18+yr (!!) survivor of RSD is new to Forum and wants to say "Hi!"
 

Hello All!
Though I have been living with RSD, non diabetic neuropathy, seizure disorder and post concussion syndrome for over 18yrs now, this is my 1st time joining a forum/support group.
Briefly, I was in an automobile accident in April 1992. Prior to this I was a Classical Pianist preparing for the finals of the Murray Dranoff International Piano Competition in Munich, Germany (similar to the Olympics, but for music). Music is still my passion, but I am too disabled to have an advocation. Instead, I live vicariously through my 1 miracle child, who shares my prediliction for all things music. Though the RSD is at times all consuming, I feel lucky because the accompanying head injury hangover allows me to forget at times!;)
Actually, my intractable pain is still progressing. Though I'm on High dose long term Opiod therapy, I have still developed cardiac-adreanal insufficiency syndrome. My endocrine system is shot. My pituitary has all but stopped working. I have exhausted all other options for therapy, and have been told by a group of Drs. who did a study on me (18yrs is a long time to live with RSD) that opiods are all that's left. I am not even a candidate for the deepbrain implant. But lately I am more worried about the validity of being able to continue my meds in the current political/medical climate. So I am joining here to make friends, speak out, and seek/provide support to my fellow suffers/survivors. I hope to meet each of you! Please say "Hi", and if I am discovered wandering aimlessly around forums, please remind me that I am an RSD'er with a brain injury and redirect!!!:D

Welcome!!!! Friend.. sorry to hear your story but this is a very nice group of people and a nice site. We are here even if we didn't reply ... Good luck as i have had rsd/crps now for almost 2years. you may know more then me.. I know we are all very differant and thats why this is a good place to be ...

Thanks for replying! I'm hoping to hear others' stories and to compare treatment options. I need new and better/different options if available. Because I've had this for so long, I think Dr.'s don't often think to go back and revisit treatment options. I hope to see what is working for others, and consider for myself...so please share more with me when possible!

Hello WTTS,

Welcome to NT !

I'm still on lower dose opiods,partially because of my ambivalence about progressing to longer acting meds and partially several opiod phobic docs.

Welcome and thank you for sharing such a personel story. This is a great support and networking fourm.

Gabbycakes

Thanks for sharing! Good for you for holding off as long as possible; I also "resisted" going the opiod route until 2005 (13yrs) mostly using complementary modalities/meds like gabapentin, tegretol, baclofen, soma, celebrex... I practiced biofeedback; actively participated in several mind/body programs; utilized cranio-sacral w/ lymph-drainage massages to ease congestion & regulate the rhythm of my nervous system... I even tried to hypnotize the pain away one year!:D Ultimately I began to experience serious health deterioration from years of pain induced wear-n-tear; my body was done and needed relief. Opiates were a lifesaver--literally. Dr. said I walked into clinic in physical shock--which is lifethreatening. Even so, I tried to keep doses low at first.

If you don't Absolutely need opiates, I agree not to take them, and to use as little as possible for as short a time as possible. Funny&hypocritical coming from me, huh?!;) I have not encountered Dr.s unwilling/unready to prescribe these. I was the 1 saying "not yet" for years. I'm always keen to hear what works for others, in case I might be able to utilize also. Anything to change direction here and possibly reduce/end these meds is most welcome!

