[Linmarie]

I’ve had RSD for 3 years, 11 months and 2 days. I’ve lost my ability to work and do anything I enjoy. I spend my days fighting this dreadful disease. I have to watch very carefully what I do and limit my activities greatly. Every moment is done with RSD on my mind and knowing the consequences. I have to ration the steps I take to limit the pain and the swelling. My hand is always on fire. My sacroiliac prevents me from getting into any comfortable position. Yet, I have tried to appear normal. The people around me don’t understand RSD even though I have told them about it and given them written information. Sometimes I think that they think it’s all in my head and that I’m crazy. (Yes, RSD has driven my crazy to an extent). I try to hide my pain from them because no one wants to be around a grumpy, sick person. But they could still have at least a little compassion and ask how I am doing. They don’t acknowledge it.
Monday is the day I see my grandson (the one thing I do enjoy now). I plan, as we have to with RSD. Last night I called my daughter to arrange the details and she informed me that my grandson would not be coming over today. She was very snippy and said she made other plans. I reminded her how I have to plan for it and not do much the day before and plan a day after to recover. I told her how I had gone shopping and planned dinner for them. She went on about how she wasn’t going to do Mondays anymore. He sees his other grandmother on Thursdays and I asked if she was still going to do that and she hesitated. I don’t know why I’m being dropped. Everyone appears to be having a good time here & I don’t complain. Maybe they don’t want to be around a sick person. I’ve lost friends who drifted away since I got RSD. It hurts! The emotional pain on top of the physical pain is way too much for me to handle. I’m pretty much isolated. It’s so difficult for me to go out. Last week I got ready to go to a wedding and couldn’t get my shoes on because my feet were so swollen. Depressing. It’s like I can’t plan things because I don’t know whether I will be able to make it or not.
RSD has taken so much from my life and it is so difficult spending my life just fighting it. I don’t have a support system. My husband is getting tired of it. I just don’t know what to do.
I haven’t slept much, cried a lot & know a flare is on it’s way.
Thanks for letting me vent. Hopes to a low pain day for you all.
Linmarie

[Desi]

Hi Linmarie man, oh man!! I could have wrote this!! I so understand what you are going through!! I too have an oldest son who refuses for me to babysit his youngest son who is now 11 months old!! I am missing out so much on this. As for those who don't want to even uderstand or even friends who have left you because of this RSD, in my opinion they are NOT your friends, or they would stick around and at least be there for you! I have 4 sisters and 1 brother.. and so far one sister finally is really trying her best to ask some questions about this beast of RSD I too feel isolated from people. I do however have my faith in Jesus that loves, comforts, and see's me through each day. I know it hurts.. people, even our own spouses do NOT understand what we are going through. they are not walking in our shoes Linmarie. well, sweetie, please come back, I thank God for this board and every single lady and gentleman on here, they are amazing. some post links for us, some pray, some cry with us, some whine(me) LOL with us.. so ya see.. we know, we understand. stick close to this board hun.. hang on in there and here is some much needed gentle for ya!! Love, Desi

[tommie]

Dear Linmarie--I am so sorry you are in so much pain. The "heart-pain" of not getting to see your grandson can be almost as painful as the RSD pain.
I hope your daughter will reconsider and at least come over some Mondays. You are right, I have to plan ahead some too when I want to do events. I missed my niece's baby shower a week ago due to a flare up, and when I went to another family get-together on Sat. my sister-in-law came up to me and said she could see that I was in a lot of pain, but, she appreciated the fact that I had traveled the distance to be there. Of course she did not know that I would be in bed recouperating for the whole next day, but, it was worth it to me, I had planned ahead for that too, because I knew it was inevitable. My husband has been pretty supportive, but, he does get my goat when I am 'grouchin around" and in so much pain, and he walks out of the room and as he walks away he says "Be happy". GRRRRR that gets me.
He knows better..I give him the ole silent treatment...until I am feeling better, then we are O.K. again, but, mostly he is supportive. My RSD seems to be spreading and all I can think of right now is "I want my REMISSION back!!!" I have had RSD for almost 10 yrs. If I can control the PAIN, I can
work, I can sing, I can dance, and I can BE HAPPY!! But, oh those flare-ups, they are bad--I was so glad to find this web site where I can read about other people who have to deal with this demon-disease. They can be so supportive and so helpful. I have not met anybody else who has this horrible disease, so, it is nice being able to exchange information. I will keep you in my prayers Linmarie, and right now I ask the dear Lord to give you comfort and to hold you up in His everloving hands--I do not mean to affend you in any way, but, hope you accept this blessing as it is given--in good faith and with love--sincerely--Tommie. (TK)

[1to talk]

I feel the same way I give up trying to do anything. My wife does not care thinks I'm so lazy and I make this all up! Right all the doctors are paid off by me with what money? OH she has all the power right now she says she brings in more now and so she can spend it how she wants when I made more we always sate down and went over the bills and I never spent money without her agreeing! So she goes out alot now and she even said she is taking her own vacation without me our the kids I said who will help me with them she just shruged it off, and said deal with it. I asked her why cant we all go? she said nope you dont make enough and your to sick! plus you are a druggy! I love her so much what changed her the fact of RSD and me being in pain? or was it the fact I made good money and now she does not have all of it comming in anymore. I wonder sometime when I get my settlement I will just leave her but I get scared for the kids, they are old enough yet they do think of me sometimes like her I was just a money machine for them I guess. Life stinks, my life stinks with this I hate it I want to just fall off a bridge but nope I cant not till OH forget it you all dont need this either.

