Thank you all so much!
 

I just wanted to say thank you to everyone who has given me advice and supported me. It's funny how even without knowing you face to face the advice and words of encouragement you have each given me really help make me feel like I'm not alone. I had a couple hours last night where the cloud in my head cleared and the pain decreased; it was just nice to feel more like myself again even if it was for a short time. I love the quote Kathy. Unfortunately, I have not yet mastered the art of dancing in the rain, but I'm working on it. Once I do, at least I'll know we'll all be dancing together:)

remember this:

Rsd will ruin your life.......if you let it.

Whatever is causing my pain causes a sense of pessimism at the same time. I'll go for a long time feeling one or the other a moment earlier.

But over the years it's not always just pessimism but can be depression or a sort of capitulation. It's part and parcel of the course for me. If I can avoid the pain I can avoid the pessimism and most of the other nasties that come with the pain.

So sorry to hear about everything you are going through right now, Lovefamilypets!:hug:

I have RSD in my left leg, both arms and possibly back though this isn't confirmed yet as I also have major back issues going on at the moment. I've had RSD since I was 12 years old and am approaching 16 in a couple of weeks.

Like with your situation, I often get family members telling me that I just need to 'do more' and that i'd feel better if I did. Easy for them to say but they don't see the flare I am in for days, sometimes weeks after I have had a busy day!:rolleyes:

My Neurologist wanted to put me on Keppra a few months ago but I was told not to go on it as it could make me really depressed etc. I have been going through a depressive stage lately as I got told by my Doctor that there is nothing else he can do, things probably wouldn't get any better and may get worse. It was a really difficult time. I already suspected it but I guess it's harder actually hearing it come out of a proffesionals mouth. :rolleyes: I'm still really depressed now but not as bad as I had been. At one stage I was contemplating suicide as it all got too much and actually took my medication (mum had to get me urgent help for that).

I do have a boyfriend and most of the time he has been SO supportive. He has mild Cerebal Palsy so I think that helps him understand things easier, plus he has seen a lot of what I have to deal with firsthand on a daily basis during the year we have been together. At New Year, we did have an argument as he said the same as your boyfriend - that I should push through the pain and others have it far worse. I think it all got too much for him; he was having to support me mood wise and physically and it was a huge challange. We actually split up for 2 weeks because of it but are back together now and has been much more supportive. He's been attending my hospital appointments so I think that has helped - maybe that might be something to look into for your boyfriend too if he doesn't already??

I agree with what the others have said though, it isn't that easy to just get about day to day life like a 'normal' person. We have to be a lot more careful, trying to prevent flares etc. Some days I just want to snuggle up in bed, with an hot chocolate and watch a bit of television. I don't want to see anyone else or do anything. People don't tend to realise that I need time and space though I am hoping they will understand more one day ... to be honest, I don't think anyone would fully understand unless they have RSD themselves though.

I do hope things start looking up for you and your boyfriend. Perhaps print some info about RSD off the internet - never know it might work and is worth a shot if nothing else! :)

Take care of yourself and i'm here if you ever want to talk!

Alison

Lovefamilypets, I have generalized RSD and i know what u r saying. Its taken me a few years of therapy to realize we do our best. We r aloud to have bad days or days that we dont want to push ourselves and that's ok. I have found the hardest thing was, like you, knowing what i should be doing but at times not having the strength to do it. A lot of fear and anxiety later, i realized the one thing about my RSD is that the pain intensity and area changes and that even though i might feel like crap at this moment i know things may change in the next hour but until then its alright to take it easy. I do find it important to know when i can do something to do it because, i like your boyfriend, know that there are others suffering as much or more-yet we cant compare ourself to anyone but ourself. I remember crying feeling so helpless and embarrassed at how slow i was walking and my daughter said, "dont compare yourself- ask yourself, do they have RSD? Then they dont know what its like" It really helped me at moment. Now when if i feel that way i think to myself-it is the RSD stopping me, not me. momof4

I am so embarassed by how slow I walk, but I don't anywhere but church and the dr now so it cuts down on that stress inducer. But like tonight we went to our grandsons' bb games and had to leave early because of my pain, I had to manuver the bleachers and walk the gym looking like I have my ankles tied together. And I'm wobbly on bleachers, but I'll always be wobbly on bleachers and there won't always be bb games that my grandsons are playing in. I'll pay tomorrow but it is worth it. And you are right, it is the RSD, because I try to walk faster and it doesn't work.

And it isn't always that my pain is only a 3, or a 4 or a 5 some days. It is that it never goes away. Sometimes that alone beats you down low. So I try to do my best for that day.

grateful to be alive,
pat e

I don't want to oversimplify. But one thing I'd like to add, is that when I feel 'down', I find that 'looking for help' from a friend, often brings them down as well.

So, I also find that just calling someone, and helping them, even if they're not down, if you just call and tell a joke, anything to raise the bar of both of us, after that call or interaction, makes them feel better, makes me feel better! It gets me out of that negative moment, and ends the 'worry cycle'. And, isn't that what makes life worth living?

pete

asb

Hi Alison,
My heart really goes out to you as I know yours went out to me. I was first diagnosed with RSD at 19 and was fortunate enough to go into full remission for several years. At that time, I had doctors telling me I would never get better and I also had doctors who simply refused to treat me since they said they had nothing to offer me. It is devastating to hear that as a patient, but I just want you to know that I defied the odds at that time and I believe you will too!
Like you said, sometimes I don't think it is possible for anyone to truly understand what we go through unless they too have been through RSD. It has been challenging for me to try to stay connected with people, but at the same time also a blessing to have people who want to try to support me even without fully understanding RSD. I'm glad you and your bf have worked things out. I too have those days where I just need some space. Thank you so much for sharing your story with me and supporting me. I hope I can do the same for you!
Nicole

Dear LFP,
Truly, the only thing that lasts and serves us from the heart is our relationships. It is difficult but I need to remember that investing in my husband, my children, my grandchildren now has a higher cost. But I am willing to pay that cost most of the time.

Today, I had to drive 55 miles one way to sit with a sick grandson and a healthy one while my daughter went to class. At some point during the day, Elijah, who just turned 5 last week loudly expressed this sentiment. "Grame, this has been the best day of my life!" I don't care how many pills I have to take tonight, tomorrow or the next day. I can replay that line over and over and it brings the same response as the first time. In fact he restated it later on in the afternoon. And when it was time for me to go, he grabbed my legs and said "Please call Grampe and ask him if you can stay overnight." I said I needed my medicine. His response, 'It's ok we have pills here and if you go I will miss you.'

Be true to those who are true to you. Don't wear them out, but be the kind of friend you would want them to be. Love covers a multitude of offenses.

I have a day this week that will be remembered not for what I didn't do, or for how much my pain level was, but because "It was the best day of Elijah's life because he spent it with me."

The challenge of connecting to those who truly love you is far outweighed by the return you get in comfort, entertainment, distraction and love.

pat e

Amen GramE!
Giving love, is the best way to get it back! Love, is like a mirror the more you give, the more you get in return! Thanks!

(not always true with boy/girl friends, but that's only vanity.)
Go on, let your heart go free!

Pete
asb