Allodynia and scalp pain

Hello. My name is Diane Radvanski new to this group and I have had 16 months of intense and very often excruciating scalp pain. My symptoms r burning, rawness,sharp throbs and jolts and pulling. My daily fictioning is so limited that I pray each day I can brush my teeth and wash my face. Showing is very painful on my head.

Been to 8 neurolgists, 2 pain doctors, skin doctors and neurosurgeons...All said it was nerve pain and that it may or may not go away.

I spend a total of 3 weeks inpatient for stroganoff IV in fusions of Ketamine Lidocaine, steroids, magensium and more and got little relief..I have been on many meds none of which really helped that much.

What's worse for me is that I am extremely sensitive to temperature and pressure....a slight breeze, heat and humidity and windy and cold. Can't tolerate a hat becaue it's too much pressure. I loved to walk and exercise but I cant.

This all happened 3 weeks after I got married when I hit my head during moving...I was rushing around and that's what happened.

I am not sure if I have TMS...even though my MRI came back ok...I do have extensive sinus disease but I had surgery for that 2 years ago and never had pain from that. I still feel like it may be a pinched nerve or severr neuralgia. Some docs told me I may always be in pain.

Does anyone else have allodynia (extreme sensitivity)?? Or have similar symptoms?

Thanks so much! I appreciate everyone's time and help.

Diane

 

Diane, what you have is likely CRPS (complex regional pain syndrome) which is absolutely TMS. I developed CRPS 11 months ago, discovered Dr. Sarno 5 months ago.

6 months ago, I had bright red swollen hands, extreme sensitivity to cold and touch, severe burning pain , numbness, tingling in hands, arms, upper back and more. I was contemplating ultimate disability as I pretty much could not use my hands.

By now, most of the pain, swelling and sensitivity is gone. I can type, work 40 hours a week and manage OK through residual pain issues. One symptom that is not going away is dystonia (continuous spasms in hands, wrists, ankles and knees).

You are in the right place. You have TMS, per Dr. Sarno.

This forum is a godsend. Listen to people on this forum and their advice. Do not listen to the doctors who do not believe in Sarno. If your symptoms do not disappear from reading Sarno's book, get a doctor from the practitioner list on the TMS Wiki.

It is hard work but if you take it seriously, you will recover.

 

Hi Diane,

I *have* atypical trigeminal neuralgia so am well-acquainted with the misery of nerve pain. The doctors have sweet fa to offer us (aside from a slippery slope of drugs and surgeries that go precisely nowhere), so we must create our own healing. Rest assured there is much you can do. I am well on the road to recovery and given that I have felt suicidal ideation from being in such pain, I know there is light in the darkness.

Take some time to explore and read the forums. There are lots of gorgeous people here who will help you. We've either been there or are there and this makes our advice both compassionate and practical. Meantime relax and rest easy. Your healing has already started simply by dint of taking the first tms step.

Plum x

 

Thank you! I appreciate it but I read his books and attended lectures and have been worse. Been 7 weeks now...I think it's part of it but I also believe there is something structurally wrong. So maybe I can use Sarno reading and some counseling and then medical treatments and surgery at this point. I can't leave the house. No matter how much I tell my brain the pain is a distraction from repressed rage I don't feel any releif. I was told I had CRPS but the only way to treat is Ketamine/Lidocaine infusions...I did 2 weeks of them and then 2 booster sessions. They made me so nauseous and dizzy plus Ketamine is a strong drug but they insister in pain management it is the only thing that will work. I do believe in mind over matter but my pain is not in the limbs or in typical places on the body. It's on and underneat the scalp. So I think Sarno's approach may help with coping but maybe not get rid of the pain.

I greatly apreciate your reaching out to me. Besides I have had it for nearly 2 years so the longer u have it the harder it is to get into remission. It may be too late.

Thanks u so much!hope to learn more on here soon! Glad u are doing so much better!

 

Diane, if you have money for ketamine, you should rather spend it on a TMS doctor. People recover after years of being in pain. You need a TMS psychotherapist. Read on this site about fear and about believing. Please, do it! Plum gives you excellent advice. Please, for your own sake, do not listen to what pain management doctors tell you!

