Looking For Someone WIth RSD To Chat About This Hell
Hello
I am 26 years old, and have been a suffer of RSD for the past 12 years.
I am from Townsville, Australia, and currently know of no one with RSD.
I am looking for someone who would like to chat sometime.
Currently going through hell, and looking for someone who understands what i am going through, and someone who can help cheer me up.
Thanks
Jo
Re: Looking For Someone WIth RSD To Chat About This Hell
Hello Jo, and welcome,
You will find lots of people that suffer from rsd on this site. I have only had this monster for about a year and am learning some great stuff from others here. Not many know or understand what we are going thru. The awful burning and pain. Mine is in my foot so there are days I can't wear socks or shoes. I live in Minnesota which is very cold in the winter which makes it tough to run around barefoot. Feel free to ask anything you want. Someone will always try to help you. Here is where you can vent, where you can laugh, and where you will know fellow sufferer's care. Ask away!!!!!!!!!
Re: Looking For Someone WIth RSD To Chat About This Hell
hey i know how u feel seems like no one understands that you just cant be touched and the doctors well some anyway are a******s would love to chat with any one and mabe we could share info good knows we have done plenty research and iv had many procedures an lots of therapy physical and waiting for mental lol lol. I use to be a nurse and I rodeoed and trained horses now all I can do is sit and watch that is if I can go out side. well that's enough bout me if someone wants to chat give me a holler
Re: Looking For Someone WIth RSD To Chat About This Hell
dear jo1983au my heart goes out to you guys with this crps/rsds. i watch 24-7 my daughter suffers from this diease. i've found out that some familys don't understand. and its very hard on the patint . my dauther an i are very close. we live in two different towns. my husband and i and my other daughter take turns staying with her and her children. the nerve spasms are horrible tha the shaking begans.. we had to take her to the daughter which is in another town. the next day was horrible . she didn't get out of bed the next day was better. she can't stand to be touch the burning sweating and all the other syptims i'm sure you know about and are going through. .would like to share with you . you must be a very loving special person.
Re: Looking For Someone WIth RSD To Chat About This Hell
Jo,
My heart goes out to you.This disease is hard enough,but to have no one to help you,and doctors looking at you like you're crazy.It's very frustrating.I too have rsd/crps. I haven't had it nearly as long as you have but I do know and understand what you are going through.I'm 23 and feel so much older.It's sad when someone in their 80's gets around better than you do.I live in the northwest in the united states.Luckily the state I live in isn't as bad as other places when it comes to getting help and relief from this horrible disease.
I do know the hell you are going through.It's the simple things that you can't do anymore that makes you feel like a failure.What I'd give to be able to clean my own home without any ones help,and without it taking days to do so.Keep you spirits up.You're not alone.We are all suffering,but we can do it together. I'm so sorry that you have this disease too. I wouldn't wish this on my worst enemy.It's horrible in so many aspects other than just pain.My thoughts are with you.
Stay warm,
Deanne
Re: Looking For Someone WIth RSD To Chat About This Hell
Hey Jo,
My son developed RSD (originally named RND - reflex neurovascular dystrophy by his doctors) when he was 14. He's now 19. How did your RSD start? What have you done to this point to try to combat the pain? Sometimes, in telling your story, you may be able to get additional tips from those who suffer with the same symptoms.
Don't give up, even thought it's been a lifetime of a haul already! They've learned much more about the disease since you first contracted it and knowledge is growing at an exponential rate these days. At the very least, you should be able to find a doctor who knows you're not crazy or imagining the pain and is willing to explore many different avenues to help you. Unfortunately, despite all your suffering, it's going to be up to you to keep researching possible treatments and new information. Is there anyone in your family who could take on the task of filtering the information out there? (My son does some research but I'm the one who basically stays updated on all the medical jargon, advancements, developments, etc.) I'm counting on the hope of a new discovery to help my son and all of you who are suffering 24/7 with this horror. Put yourself on a google alert for RSD and CRPS so you can be updated on any recent developments that are out on the web. You'll also get links to places like this that offer support. Don't know if you need a gmail account for google alerts....let me know and I'll send you an invitation.
