Reflex Sympathetic Dystrophy (RSD)

[livingwith]

3 years ago I met a man and fell in love at first sight. I know how corny that sounds, and am not a overly romantic fairy-tale driven woman. I have spent the past three years in this relationship and I knew upon entering the relationship that he had RSD there are times when I feel like he couldn’t be less interested in me, times when I feel as though I’m the only one that even participates in our lives together and when I’m sick he’s always to into his own issues to ever...Read the full article

[CherylBe1]

Hello,

I am Cheryl the one that wrote the story below yours. I have read your situation and to
answer your questions RSD is extremely painful and could get worst.

As you know there is not a cure for what we have. I can only tell you from my experience and
having RSD especially being once so active in my life is like one going into a depression but with physical pain. It affects me physically, mentally and emotionally.

This is something that you can never relate to just like someone having cancer I could never
relate to them. However, I can try to understand the pain and the change of life they may
have.

Can you imagine at one point be able to open a jar by yourself and now you have to order a
jar opener or wait until someone comes home! Well, I can and it is so overwhelming to the
point depression starts to sit in.

The pain and the discomfort is something that is indescribable; imagine being sensitive to
touch and cold, the burning feeling in your body that you get even if you are doing nothing,
the pain starting to spread, the throbbing pain and not to mention the headaches because I
am so sensitive to light I have to wear my sunglasses in the house. The embarrassment of the
swelling and the change of colors no matter where you may be.

RSD is something I would not wish on my worse enemy (if I had any). Just read my story
it will tell you more about me and the affect it has on my family.

Believe me the ones with RSD would like to live, move around and at least try to do what
we use to but it is extremely difficult because of the constant reminder that we have THE
PAIN AND DISCOMFORT EVERYDAY.

You say you are scared not as scared as he is. If you love him stay with him because I can tell
you this, he needs you. The pain at time is extremely difficult but the mental and
emotional aspect of RSD is extremely overwhelming.

I am a single mother and because I have my family and not alone I am doing the best
I can because I do not want to let my love ones down. At least I have something
to keep me wanting to beat this even if I hate the state of my condition.

It's not pity we seek but understanding that our lives have extremely changed and it
is hard to except it. RSD from what I have learned does not go in remission, there
are no breaks ( not in my case). If I am wrong please someone tell me, I could use
some good news myself as well as others.

Would love to go on but my headache is getting the best of me. I wish you both well!

[RSDforyears]

I can emphathize with your confusion of whether your partner's response is related to your relationship or his pain. In my experience, being affected with RSD involves intolerable sensitivity, pain, swelling, discoloration, and sweating. After 17 years, I am still not prepared for an RSD "flare-up," which causes such intense pain that I am rendered unable to walk, move, or sometimes speak. My days are filled with ones in which I cannot perform daily tasks, but some days are better than others, and maintaining physical fitness programs helps me retain mobility. Yes, using mental focus is needed in order to get through the rougher times. Perhaps you might consider support groups or counseling which could provide both of you a means of learning to communicate through this discomfort. With RSD, the unseen pain is almost too much to bear--for both the sufferer and associated loved ones. I wish you both well and kudos to you for caring enough to find supportive solutions!

[Nia]

I,ve been living with RSD (lower left extremeity) for the past 16 years. By the time I was diagnosed I was in stage 4. Physiotherapy, occupational therapy, and psychological therapy with lots of medication : anti convulsions, anti-depressants , sleeping pills, morphine, heavy doses of calcium etc. plus, epidurals and nerve blocks were all part of the treatment for years.
I'm still using medication to control pain and depression. Certain anti-depressants have an effect on pain as do certain anti-convulsions(Lyrica, Neurotin).
RSD is a battle between you and the brain. For years I repeated over and over,"Brain no pain." I was determined to break the cycle of RSD.
I had excellent specialists,:pysiatrists , rhumatologist, psychologist and psychiatrist. They met on a regular bases to discuss my case. RSD was extremely difficult to diagnose in the early 1990's.
He needs to stay out of his brain/pain...How? Give it something else to do . I took up painting and gardening which kept my mind busy. Having a supportive partner and one good friend is crucial . You need to understand how your partner feels in order to guide him out of his brain/pain. You need to be creative, inspiring and patient.I would get so overwhelmed with pain that it completely absorbe my life. It controlled me till I decided otherwise. I had to bounce back.
My worse experience! A support group. It is difficult to live with limitations; you don't need to hear what comes next which incidentally is not necessarily true. Stay close to normal living as much as you can.
Everything I did, was worth it . It does get better and keep reminding yourself and your partner that the worse is over and better days are ahead.
Hope this can help!

[Blackbetsy]

Hi,

This might help:[moderator note: website address has been removed]
good luck

Blackbetsy

[RSD PATIENT 21]

i can understand your frustrations and fear....i can tell you that from my experience with rsd and my boyfriend...at first he was very withdrawn and scared too...this is normal and he told me why he was like that...this is what he said "i know you think i was not there for u like i should have been but i truly was there. i just didn't know what to say or do to help you. i was afraid of hurting you if i touched you because i know you have so much pain. i was there for you mentally but i didn't show you that i was. i didn't want you to get upset because i was totally confused and hurt about everything you are going through...i don't know how to stop your pain. i wish i did. i am so upset that i can not help you and i have to sit here and watch you suffer in pain..i just wish i could take it all away but i can't...i realized that i may not be able to take the pain away but i can atleast help you deal withit.i have been there for you, even though it didn't seem like it. i can honestly say i am here for you now and i will always will be...." this was a while after i was diagnosed with rsd. he was scared himself not knowing what to do to ease my pain and feared hurting me by touching me...he now has seen how tough it is for me and how much pain i experience that he got passed the fear issue....so my advice to u is give it time and he will learn to accept what you are going through. i got injured 2 1/2 years ago and he is still here helping me through it all just like he promissed he would...i have learned that you need a great support group...whether it be family,friends,drs,boyfriends,or people like you and i and the other millions that are living and suffering with the burning pain of rsd...i hope this helped you and don't worry we all have experienced a problem like this i am sure..just remember you are not alone..we are here for you...i hope all goes well...maybe he could read this and maybe he will open up and talk about it to you.jsut let him know that he is not alone either...thanks, RSD PATIENT 21