New member - hopey

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Forum Moderator

Date Joined Mar 2011
Total Posts : 1276
   Posted 6/28/2012 7:44 PM (GMT -6)   
hopey said...
I have had RSD for 17 years. Until my husband broke his back in Dec '09 I;m not sure he knew what pain was or is. Now i'm sure he does, yet he doesn't understand the migratory nature of mine.

Physical therapy whether you do your own or you can go do it with a professional is a must. You must move even if it hurts. If you sit still and it hurts, you might as well move. If you don't, you will lost your ability to move eventually and then what? So MOVE! Doesn't matter how much or what it is, do it. Even if you can only move your arms, do it.

Along with moving, you also must REST. I have a move/rest composition to most of my day. And I try to do one thing every day that I enjoy, whether it be a show on TV or music.

Another thing most people don't want to hear is that DIET plays a major role. Sugar and bad carbs can be devastating to your digestive system and cause you to be very sick. Caffeine and anything that boosts your metabolism can be detrimental to your RSD. It is a wise decision to try and follow Dr Hooshmond's 4F diet of Fresh fruit, fresh fish, fresh veggies etc. You can Google him under RSD Puzzles.

Social interaction is critical. You have to learn to not be bothered by what people think about you. I am blessed to be part of a Bible study that also have people with cancer, fibromyalgia and other health issues. We are all very supportive of each other and there for one another. Wednesdays I do this and then Sunday go to church. If you aren't a church goer I suggest getting involved in the local boys/girls clubs or find some place to volunteer with older folks somewhere. Getting your mind off of yourself is half the battle. And yes, you still are important and you can contribute to society even in PAIN. I know I do it when I can. And it's ok when you can't.

The biggest kicker is understanding that this pain may never go away, and you can't run from it. But there are things that you CAN do-read YOU!!! can do to lessen your pain. The above suggestions have helped me immesly.

I take 800mg gabapentin (generic Neurontin) 3 times a day
that's it
oh, and I take supplements like probiotics too

I do not take opiods or any narcotics unless i can not control the pain. But because I have remained mobile and refuse to give into my pain, unless you hear my voice on bad days, or see me limp, or in pain, you wouldn't know it.

I don't advertise it. I don't have to LOOK disabled. I don't LIVE my disease because it does not IDENTIFY who I am. There is still a person in here. One with orthodics because of muscle wasting. One that has to find special shoes and has a lot of jeans because one pair may hurt one day and not the next. One who has chest wall pains, or panic attacks. One who can't write one day or speak the next. But there are books to read and things to grow. people need me. ANd I bet if you look around, people need you too.

Get your mind off of YOU and onto someone who needs you.

Hopey - the thread you replied to was quite old, so I've started a new one to welcome you. I'm 27 and had CRPS for 13 years. Five years ago it started spreading and it's now well and truly full body...GI involvement, dysautonomia, generalised dystonia.

I'm glad that diet helps you. I made various diet changes over the years and it's never made a difference - but then I always had a very healthy, wholesome diet anyway. For me, it's non-negotiable these days anyway as my paralysed stomach means I can tolerate very little - no fruit, limited veggies. Hooshmand... personally I think he's a bit of a crank. Granted there is some useful material on his site , but there is also information that is well and truly outdated, some is incorrect - and he's not a resource that I'd ever recommend to somebody new to CRPS. Caffeine - I am a coffee drinker - both because I enjoy it and on the advice of my cardiologist. I have seriously low BP and orthostatic hypotension besides - to the point that I need medication to stop me getting dizzy or even fainting when I get up. I got seriously annoyed at one time with people on Facebook who kept quoting Hooshmand's "caffeine is bad" at me, and went searching for some serious sources. Obviously it's an individual thing - some people DO find they feel better without it - but there is no conclusive evidence to suggest that it influences CRPS pain.

Distraction is critical for me too. Movement is an issue for me - I also have osteoporosis, probably secondary to my nutritional issues, and broke my back in eight places last year. Between that, the dystonia and other health issues, I do 'bed exercises' when I'm on my own - just gentle movements and stretches with the bits that do work. I make teddy bears when my hands allow it and draw - and generally put myself out as an 'ear' for other people. I also use mindfulness meditation, which helps me gain a little control. Unfortunately I have to use opioid meds. My pain is just too severe now to do otherwise. Even with them on board, I still occasionally 10/10 pain that causes me to black out. It's great that you can function just on the gabapentin.

Moderator - Chronic Pain Forum

Full body CRPS with spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bursitis, CTS, osteoporosis, multiple compression fx, disc bulges.

Oxycodone ER/IR, Topamax, Mobic, Somac, Cipramil, Midodrine, Vit D & C, SCS, baclofen/bupivacaine pump

Elite Member

Date Joined Oct 2008
Total Posts : 25355
   Posted 6/28/2012 10:01 PM (GMT -6)   
hopey, welcome aboard. Read your story, and really hope for the best for you.

david in sc
Age: 59, 56 dx, PSA: 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, original catheters 63 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/10 .04, 8/10 .06, 2/11 1.24, 4/11 3.81, 6/11 5.8, 12/11 14.0, 4/12 37.0
Other: Spent total of 1 ½ years on 21 catheters, had Ileal Conduit Surgery 9/10
Member of Prostate Cancer & Chronic Pain HW Communities

Veteran Member

Date Joined Aug 2006
Total Posts : 9661
   Posted 6/29/2012 9:10 AM (GMT -6)   
Welcome hopey...
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, March 18, 2018 9:25 PM (GMT -6)
There are a total of 2,941,202 posts in 322,728 threads.
View Active Threads

Who's Online
This forum has 161134 registered members. Please welcome our newest member, John256713.
333 Guest(s), 11 Registered Member(s) are currently online.  Details
mattamx, NorCal, cyclinglady, Gear, ArtAngel, C_G_K, The Dude Abides, BBN!!, Darie, njs, John256713