No medication has ever worked at all for my son; physical therapy (2 1/2 hours day) for the last 3 years helps him maintain function but kills him; recently, 3 additional hours daily of hooking up to a type of TENS unit has helped him fall asleep more easily and eased some of his daily nausea, but nothing on the pain which is with him all the time at a level of 7/8 on a scale of 1-10.
You're a strong person, proven by the fact that you've made it this far and this long with a horrendous condition. Keep moving forward even if the steps are incremental
Re: Looking For Someone WIth RSD To Chat About This Hell
I originally had an injury to my right thumb and the pain started spreading and it has been misdiagnosed now for over a year and now I have 4 experts who say its RSD and it's spreading to other areas of my body. The pain is unreal the worse is the burning followed by the nerve stabbings. No medication kills the pain I just lost my boy friend because of it and my other friends and family members think I'm making it up.
Re: Looking For Someone WIth RSD To Chat About This Hell
hi jo
it is frustrating I also have RSD I am a 45 female in Chicago, Illinois in the USA I have had RSD a year and I have been misdiagnose for over a year I also can use some friends right now. I also am going through hell I thought my boy friend was behind me and supported me until we broke up today.
Re: Looking For Someone WIth RSD To Chat About This Hell
US Melissa
I know exactly what its like for people to think you are faking it... I had to suffer with that for 7 years before a specialist sent me to have a bone scan and see the large amount of activity in my wrist joint.. then they started believe me...
I was misdiagnosed for over 10 years...
I have been through that many different pain killers... so far this last one that i have is working a bit... I hate this pain as well.. i dont wise it on anyone...
Re: Looking For Someone WIth RSD To Chat About This Hell
Deanne
Yeah, thankfully i have met people like you that are welling to provide support.
It is sad but great to find someone near my age that is suffering through what i have to... I hate my friends going out and having fun, and not being able to go out with them... I too have the legs of an 80+ year old..
I only have a pain managment clinic where they dont really know what RSD and it sucks...
I hate it, i still live at home, and i cant clean my room as much as i would like, and my family always has a go at how slack i am, but that dont understand that i just CANT do it as much as them... to be rude it pisses me off..
I am sorry that you have this disease as well... I am trying to stuggle through studying at university and this year is being harder on me..
People think that the worst thing about RSD is the pain, and its not, its every aspect that makes it like living through hell
Hope you are having a better day then me.
Thanks for your support
Jo
Re: Looking For Someone WIth RSD To Chat About This Hell
US Melissa
I am so sorry about your boyfriend... but i have to say what an *******..
I know what it is like for someone to brake up with you because of the hell we live with.. But always remember there IS someone out there who is waiting for you.
Jo
Re: Looking For Someone WIth RSD To Chat About This Hell
momofrsdkid
I was wondering where do i find the google alert area... i have a gmail account...
I am so sorry to hear about your son... Thankfully at this point in time the painkillers are keeping some of the pain at bay... I have a physio that is going out of her way to try and help me with working out why it is happening..
my story of how it started is a long story, and i will tell you all, but at this point in time i am in to sore, and down in the dumps...
Thanks
Jo
Re: Looking For Someone WIth RSD To Chat About This Hell
Quote:
Originally Posted by jo1983au
US Melissa
I am so sorry about your boyfriend... but i have to say what an *******..
I know what it is like for someone to brake up with you because of the hell we live with.. But always remember there IS someone out there who is waiting for you.