 

Diane, most of the people here, if not all, have been where you are now. It can take time for a full and complete understanding of what Sarno is saying to integrate with your personal experience. It's taken me years but I am finally making real and lasting headway.

To this end it may help you to explore more neurologically based explanations of chronic pain because these make sense in ways vague notions of unconscious rage never can. You have to learn to rewire your brain, actually change pathways of nerves laid down and reinforced by strong emotions. Simply telling your brain to stop it won't take you very far. Healing demands consistent soothing of your parasympathetic nervous system. From your posts I can tell your sympathetic nervous system is currently dominant and this is a powerful factor in the pain cycle.

You can employ conventional, allopathic medical methods along with neuropsychological techniques but I would implore you to be extremely mindful of extreme measures.

There are so many people here who have recovered from life-decimating pain that it is worth exploring their success stories. You can learn so much from them.

These people have cured themselves without medical intervention. They have cured themselves by calming the nerves that cause the pain. No doctor can do that for you. You are the only one who can take back control of your nervous system and restore it to natural, healthy functioning.

It's your choice sweetheart. Whatever you do, please take good care and remember that there are people here and techniques aplenty that can only help you.

Plum

 

Actually we don't have the money for Ketamine. ...we were told insurance would cover it...that is another issue...I just didn't want to post it on hwre but money is extremely tight...I was wonsering if part of TMS is oxygen deprivation are there any suppliments or treatments to improve oxygen to the site? I didn't see anything about that. Trust me I have started to realize pain management isn't great. I am worried because I failed so many treatments what if I don't get relief? Esp also because I have bad sinus disease and dermatitis on thw scalp which further irritates my nerve scalp condition. I feel like I am always battling 3 types of pain, sinuses, TMS and dermatitis. What do people do when they have seperate health issues but they r in the same area? Thanks so much!

 

Diane, I very much recommend you to slowly and thoughtfully read posts on this site. You are new to TMS and you need to soak it in. It takes time to accept the right state of mind and accept it both in your heart and brain. What you are saying tells me that you believe that your problems are structural, while in fact they are in your mind. It took me few weeks of setbacks to accept it, even though I thought I got it in a day. Start one of the free educational programs on TMS Wiki and you will be surprised by the progress you will start making. Buy one of the books recommended here on the site, most popular is Steve Ozanich's Great Pain Deception. Read people's stories and learn to trust them. I suspect that your skin and sinus problems are also TMS as they all are PAIN. Plum is one of the kindest and thoughtful people on this forum - read what she says, time and over. We both much improved - please trust us. Best of luck!

http://www.tmswiki.org/ppd/TMS_Recovery_Program (TMS Recovery Program)

http://www.tmswiki.org/ppd/Structured_Educational_Program

 

One day a man decides to clean out his attic and in so doing finds a dusty, ancient looking lamp. With the sleeve of his shirt he rubs the lamp and to his great astonishment a genie appears. The genie says "I have been trapped in this lamp for a thousand years and in gratitude I shall grant you one wish."

The man thinks and being basically a good sort he says, "will you grant peace in the Middle East."

The genie looks troubled and says, "Sadly that is beyond even my powers. Please make a second wish."

The man furrows his brow and then with a smile asks, "genie, I have been married for 20 years and it has been over a decade since my wife gave me a blowjob. Will you make this happen for me tonight?".

The genie replies, "How do you define peace?".

 

You are correct..I am new to this. I am on the fence beause of the odd place of my pain...my scalp and it scares the hell out of me. Plus I already have people who dismiss my pain and say it is all in my head so I am surrounded by folks who don't believe the pain is real. So you are saying that allodynia can be controlled by the program? So I can get remission? I will read and keep reading. I would lIke to do meditation and imagery too. Are those practices people often use? I think the 2 W's will help me so much - Working and walking for exercise again. Thanks for takin g the time to reach out to me I appreciate it very much!

 

That's what tms does. Scares the bejezzus out of us.

Yes! Not only controlled but eliminated.

Meditation and imagery are excellent and highly recommended. I think you'd like mindfulness too.

