have not had any luck with the neuropathy in my feet. 11 years of slow, steady progression. I don't have good days and bad days, the neuropathy doesn't move around or leave. It's always there. Been treating my foot numbness with TMS therapy for two years and it hasn't changed. Like you, I have given up on neurologists and traditionally treatments. There are no answers there, but I do get stuck on the 3 failed EMG's I've had. The tenet of TMS therapy (Sarno) is to go get your symptoms checked by a doctor and if they don't find anything, then assume TMS. I get that, but get hung up on the repeated failures of the EMG's. I've researched accuracy of EMG's and studies have proven that they are very accurate if conducted by a good neurologist. I've had three very good Neurologists perform mine and got the same abnormal results each time. It's hard to get past this mentally. But since I've given up on finding a "cure" or relief in traditional medicine, maybe a miracle will happen over time and the symptoms will abate since I'm not focusing on them anymore? One can hope. Good luck with your battle and thanks again for the words of hope!
Sunrise
Peer Supporter
Just checking in to say my symptoms have subsided considerably, almost not a factor in my life in the last few weeks/months. Of course, I've been here before and fully expect them to return, but my confidence has increased significantly that when they do re-appear I will handle the situation appropriately instead of breaking down.
This forum and it's resources has been paramount in my recovery so far and I am forever grateful I stumbled on the TMS concept and the very supporting members here.
This forum and it's resources has been paramount in my recovery so far and I am forever grateful I stumbled on the TMS concept and the very supporting members here.
Sunrise
Peer Supporter
Sorry to hear you're struggling mate. Unfortunately I am not a success story, but (at this moment) I feel like I've made some progress.
TG957
Beloved Grand Eagle
I am a neuropathy success story - full recovery. In addition, I am currently working with a woman who also has CRPS and neuropathy, and she is making good progress, with neuropathy mostly gone.
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Cincinnati_S
New Member
I was diagnosed with SFN and have made considerable progress. When I treated SFN as a nerve disease I was in bad shape. When I finally believed it was TMS and started this journey I started seeing results. Progress is slow and non linear but tangible.
The symptoms you have listed above match mine 100% when my issues started. I collected a few more over the next three years.Thank you everyone for your responses. I have been here before. I am handling it much better than previously. I am just checking in, so that one day if I overcome this chapter of my life, someone going through something similar can view the ups and downs in my journey, documented on this forum. If I ever heal from this, I will spend my time assisting others.
If anyone is reading this and experiencing similar - feel free to reach out to me. At least we're not alone fighting these battles
But the positional numbness and tightness is very relatable for me. How are you doing now??
Sunrise
Peer Supporter
Amazing. Please keep us in the loop. I have done lots of research on SFN and I am not fully convinced they can accurately measure the degradation of the small fibres. I spoke to a person from Europe who has had several tests in the same location and they produced different results every time. He said he went to the Netherlands and visited the top neurologist in the world for SFN, responsible for a significant amount of research on it and she admitted there's no reliable way to diagnose it correctly. That there are people in the bottom 5% of density who have zero sensations or altered feelings in those locations. Food for thought!
tgirl
Well known member
This is certainly one bizarre affliction, SFN. Is it a real thing? I remember speaking with a women a couple of years ago who was told by her neurologist she had it but it could totally go away. I really don’t get it to be honest.
krk_mindbody
New Member
I know this is old post but wanted to reply. I am a new joiner here and I have been having almost all of your symptoms. I have an extra symptom that I have a weird dizziness..like I am wobbly in the brain but it looks fine for others. I can see the difference in your confidence level from your first post until this message. Great stuff and I am trying to build my confidence.
krk_mindbody
New Member
This is 100% right. My neurologists concluded that I might have Idiopathic SFN but he said that there is no 100% diagnoses including skin biopsy. He cannot exclude SFN with negative skin biopsy. As you said, there are many people with low density of small fibre nerves but yet they dont have any symptoms. It is our smart brain playing tricks. I have got hell lot of tests in neurology and all tests came normal except ulnar nerve entrapment which gives me tingling sensation in my pinky and ring fingers in my left hand. Still, I strongly believe that it is TMS and I will get better.
Cincinnati_S
New Member
Read my posts from before and now this: I bought in 100% to this being TMS and have spent a lot time on these areas. 1) being mindful of how often i was looking for or thinking about my symptoms, despite how intense they are. I was SHOCKED at how frequently I was paying attention to my symptoms. 2.) not giving a shit about my symptoms. takes practice especially if you have been afraid for a long time. 3.) I actually got into breathwork (see many options). Didn't do this to get rid of symptoms but rather to help my nervous system come down so I could calmly address items 1 and 2 above. I would give you a % of how much better I am (and it would shock you) but I don't care anymore and that has made all the difference.