Help! - Reflex Sympathetic Dystrophy Message Board

brighteyes_007 · 09-15-2003, 01:01 AM

Hello,

I am knew to this board and if this ends up being a duplicate please forgive me.

Recently I have been diagnosed with SRDS. I was involved in an auto accident November 2001 and have had continually left neck, shoulder, arm, and hand pain. The orthpedic doctor I went sent me to physical therapy and differnt rounds of medications but pain continually got worse and I loss the use of my left hand. Dec. 2002 the Dr. did an exploratory surgery on my left shoulder becuase he simply could not find anything wrong with me. He found nothing but the pain in my arm and hand was significantly increased. After 3 months of Physical therapy and pain meds which did nothing for me, he sent me to a neurolgist which diagnosed me with SRDS.

I have read about this syndrome and still am in shock as to the loss of my job after working there for 25 years as the Laboratory manager.

I am now on Neurotin, Bextra, and all kinds of pain meds that either don't work at all or keep me so sedated I don't know where I am..just zonked out on the couch. I literally do nothing. I can't drive because of medications. I the most I may do in a day is a load of laundry or a dishwasher load .

It is bad enough to be in this fix but I see my children and my husband wanting so badly to do something for me and there simply isnt anything they can do. It is realy effecting our whole family. I was a very very active person ..coaching the kids in all their sports, chaperoning whereever needed etc etc and now I am beyond a couch potato just a lump.

I really don't see where any of this medicene is helping me. Are these all normal routes of medicenes? How do I help my kids understand why mom cant be there for them anymore?

Help please

Aly B · 09-15-2003, 03:38 AM

Hiya Brighteyes,

I am pleased that you have finally been diagnosed after all that time, but saddened that you have RSD.

I can empathise with you feeling like a "lump" after having always been active. I too feel that way and can do very little.

I was a happy, energetic, confidant woman this time last year. I ran my own business and also coached gymnastics an average of 4 hours per day. I used to leave my house at around 5:45 each morning and would get home around 9pm each night and going to bed before midnight was a luxury.

Now, somedays, I don't even brush my hair or get out of bed, especially if I have had an appointment or done too much the previous day. I am a single mother of 3 children who have had to do all the housework, cooking etc since my accident and it breaks my heart (they are aged 11, 13 & 15).

As if that isn't bad enough, their supposedly intelligent mother has gone loopy! Asking the same questions straight after each other or forgeting things or crying for no reason.

My CRaPS also began after a car accident in November 2002 and I have been tried on a variety of different medications, all of which, so far, have failed for me. I have always been fairly resistant to most anaesthetics and pain meds though.

How old are your children? I think my kids have learnt to accept it very well and realise that I am unable to do the things I could before, they actually tell me off if they see me trying to do even little things and insist on doing it themselves.

I have had to explain to them that I get cranky easy and to please not take it too seriously if they feel I have been unjust because it is probably because I am sore and not handling it well that day. They just come and talk to me about it afterwards when I feel better. I think they have learnt to keep out of my way when I am really sore actually or they just come in and without saying anything give me a hug.

Sometimes I think we dont give kids enough credit for being able to understand, you may find that they have worked it all out for themselves and just telling them in as simple terms as you need for their age will be enough.

I wish you well brighteyes,

*hugz*

Aly

deered · 09-15-2003, 11:07 AM

Brighteyes,

You do not need to make your kids understand that you are not there for them because you are. I can see your family loves you very much and you seem like a great mom. I have RSD and 2 kids. My pain is mostly in my leg and ankle and I can sympathsize with you because sometimes it is hard for me to get up and go play with the kids, but I make myself do it. Even tho the pain is unbearable sometimes the look on my kids face when they see that I am comng out to play with them is worth the pain I go through for them. ?i would fight the devil for my kids. Babygirl you need to be positive. The DR put me on Neurotin and it did not work for me. He has now put me on Oxycotin and percocet. That is all the meds I take and it is working out great. at first I was drowsy taking the meds but once you get them in your system you are back to normal well not normal but you know what I mean. Be strong or as strong as you can be and keep me posted

Soxy · 09-15-2003, 12:05 PM

Hi Brighteyes. Your post sounded so sad and frustrated. I am lucky that my kids are grown and on their own but I do have a 9 year old grandson that we have 1 weekend a month - so I know a bit of what you are saying. My husband does everything with him. Sometimes even the noise and the activity of 1 child playing with a dog gets to me. Maybe you are on too many pain meds. I take 200mgs of Topomax and ES vicodin 3 - 4 times a day. The Vics just take the edge off the pain. I can go to a different doc who is freeer with pain meds but I would be knocked out all the time. Believe me there are days when I want that option but most days I would rather suffer some pain to live a somewhat normal life - at least normal for me. How old are you kids? If they are young and you are resting on the couch maybe you could watch TV together or play cards or color. Kids are adaptable. Just being near you is enough. They know you are ill and can't do what you did before so you and they can and will adjust and make a new life. Don't worry. It will be o'kay. You are a good and caring Mom. I can tell that from your post. Hang in there. Kids just want to know they are loved. Hugs and kisses go alot further than flying a kite. Take care.
Soxy

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There is always hope....

dragonC · 09-15-2003, 12:59 PM

Hey bright eyes
I really understand. Besides being really active, I was the emotional head of my house too. My family went to the dogs after I got the RSD 11 months ago. I have it in my right foot an leg.

I had to learn how to take from them.They so want to do somethinig.

My husband hates being shut out but I can't stand being a whine machine. It shakes him up pretty good when I fall apart. My girls are 9 and 16 - with very different needs. My 16 year old we had to hospitalize for depression after the bad times started with the RSD. She was predisposed for other reasons but it was the very heavy last straw.... ANyway, she wants me to tell her what is going on. If I have been crying if I am in a lot of pain, even if I am feeling sorry for myself. She said it is easier to work with the truth than guessing and worrying its her fault.

. My little one wants to hear stories about when I could run around with her on my shoulders.

So I have been trying to ask for help before I really need it. You know what I mean?

Also, I think there are stages to acceptance, (Was it Kubler Ross who talked about the 5 stages of acceptance for death) This was tiny deaths in my way of life and I grieve them.

There are good days and there are bad days and I have found over and over again that a snese of humor carries me when no pain meds will. You can see it on the forum too.

Hang in there. I am glad you are with us. Just for today..... that's all you have to make it. Just for today...........
Cath