Hi Sunshine, we are so happy you have found this wonderful group of compassionate-supportive friends. What a wonderful gift to have a child-I also had a miracle baby after 12 years of marriage at age 31. She is now 31, which makes me 62 LOL Also have a wonderful son in law.
I'm so very sorry for you car accident and outcome. RSD is a progressive disorder for the most of us. Mine came 15 years ago after surgery-had frozen shoulder, but wasn't diagnosed for 4 years. I did have physical therapy and massage therapy for a year to get the use of shoulder back. My therapist told me it may go to other side-I thought that was strange as my surgery was just on one side. Had a remission for a year or more and then YUP it was in the other side! more therapy and another remission YEAH- Still didn't know what was behind this, Moved from Oregon to Arizona and while water skiing, felt nerve pull in left hand (original site) Dr. said I had Rheumatoid Arthritis- tests were negative, but he disagreed. I disagreed with him and flew back to Oregon to good sports injury group. 1 minute-diagnosed rsd and sent for confirmation tests. started physical therapy and my hand ortho ordered a Tens Unit. Which I liked. Back to Arizona and found neurologist-tests confirmed-hand ortho and his therapy group. They also did desensitization, which I also did at home 7 days a week. If you have any questions about that I'k be glad to explain. This time my fingers didn't recover completely=have a claw hand, but can cut my own food and peel potatoes etc. so very grateful. another remission and then moved to other hand. more therapy. Then my neuro later said I had full body rsd and suggested a psychiatrist to help me cope. I didn't like his two suggestions, and found one in the YELLOW PAGES Crazy huh But a gift from above. Have been seeing him for 6 years. He saved my mobility in feet. my toes started curling up and he had me in my pool 7 days a week exercising and in 4 months my toes were touching the ground again. Yeah
I now have internal RSD which is miserable. He just built 2 clinics with HBOT I'm going to try. He has been researching a reading about ketamine infusions and is for that. He is a neurologist, psychiatrist, internist, pharmacologist, HBOT educated-also other procedures. I quit sleeping at night Ambien cr didn't work-so he included me on his 200 person trial study for fibromyalgia, which I also have. The medication seroquel xr works on sleep. I take 150 mg and sleep 10 hours every night. so grateful.
I have skin conditions, that hurt and he is researching mixing some meds for skin-ketamine, anti-inflammatory meds, lidocaine, & ?? So soon will have that for my red dots, sores, lesions.
One of the best things that has kept me mobile is swimming. Temp needs to be 86 degrees. Also stretching is important. I work out with 1# weights for arms. and will walk when the weather cools down. I live in Scottsdale AZ and it is 105 degrees still.
I have attended grief counseling when my parents died-2 years of counseling. Biofeedback is very good for beeing in touch with our bodies and skills to relax.
there are other meds that work with nerve pain. anti-anxiety meds-lorazepam anti-depressants cymbalta. Most of us have high blood pressure from rsd-I''m on two different ones.
RSDSA is a wonderful side-put in your zip code and can find local support group. rsdrx.com is a great website Dr. Hooshmand put up-he is retired but still has site up. He was in Florida. Under puzzles list is 150 questions and his answers regarding rsd.
Again, Welcome to our sweet family- we are happy to help when we can.
Where you name appears in upper right hand corner, you can push that and see several options on the left side of page. The one that says private message-you can push that and name of person you want to write to and ask any personal questions.
How old is your daughter? It's wonderful she loves the piano. I do too. but of course not on the level of yourself. There are many losses for sure. Most of us like yourself are not able to work, which we miss greatly. or we miss playing like me is tennis, water ski and snow ski.
We are grateful we are in Arizona instead of rain and dampness of Oregon.We came to Arizona for our daughter to finish school. The dry winters are great, but 115 degrees in summer a little much.
Take care and let us know how you are. one of your new friends, loretta with soft hugs:grouphug:

Hi welcome to the boards though I am sorry for all your struggles. I am wondering if you have went for another opinion not through this group? Such as another pain doctor? Sometimes a fresh approach or eye I think can help.
On a side note I started biofeedback a few months ago. I enjoy it. Not so much does it help my pain but my coping of the pain and life in general it does.

Hello and Welcome, Whisper/Sun!
We have a lot in common, and as you've said I can report to you that to have RSD/TBI at the same time is incredibly rare, and the two injuries work against each other. I answered you on another thread about the opiods/long term.

The head injury hangover and the RSD brain, can make coping very difficult. The difficulty with decisions, the panic attacks when you need to do something serious and can't decide and your brain shuts down. The long term depression. It just all adds up to create a 'cycle' that seems like the suction of a drain sucking you down!
My thoughts and prayers to you!

I look forward to speaking with you more. (BTW, I do use methadone amongst my 'cocktail', have had RSD for just under 28 years, have a tbi from another accident in 98, and owned two business's and was a guitarist in a couple of bands, raised two children as well, whom now that they're grown, no longer speak to me)...
My subdural hematoma was just above my brain stem, and I have huge suspicions about my pituitary gland, and there's another smaller one under it, which I forget the name of right now. Maybe you can answer some questions for me about that?

Life is just a bowl of cherries!

Be well,

Pete
asb

Wow
 

18 years with this monster...Kudo's!!! Great to have you with us...I am the nut of the family..notta.. I take no meds for pain...cold turkey RSD due to bad tummy.. RSD 3 years and counting... Welcome..hang with us!!

Hugz, Kathy:grouphug: