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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 07-01-2012, 11:12 PM   #1
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Not In Control

I have had CRPS since the middle of my 7th grade year and now I will soon be a sophmore in high school. It has turned my life upside down, right now I have no clue what's going on. I hurt all the time everywhere, its not as bad as my first "flair" but still. I am starting to lose feeling in my feet, and well its scary. I feel all alone because my mom yells at me daily since all I want to do is nothing. I have lost all my friends but one even though we only talk every once in a while. I don't know what to do or who to talk to when I speak to my family they act like they have been in my shoes which they haven't and when I try ( or tried) to talk to my friends they don't listen. Do you have any suggestions? Ways you deal with it?

 
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Old 07-02-2012, 11:28 AM   #2
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Re: Not In Control

I can't imagine being so young and dealing with this. I am very sorry for your situation.

Like you I am feeling alone and like no one around me can understand what is going on with me. I haven't been officially diagnosed yet. Worker's comp is to thank for that, but my OS and PT's think that I have RSD. I am 46, single, have a 19 year old at home who is working, thank God and can help out some, especially since WC is not paying me right now. My sister is in serious condition in a hospital 80 miles away (she lives in the same town I do), so my family's concern is (rightly) on her.

At the same time, I am dealing with this pain and possible diagnosis, and worker's comp heading me off at every pass. Everyone just asks what the MRI of my knee showed and what damage did I do and what's wrong with it? I can't explain it to them.

I'm not having a pity party here. I just want to show you that we are all in the same kind of situation with this. I know some of us have great support systems and I am so thankful that they do. I know there will be people there for me, and I am sure there are people who are there for you. I had really let myself get bogged down with everything from household chores to, well, you name it and I am trying to take control of it all now. It feels so much better. If you can just take control of something, I think it would make you feel better. I am so glad for these boards and for the people that give advice and just help us through the day. I am new on here, but reading all the posts helps so much.

 
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Old 07-20-2012, 03:47 PM   #3
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Re: Not In Control

Hello Stronger,

The first thing I would like to say is that RSD is NOT stronger than you, YOU are stronger than IT!

No one can possibly understand what you are going through right now except someone who has been in your shoes. This is the best place for you to find those people. I had a hard time dealing with life myself, and I know that it is impossible to explain the pain to others. I have had people tell me its all in my head, your faking, etc. etc.

Come here often, talk to people who know. Maybe it would help if you showed your parents this board and then they may get a better realization of what it is you suffer from. It is not a fantasy, it is as real as it can get. Before being diagnosed, I had never heard of RSD before in my life, as most of the world has not. Educating them will be your only way to get them to your side, where they should be already, as caring parents.

I have sent many non-believers to this board to get educated. Most of them were flabbergasted after reading some of the stories here, as I was when I first came.

I wish I could sit down with your parents and tell them exactly the Hell you are living, but I cannot. Let them read these posts - maybe it will open their eyes a bit. As for your friends, a true friend would listen with open ears and an open heart. They may not ever really be able to understand your pain, but they can at least acknowledge the fact that it exists and there's nothing that will change that.

Have you been to a Doctor to get help with Diagnosis and treatment? If not, you had better do that fast. Left unchecked, RSD will become harder and harder to treat effectively.

Stay Positive, educate yourself, and try as hard as you can to educate your parents. I wish you all the best. Come here often for the much needed support that you are not getting at home.

 
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Old 08-27-2012, 09:47 AM   #4
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Smile Re: Not In Control

My daughter was diagnosed with CRPS in both feet earlier this year.

She is on a variety of pain pain relief.

So far the main thing that has shown her smoe level of improvement is getting her to get her head around desensitisation. Introducing different contact sensations to the affected area to allow the brain to reconnect the messages from the nerve ending that the contact is not a danger signal.

Remember pain is not a physical item it is a message from the nerves to the brain that an area of the body is in danger of damage.

The other treatment that has shown great improvements for her was soaking the affected limbs in a mix of of Magnesiuam Sulphate (Epsom Salts) and warm water. Approx 100 - 200 g of Epsom Salts to 10 liters of water @ approx. 39°C.

The theory is that the Magnesium converts into a calcium blocker and affects the capillaries in the affected area and therefore the blood flow and the Sulphate works to disperse any toxins that have built up in the affected area.

We have been doing the desensitisation and soaking of my daughters feet each night for approx. 4 -5 weeks now and she has now gone from not being able to walk and a pain level of 7 -8 out of 10 in a non contact state to 6 -7 out of 10 and she has in the last 2 weeks been able to wear socks that don't have any seams in them.

It would appear that with CRPS once you ahve managed to gain some movement so long as you push through the pain and continue then progression can be maintained. The problem alot of suffers experience is that if they don't start treatment early enough then the pain is too great to be able to work through. Then starts the viscious circle of fear induced pain.

< edited >

I hope the our learning will be useful to others experiencing the same issues.

Last edited by hb-mod; 08-27-2012 at 01:10 PM. Reason: Please don't post unapproved website links, or recommend Internet searches, per Posting Policy. Thanks.

