Allodynia and scalp pain

[DianeRadvanski]

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

Thank you for sharing your story and all the personal details of your struggle along a long road. I am extremely saddened to hear of your assault and husbands dx of Parkinsons. But I am so happy that for 5 years you were in remission. That is truly remarkable and encouraging. We have similar symtoms in that chewing, talking and brushing teeth is hard or nearly impossible at times. And I am sure you are all too familiar with how a light touch or breeze can set off a flare up. I give u tons of credit for allowing others here to share in your personal pain and success despite even recent setbacks.

I will look into both of those programs. I am curious how my appmt will be this Friday. Just made one with a TMS tberapist. He sounds tough like he asked if I drive and I said no and he said well if u had an emergency u could drive so that means you can drive here.

I actually do want to try meditation and mindfulness. I have been working on imagery.

What I wanted to share was that nearly 20 years ago I was diagnosession with a condition that at that time nobody knew much of as well...no support groups, hardly any resources and only specialists that I was lucky to eventually find. It is called vulvadynia. How ironic that the same burning, rawness, pinching and throbbing in that area is now on my scalp and face. It was also pretty Sarno or at least I wasn't aware of him. I remember getting thru it with internal and external physical therapy (yes, it was internal and boy was that painful). In some ways I am angry now becauze physical therapy or massage can't be used in this condition.

I am still struggling with tms is crap and there must be a pinched nerve or blood vessel or neuralgia they missed. Esp becauze family and friends are fed up and don't know what to say other than find another specialist.

I hope in time I am able to overcome the fear, anxiety and depression and enjoy life again. This happend 3 weeks after I got married and was moving and after I had to give up my post doc job.

I am glad there is a success story forum becauze much too often u don't find that with chronic pain conditions.

Anyway sorry so long winded. One last question did u push yourself to do things even when u had bad pain or did you still physically rest alot? Thanks again. I hope and pray you continue to be better each day.

 

[TG957]

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.

I think the right meditation routine is a matter of personal taste and where you are in your process. Mine went from more physical, like yoga balancing poses or qi gong practice to now a sitting meditation, as I learned how to get into the right state of mind without movement. Took few months of practice. A meditation music really helped in the beginning and I went through a good dozen before I found one. First guided meditaton that rang the bell with me was a short one by John Kabat-Zinn on anxiety, free on youtube. Then there was Dr. Weekes audio (somebody on this site posted a link, you can find it through search). Dr. Sarno's voice on his CD on back healing from Amazon had an amazingly calming effect on me, so I could meditate after.

On the subject of drilling into your head: I know exactly how I scared myself into CRPS and dystonia, took couple weeks and prior personal experiences many years ago.

Just remember this: CRPS does not have cure, but it can be healed and there is no healer there but you. Knowing it is very liberating and terrifying at the same time, since it puts both power and responsibility on you. After I learned my diagnosis, I went to one of the CRPS forums and I was scared, mortified by what I saw. I wished for a heart attack to come and knock me dead. But I kept searching, and there was one post there by a girl who recovered fully by just reading Sarno's book, over and over, until she healed. At that point, I knew that I will recover, two steps forward, one back, but I will. Took me another few months to stop putting a deadline on my recovery - that helped a lot. You can do it, too. Read and re-read what other people post here when you lose hope, and you will start believing.

 

[DianeRadvanski]

I think the right meditation routine is a matter of personal taste and where you are in your process. Mine went from more physical, like yoga balancing poses or qi gong practice to now a sitting meditation, as I learned how to get into the right state of mind without movement. Took few months of practice. A meditation music really helped in the beginning and I went through a good dozen before I found one. First guided meditaton that rang the bell with me was a short one by John Kabat-Zinn on anxiety, free on youtube. Then there was Dr. Weekes audio (somebody on this site posted a link, you can find it through search). Dr. Sarno's voice on his CD on back healing from Amazon had an amazingly calming effect on me, so I could meditate after.

On the subject of drilling into your head: I know exactly how I scared myself into CRPS and dystonia, took couple weeks and prior personal experiences many years ago.

Just remember this: CRPS does not have cure, but it can be healed and there is no healer there but you. Knowing it is very liberating and terrifying at the same time, since it puts both power and responsibility on you. After I learned my diagnosis, I went to one of the CRPS forums and I was scared, mortified by what I saw. I wished for a heart attack to come and knock me dead. But I kept searching, and there was one post there by a girl who recovered fully by just reading Sarno's book, over and over, until she healed. At that point, I knew that I will recover, two steps forward, one back, but I will. Took me another few months to stop putting a deadline on my recovery - that helped a lot. You can do it, too. Read and re-read what other people post here when you lose hope, and you will start believing.

I didn't know about dystonia but my God does that explain the severe twisted throbs and pulsating and pulling like my muscles r hard as a rock on my scalp. My acalp literally feels like a bowling ball.

Can't there be a self massage for this? Some type of gentle massage to loosen the muscles?

Also how do we get more oxygen to these areas becauze Sarno talks about oxygen deprivation.

