Question for Forest rop

Hi MiffyBunny, I have been thinking about you lately, wondering how you are doing. My computer is out for repair so I will be short and a bit limited with my IPod.
Reading your former posts, I saw the mention of Nortryptlime. W/0 my computer I can't research it, but my doctor just suggested that I give it a try. But I am extremely sensitive to side effects and so far have had very few with Neurontin. Yet that is said to work on the nerve pain but not to heal. Ellen also emailed the Somatic experiencing info to me and I will look into it when computer returns.
I am halfway through the Unlearn Your Pain book. But I stopped when there were things I didn't understand so I should contact Dr. Schubiner however my list of questions for him are in my ailing computer!
Please know you are in my prayers to come out of this as I did so many years ago in my first episode.
Lavender

 

I found the video to be great reinforcement about how to think about pain and be relieved of it.

We may not all want to undergo psychotherapy or have the money to pay for it,
but we can do something very similar by reflecting on our repressed emotions.

Most often, says Dr. Sarno, they come from our childhood. Mine certainly did, and so did a friend's wife
who was so distressed without knowing why, she became suicidal. Under psychoanalysis she revealed
that her mother had not wanted her and wished she had been a cat so she could have drowned it.
She learned about rejection from her mother and in time was able to forgive her, which brought back
her mental health.

We have the knowledge to heal from our symptoms. We just need to discover what causes them and
it will set us free.

 

Hi Lavender, Walt, Ellen, Plum and Anne and Forest,
I'm sorry I haven't responded earlier. I got caught up with major dental problems (one extraction due to infection and another tooth that is causing severe nerve pain but nothing shows up on the x ray). In any case I have been feeling quite stuck and frustrated lately so everyone's responses are so appreciated! To Lavender re: the Nortryptiline...it's a wonderful drug in my opinion. I haven't had adverse side effects except for one which is severe constipation. This got so bad I went off it for a week and told myself I didn't need it anyway. Unfortunately the RSD crept back. This was disheartening to say the least. I think I may have been giving myself too much credit for the amelioration of symptoms. I think the Nort. affects the brain pathways somehow. I would highly recommend the Nort. and if constipation has not been an issue with the Neurontin, odds are good you won't have this side effect. Although I've come a long way I'm really struggling at the moment. The shoes in my closet mock me. This has affected my self esteem and sense of femininity in addition to the pain. It sounds trivial but shoes are a big deal for me since I am short and like to dress a certain way. This is a loss for me and I seriously want to burn my Crocs. They are so not "me". It seems that no matter how much I talk to my brain, meditate, practice mindfulness etc.. This freaking problem stays the same! The same toes feel broken, the same vaso spasms on bottoms of feet, the same hellish burning, color changes ( I avoid looking at my feet most of the time). I am constantly triggered by images of shoes, people wearing shoes, shoe collections, shoe stores, shoe departments etc. I'm also anxious about summer and warm weather since I use fuzzy Crocs and I don't know what I will wear or how I will cope with the heat. My feet suffocate and flare in shoes (also can't wear flip flops because the big toe is still swollen and painful.) I'm sure that my depression over feeling unfeminine and having limited mobility is feeding into the TMS. I apologize for sounding so negative but my life is crushing me. My son with autism is getting bigger and more difficult to manage which keeps me more isolated and overwhelmed. It's hard to see a light at the end of the tunnel. I will be caring for him and worrying about him until the day I die. Its soooo HEAVY. I try to look at my situation as an opportunity to conquer challenges and become a better person, but the RSD seems bigger than me. I can't seem to override those pathways. The somatic therapy looks interesting and I do think it's time for me to seek help from a professional. The one sticking point for me is that they understand RSD and have helped someone recover from it. Otherwise there will always be a seed of doubt. I know I have to have 100% belief for this to work. Sorry too ramble so much! I appreciate everyone's feedback more than I can express.
MiffyBunny

 

Hi, Miffybunny. You do have a lot on your emotional plate. You didn't need the teeth troubles on top of the others.
It does look to me that your symptoms are heavily caused by caring for your autistic son and fearing that it will continue
for the rest of your or his life. That's a heavy load to handle.

Do you have a contact with anyone else who has an autistic child? It could help to share experiences and concerns.

I hope I don't sound like Mary Poppins, but from reading Dr. Sarno and Steve Ozanich I think they're helpful in
suggesting that you don't put so much pressure on yourself to be the perfect mother in your situation.
I'd stick with TMS healing instead of spending time, money, and mental energy on somatic therapy.
God is still the best healer. Have you asked him to help you and your son?

Steve beat himself up emotionally after his wife became paralyzed and wheelchair-bound by surgical malpractice.
Then he stopped feeling guilty and knew he had done all he or anyone could to have saved her from that.

