Please say it isn't so!!
 

I don't know your age but I will tell you about my mother and her acute arthritis, so you can compare.
It started off with a feeling of flue and slight fever, plus a lot of slime/coughing that would not clear up. It took time (about a year) before she was diagnosed with the onset of acute arthritis because she was 63 at the time and the acute form of arthritis generally affects young people, while the slower form generally affects older people.
The pain and swelling started in a hand, I believe, but did spread witin a matter of months to her feet, wrists and ankles. The rest would be like other stories about arthritis which would be in other places on this board, I guess. Did you look around?

Mine spread fast
 

Good thing is that the doctors aren't immediately chalking it up to RSD. It's well worth all the tests to rule out something else, especially if it's treatable.
I got RSD in both hands after Carpal tunnel release 2 years ago this July. The following January, after my second SGB, I literally went to bed with a slight burning on the soles of my feet and woke up with the pain increased.
I knew instinctively and by the way it felt it was the spread of my RSD but was sent back to neurologist by my PM for further tests.
They also thought arthritis, lyme disease, even tested for rare poisoning but nothing showed up...it's the RSD.
I tried the SCS about a month ago, it didn't work for me so I got a puppy :) He's the best medicine for distracting me from my pain
Good luck Desi...hope you get some answers soon
Jeanne

Hi Minymo!
Thank you for replying back to me. I am 53. I never had no symptoms like your mom had. none. No I didn't look around, I will now. Thanks again!!~Love, Desi.. aka.. Diane

Hi ya Jeanie!! How ya doing there, my friend? I swear, doctors, shrinks, nurses are very un educated about RSD. My shrienk thought it involved the jaw?? HA! HA! HA! I asked him, if he didn't mind if I left some pamplets with him, he said "yes" please do. So, I believe it should start with every single one of us, be it pamplets, things written out, typed out.. Let's ALL spread the word about RSD. When I got my blood work yesterday, the nurse started putting the needle in my RSD arm and I said wait!! I have to have blood drawn from my left arm!! I have RSD. She said, what's that?? I am sick of explaining, I believe we need to shell out pamplets to nurses too!! sorry Jeanne for rambling on here. LOL
Ya know, Jeanne.. Your so right on about the tests to rule out something else!! thanks!
:)
Ok, so your the one who had the carpal tunnal release surgery(Like me) I sure hope and pray this is not going to my left hand as well, as this hand is swelled, hurts too!! I had the surgery Jan. 9,2007 So, it's been about a year since I got the RSD from it. My surgeon caught this fast!! I was in denial about RSD(At first, I did not know what RSD was) and then when I did, like I said, I went into denial mode. It took five docs and a specialist that only deals with hands and wrists to tell me it was indeed 100% RSD
I had 8 SGB and my PMD said.. no more!! As they did nothing!! Towards the end, it made my RSD flair so bad. The pain was awful!! :(
I will know about the tests on Monday, I guess since I had the ex-rays done and blood drawn late afternoon.
Awwwwwwww. So ya got yourself a puppy!! So, do tell.. what is his/her name?? I have three cats, all males. Frisky is 16 yrs. old (Poor baby, moves so slow these days, but my vet said he is doing well for a old cat) Then there is Sammy, he is 2 yrs. old and I have the baby, Andy.. he will be a yr. old July 4th. And just petting them, listening to them purr beside you is medicine. I still hurt though!! LOL Love ya ~Desi

Please Say It Isn't So/ Reply
 

Hi: We haven't met yet. I just joined this group a few days ago. I have had RSD for several years now abd one thing I can tell you is it is unpredictable! It can move that fast or slow. It all depends on the person. My original site was my right hand from surgery.I have totally lost any use of it now plus 90% use of the left hand too.

My feet were fine, until I woke one morning after about 2yrs after being dx'd and I couldn't walk! Not 1 step without screaming in pain and falling down. Overnight;go figure. They did every test in the book. I went to a neurologist,orthopedist,several types of arthritis/bone specialists, oncologist and still nothing. MRI's, 20+ vials of blood (taken over several days), x-rays, everything. I hope your doctors do better than mine. I can walk a little now some days, with medicine additions and changes. But now it has spread to my jaw and other places.