Sorry I feel like I keep putting you on the spot. If u would rather me post a new thread....also hare to say this but monthly woes that women get make my pain worse...I wish I was a guy sometimes!

And u r right...CRPS info groups r scary. Sometimes too much info is overwhelming.

Have a good night

Diane

 

[miffybunny]

Hi Diane,

I read this thread with great interest and I just wanted to assure you that you do have TMS. I haven't posted here in a long long time probably because I'm a perfectionist and I didn't want to post until I was a "success story". I was diagnosed with RSD/CRPS four years ago (first it was in both feet which I'm happy to say is 99% gone) and then 2 and half years ago in both knees (triggered by a trauma from a crazy massage therapist). My knees have been a longer harder journey due to the fact that I have a mental block with the aesthetics of the way they look (swollen and mottled). I also suffer from the horrid allodynia and stabbing pains. I've made progress mostly due to TMS therapy (I went from being practically bedridden to total mobility). Now back to the mental block... I have a feeling the location of your RSD (which is TMS) is what is causing you to have doubts. I remember a patient in the pain man Dr's office who also suffered from this condition in her scalp. Don't get hung up on the weirdness of the location. TMS can strike anywhere. I avoid RSD/CRPS message boards like the plague and I don't waste time with pain man. doctors or any alternative quacky therapies. I think what makes RSD particularly challenging, is not just severity and torturous quality of nerve pain but the fact that it's not common or well known, and you can SEE the swelling and color changes. These factors fuel doubt and are powerfully distracting. The thing I've had most difficulty dealing with is the way my legs look now as compared to before. My legs were sort of "my thing" and I usually dressed to show them off. I'm convinced that if could stop caring about the way they look, the RSD would fade away the way it did in my feet. It seems that my brain had to create an even more powerful distractor than pain which for me is vanity I'm embarrassed to say.

I feel so lucky to read others posts on this forum (especially the ones re: RSD!!) because it make me feel so much less alone and "apart" from the rest of the world. Even though I'm still a work in progress, I just wanted to give you hope and encourage you to take to heart what TG957 and Plum and other wonderful members have written to you. If you were given the diagnosis of RSD, it is TMS. You're in the right place. We are amongst the lucky few! Feel free to message me anytime!

Miffybunny

 

[TG957]

Hi Diane,

I read this thread with great interest and I just wanted to assure you that you do have TMS. I haven't posted here in a long long time probably because I'm a perfectionist and I didn't want to post until I was a "success story". I was diagnosed with RSD/CRPS four years ago (first it was in both feet which I'm happy to say is 99% gone) and then 2 and half years ago in both knees (triggered by a trauma from a crazy massage therapist). My knees have been a longer harder journey due to the fact that I have a mental block with the aesthetics of the way they look (swollen and mottled). I also suffer from the horrid allodynia and stabbing pains. I've made progress mostly due to TMS therapy (I went from being practically bedridden to total mobility). Now back to the mental block... I have a feeling the location of your RSD (which is TMS) is what is causing you to have doubts. I remember a patient in the pain man Dr's office who also suffered from this condition in her scalp. Don't get hung up on the weirdness of the location. TMS can strike anywhere. I avoid RSD/CRPS message boards like the plague and I don't waste time with pain man. doctors or any alternative quacky therapies. I think what makes RSD particularly challenging, is not just severity and torturous quality of nerve pain but the fact that it's not common or well known, and you can SEE the swelling and color changes. These factors fuel doubt and are powerfully distracting. The thing I've had most difficulty dealing with is the way my legs look now as compared to before. My legs were sort of "my thing" and I usually dressed to show them off. I'm convinced that if could stop caring about the way they look, the RSD would fade away the way it did in my feet. It seems that my brain had to create an even more powerful distractor than pain which for me is vanity I'm embarrassed to say.

I feel so lucky to read others posts on this forum (especially the ones re: RSD!!) because it make me feel so much less alone and "apart" from the rest of the world. Even though I'm still a work in progress, I just wanted to give you hope and encourage you to take to heart what TG957 and Plum and other wonderful members have written to you. If you were given the diagnosis of RSD, it is TMS. You're in the right place. We are amongst the lucky few! Feel free to message me anytime!

Miffybunny

Bingo! I could not say it better. Miffybunny, many, many, congratulations on your success! I feel exactly the same way about RSD/CRPS boards and pain management doctors. You are my inspiration, thank you so much for posting! It is amazing what kinds of symptoms our brain can produce if it puts its mind to it, from allodynia to dystonia in my case, and both feel unusual, weird, scary and depressing.

 

[ladyofthelake]

I've known about TMS, read Sarno for almost a year. Only in the last 3 weeks have I seen results.
I have to say the craziest part is the path to success is it entirely counterintuitive.
If anything makes sense or comes naturally...like trying to figure out the exact cause of the physical pain, hating the pain, fearing the pain, wishing everybody really understands and believes you or treating yourself like crap because you can't 'positive think' your pain away....all those things are exactly the opposite of the path to relief.
I will stop there because I think everybody's aha moment is different.