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-   Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)
-   -   Spreading continues...what to do (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/125707-spreading-continues.html)

Kakimbo 06-24-2010 01:02 PM

This a great thread! I am in the depths of depression and acceptance now. Just very, very low. Kids growing up and away, fighting with w/c and SSDI, trying to adjust to my new meds and treatments. Just trying to be. Sometimes I feel like I am on one of those playground spinny things and I can't hold on anymore. Lost, confused, foggy from meds. I would like to just lie down and rest. Everything you all have said is exactly what I feel.

Thanks my friends for helping me up today. I really needed it.

Much love to all...

Kim

Sandel 06-24-2010 01:26 PM

hi sory for your spread..
 
Multi-spread?
I recomend subcutanious lidocaine infusions, they work systemicly, when I started getting lidocaine infusions 2 years ago I was told that "subcutanious lidocaine infusions were given when there is more then two limbs involved and when there is spread happening".
And something you can do for yourself is take grapeseed extract.. it contains 20x more antioxidents than vitamin C. (and also up your omega 3's) I would start the home regime ASAP, studies show that vitamin C (antioxidents) can stop CRPS from taking hold in up to 80% of injurys and surgerys if given for 50 days consecutivly after the injurys.
Talk to your doctor about the subcutanious lidocaine as well it has realy made a diffrence in my life.

Good luck hon
:hug:
~ Sandra

ps.. it was too late for my spread so I can't use me as an example, but I do know antioxidents tone down my flareups.

Wilbyfree 06-24-2010 10:16 PM

Quote:

Originally Posted by RNcrps2 (Post 667803)
I have had such a struggle with acceptance. I have also stuggled with being on narcotics forever. I have done water therapy, biofeedback and other relaxation techniques to come off narcotics. It worked briefly, but life was no better. I was clearer which forced me to view how life will be. A lot of crying. Choices- i was put back on narcotics and to think about SCS implant. The trial(which i had over a year ago) helped but was very positional. Fear of spreading with surgery- spread? I now have generalized RSD. We don't think the tendon/nerve surgery worked-so if nerve is still compressed my RSD will continue to spread. Ketamine-i was recommended ketamine coma. I won't do that for a treatment.
Last week I woke up with RSD in my low back.
momof4

Dear Momo4;

I am so sorry to hear of your struggle, challenges and pain. Acceptance....this is just one of those illnesses that can not be accepted. I too have done all of the above and to no avail. I too have gone off all of my medications from time to time to only bear the unbearable and then I think why, I had multiple surgeries, I have had tendon surgery, nerve and both feet are now fused. I have been dealing with this for almost ten years, acceptance is difficult. What do we accept? There is no logic to this, it is so tempermental, how can we truly mentally reason with this. The highs and lows, I mean at 11 am I am doing good and by noon I can't walk. (I mean seriously, who does that!) So "what to do"? We do the best that we can do at the moment and thats just the way it is. Always, always support yourself no matter where you are at the moment. Reach out as you have to the many caring people on this forum who do understand. Meditation, exercise (when applicable), pray, hope, and laughter. Acceptance, I don't think will fall upon me, but living in the moment, good or bad has helped me tremendously. Treat the person, not the disease. Inside all of this misery is a wonderful person "you" with a painful debilitating disease. Pain is bad we are not! God Bless you, this thread has truly touched the heart.

Jeanie

debbiehub 06-26-2010 09:22 AM

spread
 
As I have continual spread I too have the feelings you all described..My son is going off to college in august and it is killing me inside. He is my light. I am so sad and lots of mornings I just don't want to get up anymore. Hubby is around but does not deal too well with this-mom cries when I tell her- friends get tired of hearing it....Just want to give up!

Deb


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