Anyway, I hope you find a definitive answer. A diagnosis of arthritis isn't good either because there isn't a cure for that either. I have been getting treated for that. The drugs are dangerous. It seems like once you get a diagnosis of RSD, their is also a diagnosis of arthritis, back issues, neuropathy, and chronic pain syndrome. I saw my pain management doctors billing ICD codes and that's what he has on mine.

So, good luck and I'll be watching your conversation to see how it went.:Wave-Hello::):Wave-Hello::Wave-Hello::Wave-Hello::Wave-Hello::Wave-Hello::Wave-Hello:

Hey Desi,

I am so sorry that you are going through this. As if you haven't got enough to deal with.
I am thinking of you as always.
Love Tayla:hug:

Desi,

You really do deserve a break. Usually with arthritis, the onslaught is a little slower. IMO. There are blood test for arthritis. Most of the time it is the sed rate. I hope that it isn't the spread of rsd or arthritis. Wish there was something I could do to help. I'll be here for you tho.

((((gentle hugs))))))

Mary
:grouphug:

Desi,
I am soooo sorry to hear that you are going through this right now, I hope and pray that your RSD isn't spreading.
You're in my thoughts.
Love ya
Alison

Desi,

I wish you the best & hope & pray that it is NOT RSD. I've been to all the docs, had all the tests, etc & they can't find anything else wrong with me other than the RSD (& fibro). The leg pain gets to me way worse than the hand pain because it really limits the amount I can stand & walk. If I lay down & prop my legs up over the heart it seems to give a little bit of relief. I haven't found anything else to help in the four years that I've had this in my legs.
How do the support hose work for you?
Linmarie
:hug:

RSD causes arthritis.

My doctor told me I was "remarkably arthritis free" when I first got RSD and especially so for someone of my age who did so much physical work. I started getting just little bouts of arthritis three years later. Now I get huge flairs where walking is very problematical but it usually doesn't last long.

I've found that cod liver oil seems to work wonders. I take it in the evening a couple hours after my last meal whenever the arthritis flares. For the first few months I needed it nearly every day but now it's just once or twice a week. If you rinse your mouth out with salt first and chase this FOOD with water it's really not so bad. I've come to almost like it.

The drugs for arthritis have provided very limited relief so I'm still looking for one that works. These drugs are pain killers since there's nothing that can be done now for the disease itself. I find the arthritis far less limiting than the RSD so far almost all the time.

Hi. My issue is in the inner ankle/foot. Very painful. Anyhow did you have an mri done lately? For me when my pain is high nothing can touch that area. I mean no socks or even lidocain patches. It does feel the best keep my leg up a little. What part of your ankle and foot exact? You said it just happened and I know with my other leg I had a flare up that lasted and still comes and goes but it just all of sudden happened. I hope you get answers and relief

Hi ya Linmarie!! It is so very good to see you post! I do hope that life is treating you good! I got a phone call before noon today and the woman there says all my x-rays came back good!! They are all (Including my family dr.) waiting on the resuts of the blood tests now. I asked her if I have arthritis? At first she said no, then she said well, we will have to just wait on your blood tests. She then said she wanted me to fast so they can do a stomache and pelvis test to see if anything is laying on main arteries and such?? She told me she will call back. This scares me so much, but like a good friend who suffers from RSD told me, worring will get you no where. The problem will still be there!! So true, So true. I know I have to remain calm about this. But, darn it!! It's hard! LOL As soon as I awake in the morning my hands look so huge , swelled, painful, then when my feet hit the floor as soon as I get out of bed to go to the bathroom, I actually almost wanna cry, my feet and legs hurt so bad! The hose feels like gentle messages, but early in the evening, I can't wait to take these off, as they start hurting under my knees where the band is. I should try to over lap them. But, I did notice that the first day I wore them from morning to evening and I took the support hose off, my feet were not swelled. They swell up again, when I get up. I told the nurse, about this and didn't tell the specialist who ran the tests or my PCD that my hands hurt, and my feet are killing me, I mean right now, even though I am sitting here typing very slow as my hands are both cold, painful (It only used to be the right RSD hand that hurt)!! Hmmmm.. now, the left?? I keep thinking RSD spread!! Thank you so much for your kind post Linmarie!! I will also keep you in my prayers also!! God bless you sweetie!~Love, Desi