Also, can you find ways to keep your son happier? Maybe computer games or social networking would help him.

You're in my prayers.

 

I found this in a google search at http://www.helpguide.org/mental/autism_help.htm


"There are many things parents can do to help children with autism overcome their challenges. But it's also important to make sure you get the support you need. When you're looking after a child with autism, taking care of yourself is not an act of selfishness—it's a necessity. Being emotionally strong allows you to be the best parent you can be to your child in need. These parenting tips can help by making life with an autistic child easier"

 

Hi Walt,
Thank you so much for your reply and the link! I guess I can't figure out why I'm stuck this time. It's so frustrating because I considered myself a TMS conquerer at one point. I agree that it's probably not necessary to invest time and money (of which I have neither!) into intensive therapy but I'm considering a phone session with a TMS practitioner. I wonder if my relentless daily stress is causing me to lose focus or if it's doubt due to lack of information on RSD as a form of TMS?
Anyway, I appreciate your kindness and caring responses!
MiffyBunny

 

The frustration is tms so cool down. A tms phone session with a TMS therapist would be awesome. Your relentless daily stress is giving you terrible tms like lack of focus and fogginess. And the doubt is there for sure or you wouldn't question it ok. So listen, pay attention to your reactions -- love yourself more and give your self a break from life and worry in general.

Stay strong and believe.
You will win.

Bless You

 

MiffyBunny,

Thank you so very much for sharing your experience with the Nortriptyline. My family doctor has offered it only if I do exhaust the Mind-Body approach without much relief. We have an agreement that we will keep that option on a back shelf for now. He is very kind and respects my sensitivity to medications. He has had some patients who’ve broken the pain cycle with that drug in combination with an anticonvulsant. Thank you too your previous mentions of the things you have been through and what did not work for you. That is very helpful.

As to your son’s autism, it is hard for anyone who hasn't lived it to grasp the constant pressure on the parents. Being “on” every hour of the day and having very little time spent in true relaxation could, I suppose, be a formula for TMS indeed, not to mention all your concerns for his safety and well-being. My grandson is autistic.

You and I could exchange foot and shoe stories! I rejoiced today at lacing up my 3 year old -constantly worn -sneakers with brand new laces. Whoopee!

 

Miffybunny…couldn't move on in my day without first sending you cyber hugs. I've had just a small taste of having a kid on the autism spectrum so I have glimmer of the stressors you face daily. My boy is now an adult living on his own (somewhat, anyway!) and I still have to keep a tight handle on my tendency to worry and fret over him. I have friends whose kids are more severely affected so I've witnessed firsthand their difficulties. (And I KNOW that's what kicked my TMS into high gear.)

Is there any family that can help with your boy's needs? Any community services? Even in our small city, there are respite resources available. They're best found by asking other parents. Would you care to share a little more about the extent of your boy's autism? If not…that's okay...

Regarding other forums….when I learned about TMS, I dropped a few fibromyalgia groups I was following on FB. I think I was going to do it even before I learned about TMS…it was just depressing. And every time I read about someone's tough day, I would take it to heart and then fret and future trip wondering if that's how *I* was going to end up. I tend to be a pretty empathic person so I don't just *feel* someone's pain….I *feeeeeeeel* their pain.

Oh Miffybunny….I hope you can feel the love coming from us all…and that it gives you strength to move through your day. There is wisdom in the "One day at a time" adage. I've found that at times, it's one MOMENT at a time.

You'll get through this. xo

 

MB, Your son stomps on your toe and now your other foot hurts--this makes NO rational physiological/anatomical sense to me! I just banged my big toe a few days ago and then banged the same toe a day later. I don't feel it anywhere but in that toe and it's only a mild annoyance at times. Something like that heals in a few weeks at the most even if it's broken. This a TMS forum, never seen your toe or how much your kid weighs, but I'm betting it's TMS.

G'luck!

 

I like gym shoes that have Velcro flaps instead of shoe laces.
They would be easier for kids to put on.

 