[Desi]

Now.. don't talk like that!!! we don't want to "loose" yet another one!! hang in there and remember that we are all in this together! Please stay with us.. vent. don't say we don't want to hear about this!! we DO!!! your not here by accident.. your here by the grace of God! hold your head up.. He loves you and so do we Love, Desi

[1to talk]

Sorry I said it wrong I will not kill myself this will do it for me! This GOD awful RSD will destroy our body piece by piece is how I feel one part at a time this pain will spread and consume us in fire and all doctors can do is guess and say here try this and this...mmm it works we say untile our bodies get used to it and the dose goes higher and higher, people than say hey your a druggy like my wife so I live like this waiting till my next does of Mr. Feel Good, I druell and fall asleep I walk funny I hurt so BAD and I have to plane out my days like a first grader know what do I want to do today that will cause me pain but do in moderation so I do not have full blown PAIN today. I cannot forget the constipation I live with yup good old wondering if I will clear myself up today or is it tommorow no matter I feel sick because I cant eat I'm so backed up, man what a life I see my wife should leave me I will just be a bum, I wonder how many of thoes bums we all saw when we where healthy had this? no wonder they drank so much because of the PAIN! they cant get meds any more so why not wine and beer...will it be me next you see on the street.

[frogga]

Linmarie - sweety, I want to send you thousands of love and hugs and say that I am thinking of you. This disease is really tough on us isn't it? Some days everything that happens just feels so unfair! There are days when you just want to SCREAM! It feels like you get this and then everything starts to fall apart..

I hope that you can get some more support from people around you - and that things can start to look up for you soon and you can get your grandson back over! I do know what it is like to need military precision to manage life.

Anyway, hang on in there babes,

Love ya!

Froggsy xxxxxxxx

[frogga]

Hi 1 to talk

I can't remember if I introduced myself or not - I shouldn't be kidnapping Linmaries thread but I just wanted to say hi. I am 21 and live in the UK I have full body RSD and have had it for 5 years.

RSD is a very hard disease to get - not only are the symptoms awful but it seems to destroy eveything around you at times as well - relationships, work etc and it is HARD. It is hard losing friends, relatives that don't believe you, not being able to work, do things, see people etc.

Are you under a pain mangement specialist? It sounds like you could benefit from something like a pain mangement course. You sound (justifiably) very angry about what has happened and what the RSD has done to your life - which I can FULLY understand and how it affects your relationships. Do you think that your family would react better if they saw you trying other methods to manage the pain? these courses work on helping you find coping mechanisms to cope with the pain - through medication, meditation, deep breathing, stress relief etc and look at the effect of diet, exercise and pacing. They also look at sleep, stress and lots of other things and how they affect life. They have had some good results - and they might help you cope better, as it sounds like life is really rough for you at the moment.

I really hope you are not offended. I have severe RSD and am very disabled from it so I DO understand how bad this disease is - it's just that all your emails contain such mental pain as well as physical pain (understandably in your situation) that it sounds like something like a pain mangement program or a pain psychologist would be really useful for you.

Love

Frogga xxxxxx

[InHisHands]

Linmarie... perhaps you could find a counselor who is experienced in pain to help you out??

I know the hopeless, worn out feeling... depressed feeling... I have been there... just sitting on the couch, feeling so worn out, crying my eyes out and feeling like nothing was going even "okay". Things have improved since then, and I do have interest in life. I found that forcing myself to do normal things then brought me back to "life" and wanting to do normal things, until gradually I do things because I actually *want* to do them. Not because I am forcing myself. But for now, I'd suggest you try hard to do something you used to love. Make scrap books, play with clay, make cards, sew (if you are a crafty person); grow a plant- see life! play with children- see some more fun life! Just do something you used to really love. Try it- I did it and it brought me back. Mom made me, and I hated it at first... I just didn't want to, couldn't do what I used to loved... then I learned again!

I hope things improve! I just want you to know that I am sending you loads and loads of (((HUGE HUGS)))

I am sure that certain situations don't make the pain any better. I hope things improve in that way too.

P.S. These types of support groups are awesome for RSD... there are others too. Keep coming to them-- they do help!

[Linmarie]

Thank you so much for the support. It really helped me to vent. I'm still upset but the tears have stopped. I try so hard not to get emotionally upset because it increases the pain but this really hurt me. Yes, I'm physically feeling it, too.
I haven't been on the board for awhile. I'll check in every few days and read some posts and then hurt so much that I don't even reply to any. I'm sorry I haven't been supportive.
Desi, I'm sorry to hear that you are missing out so much on your grandbaby. I only have one grandchild and he means the world to me. I wish our children could understand what it feels like to me a grandma & how much joy it gives us. I hope you can babysit soon.
Frogga, I need to catch up on what you've been up to. I enjoy your posts so much & really admire how upbeat you are. You always give me a smile.
Tommie, I don't think I've read any of your posts. I look forward to reading them. Welcome to the board.
1 to talk, I feel your pain. That's how I was feeling when I wrote this morning. RSD truly changes our lives for the worst. I've been so beat up by it. Frogga gave you some good advice regarding the pain management and therapist. I do all of that but some days it just doesn't help me (no offense, Frogga). Vent to me all you want. I understand. Have you tried ducosate for the constipation? & welcome to the board.
Thanks again & even when I'm not on the board I'm thinking & praying for you all.
Linmarie