Hi I'm New Here
 

Just Wanted To Say Hi. I Found This Site Today And Like The Set Up ... Lots Of Good Info.
I Have Had Rsd For 10 And 1/2 Years Now. I Awoke From Hip Replacement Surgery And Had Nerve Palsy And Then Rsd ... Of Course I Was Not Diagnosed For Months ... So I Have It In The Left Leg And Now The Right Foot To A Lesser Degree.
I Am 54, And Wife And Mother Of Two, And Grandmother Of 6 Boys. I Read, Crochet, Quilt And Do Gardening In The Warmer Months. I Was A Registered Nuse Before Rsd ....
So Glad To Read All Your Info, One Never Knows When She Will See Something Helpful.
Joan_m

Welcome Joan!

You will find a lot of really GREAT people here.
Please feel free to jump in and talk to anyone and any thread, share your thoughts, successes & failures with RSD, if you need to vent, scream, rant, rave...you're welcome to do that also.... everyone here understands.

The more the merrier!!!!

Abbie

Thank You Abbie. Nice To Meet You. I Am Always Hoping To See Something I Don't Know About ... Some Comfort Measure Or Even A Nice Miracle Med! I Am Also Up To Sharing What I Have Been Through And What Works For Me.
So Again Thanks For The Welcome.

Hi Joan,
 

You'll learn a lot here and maybe be able to find new things to help with the RSD pain. We're all still waiting for that miracle drug though so we'll just all have to sat here and wait for it together. LOL

What have you been through to get the RSD in some control. We all have different stories with it.

It's interesting to here that you had a hip replacement and ended up with it. That is one surgery that is on my list to have but my Dr. wanted to wait until I got a little older because they had said they didn't last long. That's been a few years back though and I have heard that they have better material to do the hip with.

I'm 55, had RSD since 98 and I have mine pretty much in control except the pelvic area or more near my left hip bone. I have it in my right arm and hand left arm and hand where it's mirrored over and in my right foot up to my hip. I've had blocks though that has been a Godsend to me. Some I've had with my surgeries so that helped keep it from spreading more in those areas. I also have it in my right side. Funny how it bounces around all over the place.

Anyway, I'm glad you found us and stick around and you will learn a lot.

Ada

Hi Ada,
I Had My First Hip Surgery In 1974 And It Lasted 22 Years! I Had The Second One That Was Done Wrong And Had To Come Out ... That Was The One That Left Me With Nerve Palsy And Rsd. I Had My Third A Year And Half After That One And Have Had That One For 9 Years Now And Am Doing Fine With It.
What Works For My Rsd ...hmmm ... Well 400mg Of Neurontin Three Times A Day For Sure, Tranxene To Sleep And Stop The Leg Cramps At Night, Four Ibuprophen At The First Sign Of Swelling And Also Before Car Trips Or Any Other 'overdo' I Plan To Do, The Wood Stove! Fleece Socks, Elevating My Legs Several Times A Day. And Knowing When I've Hit What I Refer To As 'the Rsd Wall' ... When I've Had It And Am Over Tired And Hurting ... I Give In To It. Als In The Summer I Have To Stay Out Of The Humidity .. It Causes Swelling For Sure.
So That Is My Story Sad But True! Ha! Oh, And Keep My Sense Of Humor!
I'm From Massachusetts, Where Are You From? And What Is Your Cocktail For Comfort?

welcome
 

Joan
Welcome!

You will find this a great place to be!!

May I mention one thing? Many of us have had the RSD affect our eyes. I know I have. Even without the RSD making my eyes alternately blurry and sharp and sometimes jittery... I already was extremely nearsighted, needing very strong contact lenses - plus trifocal glasses over them.

Reading all caps, or initial caps (like your messages are typed), or type that is colored red, orange, purple, blue etc... is very difficult for many of us. It is much easier for me to read if a person types in all lower case rather than initializing every word.

Usually I will take a message like yours and copy it into another program and convert the text. I have a little utility on my Mac that I copy text into that will turn all caps, Initial caps, etc... into "sentance case" so I can read it easier so that helps on the messages when people type in all caps too. I don't know if there is something similar for Windows.

Some people that use certain colors for their type - I cannot read their posts at all here on the forum. Standard black type is still easiest for me to read. If they post something I really want to read, I copy their words into another program, then change the type color to read it.

But, if you are using voice software to type, that is fine. We will figure it out.

I know you will find this forum very helpful to you! Most of us used to belong to another forum. When I found it - I began to get a grasp on my RSD. I knew what to ask for, what to turn down etc. when seeing the Dr., therapist etc.

Welcome! So sorry you had to find your way here..meaning that you have RSD/CRPS.... but this is the best place on the net I have found. I think I am a member of 5 or 6 forums, but this is "home".... ! :D

Jules

Hi Joan,
 

Funny you mention humidity. I live in Colorado but was born and raised in Ky. When I went back for visits, it seemed like I hurt less there but I still had a time getting around. Bill and I were both from Ky. so when we went back for visits all we did was run when we were younger. I had 9 brothers and sisters and Mom and Dad and he had 8 brothers and sisters and his Mom so we were going from home to home to visit.

I got sick in 87 so it got harder and harder to go back for visits and then we finally quit going except when we lost family members. That got to be too many even for me to back to then. Bill went 3 years ago when his Mom was ill but I wasn't able to go. Then I went in 05 when my sister died but only stayed 4 days.

