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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)

Full body rsd ,what symtoms do u have compare to mine.

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Unread 08-22-2013, 10:23 PM   #1
89danboy
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Default Full body rsd ,what symtoms do u have compare to mine.

I got rsd from fallen 2 story's breaking my back,shattered my heel & fractured dislocated & broken wrist. I wake up in extreme pain and can't get off the couch or bed until I have a high amount of opiates in my body. Without my pain medicine I would not be over to get out of bed at all. I have bad stomach issues from all the information in my body that cause me to feel sick nauseous.i lost 12 teeth in the last 2 years,all back thank god.had gull bladder &gull stones removed,had a seizure.had a full body rash that looked like big pimples.i get bad cold sweats and skin tempature changes.sometimes I stay in bed for weeks at a time in pain and feeling sick.my body has no testosterone in it,no vitamin d,I feel nauseous after every meal.ingrown nails that are brutal.high blood pressure and heart rate .legs and ankles swell up.lost all my muscle.cant wear cotton shirts ,must be real soft .noise bothers. Me,almost hurts me.i always feel sick and extremely fatigued.all I can do is lay down and try to make my self feel relaxed.but usally I'm just in agony.i just started nasal ketamine .had to beg my dr for 5 months to get it.im on a low dose 40 mgs 2 times a day,I should be on atleast 300 mgs aday.but what are u gonna do.ive had infusions befor ,they did help.so I'm hoping I get relief once I'm on the rite dose.i also take methodone 120 mgs aday & oxycodone 30 mgs x4 . I would like to here the symtoms all ofyou go thru on a daily basis.thank you all & soft huggs
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Unread 08-23-2013, 12:46 PM   #2
Brambledog
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I am not full body, although mine did spread to my left side. What you are enduring sounds horrendous, and I can only say how much I admire your fight against this cruel disease that causes so much pain and disability.

I hope you manage some slightly better days, and have some things to keep your mind occupied during the times where you can concentrate. I know distraction helps me so much when things are bad, but of course when the pain is very deep I find it difficult to think of anything else.

All we can do is to keep trying, and it sounds like you are doing that every minute. Keep going

Bram.
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CRPS started in left knee after op in Aug. 2011
Spread to entire left leg and foot, left arm, right foot.

Coeliac since 2007.
Patella femoral arthritis both knees.

Keep smiling!
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Unread 08-23-2013, 01:36 PM   #3
tkayewade
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Unfortunately, I have full body and some of your symptoms sound familiar. I have bladder problems. (interstitial cystitis), digestive problems (loss of appetite, heartburn, reflex, burning belly pain, etc), I haven't lost teeth, but I have extremely sensitive teeth and they are weakening quickly.i have had two seizure episodes, optic neuritis, and of course excruciating back burning pain. My scs does not cover. I have balance issues that make walking very difficult. I usually just use a wheelchair. Oh and noises really bother me.

My treatment hasn't changed much. I keep taking the same meds and hope for the best. I think I may have to up my topomax due to myoclonic seizures and constant burning pain. I use music for oping and read. Sometimes it helps; sometimes it doesn't!

Hang in there! Feel free to message me! It's very hard to be systemic.

TK
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Unread 09-07-2013, 07:41 PM   #4
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So Sorry For Your Struggle. Stay Strong and Never Lose HOPE!!.... It is ALL We Have In This Twisted Illness. Blessings!!!
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Unread 09-21-2013, 06:29 PM   #5
RSD ME
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I'm so sorry you have all these problems.

I too have had RSD for over two years after breaking my wrist after a fall.
I was diagnosed with RSD about 5 months after wrist was casted.
It was swollen, purple and hurt at the slightest touch.
After several courses of prednisone and 8 neverblocks and alot of pain and anxiety medication, it looks a little better and gave me some movement back, but not all.

And even though it looks better, it seems to hurt and burn and swell more and more over time and also is slowly spreading.

During that time I have had two surgeries for endometriosis and hysterectomy, which didn't help with the spread, and
lost one tooth due to an infection in my gums from a failed root canal. I also have stomach problems due to meds and gallstones (which will need to be removed soon), have bed sores and other sores in my ears and mouth and all over my body that don't seem to heal quickly if at all.
I also was recently diagnosed with fibromalagia and osteopenia (bone thinning) in my right hip. It is very painful.

My RSD has spread from my right hand and wrist up to my right shoulder. I cannot move my wrist and have limited movement in my fingers and shoulder.
Now after two years, my left hand is red and swollen and is stiffening up like the right one has. It has also spread down my right leg, knee and foot. They are all swollen and red.

I also get terrible cramps in my left calf, and numbness and tingling in my fingers and toes.

I have had pain in my gums and have had alot of dental work as well.