 

Ok. I feEl silly but here goes...what is the difference between mindfulness and imagery? Also my doctor for now until I start therapy said I should talk to my brain 5 times an hour and every time I feel pain say "I know you are trying to distract me from thinking about (list all stressors from past to present) but this pain will not harm me. And thats it. I had to generate a list of things that have upset me past and current. And that's it...it's been a month and I don't feel better I actually feel worse. What scares me is people saying they were cured after reading a book or listening to his lecture. I am not cured so that is what makes me skeptical. I wish I was cured. Makes me sad too. Thank you for taking time to address all my concerns!!! Very kind of you and everyone else.

 

Diane, you need to accept the fact that not everybody is lucky. 20% of Sarno's patients had to go through what we are going through - that is our un-luck. But, if you step on this path and finish it, you will view your un-luck from a different angle - you will learn so much about yourself and power of your mind that you will be proud. First thing you need to do is to free yourself from your fear. Recovery starts from knowing in your heart that you will overcome your pain. That knowing gets you through setbacks that you will experience, like all of us. Go for it!

 

Fear for me is extremely hard to banish becauze my pain is on my scalp and I can't even touch my face or shower. Basic simple day to day activities that most people can do without thought cause a world of pain. I also got this from hitting my head during moving 6 times in a 2 week time period. The doctors said I nerve injuries to my scalp. Also the fear comes from temperature any slight cold or hot and humid and windy whether and I get extremely bad flare ups. I can't even wear a hat. So I totally agree when u said the fear factor as everyone else has stated here. I just don't know how to beat it. I have always been a fighter and always conquered health issues through hard work and perserverance but somehow this condition has me in its grips. Somehow having chronic nerve pain feels worse than chronic muscle or joint pains I had..because nerve pain gets harder to treat and go away over time..thr nerve symptoms r horrid -- burning, rawness, sharp jolts, pullig and severe pinching. So this is honestly wherr I am right now. Anyeay thanks for listening. I don't want to bring anyone down. Do others struggle with the fear factor initially?

 

Diane, the nerve pain I have is in my face. It's the trigeminal nerve and it affects the entire right side of my face, radiating through my head, neck, shoulders and upper back. The everyday activities I have been compromised in include eating, drinking, brushing my teeth, wearing make-up, kissing, and sometimes talking. I've had it for over ten years with a respite for a couple of years before it returned when my partner was diagnosed with Parkinson's disease.

I didn't know about Sarno until around five years ago and back then this forum didn't exist. The support was virtually non-existent and I was truly alone with all my pain, fear and coping. Trigeminal neuralgia is also called "suicide disease" because so many people elect to take their lives, that is how crippling and terrifying it can be.

Therefore I and indeed pretty much everyone here knows the abyss. Some members of the forum are housebound and have been for a long time. Others cannot walk. Many are stuck in their beds. But we are all committed to healing and we have all struggled to make sense of Sarno's words and understand how it applies to us.

I'm fairly confident in saying most people here have considered tms to be:

1. Utter bullshit.
2. Not applicable to them because they actually have something wrong, something structural.
3. Not applicable to them because they had a good childhood/don't have the tms personality type/are not angry.

And guess what? Every last one of us has eaten humble-pie. I even kicked the whole thing into the dust for two years and left this forum and Sarno behind me.

But it niggled. And niggled. And hurt like hell. The great news is that in my time away all the emotional work I'd done began to bear fruit. During the back-end of 2015 my crushing pain levels started to fluctuate. I began having a day here and there when my pain was tolerable. Before this I'd literally have one or two days a year where the pain eased off.

I was getting better. At the start of this year I was assaulted and unsurprisingly it triggered a relapse. A few weeks ago I found myself back here and what a different experience it has been.

I completely understand tms now.
I see exactly how it applies to me.
I have more pain less days than pain full ones.
I know I am healing.
I am healing.

Doctors have less to offer to neuralgia sufferers than to anyone else. They don't understand the nervous system or how emotions mediate it. And they definitely cannot understand how your emotions create and sustain your pain. Only you can do that.

This is the journey we are all on. Every single person here. Some people make it quickly and easily, for others (myself included) it is the long haul. And that's ok.

Diane, you need to slow down and take a deep breath, and then begin at the beginning. @TG957 made some great suggestions earlier in this thread. There are two healing programs: the SEP and Alan Gordon. Both have sub forums of their own. There is also The Success Story forum.

