Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 02-12-2014, 08:02 PM #21
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I actually love when people vent on here because it helps me feel better cuz I know I am not alone! Lately my pain has been increasing and my symptoms have been getting worse. The burning is horrible. Plus my life is a mess right now! I could vent forever I think..lol I am trying to move out of the place that I am in because I don't think it is a safe environment for my daughter anymore in regards to her emotional and mental safety. I also have a hard time sometimes changing my mood. It is hard to always stay positive when you are going through hard times and are always in pain. The thing you have to remember is that you are strong! You have to believe in yourself! I would just keep focusing on the positive, remembering good times, look for the silver lining, write down all the blessings in your life and reread them, and remind yourself that this moment will soon be a memory. Those are some of the things that have helped me get through the hard times. I hope they help you. I also wish that you are doing well now.

Quote:
Originally Posted by HeidiB View Post
Hi my fellow RSDers, I hope you all are having a good night.
I myself am having a really hard time & have been for awhile just some days worse than others such as the past week so instead of continuing to hold it in I thought I'd vent on here cuz I'm @ my wits end My doc changed my pain meds to 2mg dilaudid trying to help with my pain but it's not worked Ive been on it since the 21st of last month & I was really praying that the change would help but it really hasn't done much more than the perk's I was on & Im to the point beyond tears I just don't know what to do I'm not sure how much more I can take of this it feels like my entire body is on fire in a vice grip & being ripped off all at the same time is the only way I can think to describe it. Im not sleeping sometimes for a couple days at a time because of the pain & I'm starting to feel like I'm gonna just lose my mind, & getting more depressed. I just don't know anymore. thank you all for being here to listen & vent to I'd feel even more alone than I already do w/out all of you & of course my mom & gma.. I hope you all are having better time than me til next time take care
ps on a side note has anyone else had problems changing their mood cuz I haven't been able to change mine for a little while
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Old 02-12-2014, 10:00 PM #22
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Crazy update

Cant get online with my laptop so I hav to use my phone which a pain in the butt! So gonna make a short post went to doc today thankfully they fit me in but he thinks I may hav an infection in my spine so now gonna hav to get a double shaded mri which of course dont hav money for or insurance my poor mom is tryin to get $ together dont know what Id do without her..so may end up in hospital for few days time will tell. Hope u all are well & thanks for all ur posts means the world
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~HEIDI~
GENERALIZED RSD/CRPS stage II/III (entire body
.
) since 2004
HIP DYSPLASIA(right side), hip turned & tilted into back & aprox 2in higher than left side; <wear a shoe lift>
ARTHRITIS in both hips & Pelvis; Both Ball Joints are Deteriorating; SIATICA (both sides now) & EPILEPSY
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Old 02-12-2014, 10:26 PM #23
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Hi Heidi,

You have a lot to deal with, so hope you give yourself credit for what you are doing! Exhausting! I hope your doc tries a new regimen of medication and is more understanding too. I developed sensitivities to many narcotics and other meds and had/have to change every so often... it is a process of trial and error for sure until you really find relief..

Praying for you!!
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Old 02-13-2014, 01:16 AM #24
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Quote:
Originally Posted by HeidiB View Post
Cant get online with my laptop so I hav to use my phone which a pain in the butt! So gonna make a short post went to doc today thankfully they fit me in but he thinks I may hav an infection in my spine so now gonna hav to get a double shaded mri which of course dont hav money for or insurance my poor mom is tryin to get $ together dont know what Id do without her..so may end up in hospital for few days time will tell. Hope u all are well & thanks for all ur posts means the world
Hey Heidi
You really are going through so much and dealing with constant pain is wearying, it's little wonder you are feeling so sad. You have people from around the world in this site who all totally understand how you feel and like me will all wishing you find some relief soon.

If money is an issue, can you ask the doctor if he can test your bloods first to rule out infection? I'm asking because I had a round of scans in 2010 when they thought I had osteomyelitis and the scans then cost in excess of $1000. I was working then and not so concerned about the money, and, I didn't have osteomyelitis. Fast forward to 2014 and this week my PM is wondering if I have an infection in my back and has ordered blood tests which I had yesterday. The blood tests were bulk billed so cost me nothing, which is a relief now I can no longer work and money is extraordinarily tight.

I take an anti depressant, it's called Pristiq. I've tried others over the years and this one has been the best for me, no nausea and no weight gain. I've been on up to 200mg and now back down to 50mg, I credit it with saving my sanity.

Be kind to yourself, find what you can to relax you and indulge yourself in it. Hoping you get your results quickly so they can take steps to provide you with much needed pain coverage.
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Old 02-13-2014, 09:57 PM #25
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Hi Heidi! thinking of you, hoping you are better very soon. I pray you do not have an infection, that sounds scary. Wishing you wellness ~Lottie
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1999 Chronic spine pain related to Degenerative Disc
Disease,
Sept 2001. C6 / C7 discectomy & fusion.
Jan. 2005 L5/S1 discectomy and Artificial Disc Replacement.
July 2011 removal of broken
.
Artificial Disc Replacement.
Woke up in recovery room with RSD Monster.:
.

Aug 2011 Stabilization of spine at L3/L4/L5.
October 2014 Rheumatoid Arthritis.
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Old 02-14-2014, 04:01 PM #26
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Quote:
Originally Posted by HeidiB View Post
Cant get online with my laptop so I hav to use my phone which a pain in the butt! So gonna make a short post went to doc today thankfully they fit me in but he thinks I may hav an infection in my spine so now gonna hav to get a double shaded mri which of course dont hav money for or insurance my poor mom is tryin to get $ together dont know what Id do without her..so may end up in hospital for few days time will tell. Hope u all are well & thanks for all ur posts means the world
can you get medicade?or disability? I work still and have insurance,but it will not cover meds.I need...so LOL
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