All I can is some days are better than others, and I try to enjoy the better days as much as I can. On the days that are worse, I usually just curl up in bed all day and watch tv.

Again, I'm sorry you have all these problems. I admire your strength in dealing with it everyday and being able to talk about it. It took me a long time to do that.
I went into deep depression for a while and didn't want to face the world.

Just try to do the best you can each day and pamper yourself. Do something nice for yourself everyday. Whether it be a cup of your favorite tea or snack or maybe a little gift from tv shopping! Funny sitcoms help me too.

The thing that seems to be helping me the most right now is talking to people like you who are going through what I am going through.

I hope maybe I can give back for all the kindness I'm getting from all of you
by helping give advice that has gotten me through RSD and Fibromalygia.

I hope you have as pain free as possible a night too, and I'm always here is you need to talk.

Hope I helped.

Also try to stay warm. The cold of winter is rough on rsd.

Take good care of yourself. You deserve it for all you've been through.

And remember that you're not alone.

Renee.

Quote:
Originally Posted by 89danboy View Post
I got rsd from fallen 2 story's breaking my back,shattered my heel & fractured dislocated & broken wrist. I wake up in extreme pain and can't get off the couch or bed until I have a high amount of opiates in my body. Without my pain medicine I would not be over to get out of bed at all. I have bad stomach issues from all the information in my body that cause me to feel sick nauseous.i lost 12 teeth in the last 2 years,all back thank god.had gull bladder &gull stones removed,had a seizure.had a full body rash that looked like big pimples.i get bad cold sweats and skin tempature changes.sometimes I stay in bed for weeks at a time in pain and feeling sick.my body has no testosterone in it,no vitamin d,I feel nauseous after every meal.ingrown nails that are brutal.high blood pressure and heart rate .legs and ankles swell up.lost all my muscle.cant wear cotton shirts ,must be real soft .noise bothers. Me,almost hurts me.i always feel sick and extremely fatigued.all I can do is lay down and try to make my self feel relaxed.but usally I'm just in agony.i just started nasal ketamine .had to beg my dr for 5 months to get it.im on a low dose 40 mgs 2 times a day,I should be on atleast 300 mgs aday.but what are u gonna do.ive had infusions befor ,they did help.so I'm hoping I get relief once I'm on the rite dose.i also take methodone 120 mgs aday & oxycodone 30 mgs x4 . I would like to here the symtoms all ofyou go thru on a daily basis.thank you all & soft huggs
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Unread 09-21-2013, 08:09 PM   #6
Allanira
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All of our symptoms very depending on the person. I have rsd in my knee and have had for 9yrs 10 months. Wow my 10 yr "anniversary" for it is coming up lol. I don't get the sensitivity part that much or the major color changes. I do have the swelling, intense burning pain thats like someone is using a blow torch from the inside out, and temp change. Also cold affects me where it doesn't a friend that has had knee surgery. He uses it with no problems. Me it makes my pain ratchet up higher than a chihuahua on crack lol. My husband and I are having a disagreement on what the thermostat should be set on right now lol. He gets hot and I am freezing and hurting. Eventually we will come to an agreement though lol. Even with a fan on full blast I get chilled if its pointed a tiny bit towards me. Showers hurt and my leg turns an angry red, ummm what else. Can't really think of more right this second but a warm bath with some epsom salt lol. Oh yeah if I'm stressed or tense it hurts even worse. I like to liken it to someone taking a big rig trailer and all turning it up on 1 corner of the bumper and placing it on my knee while using a blow torch on my knee and leg.
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Unread 09-22-2013, 04:43 PM   #7
Sylmeister
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Heart Dear DanBoy

What you are going through sounds way too familiar. Mine started with a fall, on a tiled basement floor at work., I can't imagine the trauma of a fall from stories high. Makes me shiver just to think about it. Your details describe me almost to a T, during the first several years. When a car next to us at a red light pulled up, blaring loud music, I would get nauseous and my pain would flare in just that short of a period of time. Air moving, would light a fire on me. I can tell you that I can offer suggestions as to why but I don't know for certain, but the intensity of my pain in general, is down. I still have it and have it every day. It affects my balance still. I have fallen 4 times in the last year, broken a rib and bruised myself very badly doing so. There is so much and so many ways that this disease affects you. It's not just about the pain.

As far as advice, I have never spent the day in bed. More days than not I haven't done much besides get up and go tot he restroom and sit in from of the Tv with my legs elevated to lessen the constricted pain and swelling. But when I was able to manage, even though I seriously did NOT want to, I made myself do stuff around the house. If that meant a load of clothes in the wash and nothing else, so be it. put a few things int he dishwasher, do it. Walk up and down the driveway, do it.