Anyway sorry to get off track, there is no humidity in Colorado, at least not very often but I still have trouble with heat. This past summer I managed to work in my yard some. Bill and I built 3 flowerbeds in the back yard this past summer and I loved messing with the flowers. We would rotate watering the front and back yard because it was too much for one of us to do alone.

I'm having trouble now with heat even in the winter months. If I get too hot I go into a pain cycle that drives me crazy. I also have trouble taking baths because of the water putting me into a pain cycle. It's driving me nuts.

I am on Methadone for pain and I have lidocaine patches. I can't take any other meds. I have had Stellette Gangleon Blocks and I have had triggerpoint injections of Lidocaine, Mericaine, and other pain meds. I spent almost 5 years in PT. It was not hard PT though mine was actually massage therapy. They started me out on hard PT and found out real quick it made me worse.

I got RSD from Thoracic Outlet Syndrome surgery on my right side. I got it into remission with a block and then had rotator cuff surgery and that brought it out again and it spread pretty fast after that. It's too 8 years to get it under control in my arms and foot. Last summer it spread up my right leg and it's in my pevic area also. We can't seem to get it under control in that area.

I try to keep going as best that I can. In the summer months I take walks that are about 3 and 1/2 miles and in the winter I exercise inside. I am bad about getting my pain going though by overdoing it. I can't use my hands and arms for any kind of exercise.

I would say with you have the hip replacement and the RSD in those areas it's very hard for you to get around. We uses to talk about on here which was worse not being able to use your arms or your legs well I know that either is really bad.

Have you tried the Lidocaine Patches. They are very good for putting on areas that are hurting really realy bad along with your meds they do make a difference.

3 hip replacements, Jeezes, I thought I'd been through a lot.

Jules, I wondered what caused the eye problems we have. I use to be able to see so good and now I have the same problems you have. I thought about going to an eye Dr. but I just figured he'd chalk it up to my medical problems.

Joan, glad you found us and do stick around.
Ada

hi ada and all
 

it was nice to hear from you. i have been talking to my doctor about what to try next for breakthough pain. i have been using ultram over the last few years but it makes me so nauseous and makes me loopy which is not what i am looking for. i also have problems with my liver not metabolizing almost all narcotics so that is out too. the lido patches may be the way to go. i will have to decide if my pain is localized enough for that. it seems when i get breakthough, it is everywhere. i also have reynauds in my hands and there is little you can do about that either, except keep moving. i have had facet blocks in my spine for a badly degenerative area and then pt for that. the pt got me stronger, but it was all i could do! when i finished that i was wiped out for the day. it is all a game, seeing what works and what is too much.
i also get easily overheated ... even though i have the freezing feet! and then there is menopause! what a mess, huh?
i am going to vote that it is worse to have a problem with your arms ... i love to keep myself busy with hand work, and so i would not want to be without that. i worry more about the reynaud's than the legs although they hurt more.
i also developed vision problems and were progressive lenses and my big problem is if i read for too long or when i change from clsoe work to looking far away ... it is very blurry until i adjust.
oh and we put spinkler system in so i can garden but do not have to water ... that was a great help.
hope you are all having a low pain day joan

Hi Joan,
I just wanted to say on the Lidocaine patches you can use up to 3 of them at a time and they do help the worst areas and therefore kind of tones down your pain some. They are worn 12 hours on and 12 off.

As far as Ranaulds I also have it and I wrap a Lidocaine patch around my hand at night and put a glove on or wrap it in a heating pad. When you're desperate you try anything.

I am doing better with the menopause, not having the hot sweats but I still deal with getting overheated but I don't think that it goes with the menopause.

If you put a patch on and then put the heating pad over it, it also makes it work faster and the heat helps also.

Like you, I try everything, what the Drs. don't tell me to do I think of. Desperation makes you look for answers.

Everyone on here tries different things to get through this. Not one thing seems to work for everyone with RSD.

On the PT as I said, they tend to think that we can do anything they think we can but if you get a PT that has no ideal of what you are being made to do is making you get worse then you should look for another PT. I had one that I quit going to because he thought I could lift weights. I dumped him quick. Don't let them make you worse.

I hope you have a great day.
Ada

cream
 

Joan,
have you tried compounded cream with ketamine? Many of us use one with various ingredients - mine has ketamine, lidocain and 4 other things. But, I think most people use just ketamine and lidocain. You can use it on more area than the lidocain patches. It has to be applied more often though.

I still work, and my elderly Mom lives with me. So, before work, I have my Mom put 3 lidocain patches on my back where I cannot reach to put cream on. This lasts me the entire time I am at work... then I use the cream on my shoulders and arm in the area I can reach. I can re-apply in the ladies room as needed. If only I did not have to wear a bra to work!!! But I am not a lady who would look very good if I went braless - and I would not feel right about it... especially since I am one of 3 women working in a building with probably 35 men second shift. So, I suffer... but the patches under my bra strap and where my bra is over my worst area makes it much better.

I think somewhere on here, in our old messages we have talked about RSD creams. If not, we should start a thread about it to document it for new members/lurkers. It's important info! Helps a lot! I'm waiting now for new cream with ketamine at 10% instead of 4%.... can't wait!

Jules

(thanks for changing the type.... it does make it easier!! I do use progressive lenses on the computer sometimes too... depends what my eyes are doing at the time. My eyes change with my pain.)