Hi there Imahotep! Oh wow!! the first sentence of your post says RSD causes arthritis! I never knew this?? makes sense though, after thinking about it!! cod liver oil? can you get those in capsule forms at GNC stores(Health stores?)I am taking fish oil. I am on Fentanyl 75MCGfor the pain, and tylenol #3 or 2 tramadols for the break through pain. The pain is still there, I wonder what it would be like if I took nothing for pain?? "A HUGE OUCH" on that! what meds are you on? Well, take care and thank you for this eye opener about RSD causing arthritis!! ~Love, Desi

Hi daniella! I did have a sonogram of my left leg to rule out any blood clots. I haven't had an MRI since Feb.2007. My ankle and foot is about where yours hurts. My legs are killing me too so much. I am always hogging our bath tub, as the warm water is a blessing!! I can't stay in there forever, but as soon as I get out of the tub and my feet hit the floor, I have to sit down in our bathroom covered toilet seat, then hang on to the sink, door, then walk out and it seems like I have walked a mile or more. :(
I too hope that I get answers and relief too. If not, I want to talk to my doctor about going to Cleveland hospital and have a darn assessement. watch the blood tests come back normal. I still kinda feel it's RSD why oh why am I having this feeling that it is?? Please someone tell me?? I am sick of all these tests, blood work, 8 steliate Ganglion blocks that never worked, physical therapy, I was not allowed to do that anymore, as I kept on getting flairs from it!! I don't know what the matter is with me! I am so sorry for rambling on. I will pray for you, to get what you need ,done daniella! Is that your name? If so, I love it! take care of you!!~Love, Desi(Diane) wish my name was Diana!! that's the least of my troubles though! LOL :)

No. My real name is Gina. I like Daniella too. Anyhow what are you going to Cleveland Clinic for? I ask cause I did part of there pain clinic day program and saw an anestesolgist there. I wish I had more answer and relief for you but I am in the same horrible boat as you. I am in so much pain right now in a horrible falre up. Hang in there.

Hi. First if I don't respond again it is because I am moving back to Ca and won't have a computer. Not being rude. First you are not a baby. I do understand though cause sometimes with my mom I know I act like one. I think being in pain and so much unknown can do that to a person. It is like we just want comfort. Yea I have been on so many meds with no relief. It is like my brain does not process. I used to live in MI and why I went to the CC. I made it through 4 days of the day program and then thought I would die in pain so I saw the anastesolgist at CC who wanted to do the catheter. Then went to ucla who wanted to do the scs. All the different approaches and different opinions make things even more confusing. You hang in there too.

Oh Desi, I really feel for you. Having been to all kinds of docs and having all kinds of tests done for my legs and nothing significant found that would cause the pain & swelling for me, I do hope that they can find something that can be treated. (I know that sounds bad that I hope they find something but I mean I hope they find something that they can fixed versus it being RSD) It was very difficult for me to accept the RSD diagnosis (I guess I was in denial) & my PM kept sending me to specialists. I don't think my swelling is nearly as bad as yours is. Personally, I won't consider the SCS & my PM doesn't even bring it up anymore. Don't know whether it's because I'm scared, in denial or still hope that something else less invasive will come up. I did start the fenzian treatments Monday. I have hope with that.
Please keep us informed as to what the test results are.
Hugs & prayers,
Linmarie
:hug:

Desi,

I am sad that your are feeling so down at the moment but knowing you I am sure you will bounce back.
It really does become overwhelming and everyone just has to excuse us from these times where being in bed hiding under the covers seems the right thing to do.:(
It is called self preservation
Glad you have ppl that love you around to get you through this.

ps-Good news about the x-rays

love as always
Tayla:hug:

Fenzian
 

Linmarie:

I am desparately trying to find a Fenzian practitioner for my niece who lives in Michigan. Not having a lot of success googling online to find them. I pray that your treatments are going well.

How did you find out about Fenzian? And please...if you know...how do I find Fenzian practitioners in Michigan (or other midwest states). Any guidance would be appreciated.

Miss Rebecca