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Question for Forest rop

Hi Colly,
I was having a happy dream when the vasospasms in my feet woke me up. As reality set in, my thoughts started to spiral and I decided to get on the computer. Imagine my change in mood when I saw your post!! I can't tell you how timely it was and how grateful I was to receive it! It's amazing that you mention self compassion because I felt it for the first time for a split second last Monday. It had been a grueling day and it wasn't over yet. I was laying on my bed as the room was spinning, winding myself up to give my son an enema (with my husbands help) and let's just say its not a pleasant process:eek:. In a flash I felt sort of bad for myself but not in a victim way, more of a "give yourself a break kind of way". This is something I need to work on and I really appreciate the link to the TED talks clip. You are soooo right about the RSD sites and even the articles on experimental treatments and studies. All they serve to do is focus my awareness on the negative and put me in fear. I think it's a process of integrating thoughts as well as body parts. My feet often seem "separate" from the rest of me. It's the physical representation of the absence of self compassion. When I ask myself why it's so hard to feel self compassion it's because of the separation I feel from the world and my true self. It's only now that I'm starting to make that connection.

Thank you so much for the Ace1 post as well. It's incredibly detailed and helpful and I plan to memorize it in time! I really appreciate your kind words not to mention your inspiring story!

MiffyBunny
 
Colly, your post made me tear up a little where you wrote about wanting your foot amputated. I have thought that so many times with different body parts…but mostly the one with severe shin splint pain. I remember thinking I'd end up with just a trunk and head sitting in a wheelchair. Sounds funny writing that but it wasn't funny in the depth of my despair. :confused:

Thank you for sharing.

Miffybunny, thinking of you today with love and compassion.
 
Yes North Star, it's like you want to literally detach yourself from the pain. Do try swimming, it really helps. It's also a great way of being in the moment, as you think of coordinating your arms and legs and breathing in the water. You don't have time to think of anything else.

MiffyBunny, I'm pleased you find the Ace1 post really useful. I love the TED talk on self-compassion. Try to incorporate this into your day, and deep breathing too. It's interesting when she describes the health benefits of self-compassion, in that adrenaline is lowered and oxytocin is introduced which promotes healing.

Think of self-compassion as your daily brain-gym routine, and gradually your brain will allow more self-compassion in.
 
MiffyBunny, if you experience dizziness like the room spinning when you're in bed, or standing, I get that now and then.

My doctor prescribed Meclizine and it works fast. It's often used for air travel sickness and also is calming.
I bought it on amazon.com. The generic kind I bought is called Travel Sickness,
Meclizine HCI 25 mg which contains Aspartame. They're sold by a company called Rugby, 100 chewable tablets
for only about $6. The nongeneric brands cost a lot more and don't do anything more.

I'm not a doctor, so I won't say use it,
but it does help me when I feel dizzy and the room spins.

Colly, dear, don't have your leg cut off. How are we going to do the tango when we get together? It does take two.
 
Heya, @miffybunny and anyone else reading this...

The following CRPS TMS success story came up earlier tonight during the Tuesday night discussion group. Paula, a regular caller, first heard about TMS through reading it and when she mentioned it, I immediately thought of this thread:
http://neurotalk.psychcentral.com/thread156208.html

Miffy, you're probably already aware of the thread as you mentioned the neurotalk forums elsewhere (that you avoid them like the plague), but I figured I'd mention it just in case.

Hope it helps someone!
 
Forest said:
Heya, @miffybunny and anyone else reading this...

The following CRPS TMS success story came up earlier tonight during the Tuesday night discussion group. Paula, a regular caller, first heard about TMS through reading it and when she mentioned it, I immediately thought of this thread:
http://neurotalk.psychcentral.com/thread156208.html

Miffy, you're probably already aware of the thread as you mentioned the neurotalk forums elsewhere (that you avoid them like the plague), but I figured I'd mention it just in case.

Hope it helps someone!
Click to expand...
 
Forest,
Thank you so very much for sending this along. Amazingly, there is quite a coincidence here.
Although not a reader of Neurotalk, ( your link ) in 2012, I was contacted by one of their members whose 2006 response to “Ness” is shown in that very link!
At the time of her contact with me, she had just been totally healed at a healing service and wanted to encourage other sufferers of RSD. The person praying for her even had to honor her wishes not to be touched due to the extreme pain she had upon arrival. She left in complete freedom of pain which did not return. Again through a third party, it is my understanding that now, 2 years later, she is still 100% free of RSD. This gal had gone though a lot. As us you are aware of by establishing this forum Forest, hope is everything!
Thanks for that !
 
