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I have been on many opiate pain killers for 19 yrs. I f I hadn't had pain relief I know I would have blown my head off just to make the pain stop. The only time I'm not in pain is when I'm sleeping. The pain and spasm return with a vengence when I...
onmom..sometimes coming to a new place where is so much going on and so many people it can feel a little overwheming..but if you have something you want to talk about..or an answer to something there is always someone who will be happy to talk to ...
robin..i have to agree with ellen..it is SO good to say that you have been missed!!..as have your unique view of life and way of encourging people with your words and knowledge..
i'm so glad that you have found a way to manage your progressions.....
Karen,
I was put on Dilaudid , which is similar to morphine.
For (possible) Fibro pain.
I was taking 2 mg every 4 hours and my Dr just today, put me on the long acting 2 x per day, same as you.
I can also add 2 mg as needed.
Though the past year ...
Hi, I have been taking extended release morphine for years, it has been a life saver. It releases a little bit of medicine every two hours over a 12 hour period. The timing is just right. The only downfall is that like many others, it is a control...
Profile Information
- In the online health communities I participate in, I'm:
- not really sure where I fit yet
- More about me (my health interests and reasons for joining WEGO Health)
- i have had torsion dystonia for 22 years..it effects every part of my body..i have to use an electric wheelchair to get around and am pretty much housebound..dystonia may have twisted my body and taken away many things in my life that i love to do..but it has also given me back so many wonderful things..i have my family..and friends who give me a reason to keep going with a smile on my face and in my heart!!
i am truly blessed to have a wonderful husband who has stood beside me
for 27 years..22 of them with me thru my journey with dystonia.. never faultering qnd always encouraging and understanding..he is my best friend and helps to keep me strong..i have a beautiful 24 year old daughter who is the sunshine in my life..she grew up with the many changes of my dystonia and because of it has grown into a very compassionate young woman..she loves people but has a special place in her heart for people who have special needs..she has worked with st. jude children's hospital and has gone on two mission trips to jamaica where she has spent time with kids in the orphange and in a hospital for disabled children that have been left behind by their parents..she has learned to look inside a person
into their hearts..and what she sees on the outside..and she has a smile for everyone and it never fails to brighten someone's day..she is my hero!!
dystnoia may have changed the way i live my life..but there is a silver lining in the cloud of dystonia..and i am so glad for all the good things..and the wonderful people that it has brought into my life!!
what dystonia can and can not do
It can make our muscles twitch..and body parts flop..it makes us "junkies" for our pain med's..and it makes us rest alot..
It may take away our independence..but not our freedom..
It may cause others to stare..but it makes us want to share with others the story of our "dystonian" way of life..
It sometimes brings us pain..but it makes husbands and wives and families
stronger with so much to gain from a life with so many twists and bends..
it can make us silent on the outside..but shining on the inside..
it can put crooked smiles on our faces..but never in our hearts..
it may bend us..but it will never break us!!
It may take away our independence..but not our freedom..
It may cause others to stare..but it makes us want to share with others the story of our "dystonian" way of life..
It sometimes brings us pain..but it makes husbands and wives and families
stronger with so much to gain from a life with so many twists and bends..
it can make us silent on the outside..but shining on the inside..
it can put crooked smiles on our faces..but never in our hearts..
it may bend us..but it will never break us!!
Comment Wall (31 comments)
- At 8:06pm on November 7, 2009,
Stace said…
- Hi Karen.. thanks for the warm welcome and info!... I have cervical and oromandibular Dystonia.. (tardtive).. for about 8 yrs.. I love to take in and spread awarness, re: dystonia, anywhere I can. I tell anyone who asks.. and some who don't. Kids are great.. if someone stares at me in public.. my nieces and nephews usually begin to explain aunt stace's spazzins... hope to be here again soon..
- At 11:15am on October 25, 2009,
Stace said…
- Hi Karen, Thanks for the welcome!, I've neglected to come here since I joined and I am so glad I chose to pop in today.. I need to take more time here and really read posts and comments.
