Reflex Sympathetic Dystrophy Support Group

sorry I misstyped and just now realized!! oops

like before i would doubt my self, Maybe I am making all of this up. anyway what I am trying to say is having someone so close to share your feeling/emotions with, NOW that is price less.

Gail you know how I feel about pain medicines. I don't think I could live without them. For 5 1/2 years I have kept the same level of pain medicine but my pain has gotten worse. I don't dicuss it with my family because as you know my mom does not believe RSD is that painful and if I would just go to PT I would be fine. I wonder how she would feel when you wake up at 6 a.m. and the pain in both arms all the way to my hands hurt so bad that it took me at least 10 to 15 minutes to open the bottle to my pain medicine. I had to use my teeth to help get it opened. If I had to live with out pain medicine I would not still be alive. Go ahead and judge me but when a good day is a 6 and I don't have many of them I guess they will just have to have a bad opinion of me. I use to be on this site almost every night but the pain has gotten so bad it's down to only about 3 times a week.

Hope you feel better Gail!!!

Many gentle hugs to everyone, Cindy

Cindy,

Yes, I've noticed that you aren't here every night late like you use to be, and I was concerned but also hoping that you were able to get some sleep now. The past two weeks it has been a mental escape for me to get on when the pain is so high that I can no longer cope on my own. It wasn't that long ago that a normal day for me if I was at home and didn't do "too" much, the pain levels stayed at about a 6-7 by late night. Then it would come back down overnight or whenever I was able to sleep. But, I could be pretty sure that an 8+ or 9 just would not happen unless I really overdid it or went to the grocery store and had to walk through it. But, lately I can count on the pain by late afternoon becoming very bad, as bad as it's ever been, and it's so scary. I'm not sure if this is a 'flare" or if it's just a bad response to the activity I have had to do this week (light activity). Thanks for asking and for the rest of the week I sure would appreciate your prayers, as I'll be traveling Thursday-Saturday night. I'm actually getting scared. I've got wheelchairs lined up at each stop but am nervous about them being there. Ouch! The thought of walking scares me!

I know it's hard. Know that you are loved here. Take care when you have days away!

gail

Ditto here on the labels!

Hi Gail:

I've never taken narcotic pain meds before CRPS, even for childbirth. I fought taking them, even feeling guilty about having to take them when my pain would shoot up to a "10". The pain meds used to act as a reminder for me that I have lost total control of my body. I felt defeated, a failure. Most people that ask me about my pain don't really understand that the pain meds for me have never really taken the pain away, they simply allow me to "breathe" through the "10" pain. Noone could ever know what this feels like unless they have had it. For me, many of the pain meds did make my pain actually WORSE or the side effects were VERY severe. I'm learning to accept taking pain medicine as a way to get through my exercises and therapy(using the Functional Restoration Model,self-taught through research). For CRPS,I have read that exercise increases the circulation and helps to heal the nerves and the central nervous system (as the brain becomes "imprinted" with pain in triggered areas over time), so with this in mind, I pre-medicate myself and make it through my therapy every day. This is improving the color of my skin and my feet feel warm now after therapy, so I know that it is working for me. I don't think less of anyone that has to take more meds than I, because we each have to deal with this disease in our own way. Many have had it longer or probably more severely than I, so I agree that we cannot judge,... only pray for each other every day. Hoping your day is as pain-free as possible, take care.

Sincerely, Thiamarie

Hello ALL!

Yes...I tried explaining to someone what my foot felt like at that time, I said imagine your foot sleep all the time. Then there are times when it feels like its burning. So taking pain meds just puts me to sleep, it really doesn't do anything for the burning. I was telling them abou going to the doctor and the doctor not being able to touch my feet. They said why go to the doctor if you won't allow them to touch your foot?

I just looked at them, and said It's not what you do, its how you do it! Talk about being irritated.

I know for me I can't take anyhing during the day other than aleeve because of my 4yr old and I need to be "Sober" to deal`with him. Generally I take 800mg of Motrin and 5g of valium my cocktail,and go to sleep.

It's hard dealing with a disease and being in constant pain. So yes you are tired easily along with being easily irritated.

I appreciate all of you who jumped in here to talk about your experiences with pain medications and the attitude of others. When I asked the question I was about to go see my son and his family (new grandson) and my son is VERY opposed to me taking any kind of pain medication. I had a nice time with my daughter who took me and my son and his family, but he made a statement in the car to let me know that he is still very opposed to pain medications in MOST cases. If you have a traumatic injury he believes it is fine temporarily and if you are actively dying. That's it. So, I just feel judged around him and it hurts. We got along because I didn't say anything about his statements about this, but it made me very, very sad. It would make most of you VERY angry if I told you what he said, but I won't. It just hurts to feel like I can't be who I really AM now around him. But, it could be worse and I still love him more than my own life.

Hey Gail -

Do I remember right that your son is a physician, or in med. school?

Howard

My oldest brother, who will not even answer a phone message from me in large part because of my illness, is a practicing manipulating osteopath who has written books on how to manipulate. He does not believe in RSD/CRPS. Thinks it is a "blocked spine" and that maipulation would fix it.

I wish our med schools, both MD and Osteopathic, taught RSD/CRPS and other chronic pain diseases and the medical societies supported research on our disease. But wishes accomplish nothing so I guess I have to put my mouth in action and start working on the MU Med school which is in Columbia, MO where I live and start with the local press getting the disease in our local veterans some publicity. That is my next goal.

Hi Rev, Gail, and anyone else with disbelievers in their life -

Many of my research students went on to med. school. After my RSD began in 1996, I continued to teach/research/etc. until 2006, when my symptoms became too much to deal with while being an active faculty member. But while I was there, I made sure all of my students, in classes and esp. my research group, knew about my RSD and its horrific symptoms.

I'm proud to say that ALL of my med. school-bound students became very activist in their med. schools about why chronic pain, including RSD, wasn't given more emphasis in training future doctors. I maintain contact with all of my old researchers, so I can track the progress in med. schools in their curricula concerning their coverage of chronic pain and the diseases that can cause it. Slowly, but surely, they're starting to emphasize CRPS to all future doctors.

Unfortunately, any docs who got their MD degrees more than 5-7 years ago are likely to be very ignorant of this essential topic. That's why one of my missions is to educate ignorant physicians about our illness, and I suggest that EVERYONE do the same!

Howard

Post edited by: cfthb, at: 06/24/2012 08:21 AM