Hi Forest and Lavender,
Thank you so much for posting. Yes I was aware of it and I actually refer to that particular post often since it is a rarity! I wish I had listened in on the discussion group. Does Paula have RSD or some type of neuropathic pain? Thanks for thinking of us!
MiffyBunny
 
That's an inspiring story, Lavender. Thanks for sharing and thanks for your kind words. I'm glad to hear that it sounds like KathyD is still doing well.

Miffybunny, Paula spent an hour and a half with Dr. Zafirides and he said that she was classic TMS. Her most recent main diagnosis was frozen shoulder and I bet she didn't fit the diagnostic criteria of RSD/CRPS very well.
 
Hi MiffyBunny
The “Doctors” TV show featured a CRPS brief segment about CRPS on Monday but I can’t find it on their website. The guest/patient was a 16 year old young man who had tried almost every treatment and medication. After his story was told, he was given a gift of Calmare treatments. I think I remember your stating that you had tried that. I do regret having watched it however. I think it struck fear in my heart even though it was meant to educate the viewers about the condition.
I think of you often and appreciate your sharing on the forum.
Lavender
 
Lavender, I don't think you're alone in feeling fear stirred up watching the Doctors. I think shows like that anymore are a breeding ground for TMS. They stir up fear and put suggestions into people's heads so their subconscience can start working up symptoms. I avoid them like the plague. Ditto for women's magazines. It's a bunch of fear mongering clothed as education, IMHO.
 
Hi Lavender and North Star,
Yes I went for two weeks of Calmar treatment in Rhode Island and it was an epic fail. To be honest I knew within the first five minutes it wasn't working but I was so desperate that I stayed the course. I often wonder if it's a placebo effect but it has helped people so who knows. I definitely won't waste my time or money on it again. I agree with you North Star that shows like The Doctors" and "Dr. Oz" drive me nuts! It's like bubble gum medical advice and glossed over conditions. I saw one episode that really bothered me where they featured interstitial cystitis. It was so obvious that the lady (she was a mom etc.) was in absolute terror. She said she would have preferred cancer as a diagnosis. It's so frustrating that no one ever mentions TMS. They always give a smoothie recipe at the end as to put a smiley face on the whole thing. Uuuuugh! I guess it would be heresy in the medical/pharmaceutical industry. All those shows are so vague and useless in general... Thank you for thinking about me Lavender, I really appreciate it. I actually think about you quite often as well!
MiffyBunny
 
North star, thank you for your kind and helpful reply. You are so right about the fear behind their featured stories. I had tuned in because I heard the segment advertised as "a breakthrough in the treatment of chronic pain." of course it turned out to be RSD alias CRPS. The fear within me seems to be a dread of the pain returning in the worst intensity, and having experienced it to that degree I tend to replay the emotions that accompanied those episodes.
P.S.
Your pup is adorable
 
Hi MiffyBunny and thanks for outlining your experience with Calmare. My family had wanted me to try it but being on Neurontin disqualified me.
HBOT was also considered until I did the research. It said to be helpful when the pain is localized but of no help once it has spread. On either case, I am not fit for travel or staying in a hotel.
I hope things somehow get a little easier for you with your son. In fact I think I saw a Doctors show once about autism and the mom's in the audience
were clearly frustrated over the lack of solid information. The guest physicians were apologetic however at their inability to supply answers.
Lavender
 
Lavender, thanks for your kind comment about my Daisy. :) Yeah, these medical shows bring the nursing or medical school experience - that tendency to diagnosis oneself with whatever malady you're studying - to the masses. When I was a nursing student, I contracted several horrible conditions. ;)

Another fear monger is Readers Digest and their health articles. Gotta keep those magazines printing!
 
I think we were all a lot happier and healthier before television doctors and Google searches on health issues.
Dr. Oz seems to stretch to come up with the "Pain or Worry" of the day.
How can people in the audience on these shows waste their time being there?
They're sitting ducks for TMS.
 
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