Jo
Well I'm not going to look anymore and just concentrate on me. If a guy happens to come along in the mean time well so be. I'm just going to be more concerned with getting better
Re: Looking For Someone WIth RSD To Chat About This Hell
momofrsdkid
It all started when i was 14 and squoted down to see a friends baby, heared a loud crack, and pain ripped through my knee, i was unable to get up.. After that i went to the doctors two days later (and i was unable to walk at all)... The doctor ordered an xray which showed up nothing of course... so it was left.. then within two months i had done the same thing again (playing netball) and the doctor finally sent me to a specialist, he didnt believe anything was wrong... so within 1 year i had dislocated the knee cap numerous times, so the doctor sent me for two MRI's (in the end), which showed nothing... then 6 months later and numerous dislocations, he sent me for a CT scan which finally showed that i dont have enough groves in the knee joint to keep the knee cap from popping out... But he still didnt believe me, so he sat there and dislocated my knee 5 times in a row, he only stopped because my mum show i was about to punch him.
So that resulted in 4 operations in 3 years, and my knee still dislocates... as a result of the 3rd operation (they had to move a piece of harm string to try and stop my knee from slipping out), i developed RSD in the leg, and i deveoped both Type 1 and Type 2. I still do not have feeling in my leg just below the knee...
Then 3 years after the last operation it spread to my right wrist... it gets to the point where i cant stand to move it at all, or even hold a piece of paper in it... They had no idea what was wrong and again the same specialist didnt believe me, so he sent me for another MRI, which showed nothing, then a bone scan which showed a large amount of activity in my wrist joint... But he said he didnt know what was wrong or what to do... I was sent to artherites specialist and they had no idea what was wrong... so they left it alone... it stayed that way for a year, it eventually settled down...
Then 2 years later it spread to my right ankle... same again no one believed me, and i was sent for an MRI, which showed nothing... it got to the stage where it was spasming most of the time, so i was given a boot that keeps the joint still... again nothing was done...
Then last year i was sent to a physio for my right knee as it had started to dislocate as well. In December of last year, during a flare up of my hand, he had a look at it and bearly had hold of it and when he released it he noticed that he had left a mark of his thumb on my wrist.. (no one believed that it was full of fluid because it had shrunk down smaller then my good wrist).. so he sent me to see a fluid specialist physio... She has been great, she has organised for me to see an Occupational Therapist which organised a pressure garment for my wrist (it has been great with swelling and pain, i have noticed that the pressure helps with the pain), yes it bloody hurts to put on, but so far its worked... And now we are looking at getting one for my ankle... She is also looking into way i am getting my sores after flare ups..
All in all i have been marked as disabled (finally by social security), and finally got someone that is willing to try and help me... I see the pain management clinic here (but they just deal with the pain medication)... but i dont have a pain psycholigist, and up till now no one to talk about my hell with... And i am looking to talk to anyone that is under 30 (as well as everyone else) that understands what it is like to not be able to have a life.
Jo
Re: Looking For Someone WIth RSD To Chat About This Hell
help me wit rsd
I am trying to stay sane... I know what it is like to have a family that doesnt really understand what i am going through... as well as staying in bed and not wanting to get out... I am very close to my mother as well, and reily on her for nearly everything, she has now become my full time carer...
I would love to share with both you and your daughter... and tell her from me "if you dont laugh about this hell you are only going to cry". I try to stand by this as much as possible because i am so sick of crying... i try to make jokes about my condition... for example as i am the baby of 6 kids i tease my mum about getting all the reject parts.. lucky she has been through everything with me and knows its only a joke and my way of coping with this hell.
Hope your daughter hasnt been in too much pain today.
Jo
Re: Looking For Someone WIth RSD To Chat About This Hell
walleye77
I know what having RSD in the foot is like... lucky thou i can wear socks as long as they are not tight. but it does get to the stage where i cant stand any touch on the outside of the ankle... I dont know if you can get them over there, but here in australia there is a company that makes woolen based socks, they are very soft and comfortable, plus they are not tight...
I dont know how you live with the cold, winter here is cold enough for my RSD, and i live in the tropics..
