[Desi]

Hi All!
My left hand, wrist, some of my arm, ankle and foot was swollen. This has been going on for a week, and dummy me didn't realize how bad it got until my PMD told me to get up there to the ER lastnight. My RSD is in my right hand after having Carpal tunnal surgery Jan. 9th. of this year. The surgeon who did the operation conformed I had RSd in April. I had 3 SGB and all 3 did nothing!! Ok, I go up there, the doc. was a real "sweetheart"! he took ex-rays and blood work. He was mad that I have been shuffled to one PMD to the next! Well, the new pmd I have is sending me to PA to his coleague to see what can be done. My blood work was good when the Er Dr. had it observed and even gave me the findings of it, made copies of it to give to my PMD and also the ex-rays. There was mild degenerative changes in my left knee(my knee swelled too) My ankle, feet were swollen also. There was mild medial soft tissue swelling there.I then ask him;"could my RSD be spreading to my left side now??" He said yes, it is a good possibility!! How can this spread in not even a yrs. time, if it truly is spreading is my question?? I am so afraid! and yes, confused!! My left hand,wrist ankle and foot looks like a balloon!!~Love, Desi

[JOAN_M]

Hi Desi,
i'm glad you got good care in the ER but so sorry things have gotten to the point where you had to go. i am not a fan of ERs unless your doctor calls ahead and tells them what he wants done.
anyhow, unfortunately, yes, RSD can spread any time it wants. if we know one thing, it is that it has a mind of its own. however,you may just be having a flare up, and these symptoms will die down. i often have one during the fall for some reason, and i take a lot of ibuprophen to keep the swelling down and i give in and rest more. so far my RSD has only spread to my right foot, my primary RSD is left foot up to the knee, but i can balloon up to both knees and on to the hip area when i flare, and my hands can hurt and swell too, but i do get over it, and it seems to just go back to the feet area. i think the thing that helps is to medicate as soon as a flare starts. i also find i flare with stress.
it is a scarey thing. i feel so badly for you.
Joan

[sue k]

Desi,
I am so sorry that your going through all this. Swelling for me is very painful. Like you need any more pain right? I hope that things calm down soon. I find that if I elevate the swollen area, its helps a little bit. I wish you the best.

Love
Sue K.

[carose]

I am so sorry you are having such a painful time right now. Think back to Spring, did you also feel worse than? My Dr. said it is do in part to the change in weather. My hand was balled up into a fist and hurt like --well if I were an animal I'd chew it off!!! I guess I am lucky the dystonia doesn't keep it like that all the time. I wish I had some words of wisdom to share, but I can only pray that it is not spreading. And let you know I think here you are feeling awful and you took time to post encouragement to Mark.Carose

[Desi]

Hi Joan! Thank you very much for your reply! I went and picked up my new eye glasses today and the lady there said;"Oh my, what in the world happened to your hand"?? I said, it's probably something that you have never heard of. I then said I have RSD and she just nodded her head and said "Oh"! While she was trying to get a good fit with my glasses on me, she said, I'm sorry but what is RSD. Oh, I did not even want to "get" into a conversation with this beast again and again... there are lot's of people who also say, I've heard of it but don't know what it is. I too hope this is just a flare up like you said too Joan! The kind and compassionate doc. up in ER told me also to take Ibuprophen to get the swelling down. It helped some, but the swelling and awful aching, knife like pain is still there. I am also on 60 Mg. of the time released morphine. my knees feel like someone put a brick or something on them! OUCH!! Thanks again Joan, your a "sweetie"~Love, Desi

Hi ya Sue!! thank you for your reply sweetie! Yes, swelling is very painful, gosh I hate what is going on! I will do as you say and elevate. Duh! You would think I would have already been doing this!!Thanks for the reminder, Sue! Thanks for the well wishes hun! ~Love ya! Desi
Hey Carose! how ya been?? I need to go on one of those mind relaxing vacation's. try to think of a great spot, okay?? I was dx this past spring and no, I didn't have any swelling in any other limbs besides my right hand, wrist where the carpal tunnal surgery was done.(This past spring) I noticed it slowly started to spread to my arm and shoulder too. Not my knees, ankles, feet. Carose, you mentioned your hand was balled into a fist. That is what my fist was like lastnight. It's not as swelled like that today, but lots of swelling is still there. It may be because i'm taking 800mg three times a day of the neurontin?? hmmm... don't know?? encouragement to Mark??... LOL he is down right funny! I have to have a sense of humor and all you boardies out there or I would probably want to chew my RSD limbs off. LOL, like you mentioned! seriously though, I need to know why in the heck I am swelling up and hurting?? Thanks so much for your reply, ya fun loving friend!! ~Love, Desi

[Sandel]

Hi Desi..
Gosh that is terrible I feel for you as I have too been there, Id treat it like a "new RSD" and bone up on your vitimin C and antioxadents too.. also epsome salts can help the swelling go down and relieves some of the pain too..

best of luck with this Desi, it just may settle down just do what you can and plese try not to stress too much as that will only make it worse (I know it's hard huh)

be well and super soft healing hugs,
Sandra

Sandra

[Desi]

Thank you Sandra!
I have been taking antioxadents a long time. I will however get the epsome salts out!! Great idea!! I haven't had any stress until this swelling up started. The pain now, is causing me to stess out or "Spaz" out! LOL Thank you for those super soft healing hugs you sweatheart, you! ~Love, Desi

[lostmary]

desi,

If you really wanted to go out for the evening, wouldn't dinner have been more fun . lol. Seriously, I wish you didn't have to go thru this. You are too much of a super woman to have to suffer like this. I wish there was something I could do for you, to make it better. Just take care of yourself, pamper yourself, use the epson salts in a nice long soak, with music, and maybe something good to eat. Love ya

Mary

[JOAN_M]

hi desi,
yes, i should have said epson salts too. they do help a lot with the swelling, if you can get yourself in and out of a tub safely. sometimes, when we are in pain, that is a huge and maybe unsafe thing to do.
i know how hard it is to repeat about RSD, but we always have to educate people if we can and if they truly want to know. i just always wonder how to explain it???? what is the 'short version' of an explanation of these very intricate monster??? i still stumble over an explanation.
well, i am hoping you are soon back to your chipper self. i do enjoy reading your upbeat words.
fondly, joan

[tayla4me]

Hi Desi,
Sorry that things are not travelling well for you.
I have massive oedema so I do sympathise with you, it does seem to create a different type of pain.
I try to where tubigrip (when I can talk myself into it) on my legs. Some days it is possible---some not. But it does help a little.
Whenever you sit down put your feet up and rest your arms on pillows.
Epsom salts do help, just as Joan says. If you can't get in and out of a bath if you can get someone to fill a big basin or bucket up for you, that will work also.
Hope you feel better soon
Love Tayla