 
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Old 08-27-2012, 02:55 PM   #5
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Re: Not In Control

skeay2302.
Sorry but pushing through the pain is not something you should be doing, Even the American Journal of Medicene says that aggressive physiotherapy must not be used.
Exercise should be gentle but frequent, once the pain starts to rise stop rest and wait for the pain to go down.
When I finally got to see a specialist 1 year 11 days after the RSD started he said that because of the aggressive therapy and hot nad cold water contrast therapy I had no chance of ever getting remssion.

 
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Old 08-28-2012, 10:14 AM   #6
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Re: Not In Control

Maybe my wording of push through the pain could have been better defined.

What I meant was that once some level of mobility is achieved then it should be maintained as much as possible and to try and avoid getting into the situation where mobility is prevented due to the fear that the pain will rise. As this will create a viscious circle.

One of the summary agreements that all participants in the CRPS conference in Holland last May made was that maintaining mobility from an early stage was key to maintaing some level of control. Once lack of mobility has been allowed to set in then reestablishing mobility is more difficult to achieve.

I totally agree that you should never push yourself to the point where you are in severe pain and that the exercise should be light and repeated frequently.

 
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Old 08-28-2012, 08:33 PM   #7
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Re: Not In Control

Don't expect UK doctors to know or care about what went on in Holland, even the ones that attanded. I have been treated by or spoken to 7 specialists including a Professor and not one of them had even heard of let alone read American or Dutch papers that I told them about some 10 or more years old , Last one was 13th this month he said I only care about what happens in the UK.
The Proffessor spoke at a conference in New Mexico last Oct where it was proposed that Activated Glial were the key to this, when I met here in May I said I had no idea what they were and sshe replied neither have I They want the rest of the World to listen and accept what they say but are not prepared to be open minded themselves.

 
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Old 08-31-2012, 10:09 AM   #8
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Re: Not In Control

I am so sorry to hear about this from someone so young who has a whole life ahead of you What is being done for you as far as PT or Meds? As hard as it may be...You have to make yourself do things...You need to be in control...It is hard...I have dealt with this disease for 18 years and I am IN CONTROL...not it.

 
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Old 08-31-2012, 11:11 PM   #9
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Re: Not In Control

Quote:
Originally Posted by StrongerThanMe View Post
I have had CRPS since the middle of my 7th grade year and now I will soon be a sophmore in high school. It has turned my life upside down, right now I have no clue what's going on. I hurt all the time everywhere, its not as bad as my first "flair" but still. I am starting to lose feeling in my feet, and well its scary. I feel all alone because my mom yells at me daily since all I want to do is nothing. I have lost all my friends but one even though we only talk every once in a while. I don't know what to do or who to talk to when I speak to my family they act like they have been in my shoes which they haven't and when I try ( or tried) to talk to my friends they don't listen. Do you have any suggestions? Ways you deal with it?
your friends are teenagers (same as you) but they do not have to be serious.(its all play to them). getting them to sit down and "get it" is going to be very hard. the best I can offer their is patience. if you are lucky to have that one friend that will listen you have won the lottery.. and remember you will get older and the selection of friends become more mature. as far as your parents go.. I am angered by this. As your parents they should understand this disorder better than you so they can better understand how to help.(I assume you were dx,d with this beast) and under that understanding ..do they not go with you to the dr,s appt,s and dont they ask questions . I suggest that you print out as much material as possible that quickly explains what this "DISORDER"is. let them see what other RSD patients go through . then maybe they will take the time to listen to you.
I understand that sometimes it is just easier to sit down and try to get comfy on your bed or couch,(for some that is all we can manage) but keeping moving is important in treating this beast,Its not easy and sometimes you may have to fight yourself to do so but try to keep thing moving somehow.
It reminds me of something my father said all the time.."move it or lose it". granted he meant get out of my chair or you wont be able to sit ever again. but it has meaning with RSD. if you stop moving the affected area it makes it eaven harder for other treatments to work .. I hope this helped ..a little any way...
good luck

 
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Old 09-18-2012, 12:48 PM   #10
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Re: Not In Control

Hi, I'm sorry people don't understand. A shorthand I use with other parents which surprisingly gets an instant understanding (well as much as you're going to get at a superficial level) is to say that the original injury got the wrong treatment and developed into something called RSD, which massively magnifies the pain of the injury. People seem to understand that. Maybe it would bring your mum on board (she, like me, was reacting through fear and anger at the RSD, not at you) by asking her to explain it to some of the parents. Best wishes

 
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Old 10-19-2012, 12:58 AM   #11
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Re: Not In Control

I know how you feel. I have had rsd since i was 3 and got diagnosed at 11. I missed so much school and i was always angry that i couldnt keep up with my friends and they never understood and adults thought i was lazy. I always hated and still do hate when you wanna talk to someone about it and they say oh well my legs hurt like that too or theyre just growing pains every kid goes through that. Sound familiar? I bet it does lol. Im 28 now and sorry to say but those types of things dont stop. But i do wanna say there are so many things out there to do so you have to find your thing. I love crafts and make all sorts of stuff. I have rsd in my hands as well but thats the one part of my body i know i can push. And if i were you i would go talk with your fav teacher and ask them to help you set up something for rsd like a fundraiser. Rsd awarness month is november and the color thats for rsd is orange. Get out there and spread the word! You will be amazed how many people will want to know more about what you go through everyday and how much they will respect you for getting up and fighting! Pls write me if you wanna chat im always free

 
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