And thanks for your warm welcome...
Jo
re: Looking For Someone WIth RSD To Chat About This Hell
Dear Jo,
he fact that you actually get some relief from meds and that it is RSD from a specific injury might work in your favor with regard to those two treatments. My son's pain has been refractory to absolutely all treatments tried so far. Finally, you might consider a nerve conduction test (NOT an EMG which is invasive) to try to attempt to see if there is actual nerve damage or if the pain is just sympathetically maintained. Also, I just came across Graduated Motor Imagery (GMI) as a newer technique used to help patients diminish their chronic pain. Everything above is non-invasive and has no side effects - all key when you're trying to evaluate and treat a condition that may react negatively to anything invasive. Have you seen a neurologist or contacted the Mayo clinic in Minnesota for information?
...I saw that you just posted your story. I'll read that first before bombarding you with questions
Hang in there! -Mom of RSD Kid
Last edited by moderator2; 03-18-2009 at 07:19 AM.
Reason: posted disallowed website(s)
Re: Looking For Someone WIth RSD To Chat About This Hell
Besides the MRIs, what tests have they run? Not that the medical community really knows what to do with either CRPS I or II, it's important to determine if your pain originates from nerve damage or is simply a central nervous system issue that has no apparent physiological routes. If it's nerve damage, a block might bring you some relief; if not, a block might make things worse because of the injection or your body's reaction to the chemicals in the block. If you haven't already done this, get organized. List the doctors, therapists, specialists you've visited. Keep a chronological record of all the tests you've run. Keep a chart that notes flare-ups, sleep patterns, pain levels, etc. over the course of a week or month or days, depending on your patterns. It's a lot of work but it sounds like you've got a great support person in your Mom, so I'm guessing she'll help you. My son does NOT do this. It's enough for him to have to deal with the pain, do his physical therapy daily to maintain function, and keep from getting suicidally depressed. I don't have his information as organized as I'd like, but it really helps get us some attention or cut to the chase with a new doctor if I can enter the office with a list of everything that's been tried so far and the fact that we've seen 27 medical people already over the last 4 years. They know that you're informed, seriously proactive, and that the problem needs to be taken seriously. Sometimes I use my information to weed out doctors so we don't waste a visit to them since my son loses heart if we see someone who really can't offer us anything.
Look on the internet for the book "Pain Banishment, not pain management" written by a patient of Dr. Rhodes. From all my current research, some sort of electrical stimulation of the nervous system that helps it rebalance the body's chemical seems to be one of the better non-invasive options out there. His technique is different than the older TENS treatment. Maybe there's someone in Australia who practices it or something similar. Worth a try. The key is to keep trying. Circulation is important and your edema (swelling) indicates poor circulation. As painful as it is, move your swollen painful joints as much as you can. You're not doing damage; the pain and swelling is just a severely abnormal reaction your body is having - your body's trying to protect itself from something that's not a threat and you have to override it daily or it will only succumb more to it. (By movement, I don't mean lifting weights or anything ridiculously strenuous. Just do simple things like rotating a wrist or waving your arm or picking up a book with a bad hand/arm or walking normally, etc.) I swear that the only reason my son isn't far worse is because he forces circulation to his knees by soldiering through the pain. It's so much easier said than done, but rely on your Mom to get you through the tears and venting and anguish while you push through. That's what we Moms are here for
-Momofrsdkid
Last edited by moderator2; 03-18-2009 at 07:20 AM.
Reason: posted disallowed website(s)
Re: Looking For Someone WIth RSD To Chat About This Hell
Jo,
I am sorry to hear of your frustrations. This is an extremely frustrating disease. I am 27 if you want to message me. I have it mostly controlled, but I keep managing to flare up my knee and don't know how to avoid that right now! I think I damaged it and it will take awhile to settle it down again. Such is our illness.
Re: Looking For Someone WIth RSD To Chat About This Hell 