After my first PT appointment I could not move my arm and I had barely a speck of movement in my fingers. My PT told me to go home and peel potatoes. I could barely hold the potato, much less the knife, but I stood in the kitchen with my husband and I peeled two of them. Most of the potato going down the drain with the peel. I was really proud of myself. The next day I told my therapist, rather boldly that I had peeled not just one but two potatoes. She replied very sternly to me, good now you go home today and you peel two hundred. She was exaggerating of course but she was serious about the use of my arm and hand. She had already told me what a battle it was going to be for me to balance use with too much use. I trusted this woman because she had been my PT after a knee surgery just 6 months prior and lucky for me, she already knew me, who I was how much I worked, etc. She is actually the one who saw the RSD the second I walked in the door, when my Orthopedist had missed it two weeks earlier. It wasn't until two years later, when I attended a pain symposium that I met a woman easily ten years my junior, who came up to talk to me. Her dominant hand and arm were curled up in front of her chest, like a little bird with it's wing tucked to it;s breast. it was atrophied and I actually thought at first that she had had polio. She had gone nearly 4 years improperly diagnosed and had not used her limb because of the pain. She had not had a tall blond Dutch woman to read her the riot act about how intensely important movement was. No one had told her she had to work through the pain if she wanted to maintain her mobility. It broke my heart and it ticked me off. I had been encouraged to replace the pottery throwing and stained glass I used to be able to do, with anything else that could inspire and distract me. I took a tiling class, I learned how to bead, both had me using fine motor skills picking up and manipulating tiny things I could barely pick up to begin with. Adding that to the therapy exercises I had 6 times a week for over a year is why I firmly believe I was standing there next to this young woman, with a useful arm, while she hadn't had for years and never would again have use of hers.

As my RSD spread to the other side and then to my feet and legs and so forth, I have have moved several times, but Ike has come with me and I done anything I could think of, stopping of course or trying to when I knew I had done enough, enough for right now or enough for the day. It's a constant fight, negotiating activity and pain, but please do what you can to not just lay down in pain. The ore active you become, I believe the more you are able to wrestle with the pain you feel physically in your mind, and find a place to put that pain, knowing that gentle movement is not harming you. I know it feels like you are but gentle movement with consistency is healing and will with time put you in a place where you have more control and can beat the sensitivity to some extent. When this first started for me, I would literally crumble when anyone even stood near me in public, the fear that someone would graze me was more than I could manage. I couldn't stand to touch my husband's arm or hand. The hair on his hand was so offensive to me It made me sick to my stomach. I was determined to not allow RSD to cause me to continue to be sickened by the presence of people and especially to not sicken me against contact with my husband. It is certainly not easy, a mind over matter problem, but it is possible with determination and keeping at it. Some things are harder, some or easier and some are more important. Figure out what is most important to you, that you do not allow RSD to take away or for you to lose and work toward that goal. If it's your relationship with someone, if it is a task, a hobby and work towards it. I know it's hard, I can attest to that. It took me, with my injury and the level my RSD was at, 6 months to hold and raise lip balm to my face to put it on. I still couldn't open the little tube but I could put it on myself. I could brush my teeth myself. I could finally pet my soft and sweet dog. 6 months I couldn't stand to have her sit by my side or even with her right next to me, I couldn't stand to move to barely pet her. It was repulsive and painful to touch the things I loved. I have never gotten a full range of motion back and I am still limited in what I can lift, push or pull, but I can do a lot more than I ever thought I was ever going to be able to.

I know it's hard, but trust me, it gets better. I have read a lot of peoples posts in forums that their pain changed too, so I have to believe that if you don't let RSD take or keep everything, you will be able to get past some of that pain and get some of your life back. Even two years ago, I would not have been able to type all of this or had the energy to share with others in this manner.

warm wishes and soft hugs, Sylvia
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Unread 09-22-2013, 06:45 PM   #8
Allanira
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Oh yeah on working the parts that have rsd as much as you can without going beyond the point of really hurting yourself. I fight myself at times to make me use my leg. I use my cane when I have to, otherwise it sits in the corner and my son takes off with it lol. Its a fight and it hurts but it does help some. Its the old cliche of use it or loose it. Its real for us. It means a lot for us also. I have lost a ton of my leg muscle becuase of not using my leg as much. I used to be able to lift over 400 lbs with my legs. Now I'm lucky if I can do 10 lbs. But I am coming to grip wkth it. I had beautiful legs. I had people asking me if I had calf implants done. Nope it was all hard work. I used to go mountain biking too. I loved my legs. Now they look nasty, shiny dry cracked skin and no muscle tone. But I keep fighting so that I don't loose all mobility of that leg. I have balance issues too. I slip and fall, and blame it on the dog lol. I also stumble and bang my knees or toes. I still try and blame my goofy dog lol. She doesn't understand and I dont beat her she thinks I'm saying sweet nothings to her. she still loves me which is good.
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