Spend some time reading around and familiarising yourself. No one can give you the definitive healing answer you want to this post. Healing is very personal and intimate, we can do our best to share how we are achieving this but it is hard to describe. How does one explain what it is to be ourselves?

To close this long reply I'll say that I have been exactly where you are now. I know the terror, the anguish, the mind-loosening agony, and the despair, you are enduring. I know how alone you feel. I know how desperate you are to recover, how you want the answers now and the relief to be immediate. If I could I would do that for you.

What I can do is tell you that tms is generated by your reactions to life and that healing involves learning about these ineffective ways of coping with the slings and arrows of misfortune and substituting them with what works. Healing makes us cool, calm and collected. And the hot, panicky, scattered energies of pain are long gone. They are in the past, along with who we used to be.

Plum x

 

Beautiful post, @plum. So glad you are back with us and that you are healing.

Diane, you are on the right path. It isn't an easy or straight path, but it is the one that leads to true healing. We are all here to support one another on this path. Just take it one step at a time.

 

Diane, I completely understand your pain. Those fire ants crawling under my skin and throbbing fire in my hands, arms and shoulders was the most maddening and unbearable pain I ever had in my life. And I have pretty high tolerance for pain - I never took Vicodin after tonsillectomy or wisdom teeth extraction (all 4 at once) and doctors could not diagnose my appendicitis because I kept telling them that my pain was not too bad. CRPS pain measures on a scale 1 to 20 as opposed to other pains with the scale 1 to 10.

But important thing to know is that the root of this pain, as sad as it sounds, is in your brain. CRPS is a result of hyperactive nervous system and the only ultimate way out of it is to calm it down. I understand it is nearly impossible to meditate when you are in such pain, but try a bit at a time and not give up.

Sarno prescribed people painkillers but warned them that painkillers will slow their recovery. If you can't bear with pain in order to start meditating, try this cream, it was incredibly helpful to me, it calmed my pains down for about 30 minutes at a time. If it works for you, don't waste those few precious minutes of relative calm - use them to meditate and do your TMS work.

https://www.amazon.com/gp/product/B000EOR49W/ref=oh_aui_detailpage_o05_s00?ie=UTF8&psc=1 (Amazon.com: Topricin Cream Jar 4 OZ (Pack of 1): Health & Personal Care)

One more thing: do not fear or hate your pain or your brain. It is part of you and your pain will only go away when you give it your love, as odd as it sounds.

 

[QUOTE="DianeRadvanski, post: 69302, member: 4669"I do believe in mind over matter but my pain is not in the limbs or in typical places on the body. It's on and underneat the scalp. So I think Sarno's approach may help with coping but maybe not get rid of the pain.
[/QUOTE]

It is important to remember that your nervous system is everywhere in the body. People get pelvic, stomach, facial pains, psoriasis, rosacea and many other skin conditions as a result of overstimulation. The only way out of this condition is to stop convincing yourself why Sarno's method would not work and start convincing yourself that you shall overcome. Read Andrew Weil's Spontaneous Healing.

 

Oddly enough we have a few things in common..I had the old fashion tonsillectomy where they cut the tonsils out and all 4 wisdom teeth at once with only the gas mask. I too have a high tolerance of pain and do not take opioids. But I am on some strong meds and thw muscle relaxer I have is not helping. When I tried to wean off of it on my own I did so too fast and got rebound spasms.

I am going to a CRPS specializt in 2 weeks to see what he has to say. I am glad you found relief from that cream. I would try it however I also have bad dermatitis and I can't wash my hair often so any creams I have used in the past like Lidocaine would cause more moisture and dandruff. But I can put it along the hairline where I wash my face.

My doctor said that it would take only a few months before I felt better. Time will tell. I hope your pain gets to 0 and u r back to functioning well again. My goal is to he able to exercise, comb my hair, and work again. If I can tolerate a hat I can walk in the winter and protext my head in the summer and wind.

I was thinking of Tara Brach or Ticht Nat Hahn for meditation...any suggestions?

I guess I have had it drilled in my head that CPRS has no cure.

Thank you again for your help and advice and cream recommendation!