Hi Lavender,
Nortyrptiline is a fairly mild drug , waaaaaay milder than Neurontin in my opinion. It's an anti depressant that affects neurotransmitters in the brain somehow. For me it dials down the pain signals which allows me to think better and have a better attitude in general. I have tried meds in the anticonvulsant category and although they helped with the knife like stabbing pain, they gave me constant migraines. Of course everyone's body reacts differently. Considering that we are dealing with the most extreme form of neurological pain I think it's reasonable. I know a lady who has been taking it for 20 years for depression with no side effects and it has improved the quality of her life.
North Star,
Thank you so much for the cyber hugs lol. I really need them and thanks Herbie and Walt for your encouragement! My daily life is sort of indescribable...my son is seven and not fully toilet trained due to severe G.I. issues (along with asthma and allergies). There are many poop episodes that defy description (he has to take laxatives etc. so it's not normal). He is non verbal and I have to syringe nutritional drinks (100 syringes a day) while he runs away or resists. He's on many meds and I spend a lot of time dealing with insurance, therapists, doctors and behavioral issues. I have some help from college kids (thank goodness) which enables me to help my older son with his homework and I'm fortunate to have family around. It's not the most normal way to live either since many doors and cabinets and refrigerator must be locked. We can't have much furniture or any décor on walls or shelves for safety issues. I live in a state of constant hypervigilance and exhaustion basically. My son often wakes up during the night as well due to sleeping issues. I do think that my autonomic nervous system went into overdrive from the daily stressors and a couple of major traumas. I wouldn't wish RSD/CRPS on my worst enemy but I do feel fortunate to have hope from this site. Forest was also kind enough to post some helpful info. for me. Most people with this diagnosis are given little and crude treatments that are only meant to mask the pain since there's no cure. Initially, doctors thought I had rheumatoid arthritis or Lyme disease because the pain was bilateral (this happens to 25% of RSD cases because the brain creates a mirror image. My left foot is the copycat foot of the right). It's unreal what the brain can conjure. I will persevere but this condition requires sooooo much more focus than when I had muscular pain (in lower back and legs). Anyway I hope I didn't repeat myself or ramble to much! Thanks so much to everybody who reached out and thanks for listening. It means a lot
MiffyBunny

 

miffybunny you are doing a lot for your son -- that is such a blessing to be able to give to our loved ones. It is also tiring and stressful too so make sure you give yourself permission to be ok with this pressure ok. There are times when you don't know if you can keep going right? So here you need to get in touch with the emotions you have when you get anxious. Like when your getting upset at the pain or the symptoms or the life pressures -- At this time focus on your emotional feelings ok. What are you feeling. Be patient with these feelings and accept them ok. Don't be upset or angered at them. Just know these emotions are a part of you and your ok with them. Un-critical to them and un- judgmental to your feelings.

We often place labels on our feelings and then we imagine that's what we feel. No, here don't label, just feel the emotion and let it pass through your emotional body as you wait un-critical and non-judgmental ok. Doing this in the now will help you stay in the now with your true self, erasing the pressure of ego ok.

Bless You

 

Oh, MiffyBunny! It's no wonder your poor nervous systems is so overtaxed. I wish I had a magic wand. I would flood your home with peace and heal your boy. And heal you. I had toileting issues with my boy until he was around 12…but nothing near on the magnitude of what you're dealing with. I remember just bawling and bawling over the frustration.

I hate to suggest anything because I know you have a team of folks and you are obviously a very intelligent and educated woman but I will throw this out. Have you eliminated wheat and milk from his diet? Most autistic kids have leaky guts and wheat and milk create havoc with their GI system and even amplify autistic behaviors. "Unraveling the Mystery of Autism" by Karen Seroussi is a great resource on this topic.

We also did about 40 neurofeedback sessions for my boy. I think it helped his sleep issues and hand flapping behaviors. There is a young family I met during that time. They were doing it for their severely autistic daughter and reported a calming effect on her. (She was nonverbal like your boy.) If you'd like to hear more on that…I'd be happy to PM you.

Are you getting any respite time at all for yourself? Like a day away somewhere? (Yeah, this is the advice that I was never able to take!) I'm glad you've got supportive family and some college boys to help out.

Holding you in my heart, dear one. xo

 

MB, just saw your mention of having a son with autism, that would be a HUGE stressor! I have seen other TMS board members maybe here and/or at the TMSHelp Board who have autistic children. You may want to try a "SEARCH" here and there to find others and share ideas.

 

Hi Anne,
I meant to reply to your post but it slipped my mind until yesterday. It struck me that you are right about the possibility of recovery despite lack of testimonials or case studies of others with the same diagnosis. I was so hung up on that! Fortunately thanks to Forest and another woman's story of recovery on the internet, I do have three examples for inspiration. I appreciate your confidence in me and pointing out the fact that why shouldn't I get better even without any examples? An individual can suffer from back pain for ex. but can still reject Dr Sarno's diagnosis of TMS (despite thousands of success stories) so it stands to reason that the opposite scenario is possible as well. I was reading "Anatomy of an Illness" which illustrates one man's decision to recover and it drove home that concept. Thanks again for your feedback re: this issue!
MiffyBunny

 

Hi MiffyBunny,
This is one of those days when perhaps were could encourage each other. I must comment on the fact that you seem to have an underlying confidence based in the fact that you are an experienced TMS conqueror. Good for you! A real plus!
I find that I tend to do worse when I try to hide the pain from others. I think this very trait itself definitely stems from some childhood issues. I just can’t seem to be frank and open about being in such excruciating pain, excuse myself, and exit the scene to deal with it. For some reason, I try to carry on with a stiff upper lip.
That is at least one of the factors in my self- imposed isolation. On Sunday, I had a visitor and did not want him to know how much I was suffering as I bravely “put on a happy face.” But then the overall nerve pain of the RSD became even more tortuous and hasn’t dialed down much. I am on the heavy-hitter pain meds today. I had no choice. However, the Aha! Moment came today when I realized this was a form of “stuffing” emotions. These types of incidents have never failed to worsen the pain. Yet, I don't know any other way to handle it except to have a complete breakdown in front of loved ones in reaction to the pain.
If you have any uplifting or encouraging words or advice about this today, I could use them!

 

Hi Lavender,
{{{{cyber hugs}}} I completely understand the inner conflict between presenting an outer picture of "well being" and confiding in others about the hellish pain you are experiencing in the moment. I grappled with this issue for a long time as well. When I tried to fake it in that way, in a sense I was pushing back at the pain which as you said just perpetuates the pain strategy. On the other hand, if I felt as if I was complaining or whining too much, I worried that this alienated people which would further my sense of isolation and aloneness. I realized over time that there is a middle ground. When I am in public settings or around people I don't know (like the cashier at the supermarket for ex) I portray myself as well and healthy because when I do that , I find that the world reflects that energy back to me. I allow myself to share my emotions and physical pain with those close to me especially when I'm struggling. I don't think you should have to put on a brave face. It's perfectly acceptable to let a visitor know for example that you are experiencing pain but that doesn't diminish how you feel about seeing them. You can be in horrendous pain and still be "ok" at the same time. YOU are far greater than the pain sensations you are experiencing. They do not define you as a person. One thing I've learned from pain is that it's a signal to how I am BEING. The more I resist the pain or try to ignore it, the worse it gets. When I accept it for what it is - a signal, I can acknowledge it, shift my focus to what is bothering me emotionally and I can let stuff go. Since I have stress generating almost 24/7 it's easy to shift to thoughts pertaining to things that bothered me within the last hour . By " making friends" with the RSD, I have disabled it's power. I no longer feel like an intimidated victim. I also don't focus on the outcome but try to enjoy (I know that's a strange word to use!) the process. Over time, little by little by little, I gain confidence and the pain recedes. I think of it as a scar that fades.
As you know, this isn't a linear process (as evidenced by my posts). I compare myself to how I was (starting in June, in a wheelchair in Nov.) and recognize that I've made progress! I'm walking in crocs and I know that the more I improve mentally and emotionally, my body will catch up. I believe I will wear sneakers, sandals and boots again! I'm starting to let go of my thoughts re: nerve pain (and vascular) as being in a different category. If people recover from stage 4 cancer, I can see no reason why either of us can't get better as well!!
One thing that I do think is reasonable for you Lavender is to consider trying the Nortryptiline as your dr. suggested. It is a mild anti-depressant with far far less side effects and risks than pain killers (which don't work anyway). I was on a plethora of drugs for a few months (including Ketamine!) and this was the only thing that helped. It's not masking anything but rather normalizing a brain that's gone into overdrive.
I hope sharing my journey helps you! email me anytime!
MiffyBunny

 

Miffybunny, my heart goes out to you. Have you seen a post recently showing a TED video on self-compassion by Dr Kristin Neff. She has an autistic child. She described an incident with her child in her talk. Perhaps you could contact her and see if she can help you with the challenges you have with your son.

Her site is: http://www.self-compassion.org

Regarding my RSD, I recall I wanted my foot amputated at one point so I could get a prosthetic one, such was the discomfort I had. I remember feeling it was like I've been given another person's foot and my body was rejecting it. I felt such despair, but movement was key to recovery, and swimming really helped me, especially as I couldn't walk very much.

Reading your story reminded me of Claire Weekes, in her book "Hope and help for your nerves" with her reference to the heightened state the body is in when adrenaline and cortisol are never switched off. TMS thrives in these conditions.

I highly recommend you read the Ace1 post on the other TMS help forum (his steps to recovery). Print if off and read it over and over. It will help you as it did me.

Reach out for support with other parents with autistic kids. Stay clear of RSD forums and the like; they're full of negative people and stories. Your RSD is TMS, especially as it jumped to your other foot. Also, remember how it started - your son landing on your toe. The physiological weight of him landing on your toe triggered TMS.

You have overcome TMS before, so keep reminding yourself of this. And don't knock the Crock - I love mine!

You will get there. We're always here to help you. Seek those facing similar challenges for love and support that you can receive. Other parents of autistic children will be enriched from knowing you.