- At 2:11pm on October 21, 2009,
hopeful said…
- Karen, Hope your doing better. I went to appt. yesterday. The drive was to long for me. Made it to office w/cane. When I got called back by nurse movement very difficult bent over w/ stomach spasms everything joined in. waited for dr took a flexeril had hard time speaking. Mridha wants me to see the guy that taught him in southfield another long drive. I'm still on deporkote and knolopin although I was taking the knolopin 1 at bed time as needed he said no 1 every night. so thats what i will do I'm not scheduled to see him again till jan. Leaving the office was worse I basically couln't move forward leaned against wall felt like someone was punching me in stomach spasms everywere. hubby had to get wheel chair to get me out of there. tears dropping to the floor while still bent forward while people watch me go by. What a horrible day. resting today and feeling very sad. Did mirhda ever send you to see someone else? hope your day is going better! LOVE&PEACE hopeful
- At 5:46pm on October 13, 2009,
hopeful said…
- Hi! Karen, I saw DR.Mhridia Sept 21, he kept me on the Deporkote another month flexeril and knolipon at bed time if needed. He said I have torsion dystonia. No cure. The medicine doesn't seem to help much. I'm having to use the cane more in the house. If we go anywhere like walmart have to use wheelchair. My tremor has ben worse I have very slurred speech at times. Been walking on side of left foot for 2 months right foot joins in at times. When I shuffle around the front of me is bent forward. When I overdue it my whole body will spasm. I'm continuing to stay positive. And I like Dr. Miridha alot he's on my side. I see him again Oct 20 . This dystonia hit me 7 months ago can't believe how fast its has immobilized me. I did find a support group close to me their having a meeting in february. I'm so sorry your having such a hard time. The doctors show oct 14 is going to have a women with dystonia on. I hope you find something that helps. Yes the trip to dr. is long but worth it. Talk to you soon. LOVE&PEACE hopeful
- At 7:51pm on August 16, 2009,
hopeful said…
- Hi karen, I don't know if my other message made it to you. I'm not very good on the computer. I saw in one of your messages you go to Dr. Debasish in saginaw, MI. I'm going to see him tues Aug 18. Would really like to ask questions about him I'm very nervous. I am 37 and have symptoms all over from head to toe. Went to u of m was told I had dystonia and that was it also saw a couple other neuro told me to see phsychiatrist. Hope I'm going to someone that truly understands dystonia.
Hope to hear from you before tuesday. LOVE & PEACE hopeful
- At 9:17am on August 12, 2009,
Karen said… - Hi,
I have cervical dystonia which has spread to my upper back and also the other side of my neck is very tight too. I know exactly what you mean about reading and not typing. I find that there are so many days I have a hard time forming a coherent thought and my fingers just don't want to hit the right keys. Hopefully, very soon, we will get better relief. This disorder is so tiring and painful.
- At 12:54pm on August 11, 2009,
Deanna said… - Did you mean Sue or Deanna? This showed up on my page.
- At 9:01am on August 9, 2009,
Karen said…
- Hi Karen,
I'm so bad with exploring all that there is on this website. I just discovered your e-mail to me! You are right, there are lots of Karens on this BB. So glad to have another friend! Hopefully all of us together can fight this dystonia out of us.
Talk to you later!
- At 12:31pm on July 10, 2009,
joanne said…
- Hi Karen,
I can't believe that i havn't looked the the net before now. There are people out there which have dysonia. I have had dystonia for 2 years and find it hard to come to terms with still from time to time. You sound so possitive!
I am 41 years young and have 4 children, well not all children now. Oliver 20, Ashley 18, Evie 15 and noel 8. I have botox every 10 weeks and have nw been offered DBS. I t would be good to hear from you.
- At 9:27pm on June 8, 2009,
suej said… - Hi ,
You are truly an inspiration to me to hang in there. I got a diagnosis ~ a month ago after going through 4 drs and numerous tests. After reading what you have written I know I'll get through this good day and bad.
Thanks!
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