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20 yrs and still in extreme discomfort

Wonderful news about your friend! Thank goodness.

I like your story about having no pain that time. It really is proof you have TMS. I know you will get back there one of these days.
 
Thank You Diana-M, your thoughtfulness is greatly appreciated. Hearing my girlfriends voice was very emotional yesterday, tears of relief! I also wonder how I had no pain after my flight that day and why I don't seem to be able to get there again. As you said don't get discouraged, journal, etc. I hope you're doing well. Thank You.
 
Anyone have TMJ as a tms symptom? My last tooth on upper arch is sore and my ear is bothering me. Not awful pain just very sensitive at this point. I have been doing as much journaling as possible with my home situation. Seems like everytime I sit down to journal the world needs me for something. Going back to repeat the structured program also. It's been a difficult wk. This two shall pass! Nancy
 
My back is not good this am, all of a sudden I can't walk on my r foot. My toes ache when I try to walk and believe me I can tolerate alot of pain. I seem to have panic attacks upon just waking. All sorrow comes to mind the minute I become conscience. Guilt, Shame, feelings of isolation. I cannot take my son out any longer without bus services as I can no longer lift that heavy w/c. Depression may be playing a hugr role here. I have no support here and have come to believe I was never soothed from day one. Working on trying to relax, meditate, journal but pain is rising. Any help would be appreciated. I am trying to stay strong.
 
Nancy
SO sorry to hear of your troubles. Your body is calling uncle for you. Your load is just too heavy for one person. Can you get some support through free counseling or maybe a church group? There are lots of organizations —even govt agencies—that could probably give you some moral and even physical support. Sending prayers and hugs your way!
 
I am very depressed concerning my life and don't know what to do. All I think about are the bad things, difficult times in my life which were many. I was always able to handle evrything in a sensible way and now I just wish I could go to bed and stay there. Fearful all the time concerning my son. I look at him and think what his life should have been without the stroke. I know if he had just taken the BP med this may not have happened. I realize this is water over the bridge but it hurts so badly I find it hard to face. The pain in my legs and hips, lower back get worse if I can't stop thinking about it. He's a very social guy and now very few come to see him and I can only fill that hole so much as his mother. He is an adult and Mommy is not his choice of entertainment naturally. Just looking for support and yes, I have looked outside our home for places he could go for daily socialization, nothing for his age group. I took him many places when I could but then developed a umbilical hernia and cannot lift the w/c any longer. The surgery for removal was an open surgery and I don't want to have that again. I am feeling very down as I was a very active and healthy person before all of this happened if you have read my other post. Thank so much for listening, Nancy
 
Hi Nancy
Do you have a spiritual belief of some kind? If so maybe you could connect with a group of people with that same belief. Your problems are huge, so you are going to need massive help. A community or two—in person groups. A support group for people who are caretakers. In my opinion, you really need more support. Sending warm wishes!!!!!
 
Yes I do. I pray to God alot during the day and it does help me alot. if I didn't have this pain I could deal with things much easier. My only choice in the state of NJ is to have him live in a Nursing Home. Heartbreaking to me. He isn't old enough for assisted living, nor is it affordable at 4,000 monthly if he was 55 or older. We even experienced a group home and it was a disaster. Dirty conditions, poor staffing etc. His intellectual level was well above also and abuse is reported often. I own a small home and have two mini schnauzers who we love. It would not help to have an aide helping, it would just add to my tensions. I wish I could cry as I think the release would help but my Dr put me on an antidepressant for depression and pain. I think I will talk to her about slowly discontinuing. I believe my pain is TMS. Thank You Diana-M
 
I’m so sorry for your terrible pain and suffering, Nancy. It’s so sad about your son! I will pray for you. I truly believe God sends inspiration and help when we need it most. Maybe there is a miracle solution you just don’t know of yet.
 
I so sorry for what are having to go through. You sound like someone who is very together but has just a a terrible hand of cards deal to her.

For what it's worth, I have a had a lot of dealing with various social services (for my CFS, here in Canada); they are always inadequate and frequently abusive, mentally at least. I find it infuriating, especially when everyone blithely refers you to them. No one wants to know what they are really like, people (my family especially) absolve themselves of any obligation towards you on the principle that you can get social services....

I also have a huge amount of anger towards doctors, over much, much smaller things than what happened to your son. They are, IMO, usually arrogant, oblivious and entitled. If something as bad as what happened to your son had happened in my life,I can't imagine how I would feel.

In addition to trying to feel your feeling more, you should try and do everything you can to soothe yourself also,...movies, good food, cocoa, whatever things give you comfort..
 
I was a respite worker in Canada through the end of my high school and college years. I was neither abusive, neglectful and went out of my way to ensure families had undue stress. I did not work through an agency. I had a lot of work.
My Mom also tried using respite or care workers and found them unsatisfactory (except for me, who allowed myself to be bossed, overworked and belittled - I was a goodist).
Why might it be so hard to allow people to help?
Perfectionism.
My Mom also has TMS and a perfectionistic personality and when people didn’t do everything her way and in her time she got stressed out. Granted, some staff sent were not great, but it was an opportunity to get out, have someone different talk to my Dad for a few hours. Her stress couldn’t let her handle even this.
I would use some TMS techniques to help recognize where and when perfectionism might come up in your life, your need for full control, and how that has impacted your ability to feel like you can let go, even for an hour or two. Your brain needs this even if your TMS mind tells you every reason for you not to feel safe in letting go.
 
Diana-M said:
I’m so sorry for your terrible pain and suffering, Nancy. It’s so sad about your son! I will pray for you. I truly believe God sends inspiration and help when we need it most. Maybe there is a miracle solution you just don’t know of yet.
Click to expand...
Thank you for praying for us and giving us hope for the future, you are so kind and considerate.:Dwavea
 
Cactusflower said:
I was a respite worker in Canada through the end of my high school and college years. I was neither abusive, neglectful and went out of my way to ensure families had undue stress. I did not work through an agency. I had a lot of work.
My Mom also tried using respite or care workers and found them unsatisfactory (except for me, who allowed myself to be bossed, overworked and belittled - I was a goodist).
Why might it be so hard to allow people to help?
Perfectionism.
My Mom also has TMS and a perfectionistic personality and when people didn’t do everything her way and in her time she got stressed out. Granted, some staff sent were not great, but it was an opportunity to get out, have someone different talk to my Dad for a few hours. Her stress couldn’t let her handle even this.
I would use some TMS techniques to help recognize where and when perfectionism might come up in your life, your need for full control, and how that has impacted your ability to feel like you can let go, even for an hour or two. Your brain needs this even if your TMS mind tells you every reason for you not to feel safe in letting go.
Click to expand...
 
Sorry it took a little time to respond. yes, I am a perfectionist but I can accept help. He has been to respite twice in 5 yrs. He is actually going tomor for 10 days. I know the staff will or can't give meds on time, only showered a few times a week, food isn't nourishing, but it's only 10 days. He needs more socialization and I need time to get my head straight and relax. I wish I had someone like you who I could trust on a regular basis. Your a good person. Nancy
 
nancy said:
On one of the flights I actually used a w/c thru the airport. My return flight was smooth and the plane was almost empty. I read Dr Sarnos book for the 2 hr flight and here's the result. I got up to remove my upper carry on and started to move into the isle I noticed something very strange, I had NO PAIN.
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Nancy, your posts always touch me. They are so heartfelt even though you have suffered through so much adversity and misfortune.

I'm taken by the quote above from one of your posts. You are one of the lucky few who have experienced total recovery from TMS. You know it is possible.

Maybe a good course of action for you is to try to reproduce the conditions that led to that recovery experience on a regular basis. During your flight you were free from distractions and the pressures of all that was waiting for you on the ground. And you were enveloped in the words of Dr. Sarno to inspire you. Perhaps you can carve out some time and space daily, and either read Dr. Sarno or listen to his audio book that he reads himself (Healing Back Pain). His voice is very soothing and comforting. It inspired me during some dark times.

Wishing you the best.
 
Thank you Ellen, brilliant idea! Mt son is in respite now and I keep trying to get things done that I cannot get to when he's here. I tend to be a perfectionist and like to keep my house up, including paperwork, outdoors, etc. I have to stop and just try to relax and work on your suggestion. That feeling of walking through the airport was incredible. I had no idea what happened until I reached home and then the pain set in again. We all have the same wishes and hopes, my best to you, If it does the trick, you"ll be the first to know. Thank You, Nancy
 
Ellen said:
During your flight you were free from distractions and the pressures of all that was waiting for you on the ground.
Click to expand...

In the past when I have been sick, I have started recovering with the image of myself riding a train, like life is a train and I am just going to ride it, not worry, wait and see where it goes. I have literally just laid down on the sofa and waited...

Of course on a plane you know no one is going to interrupt you or bother you, hard to reproduce that in daily life.
 
Just a short update on how the Gabapntin was working. Well it helped with pain a little bit but one of the side effects was memory loss and oh believe me it hit me hard! I can't take care of my son when I felt so sleepy and was starting to remember his meds an hr or two late. I had no memory difficulties prior. I am almost finished titrating off of it and the pain of course is getting back to where it was. I'm wondering if this pain level is rising because I was expecting it? Advil will have to due. I pray everyone has a wonderful Holiday Season and are so busy you all forget about your discomforts.;) Nancy
 
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